Our Little Teapot

One long year

2011-09-18T14:19:00.000-05:00

I miss Mallorie so much today, but the fact that it's been one year doesn't mean I miss her any more today than any other day. There is just no day when the missing isn't profound and doesn't catch in my throat. My friend Linda, who has also lost a child, emailed me today and said this:

Bradley passed away July 9, 2009. It is STILL so hard for me. I've realized that this is not something I'm just going to "get over" - a part of me is gone and I'm different now.

She tried to tell me this almost a year ago, that it might be a little less sharp, but the pain would never really go away, and although I suspected she was telling the truth, I wondered why she was sharing that with me. But her words rang true, and she was very careful with her words, because she said she knew I was so fragile and that almost anything said at that time could be painful, but still, she needed me to know I was never alone, and she was always there. Today, the only, and I mean ONLY (though I find it so hard to write this down) thing I "might" just be able to call a blessing about having lived through the loss of my child is that today I can read something like what my friend wrote and weep, because I know what Linda is saying. A part of her is gone, and she is not the same Linda I went to nursing school with. Do I wish I were ignorant of this pain? YES.

It is impossible to make this pain make any sense in my own mind, because every time I try to give myself a reason why there could possibly be some purpose or blessing (for someone else) in this loss, my heart breaks, and the reasons I come up with seem limp. Just being able to tell myself that I would not have felt able to drive out to see Cathy at the hospital if Mallorie were still here is simply not enough to ease my heart. It doesn't feel like a good enough reason at all, but this endless exercise seems to be what my heart feels it needs to do. To find some meaning for the pain. Because at least I've discovered this: the only thing that helps (me) at all is to reach out to someone else suffering, because finally, I understand a little bit. I understand the pain Cathy feels as she tries to hold onto hope when daily the news from the doctors is grim, because they can't speak hope aloud in that room because they believe it is wrong to give a family "false hope." Annabel is in the very same bed where Mallorie began her struggle, on February 11, 2010. Cathy is sleep deprived, probably not able to eat much, and so, so afraid, even though she knows that God has always loved Annabel and shown His amazing power of healing through her. Because she knows that sometimes God simply says that what we are asking for is not the best right now. It's that part that the enemy uses all the time to tear at my heart, because it works, now.

But Cathy and I also know the true part is that He has ALWAYS loved Annabel (and Mallorie). And because He gave those girls to us, we know He loves US. That doesn't ever, ever change. It's what I cling to, because I can never be tricked into believing that He hasn't always adored Mallorie. I (thankfully) saw Him sustain her in far too many situations to forget, when only He was able to make the predictions a lie. So if one example of His care and His power can temporarily seem to be explained away by the enemy, there is no way my heart or my mind can be manipulated to forget all those other times.

When she was born with a large opening in her spine that was leaking spinal fluid, and did not die within moments (as happened to another child whose mom I met). When she was not given immediate surgery, as we were believing would happen after having her transferred to a hospital a couple of hours away specifically FOR that surgery, and no plans were being made to do anything for her beyond "comfort measures" (whatever those were), yet He sustained her, and temporarily stopped all apnea episodes. When her neurosurgeon months later told us he felt she "could handle the increasing head size," so he saw no reason to give her a shunt (the very same shunt he had told us when she was not yet one day old that she would likely eventually need, so maybe we shouldn't bother closing her back, to spare us and her all of the inevitable complications that usually arise). When we all forgot to notice how many days had passed without her being able to be fed after she had a complication from a surgery, and so she survived on some simple IV fluids and the power of the God who created her. When she stopped breathing in my arms and I begged God to not take her from me, especially not while I was alone and at home, and He answered my prayer with a resounding yes.

He sustained her. Good medical care and breastmilk and all the quirky supplements in the world were not enough to explain how she thrived. He wanted her here, and gave me dreams before she was born to show me how she would be born alive, and survive, but I couldn't dare to believe them, after the things the perinatologist told me about how she would NOT survive and that no doctor would touch her. So He showed me slowly, patiently, example by example, that He was entirely capable of doing the unexpected and even the impossible, because He wanted her here, with us. He loves her, and always has, with a crazy and unimaginable kind of love.

So today, even though my heart struggles with the fact that sometimes God says, "No," to our pleadings, I also know that usually He loves us with a "Yes." And only sometimes, with a "no," and those times are only because He has something better. I don't feel that truth every day, because not having Mallorie right here in my arms does NOT feel like "something better." But all those other yeses in Mallorie's life history remind me that my feelings aren't going to always be a reflection of what is true, because what is true is that God loves Mallorie, and because He gave her to my family, HE LOVES MY FAMILY in a crazy kind of way that we didn't earn and didn't deserve. So I know my God's character, and I know He loves. And loves to heal, and to give amazing gifts.

So today, I am praying for Annabel to be healed and to come back to her home, fully recovered, and Cathy must know I also am praying she will be able to tolerate some of that good home-cultured kefir that helped to heal Mallorie's gut. :)

And I am praying for John's neck, that he will be able to sleep and that he won't need surgery.

And I am praying that God will place every person and every thing in place so that one tiny little orphan in another country, who appears to need a shunt as badly and probably even more badly than Mallorie ever did, will get that procedure quickly. I only know her by her nickname, Karina, given to her by Reece's Rainbow when she was still available for adoption. The adoption laws in her country have changed, and now she appears to be unavailable to adopt until age 5, and her hydrocephalus is progressing, and she appears forgotten, because now no one can even fundraise on the RR site for her adoption ... because she's not adoptable, right? But I know better.

And I'm asking Him to continue to heal my friend Linda's heart. And I am asking Him to heal me, too, both physically and emotionally.

I know there is someone who loves my friend Cathy's little girl, so very much, and created her exactly as she is, so we could understand that "special needs" truly does mean special, ... extraordinarily special, and doesn't want her to suffer, or her mommy to suffer ... unless He has a plan for even that. Who loves my husband more than he will ever think he deserves, and is proud of who he is, and doesn't want him to suffer or to have a surgery ... unless He has a plan for even that. Who wants to heal "Karina," who right now seems to be forgotten, but He hasn't let me forget her, and I believe He can do something unexpected, and maybe His plan is to bless His church by giving them a chance to play a role. Who can and will heal me if it's part of His plan, to allow me to continue to fulfill the purposes He has for my life. And who loves my friend, Linda, and will continue to show her how very much He does. So I continue to ask him for these sorts of things, because I know Him; He knew exactly how my youngest daughter's body worked and she not only survived, but she thrived. And right now He has her safely with Him, and I think He usually says Yes, but He always loves us in the best way. And even when we don't see the purpose, and beg Him to spare us this, He will sometimes give us the gift of finally understanding another's suffering, because we experience something like it.

So I hate to write this down, but I will. I am thankful that He decided I needed to understand the pain that a mother experiences when she loses a child, and that it doesn't get better after a year (or more). That He continues to work to heal the wound, but it is a wound that changes you completely. So I know better how to pray, ... because I know a God who hears me.

2011-03-23T22:47:00.000-05:00

My new favorite quote.

2010-12-27T10:03:00.000-06:00

It takes a village to keep a special needs parent from jumping off the roof. (Christine Moers)

I got a call this morning from someone I know whose little girl is back in the hospital, a couple of hours from home, and it reminded me of the way life is for families of medically fragile children. We, of course, would give anything to have that life back, if it meant Mallorie was here with us, but still it is a life with some very hard times, and we were carried along by so many loved ones, medical professionals, and generous strangers.

Maybe you know someone today who could use encouragement, and God's touch using your hands.

Annabel and Cathy

2010-11-28T20:11:00.001-06:00

Annabel is in the hospital where she can get IV antibiotics. Cathy mentioned strep, fever, vomiting, being "out of it."

I know Cathy was up all night in the ER last night and is really behind on sleep. But Dr. B was the one who admitted Annabel, sweet Ida got 2 IV's, and Telecia answered the phone when I tried to call Annabel's room. If I understood Cathy correctly, even the ER nurse who usually cared for Mallorie and always got a scalp IV for her, was Annabel's nurse in the ER last night. Annabel and Cathy are surrounded with love, with people who know them. It's not the same as being at home, but it's better than being 2 hours away. Her sweet husband was able to bring her something from Subway, and everyone there knows Cathy and her girl. It's a good place to be.

Please pray that Annabel responds quickly to the antibiotics, and that Cathy manages to get some sleep. And since sometimes mothers second-guess every decision they ever make, I'm praying that people say things to her like Dr. B did .... "Cathy, she got sick. You can't prevent that."

Thanksgiving

2010-11-25T23:36:00.000-06:00

Tonight I came to Mallorie's blog to look for updates from other moms on their babies, and for updates on those who have lost babies. I only know a couple of the moms I've linked to in "real" life, but the others have become real to me, too, because of the things we share. We've been chosen by God to love babies who some people have problems accepting, and we all are so grateful for this. First, because we have learned that we were wrong to pray for only healthy babies (but we didn't know any better), and also because we all realize at one point or another that we have been given the chance to love babies who might not even have been allowed to be born on their own terms, if they had been given to another family. We are grateful that we had the chance to give them their lives, however long or short they might be. And to love them and be loved in return.

Because some of them have lost their babies, as I have, they share things about their grief journeys that I feel, but just can't put into words, and reading them helps me. Or their babies are alive, and they celebrate small gains the way I always did, and I get that. I am grateful to see in their words, the passion they have about their "special" daughters and sons. Babies whose very lives fill their parents' and siblings' hearts with love, but babies who some very educated people have spoken doubtfully about. Even unkindly. Babies who have had very grim predictions pronounced over their beds, and documented in their medical charts.

Babies who have been created by a God who does not make mistakes when he forms His people, no matter what is written down anywhere else.

I use the sidebar mostly to check on blogs, and I really need to update that sometime. I don't have the energy for keeping up with reading these much, and while Mallorie was with me, I didn't either - and also didn't usually feel that I had the time. But I'm glad those blogs are there, because sometimes I need to find my way to these stories, to learn that I need to pray for an upcoming surgery, or a birth, or maybe I think I have a suggestion (not lately) that could help. Or I just need to read the words of someone who knows what I feel. Carley had sent me the link to her post, "100 things I am grateful for," and I wanted to write something like that, too. I have more than 100 things. My list is never-ending, but I just can't complete anything I sit down to write, so instead I just went to read, and I saw this: http://iseeloveblog.blogspot.com/2010/11/renewed-thanks.html, posted by the mom of a beautiful little girl named Lily, who happens to have Trisomy 18, one of the genetic conditions that Mallorie might have had, though we never got the testing to tell if she did. I had already heard about Jedediah, the little boy that Lily's mom posted about, because his mom belongs to the Trisomy 13 parent group I belong to, and she had sent the link to his blog. The post Jill linked to broke my heart, though. Jedidiah's short life was filled with too many hours of fighting on the part of his parents.

We never got genetic testing for Mallorie, because Dr. R, a specially trained doctor who did Mallorie's in-depth ultrasound, told us that he was sure she had either Trisomy 13 or 18, and if she did, "No one will touch her." I will always be grateful to him for telling us this, because it was echoed later on (same day) by a local mom who had lost 2 babies. One within moments of birth from a burst sac on his back (he had spina bifida, just as Mallorie did), and the other after 18 months, because he had holoprosencephaly AND spina bifida. Neither of those caused his death, because mom chose a c-section when she learned the second boy also had spina bifida, and she wanted to prevent the back from opening, and she had to leave her OB and find another one willing to do a c-section for her, and that was no easy search. But when they requested surgery on his back, the doctors at the very same "children's hospital" Mallorie was transferred to for the very same surgery in her first day of life, refused to do anything for him. It took months before they found another hospital in Dallas where a doctor finally agreed to do the surgery, which was a success.

So God let us know very clearly what we would be up against, long before Mallorie's birth, and I told our pediatrician we expected to have to go to Dallas for surgery on her back, if our baby lived. And I said I did NOT want genetic testing. Knowing Dr. B did want testing - she always said, "Knowledge is power," - I added that we could always get it later, but for now, no. She didn't argue with me. None of us had a lot of conviction we would be lucky enough to have Mallorie for very long, but we NEVER had to argue with Dr. B about giving Mallorie a chance. About a month before the adjusted due date (I am certain Mallorie was actually born a couple of weeks late), Dr. B asked us for a birth plan. I had read online birth plans, and had even sent her a link to a sample one I had found online for a baby named Abigail, who had Trisomy 18. But as we got closer to delivery (which the "books" told Dr. B could be a month early), and Dr. B wanted us to draft our own birth plan, I just couldn't, so I tried to ignore the question. John and I had ideas but we couldn't articulate them to each other, much less write them down. Well, I guess I couldn't write them down. John was much better at it, if I'm honest. But I didn't want to even meet with her, because it felt so final. And, what if we said one thing, and things looked very different to us at birth? I didn't want us to be held to something that we changed our minds about. I had never had any experience with anything like this before, but I had a very strong feeling that writing the "wrong thing" down could be dangerous for an unborn baby. Dr. Brown reassured us that she only needed to have a very clear understanding of what our wishes were, so that she could honor them. That she would be with us the entire time, and would never dream of not allowing us to change our minds on anything, but she just needed somewhere to start, and to be able to tell the nursing staff and the NICU doctor what our wishes were, so there would not be any confusion. So with her help, she wrote down what she got out of us the day we sat in her office at lunchtime. Our plan included oxygen if needed. IV. Rescusitation and intubation if needed. Because I told her, we don't know, none of us know until she is here. (I thought she was a girl, but no one could ever tell us for sure.) Let's wait until we see HER, to make our decisions. Let's find out what there is to find out, before we try to guess if she has a chance to live or not. We can always change our minds if it looks like she has no chance of survival, and it can be a very compassionate way to let her go. I knew that being intubated would mean she'd get some sort of sedation, and that didn't sound like "suffering" to me. I'd seen babies on vents. Being on a vent is not a terrible thing and may not need to be permanent, but not doing anything - if it's needed - before we knew anything, well that would mean no chance at all. She might need only very small bits of help to survive, so giving her the assistance she needed at birth would give her a chance to get the help. It would also mean we had the time to really understand her, to see how she did after delivery. Because before birth, she was doing just fine.

This is not how it was for Jedidiah's parents, and it is not how it has been for many other babies like him. But Dr. Brown had been praying for Mallorie before she even met her. She said that she had trouble falling asleep the night before the labor induction, until she gave the situation over to God. She had told us as soon as we told her about the ultrasound, that she was our "instrument." She would be there the entire time at delivery, or not, whatever we wanted. She went into that delivery room after asking God to make things clear to her, so she didn't have to try to "make" decisions or to guide us to make decisions. That it would be clear. And God answered that prayer for her. Jedidiah's parents requested a cardiology consult. And there was a fight for that. When we had met with Dr. B to write down the "birth plan," I told Dr. B we really wanted the local pediatric cardiologist, a man I know and highly respect, to look at Mallorie's heart, to help us know what it was like, in case there was something so "wrong" about it, that it would tell us that she would probably not survive. We never saw Dr. K, but I know he saw Mallorie's heart very early on, because either Dr. B or the neonatologist gave us the report when they were telling us that they recommended transferring her to the children's hospital for surgery, because her back being open was an immediate threat to her life. I used to remember almost word for word the report he had given them, but it was something like this. That she had several defects, but that many babies have those same defects, and live with them. That they did not look like they would be an immediate threat to her life, and that if she needed surgery for any of them, it wouldn't be right away.

So even when we got so many different stories about her heart in her 2 months she spent in the NICU at the other hospital, I held in my heart the report from Dr. K, that her heart was not the problem. And ultimately, he was right. Her PDA, ASD, and VSD all closed over time, with no surgery needed at all. But I needed the "promises" we got from him, to carry me through those early months. He offered us hope.

Over and over in Mallorie's life, God gave me people who told me truths that I had to hold onto during times of crisis. Another family I met while I was pregnant, after I told them what was seen in the ultrasound, urged me to insist on a c-section. Their child had spina bifida, and the mom had a c-section. They were a little intense about it, and wouldn't hear that I was still waiting on God to tell us what we should do about that. But what they didn't realize, and I realized months later, was that God was giving me His answer in that very visit. Not at all the message they were urging me so strongly to hear, but the message in their child's story, which was that when the mom's uterus was opened in the c-section, the sac on the child's back, where the spinal cord had been protruding through the opening in the spine, had started to deteriorate. They told me there were only strands that shredded when the doctors tried to pick them up, and they were useless for closing the back. The message from God in that visit wasn't the message that family wanted me to hear so desperately. It was this: I will do what I will do. You cannot control this. I am completely in control. I know that was the message, because months later, when Dr. B said out loud in that quiet delivery room, "The meningocele burst," I needed to know that. I couldn't remember it for awhile, but God reminded me later on. Because I had gone into delivery believing that a burst meningocele was a death sentence. That first mom I spoke with on the day of the ultrasound told me that. The 2nd family with the girl with spina bifida tried to tell me that, but it was silly, because there was their girl, alive, cracking us all up with her antics.

So what I have learned is this. Ultimately, what is needed for a baby to live out his or her life, however long it is meant to be, is to be wanted. That might take awhile to get to, if you have been praying as we did, for "just as long as the baby is healthy and there are no problems," and then you get results of an ultrasound or other testing that say there are problems. But in time, you can arrive there, to be ready to love YOUR child, the child God chose for you. And what else is needed is to be offered what would be offered for any other baby, if there are problems. Maybe that is oxygen. Maybe not. Maybe a feeding tube, if feeding isn't successful. Maybe not. I don't mean that I or anyone else can know what will be necessary or what should be provided, just that simple interventions should be offered if the family wishes. Just as they would be for any other child. The neurosurgeon told us the day after Mallorie's birth, when we asked WHY her back hadn't been closed and when would it be closed, that they were waiting to speak with us. That they felt we "didn't realize what we were asking them to do," that he didn't think we understood that if they closed her back, she might later have hydrocephalus. Well, sure. I had dreamed she had hydrocephalus near the end of the pregnancy, a very clear dream of her. The ultrasound we had right afterward confirmed that she had it. So if it was not a problem right now, what with all the SPINAL FLUID dripping out, it still was reasonable to think it would happen later, when she had the spine closed. He said, "Well, if she does have hydrocephalus, you would have to decide whether or not have a shunt placed to drain off the extra fluid in her brain." "So then we would want you to put in a shunt." He said, "Well, I don't think you undedrstand. If we do that, then she would have to be monitored for the rest of her life for shunt malfunctions, and infections. She might need other surgeries."

I remember feeling that I was talking to an insane person, and it sent a chill down my spine. How do you reason with insanity? This was a neurosurgeon, who did these procedures day in and day out. Repaired meningoceles. Put in shunts. Did shunt testing. Repaired or replaced them as needed. Why was he talking as if these were outrageous requests for a baby, when NOT closing her back was putting her at risk for infection going to her brain, and death? I wanted to ask him, but words failed me as I choked back tears of frustration, to do for her what he would do for any other baby he found lying, abandoned in the street, with a hole in her back. Wouldn't he pick her up and rush her to surgery to close her back? What was the resistance?

So this is sad, but I wish I could tell everyone who knows they will give birth to a baby for whom dire predictions are made, to write down a birth plan that says ALL life-saving interventions are requested, and to get the doctors who will be there to sign it. There is no risk that the parents will be "held" to THAT plan, if things look pretty bad at birth, and their hearts tell them that they should change the plan. That many doctors and nurses will be GLADLY willing to withhold care at any point, if the parents request it. That likely, there will be medical personnel falling over themselves to get the chance to speak great predictions of death over their baby, and the real fight will be to hold onto hope, and to try to discern if the grim predictions are true, or only coming from outdated medical textbooks. Because the truth is, even if they choose such things as oxygen if needed, IV if needed, NG tube for feedings if needed, and other such minimal interventions for problems encountered at birth, there may still be resistance. There may be a fight.

But for one very lucky family in Beaumont, in February 2007, there was a different story. A neonatologist and pediatric cardiologist were waiting for the birth of a special baby. The nursing staff were ready. Extra nurses gathered in the room when the time came close, and one knew how to comfort, because she herself had a girl with Down Syndrome. Another had lost a baby either before or soon after birth. Friends and siblings gathered in a nearby room, praying. An obstetrician lovingly held out her hands to receive the gift God chose for the family. She handed the little GIRL to the hands of the pediatrician who had moments before been holding mom's leg for pushing. The pediatrician looked in the little girl's eyes, knew her parents wanted her to be called Mallorie if she was a girl, and Mallorie looked back at her and told her, "I'm here for the long haul, chick."

And I am so grateful. I have more than 100 things on my list. These were just the beginning.

Imago Dei

2010-10-19T01:23:00.003-05:00

It doesn't feel like it's very often that I stumble on something that can say JUST what I am thinking or feeling. I have been thinking all day about Mallorie, and her beauty, and how impossible it is to explain the phrase running through my mind, the one that's been running through my mind since they day I met her. Image of God. She came to us, perfectly meant to be her. Exactly her. And created in the image of God.

We felt "right" in some choices we made about surgeries or treatments that we believed would help her health, and not change her essence, but in our family, we all admitted to having strong reservations about some things ... like letting her have cleft palate and cleft lip surgeries. If somehow we could have done just palate, I think we'd really have struggled there, because the lip didn't feel like the issue, anyway, the thing that put her at risk for sinus and ear infections, meningitis. But after the first surgery, that beautiful, kissable lip

was changed, so stopping at that point wasn't really sensible. So we continued. Even though she smiled so broadly that she split the first lip adhesion apart within a few weeks!

So she had to have it redone, entirely, 3 months later. That's a whole other story.

Created in the image of God, so she somehow, even with her differentnesses, was a reflection of the same God that the more "regular" people reflected, who expresses Himself through humans in a way that is unique from what He does with His other creations. Being created in God's image means a person has value that doesn't depend on anything they can do or provide, but just because they contain God's image. For some reason, in order to show us who He was through humanity, God created a beautiful little girl with 9 fingers and the kind of arms that made an orthopedic surgeon feel really compelled to suggest straightening. Maybe Mallorie's uniquenesses were necessary for her to show us something that no one else could show us about God. Or maybe His image has nothing at all to do with how many fingers we have, or limbs, or ability to walk or ultimately even to smile or talk, since she lost those abilities in February. I honestly don't at all know what it means for us to be created in God's image, since Mallorie was born and I realized that this concept referred to her. But the phrase is running through my mind a lot these days, and today I found an artist who took my breath away. His name is Tim Lowly. And he created an ink drawing (of his daughter, Temma) which he called Imago Dei.

I wish I could do art of my children like this artist can, but at least today I was able to scour the internet for a chance to see more of his work. He seems to understand what it means. I know Illinois isn't as huge as Texas, so someday I hope Jessica will go see this man's work in person, for me. :)

Sad, lost, grateful

2010-10-04T23:21:00.003-05:00

Everyone is asking how I am doing. I don't know how to answer, or how to function, really. Today, I saw a woman I used to work with, years ago, who had retired from working as a unit clerk on the pediatric unit where I used to work. She looked 20 years younger than I remember her looking; retirement is good for her, and I asked what she has been doing to keep busy. She says she can't sit home doing nothing, so she is a foster grandparent, and right on cue, a tiny boy came in and was told to say hi to "Grandma."

Then she asked me if I am still working on pedi. I didn't know how to answer; I don't work there anymore, haven't in a few years. So much has changed, so what do I share? Within a couple of minutes, I blurted out that I had had a baby, with "special needs," and we just lost her 2 weeks ago, and my eyes welled up with tears and I couldn't add anything else. She didn't know what to do, and I suppose we weren't anywhere near close enough for that sort of sharing, and I ordered my son's sandwich and moved on. It wasn't the first time I've done that, shared my deepest part of my heart in the past couple of weeks with someone who was just wrong. I realized that I've read this sort of thing on other blogs, where girls have lost their babies. I just don't remember anyone saying what was the final solution? I am torn, because I don't want to share my broken heart like that with someone who isn't even close to me, but I also feel that not sharing about her is somehow denying that she existed, that she pervades every bit of my consciousness. I don't believe an hour goes by when I am awake that I haven't thought of her at least a dozen times.

I had to go back to work on Tuesday after the funeral on Friday and cremation on Saturday. I wanted to hide in my office and not see anyone all day, but nothing is like that. I realized pretty quickly that people know. Some people I probably have never even met, know. Sometimes it is a sweet blessing that lets me know. One woman on my old floor came to me, hugged me, and just said over and over, "God be with you." Other times, there is an awkwardness, because I'm asked how I am doing, and we all know there is no good answer to that, so I mumble something, smile, thank them for asking, and wish I had a lock on my door and a mail slot, and a fax and printer on my desk.

In my work situation, mostly I have chosen to say nothing at all during conversations with parents who I know already know of my little girl, but the visits are not about me. They are about THEIR child and their medical needs and their worries about upcoming surgeries. So I spend a lot of time at work and other places, pretending that nothing at all has changed in my world, and I’m just a nurse going on with my job. And wishing I could be invisible, or that I could even more, just stay home with my family, holding them when they cry. Not just checking texts that beg me to call so they can talk.

I had a meeting to attend later in the week, and a couple of hours into it, someone began talking about a girl who is in a vegitative state, "and the family just doesn't see it. They keep believing that she will come out of it." I was in a moment of shock, and thought, I know that is what some people thought of us. Thank GOD her parents are like that, and they hold out hope for healing, and refuse to not believe that the God who created their little girl can also heal her. But what the hell is vegitative? Can a human being, created in the image of God, really be called by anyone, "vegitative?" I realized that my heart couldn't take where the discussion might be going, so I grabbed my cell phone to pretend I had some important phone call to make, and it crossed my mind that I don't have an excuse anymore for taking calls in meetings like that, but I had to walk out. I AM that mom, and John IS that dad. We knew and we still know that God knew before He created Mallorie, what her last day on Earth would be like, and He loved us enough to figure out the details to provide us assurance that He was there, He had not forgotten. But even though she is not here with us, and even though He did not heal her brain and return her to full health to live several more years with us, I still know. I know that we were not hoping in vain. Because of Mallorie, I know some of what God is capable of, and when I wasn't sure that I could remember, I asked other parents.

I asked Alicia how long until Gavin responded to them after he had his stroke, and recognized his family. I asked a parent of a child whose son had a very serious meningitis, and was predicted to not survive, but over time (9 months, I believe she told me), he woke up and responded to her, and today he is doing homeschool courses with his mom. I took those stories into my heart, so when the overly persistent resident kept trying to drag me out to LOOK at the CT of Mallorie's brain in May, I didn't care. When one of the stream of neurologists, just meeting me for the first time, stood in the doorway to Mallorie's PICU room one day and told me that he "didn't think we would ever get control of her seizures," I gave him a tired smile and told him that I had more optimism for Mallorie than some of them seemed to, because I knew other children. I was willing to wait for her to heal, before I really worried that way. And what I probably didn't say was that Mallorie never really lived her life by predictions.

But now, I have to go to work, and sit in a meeting where someone talks about a vegitative state, and someone else says in a role play, "Are you retarded?"

Mallorie has changed me. Before Mallorie, I had already been sensitive to words like the R -word and some other pretty ugly words used to describe human beings, but back then, I just saw people who persisted in using those sorts of words as uneducated. I felt sorry for them, for their ignorance, and looked for ways to educate them without making them feel as foolish as they sounded. Because they didn’t know, I assumed. At least until they persisted after I’d educated them. :) But now, those sorts of words pierce me to the heart. They didn't while Mallorie was alive, really, because I refused to own any such definitions for her. Mal's kidney specialist surely thought I was a nut the day she asked me if Mallorie had any delays, and I said, well, how would we know? She's a baby, right? She seems just like a baby to me. Let's give her a chance. I refused to have the Early Childhood crew do any "tests" on her, because heck, I have heard what people say it feels like to have someone spell out in months exactly HOW delayed their precious child was supposed to be (even when the child had physical disabilities that prevented them from responding the way another child might, so the testing, itself, was flawed). I had looked at the sorts of things she'd be tested on, and figured if she couldn't use her hands to grasp, then how in the world could she "pass" on a skill that required she be able to do just that task? So we chose the no-testing route.

But now, things are different. Now, I will accept if she had an actual chromosomal difference, because I accept all that is/was Mallorie, gladly. Maybe it was an extra chromosome that made her so adorable, so cuddly, so joyful. The "denial" that I'm sure it looked like I had was never an unwillingness to accept her limitations or embrace every inch of who she was. We LOVED and still love the uniqueness that came along with her being exactly her. I only denied those labels out loud, and refused to go blindly along with others giving her labels. Initially, it was because she wasn’t supposed to live long after birth, and I wanted people to know her as a beautiful little GIRL by the name of Mallorie Rose, not “that baby with trisomy-13 or Trisomy 18 in Room 313." Pretty quickly, it became a way to prevent anyone from gaining "proof" that they could use against her when deciding about surgeries or other interventions. When the NICU fighting days were over, eventually it became again just wanting them to see HER. To prevent them from limiting her according to what they could see or read about her, instead of waiting to see HER unfolding. If she was "retarded," for lack of a better word, then we just never had to see it before, because as Matthew said recently, she was like any other baby. She had a first smile, a first tooth, a first time she laughed, her first babytalk word, the first time she realized she could see and move her hand, so she could play with it. We never, ever had to define her by those sorts of labels that I suppose are useful for people that need to plan lessons or write up medical visit reports. Because we always intended to homeschool her, just like all of her siblings, I felt she was blissfully free from all those names.

But now that she's gone, God needs to help the people around me who just don't know. In their not-knowing, they are going to say things that they have NO idea could hurt anyone in the room with them. I know now that I must have done things like this, myself. Because I am the queen of saying random things, all the wrong ways, especially when I am stressed, I already recently have heard myself stumbling with saying things all sorts of wrong ways, and had to make apologies, and I'm not even sure what I've done or said wrong, but I can see it in the eyes, that I've stepped on a wound. So I know it's ignorance mixed with innocence, but I don't know how many times I can just look at my hands in my lap and not say anything. Suddenly, these words mean a lot to me, and I want to shake people and say, “Were you looking for a word like ‘silly’ or ‘goofball?’ Because the word you just used is a medical diagnosis, not a funny slur. And someone might be hurt by the way you used that word.” Like me, or my husband, or our children.

I miss Mallorie all the time. So much. And I cry if I say it, every time. Even if I just say it to myself, or write it in a text. I'm grateful, you can't even know how much, to God for thinking of me when He thought of Mallorie. Messed up me, and as precious of a gift as she was for our family. I can never go back to wondering about whether I really make a difference in this world to God. He let me have her, and he sustained her through all those precarious moments and hours and days and weeks and years. He gave us months and months of relaxing in just how medically complex she no longer seemed to be! He let us see her personality blossom. He let us hear the cardiologist's proclamation that her heart was "perfect," after he watched her grow and develop for 3 years. He allowed us to watch how nursing moms who never had met her would be willing to give her milk to help her grow. He let us hear her laughter and baby talk.

There was a time when I said to myself that while I was grateful, because we "got" to have her as a blessing, I felt a little sad that her meaning was "wasted" on the doctors in Houston. Dr. B truly "got" her meaning, as did others like the OB who delivered her (what a beautiful email she wrote to the priest, which he read in her funeral). But by the end of her life, I began to wonder. Sometimes we never realize who or what moment changes our thinking, but we can be changed by an interaction, some words said. It's enough for me to know that she was there for so many months in Houston, so there must have been people she touched even there .... even though some of them had never been able to see her bubbly personality that was so evident before February. It seems impossible that she didn't have a purpose for that time, too.

I miss her so much, but I am so grateful that we kept having kids long enough to get to Mallorie. :) Every one of our children is unique, some more so than others :) .... but Mallorie .... She was so worth the wait.

This was one of her favorite songs. She was on my lap when I was playing that viral youtube email of the pink glove dance, and realized that she loved moving to its beat. Just like Bob Marley's singing.

Yesterday I learned that she and Bob shared a birthday.

Online Memorial

2010-09-22T22:02:00.000-05:00

http://www.broussardsmortuary.com/memorials.asp

http://www.broussardsmortuary.com/memorials.asp?page=mdetail&id=7048

And the obituary:
http://www.broussardsmortuary.com/services.asp?page=odetail&id=7048

2010-09-18T14:43:00.000-05:00

Mallorie died early this morning. Somewhere between 4 and 5 AM. My mom is trying to catch up on sleep (she hasn't slept much in too long) and she doesn't have the heart or energy to post this right now. I'll let her revise or delete this and write her own when she's ready, but I think a lot, if not all, of you would like to know.

She was admitted yesterday morning to our local hospital by Dr. B. (God BLESS her) after an appointment where her blood-oxygen levels were very low. She had pneumonia, it turns out. Again.

Things went down hill this morning. The staff at our hospital worked so hard to get her heart beating, even doing what some would consider "extraordinary measures." They weren't just going to let her die. It was when my mom knew that she was gone that they stopped. No one gave up on her. Not one. The staff loved that sweet baby and treated her like any other. They are such a blessing to us.

Carley

3 guesses

2010-08-29T00:58:00.000-05:00

I don't even want to count the number of hospitalizations this girl has had since February 11.

I also don't want to count the number of times that we've been told someone has found "the last" IV site for this girl. It's the thing that ate its way into my brain and made me want to drag her home with a PICC line on June 30, even though we had nothing that needed to be given in that IV. So we flushed that line twice a day, checked for blood return, heparinized it, ... until it gave back no blood return, even after we got it de-clotted. So I let it go. I had said all along, that when we lost blood return, I knew the next fever, it would be taken out, because no one would have a way to know if an infection was in the line. And I said at that point we'd be back to just trusting God to find her another vein, ... or grow a new one. And of course, He has done that. Twice. Both of them have lasted as long as they were needed, to everyone's amazement. And two well-loved nurses have not even hesitated to let me cut away some hair so they could try her scalp. He takes good care of her. And apparently, doesn't need much help from me. He has nurses and doctors and respiratory therapists for that.

Every hospitalization, I get to learn something(s) important that we need to be able to care for our girl. This time, one of those things was the importance of positioning and CPT. If I ever wondered if it "really" made a difference, I know better now.

So we know these things.

Mallorie does, too, have IV sites. Or she will when she needs them.

An oral airway is a blessing from God, and in our lives, is superior to a tracheostomy.

Diastat for seizures is amazing. Better than IV Ativan.

There is no end to the peace that comes from telling people she is having a seizure ... and going to get something for it, instead of going off to "discuss" and coming back to say they want to watch it for awhile. I still have my guard up, even after all this time (since June 30), expecting to have to argue for treatment, but no one is arguing. Even when they are still learning what Mallorie's atypical seizures look like, still no one is doubting, and since hers often can bring on respiratory difficulties, this is a blessing.
Tylenol can sometimes stop her from heading into seizures. This I am begrudgingly admitting, because I had to learn it from one of the residents in Houston. I was not very happy the day I had to learn this, but today I am grateful to that resident.
A great pediatrician makes life easier than you would ever think possible. A great pediatric group multiplies that blessing 5 times over (soon to be 6). And a smart neurologist who is able to be reached by phone, and who your awesome pediatrician group happens to like, as well, is a gift from God.
If you are really, really lucky, one of your relatives might decide to become a pediatrician and join Dr. B's group. So when Mallorie turns 21 or whatever magic age she'd have to be when you usually have to find an adult doctor, you can try to pull rank as "family."
Kefir is nothing short of a gift from God. Still learning about this stuff, but it's cured Mallorie of the diarrhea we had been battling since June ... and prevented c-diff, despite all the antibiotics she had to have this time.

Oh, I did get one set of labwork out of that crazy PICC line. One very relaxed blood draw done from the safety and comfort of our bedroom, and dropped off without having to bring Mallorie out in the heat, with results in a few hours. So it was good for that. But I really ought to have learned, by now, that God will come through and really doesn't need my help.

Feeling Very Undancey...

2010-05-18T12:40:00.003-05:00

"Feeling Very Undancey"

by Arthur Rackham:

Mallorie this morning:

Aww... :\

Eternally Grateful, and Going HOME!!!

2010-04-21T12:02:00.005-05:00

Mallorie's been doing great. She's been doing so well, and I've been in a private room, with a huge pull-out couch, and awesome people here who are always trying to figure out what they can do to help me, so I should have been able to update more lately ... but the closer I get to home, the more the lack of sleep the past couple of months feels like it's catching up with me. You should see me; I'm doing what they tell new parents: the baby naps, you nap. I hope to SLEEP tomorrow, while everyone else keeps an eye on Mal.

We tried out the new home CPAP machine last night. It's so QUIET. We won't even be able to use it to replace the white noise machine!

So we're waiting on John to come get us from Beaumont (~ 2 hrs away), and we are so ready.

But not without a huge thank you to all of those who "carried" Mallorie (and me) during this stay. Unfortunately, I can't even list all the names of those who have touched our lives, and given such great care to Mallorie. Some, like Dr. Bill (who never spoke the words, "I told you so," over the surgery which he had recommended/urged even way back when), and nurse C (who brought me food and cocoa mix and STRAWBERRIES), are old friends. Most were new.

This picture is of the most recent group of those who spent hours observing seizures or sometimes what I thought were seizures, waiting to see how she did with extubation, calculating fluid needs :), listening, listening, listening. I am so grateful; I hope they realize just how much.

And an extra thanks to Dr. M, who totally surprised me and made me step up to the plate, by ordering Mallorie a pureed diet from the kitchen!! Before this stay, I'd never moved much past jarred baby foods, but when pureed broiled chicken arrived yesterday, plus a side of nice fatty gravy, and when the dietician early this morning included olive oil among her suggestions for increasing calories in Mallorie's feedings, I was able to dump the chicken AND the gravy into a few bottles with some fruits and vegetables (and even snuck in our old Baby Calm, for vitamin C), and felt such a sense of accomplishment, because we're going home, and Mallorie is going to be fine. Dr. M already gave me her wise advice about not going crazy (told you she sounds like Dr. B from home), and a good part of Mal's daily intake will still be breastmilk, but we are so much further along today than we were in February, when Mallorie turned 3.

I have also learned that I completely interpret information from the standpoint of my own beliefs, and that I need to be more open to just listening. I've learned a lot more this time just by listening to the ideas of those who came to see Mal daily, and not always countering with why we do or don't do things "that way." This was a huge learning and growing opportunity, and I think I've been able to shut up enough to do some of both of those this time.

And I owe Dr. B and my friend Dr. H from back home, a great big fat apology. I never "heard" you, no matter how you explained it to me. Dr. H, in particular, told me that the fundoplication did not have to cause saliva to collect in the esophagus once the opening to the stomach was reinforced. But I'd heard that somewhere before, and all I could think was that having the procedure without being certain that it was essential, would have meant a tracheostomy. (I do not have any issues with that procedure, if Mallorie should need it, but simply thought one procedure would lead to another and that possibly choosing the first would necessitate something which might otherwise have been avoidable.) So Dr. H could have told me till he was blue in the face that my fears were ~~unfounded~~ irrational, but I couldn't hear his explanation. Because my mind was set, and I couldn't listen. I think it was a good decision to not pursue the surgery 2 years ago, when Mal had problems after just a surgery, but a year ago, when she had the laryngospasm after vomiting? That would've been a good time to listen to both Dr. B and Dr. H on the fundo issue.

But God has been so good to keep Mallorie safe, despite my pig-headedness, and allowed me this 2 month+ "vacation" to be alone with Mallorie to learn.

Home soon.

2010-04-19T23:58:00.000-05:00

Almost ready for home. Looks like Wednesday.

Mallorie is having some trouble getting in as much as she needs (by feeding tube) under normal circumstances, and since she's actually 2 lbs or more below her pre-February weight, this is a big deal. I've started a list of high-calorie foods that can make her feedings more concentrated, like nut butters and avocado, but right now we're working on increasing the volume she takes in at a feeding. There seems to be a back-up plan of nighttime continuous feedings, and even though I am not crazy about that option (I think stomachs need to rest, sometime), I am even less crazy about having to continue waking up to do nighttime periodic feedings like now.

I love the attending who is overseeing the team caring for Mallorie right now. She is all about the details, and isn't missing the fact of Mallorie's weight loss and the need to make sure she will be able to continue doing well at home. She reminds me of Dr. B in some ways. So if she has a plan, I'll do it and stop trying to figure it all out myself. Also, there's an interesting dietician somewhere around here who came to see us last week when we first got to this floor, and she has some recipes she wanted to share. I think if she comes up with what she thinks is a good "formula" for weight gain, then it will be a good place to start. I know that as tired as I am, when I start adding going back to work into the mix, it will be easy for me to lose sight of the whole picture. So I'll happily take all the advice and help I can get from them.

Our house was broken into and some things taken when John was out here with us this time. It's been hard on the kids, and hard on us, and it's emotional for me going back knowing that this happened. It really stinks. It was just "stuff," thank God. That's the part I'm trying to keep in my mind.

Still here

2010-04-18T17:22:00.001-05:00

Mallorie is still in the Progressive Care Unit (PCU), working on getting back to getting all of her nutrition through her feeding tube, instead of her IV. She's doing pretty well at that, but it's a process. At first, her belly would bloat and she seemed really uncomfortable, so we had to slow down. Then we tried some "home-style" feedings of baby food chicken and carrot added to breastmilk, but that really seemed to slow things down. So now most of what Mallorie is getting is this:

I've said before that some children are blessed with more than one mommy. Mallorie is one of those blessed little girls, who right now is being fed through the sacrificial gift that only a mommy can give. Every once in awhile, someone will say something like this: "I keep forgetting to ask you this. Where is the milk coming from?" I don't have a simple way to answer this, but when I do try to explain, I also try to mention that this is a huge gift, and the reason that I would rather thaw and store the milk in a cooler with ice, and get up several times a night to refill syringes myself, instead of having the in-hospital Milk Bank thaw whatever amount they predict she will need in a day, and then stick an expiration date on it, so it must be discarded if her feedings are slowed down or put on hold. And why I prefer the little 60 cc (2 ounce) syringes that must be refilled over and over, to a feeding bag where 20 cc of milk can be lost each time the bag and tubing are rinsed out. No money was exchanged for Mallorie to receive this gift, and no "fair" price could ever be placed on this milk. Each bag was stored by a mommy with other responsibilities, including a little one who's also receiving milk from her, and Mallorie was chosen as the recipient of extra milk that is pumped and frozen. It's so easily digested that one doctor even commented that they want to "challenge" Mallorie's gut a little bit, and breastmilk isn't really a challenge. It provides antibodies to protect her gut, and since I've learned about that "transmigration of bacteria" concept, I believe it's protecting other areas of her body, including her bladder and kidneys. I cannot tell you how grateful I am to have this as Mallorie's first feedings as she recovers from surgery.

And Mallorie got other gifts today, when some friends visited. Her own personal hospital gowns, made by the same talented lady who made Annabel's gowns.

They were delivered in person by Cathy. My thought was that since Annabel and Mallorie are sisters (right?), maybe we'd be able to get some pictures of them together. But I forgot all about the fact that Annabel and Cathy are somewhat of celebrities here, and everyone on the floor knew them. So we had to visit in the family lounge, and I finally got to hug this sweet angel for awhile.

Annabel isn't feeling her best today, though you couldn't tell by her smile. This girl exudes joy whenever anyone makes eye contact with her, or touches her. I've never known anyone like her. Please pray that her doctors can once and for all figure out the best solution for keeping her healthy, and feeling much better.

Why we are here

2010-04-14T08:31:00.000-05:00

I wrote this yesterday, at about 2 pm, but I needed to get permission before posting it:

We are on the PCU unit now. Mallorie's doing GREAT. And today I know why we are here.

Sometimes it's only clear to me later on, that there were very good reasons for the specifics in my life. But it's a happy time when I can see good things in the present. My "outside" job involves working for a state program for children with medical needs. I love it. Times like now, it's hard, though, to think of being away from Mallorie at all, so it is really helpful for me (because we do need the income from me working) to be reminded that I am doing what I am supposed to be doing, when I work outside the home. If it ever becomes clear to me that I'm not, I'll be happy enough to stay at home all the time.

So today we moved back to the PCU unit, and into another one of those four-bed "pods." Here's why you won't hear me whining this time: Today I met Evan's sister. She's Mallorie's nurse. In our state, among people who work much with the program I work for, Evan is a legend. And his mom, Chava, is a warrior. She has poured hours of her life and much of her energy into keeping people who influence policy aware of the needs of children with medical needs. (She also works outside of her home, which really helps me not whine.) I've heard her name and Evan's several times over the years, because I originally worked in the same region where they live, but she sort of seemed to me like a far-off celebrity.

When Mallorie was still in the NICU, a friend in Austin kept telling me to go meet Chava. She told me that Chava worked extremely close to where Mallorie's NICU was, and my friend said she would not only provide a wealth of information, but as a mom of a young man with medical needs, she could provide encouragement the way only someone who has "been there" can know how to do. Those were crazy days, and I never did manage to get in touch with Chava, but I still hear her name from time to time. Parents who have been helped to find supportive programs sometimes drop her name, like they've personally met a celebrity, and I swear they look to see if I recognize the name. I get that, now, because today, I met Evan's sister. And I sort of feel like I've met a celebrity, too. Meeting her reminded me of Evan, and of her mom. It reminds me that Mallorie does make a difference for others, too. Not just for our family. And because we get to have her in our family, she's changed us, and we make a difference, too. And John and I and our other children go out and impact the world, just as Evan's parents and sister do.

Message from PCU

2010-04-13T19:27:00.000-05:00

We believe we will be home soon, and will be able to celebrate with you. We love you and miss you very much!!

Tube is out!

2010-04-12T23:59:00.001-05:00

Mallorie's breathing tube was taken out today. They put her back on CPAP, as she had been on that prior to surgery. She was intially working a little extra hard to breathe, and the CPAP helped for a little while, but then she started struggling with saliva, and I couldn't get it suctioned out fast enough. Finally, they got permission from the surgery team to take out the NG tube (going through her nostril down to her stomach, so they could use suction to keep her stomach empty). Once it was out, she settled down and went to sleep. NO more problems since.

That's when we realized, oh, yeah. She only breathes through her nose, and one nostril had an enormous tube blocking it, and the other is her tiny nostril since she had the cleft repair surgery.

She's been bathed, moved, moved, moved, changed, picked up (by me) ... :) She's fine. She's even wearing a very pretty purple and teal paisley gown on loan from Annabel, because she doesn't seem uncomfortable anymore. She's only on Tylenol and an IV medication that's sort of like motrin for pain, and it's clearly plenty to manage any residual pain. Tomorrow I expect the surgery team to say she can have clear liquids, and maybe we can even go out of the PICU to another floor.

They did some testing from her breathing tube a couple of days ago, and the "rapid flu test" was positive. So everyone's wearing masks, gloves, gowns. I suppose she could have it; the hospital is one of the best places to get something like that. But somehow I doubt it, so I'm waiting on the test that takes a few days and is more accurate, before I'm convinced that she does or doesn't have it. The nice thing is they are treating her "as if," and giving her Tamiflu. Can't hurt. I have a crazy habit of putting Blistex on Malloire's lips and then when I'm done, I rub the extra on mine. That's about the only thing I'm changing right now. Oh, and I kiss her knee instead of her face. But that's only because medical people are watching, you know. :)

Thank you all for praying. God is so good.

More Recovery

2010-04-10T12:13:00.002-05:00

Mallorie had a rough start, but was watched so well by her nurses yesterday and last night, so her morphine was increased sufficiently to manage her pain. Just as Dr. T had been concerned about, the amount of medication Mallorie needed to keep her pain well-managed did seem to impact her breathing a little bit, because her bloodwork done to monitor how well she is breathing shows she might have been a little bit lazy about her breathing, although she definitely hasn't required a lot of support from the vent.

The plan today is to cut back on her morphine and see if she can breathe better and still be without signs of pain. If not, they can always go back up on the morphine and adjust her vent settings to help her. Since Mallorie's nurse last night was so much of a "hoverer," so careful about watching for signs of pain or fever, John and I felt comfortable leaving her room to get some sleep last night. Definitely, her face and eyes look more comfortable today, so we are comfortable with testing out to see if she can wean a little down on the morphine. I should say that I am comfortable with that; John is pretty anxious about Mallorie experiencing anything that resembles pain, so he's made it pretty clear that he'd rather see her dose get increased. :) Nothing is more beautiful than a father's love.

It was difficult last night to see Mallorie a little feverish and in pain, and everything looked sort of not-right. She looked puffy around the abdomen, flushed, and her face looked distressed (to me). Today, her heart rate and blood pressure are a little lower, and she just "looks" more comfortable. She doesn't seem to be as troubled by me cleaning and suctioning her mouth, or putting drops and ointments in her eyes, and I feel confident that she will do better and better as the day progresses. Dr. T had mentioned that the first 24 hours are hardest, but that healing begins right away, so we can hope for steady improvement. Funny how important it is to have what to anticipate actually spelled-out for us. Otherwise, it's easy to be anxious in the present, instead of fixing our hopes on what is to come: healing, less pain, overall improvement.

They were commenting this morning about those crazy "Fluid Balance" charts, so when I heard she was "positive" (more going in than out), I made sure to mention that I'd found a significant diaper leak onto her bed pad when I changed her last night. I'd shown the nurse, but maybe it wasn't charted. My goodness, what we don't need right now is for anyone to think she needs some "drying out." :)

So what we need prayers for today are less pain, good breathing, no fever, no infection anywhere. And of course, no seizures. Less pain will hopefully mean our girl needs less morphine, which not only can impact her breathing, but it also slows things down in the intestines, and when she starts taking things by g-tube again, she needs her intestines to be moving along. Right now when they listen to her belly, they don't hear a lot of sounds, meaning not lots of movement inside there yet.

If she doesn't have the breathing tube taken out today, for sure it should be by tomorrow. From there, clear liquids, milk, ..... home! Of course this is all my guessing, but I believe she can continue to heal from the surgery at home, provided there are no breathing issues, and she is able to take enough fluids and nutrition and all her medications through her tube. I can't really make a guess about the time-table, but I think we are on the home stretch. And there is just no place like home! Mallorie, John, the other kids, and I are already stretching and getting ready for the sprint home.

Recovery

2010-04-09T21:23:00.001-05:00

Mallorie's surgery was done by 1 pm, and the surgeon, Dr. O, said she did well. Her anesthesiologist, Dr. T, told us this morning that it was a big surgery and there would be a lot of pain, so she spent a lot of time collaborating with Dr. O and with the PCU attending doctor about what would be the best way to keep her pain-free and still manage her airway. As no one could predict how much pain medication it would take to keep Mallorie comfortable, and whether it would impair her breathing, the anesthesiologist was not sure that taking out her breathing tube, only to potentially have to replace it in an emergency situation, was the best plan. She said that she and the attending doctor from the PCU had discussed the possibility of having her spend the first night in the PICU, so it was no surprise when the surgeon told us that she was definitely going there.

A lot of time and concern went into making sure Mallorie had a safe and pain-free surgery, and planning for her recovery. The PICU nurse who first had her today asked us a lot of questions about how Mallorie would show discomfort, and she spent a lot of time advocating for her to have more pain medication. It was a very busy "admission" for her, but by the time she left, Mal was resting comfortably and her heartrate and blood pressure were lower than when she first got here.

Mallorie has been blessed to be in very good hands all day today.

Here are the gentle hands of Dr. T:

Surgery tomorrow

2010-04-08T23:00:00.000-05:00

Fundoplication surgery scheduled for 9:30 am. She'll go down earlier than that.

No seizures, urine was clear of infection, and breathing well. She seems a little bit agitated (and I mean just a little) and so I'm sure whatever she gets for anesthesia will take care of any of that. It seems she's still able to sleep, but just not deeply and is really touchy about being repositioned, changed, or suctioned.

Please remember her in your prayers for tomorrow.

Peaceful Tuesday Evening

2010-04-07T00:07:00.001-05:00

It has been a difficult couple of days. Mallorie had been getting a small amount of food through her g-tube, and the balance by IV, because she had developed a kidney infection, and one of the attendings felt that if she could handle even a little bit of feeding, it would help protect her from some of the side effects of receiving nutrition only through her IV - one of those being "transmigration of bacteria" from the intestines through her bloodstream to other areas of her body. It was a fine balance, trying to keep something going through her stomach and intestines, but watching out for reflux, which puts her at risk of breathing in the stomach contents.
Yesterday she had such severe and constant reflux, that it became clear that the risk of aspiration was too great, and the feeding was stopped, but the reflux and periodic struggles to breathe continued all day, through the night, and all this morning. She didn't sleep last night, but was wide awake and agitated, ran a high heartrate, and felt feverish, although thermometers never registered as hot as she "felt." I worried that she was building into seizures again. I was so worried that she would not be fever-free by the day her surgery was scheduled, and also that by not resting, her body could not fight the urinary infection. I absolutely am certain that she needs this operation to allow her body to protect her airway, and to allow her body to settle down, and get on with the work of healing her brain. The date that everyone thought her surgery was set for (today), turned out to not be correct (it will be this Friday), and if she could not stop refluxing, would the surgery be cancelled?

The infection itself was a huge blow to me, because ever since Mallorie was born with spina bifida, I've known that she was at a high risk for getting urinary infections, and you can ask Dr. B: I'm pretty obsessive about it, making sure she gets a minimum of a liter of fluid a day, and vitamin C, because I believe that it helps protect her against UTI's. So when we got here, and she got her first urinary infection EVER, and on top of that, it was a big infection, and not caused by the first bacteria you'd expect to be the cause, I became more "obsessive" than ever. There probably was not a doctor who set foot in this room to ask how she was doing, who didn't hear that I was worried about her fluid intake, and felt she needed more IV fluids, both to flush out her kidneys and bladder, and to make up for what she was losing in the saliva that pours from her mouth when she is having seizures and at other times. The most frustrating thing is that sometimes I would hear about how they worried that she could get "too much" fluid, and one doctor even mentioned that they wanted to keep her a bit on the "dry" side. By the time she started the constant refluxing and breathing problems yesterday, I was to the point that if any conversations with doctors went on for any length of time at all, I was weepy and without words to express how afraid and frustrated I was.

So, let me tell you how much I love nurses. I love respiratory therapists, and nursing assistants, EEG techs, and doctors and all the sweet people who work here, too, but nurses are a breed of their own, because most of them take very seriously the work of caring for their patients AND the families, and most have learned that they can't be afraid to speak up and even disagree with doctors. They are the ones who spend the most time at the bedside, who have the most opportunities to listen to what the families say, and after awhile, a pediatric nurse who has cared for a variety of children in several types of situations can have an understanding of situations and a wealth of common sense interventions that a new resident could not have possibly learned just in medical school. Throughout our stays here since February 11, nurses have more than once stepped up and told a resident or group of residents what he or she thought should happen. I'm always in awe and grateful when they do that. Yesterday, the resident writing the orders to stop feedings decided not to increase Mallorie's IV rate to make up for the fluid she had been getting in her stomach, and I was so discouraged, because it had taken so much to get anyone to agree to increasing Mal's total fluids by an extra 10 or so cc/hour, and the resident was already saying that she didn't "think" she needed that much fluid, anyway, so she was looking through her past orders to see what the old rate had been. When I told the nurse how discouraging that was to hear, and how I believe that dehydration led to her getting this infection in the first place, she told me to go out and tell the resident how I felt. I just said it wouldn't matter; she wouldn't hear me, and of course I choked up saying that. The nurse left the room, and in less than 2 minutes, was back and increased the TPN rate another 10 cc. I have no idea what she might have said in 2 minutes or less that was enough to change the resident's opinion, but whatever it was, I was spared the struggle of trying to sound rational when my emotions were so much on edge already.

And today, after watching Mallorie struggle and even stop breathing for periods of time because of reflux, I was beside myself with worry. By about noon, it was clear that I couldn't put Mallorie in bed, because she would reflux instantly, but I also couldn't even prevent it by holding her. I was juggling an oxygen mask on a short tube coming from one side of her bed and her IV lines coming from the other side of the bed, with her in my arms, trying to suction and hold the mask in place at the same time, and not daring to lay her down because of how much worse she refluxed when I did. She simply could not keep her oxygen levels up without the oxygen mask, and I almost missed the chair once when trying to sit down with her to manage suctioning better, and realized I'd have pulled out her PICC IV line if I'd have landed on the floor. When her nurse came in because the monitors showed low oxygen levels, I asked for a syringe to empty her stomach through the feeding tube. She asked if I wanted to just let it drain into a disposable diaper. This is going to sound stupid to any nurse who's ever worked with me, but I never done that for Mallorie, unless she had some sort of illness and was actively vomiting. If I ever draw fluid out of her stomach to give relief, I always let it go back in eventually, because I remember being told that a habit of not returning stomach contents could throw off the electrolyte balance in the body. This is one of those not-seeing-the-forest-for-the-trees situations, because when Kerry asked me that question today, as she had already asked me yesterday, I realized this is one of those times when you DO want to just let the extra fluid go. Anything Mallorie was refluxing was partly going into her airway, and I was suctioning it out, and certainly not returning any of THAT to her tummy, so what was the harm in discarding stomach contents that were going to eventually be vomited or refluxed out, anyway? It was a turning point, because once Mallorie's stomach had been emptying for about 15 minutes, ALL of the refluxing stopped, her breathing calmed down, and she stopped being so restless. In time, her body began to feel less hot, and when I put her into bed, she did not resume the refluxing, and in fact, fell asleep! By the time she went back onto CPAP, she briefly needed oxygen along with the CPAP, but after an hour, she was able to just breathe regular air.

Tonight she is having a sleep study done to see if it can give any additional information about her apnea. In the past couple of days she's started to have really slowed breathing during deep sleep and some brief periods of apnea. But will this be picked up on the study, since tonight she's having a bit of reflux again? And even if it does, if it's central apnea, we already know it will be better managed through caffeine (as long as she can tolerate it without stimulating seizures). She had to have a medication through her g-tube at 9 pm, and so the tube was clamped, and already she has started making noises that suggest she is having reflux, and she is WIDE awake and restless, twitching. If she doesn't go deeply asleep, I suspect the apnea during deep sleep won't even be picked up. Also, one of the goals was to see what settings she would need for a CPAP machine if she needed it just during an illness at home. However, if she's not having the obstruction right now like was happening the other day when we needed to even put in an oral airway, will this study show enough information to help us know what she might need at home?

All I know is that Cathy told me that the study done on Annabel a few months ago showed events that were not at all visible to Cathy who was right in the room when they were happening, so we might learn a few new things. At any rate, the conversations with the girl doing the sleep study have been enjoyable; it is nice to get company, and a captive conversation participant is even better.

So Mallorie's surgery is scheduled for Friday, to be done by the same man who did her g-tube surgery 3 years ago while she was in the NICU. He is a humble man of God known for his surgery skill as well as for his character. Whenever his name is mentioned, nurses and doctors say that he is a great surgeon ... "and an incredible human being." I love to hear them say things like this about him, because I know she will be in good hands. Of course, if Dr. Olutoye heard that, he would say that he is just "an instrument of God," and that she is in God's hands. Which is true. This surgery is quite a bit bigger than just g-tube placement, and might also require that the g-tube be moved, depending on how things reposition when the fundoplication and tilting of the stomach is done. But judging by how well Mallorie responds to having reflux being taken out of the picture, she should do much, much better afterward.

John will be out to be with us tomorrow. I am SO looking forward to that.

Happy Easter from Mal's Gang!

2010-04-04T09:46:00.007-05:00

:(

2010-04-03T10:12:00.000-05:00

Mallorie has a bad urinary tract infection, more uncontrolled seizures, reflux, is anemic, and just needs our prayers. So does her mama...

Carley

(yeah, Mal, my sentiments EXACTLY.)

Oh, we do miss this one, us at home... (and her mama, too)

2010-04-03T00:17:00.000-05:00

Good night, and happy early Easter, you two...

Car & the rest of us.

Hospitalization update

2010-04-02T19:30:00.000-05:00

I know I should be updating more frequently, but Mallorie's been "busy" lately. She has continued to have seizures, and when they happen, it can take a lot to stop them. Then she can be without for a couple of days, and there isn't really a pattern that anyone can see. Sometimes there will be a fever (like after she had an aspiration the other day), and that seems to explain seizures coming back. Wednesday evening she needed two doses of Ativan for seizures, and yesterday she looked to me like she would need it again, but settled down. She also had run a little bit of a fever last evening, and it was treated with Tylenol pretty quickly. There also was a fever early this morning, and by noon-ish she started having some dramatic seizures which required a few doses of different medications.

There were a few scary moments when it looked like she might not be breathing, and suddenly, out of nowhere, the attending doctor produced an oral airway and put it into Mallorie's mouth. It pulled her tongue forward and corrected whatever was obstructing her airway and causing her to have noisy breathing, prevented her from biting her tongue, which has been a problem with her recent seizures, and gave a better way to suction her mouth. I burst into tears when the situation was corrected, because I didn't have the right words to express to this doctor all that I felt about him being in the right place at the right moment. He's an exceptional teacher, to the residents, the nurses, and the parents, and we all learned something in that moment.

With all of Mallorie's changes, it is good to be in the hospital with her to learn what works in different situations, and I appreciate the input from the nurses. Today, just when I was getting frustrated at repetitive signs that looked like low-level seizure stuff to me, the nurse asked me if there was any chance it might be reflux. It was a lightbulb moment. I had realized a couple of times recently that sometimes what she is having could be seizures and sometimes it could be reflux, because a lot of the signs we are seeing can happen with both, such as putting out excessive saliva, arching, grimacing, stiffening. But I sort of get stuck in the moment, and when I see definite seizures, then it's hard for me to not see seizures when anything seizure-like is going on. Once she made me see that, I was able to relax, because I believed her seizures were in control.

Because of today, they have increased her Keppra dose, and one of the neurology doctors explained that Keppra is a medication they like because it doesn't cause liver problems or excessive sedation. There is a mom I know of a boy who has seizures which improved after surgery. I just remember her saying that when she was given the choice of which medication to keep last, as medications were weaned off, she chose Keppra. Also, Gavin's "miracle" seizure drug is Keppra, according to his mom. I was so happy to hear that she still has room to go up on that drug, and that's what they did again today, so she will be getting a higher dose of Keppra ongoing.

The neurologist who was covering last week (not Mallorie's own neurologist, the awesome Dr. Rivera) was in her PICU room one day and made the comment that he didn't think they would ever completely control Mallorie's seizures. I was grateful today for a change in doctors, because that attitude didn't settle well with me, although the doctor himself seems good and I have no complaints ... except about his negative attitude. :) Not only did I not believe that, but I also believe it's extremely premature to make statements like that about someone who only has had seizures for less than 2 months. But when you have a couple of days of contact with very positive doctors who do not act like they are "discouraged," it does wonders to boost your spirits, particularly when you've been up since 4 am and are feeling quite weepy. And it helps when Dr. Stein, the performer of the amazing oral-airway trick, says that on a scale of 0 to 10 in terms of concern that he has for Mallorie, with 10 the most severe concern, and 0 being no concern, he considers her to be about a 2, it is encouraging. He believes that what she has is manageable, and we just have to learn how to manage it. This was before Mallorie required the airway, and sure enough, even that scary event was managed.

Prayers that we need: For Mallorie to get the needed surgery on the right day for her. She needs to be in good health, but I believe she also will be in better health when this new severe reflux is made a non-issue for her. For healing for her brain and lungs. For our kids and John, who can't always be here, and all miss being together as a family. For healing for myself.

Oh, and I also forgot to mention that Cathy, Annabel's mommy, came by to see us a few days ago while we were in the PICU, and brought Annabel's beautiful hospital gowns and quilt for Mallorie to borrow while she is here. Let me tell you, when you dress this fashionably while you are in the hospital, you make quite a stir. Even male doctors have commented on how she looks, and at least a couple of the nursing staff recognized the gowns and talked quite a bit about Annabel, Cathy, Carly, Colette, and Tara. I will admit that it was nice to be able to say I was friends with Cathy. Sort of like saying you are related to the president of the US, because I swear people are jealous of me when I say that. :) Of course, it could be Annabel that they are all jealous of me for knowing, because she is quite a star here.

Back to the PICU again

2010-03-28T18:55:00.000-05:00

Sorry for taking this long to update. Because Mallorie continued to have seizures in the local hospital, despite having increases made in her seizure medications, the neurologist from Houston felt she should be transferred back to Texas Childrens, where she had been Feb 11-March 6. This time we spent most of the week in a 4 bed ward in the PCU (a floor that has monitoring of her vital signs just as the PICU has, but is for children who are somewhat stable). Gradually, they seemed to get the seizures in control, and we got her scheduled for a surgery to tighten the top of her stomach to prevent vomiting and reflux, because her newest seizures sometimes cause some reflux and vomiting, and we don't want her breathing in the stomach contents. She might possibly already have a pneumonia from this. She also tends to have difficulty breathing and her oxygen level will go down when the seizures cause refluxing. This surgery has been discussed in the past, but she did not seem to have respiratory problems coming from reflux in the past. But since February, Mallorie is different, and this is clearly needed. The surgery has been scheduled for April 6.

A couple of days ago, they transferred Mallorie to the neurology unit, because she was doing so much better in terms of not having had reflux or vomiting for awhile, and her seizures were much less frequent. Just a couple of hours before the transfer, she had a procedure done that triggered a LOT of gagging and vomiting, and the doctor doing the procedure saw her aspirating (breathing it into her lungs) while he was looking with a scope. Since having that procedure (which I think we will never allow to be done again), Mallorie began refluxing severely, and then she began having seizures again, and even giving her a few extra doses of seizure medications didn't stop them. She also began having dramatic color changes and a lot more trouble breathing, so she was transferred to the PICU last evening a little before 7 pm. The same place where we spent most of the last hospitalization. She had a rough night, with a couple of seizures, more refluxing, and agitation. She was unable to sleep all night, and even though we attempted to tape her eyelids closed just to protect her eyes from drying from the oxygen she was receiving, she still kept her eyes open and was wide awake with hiccups all night. By morning, though, she fell asleep. One of the doctors today explained that any stress - such as an illness, or the increased reflux and struggles to breathe - could make her more likely to have seizures start up again, even though her seizure medications had been working for her before. So the hope is that helping her to get past whatever started this happening again will allow the seizures to stop. Right now, she doesn't seem to be having seizures, but she is having reflux and is running a fever, and they've tested her some viruses. Right now she is needing quite a bit of extra oxygen, but she is breathing on her own and resting.

An emergency medicine doctor who is working in the PICU for the next 24 hours came in to introduce herself because she was very interested in Mallorie. Her background is cardiology, and she said when she read, "Trisomy 13" (I guess in her record, since we never had genetic testing to confirm this), she wanted to know if Mallorie had a VSD, which is an abnormal hole in a particular area of her heart. I smiled, and said, "As a matter of fact," and went on to tell some of Mallorie's story. When I told her that all of the holes in her heart had closed, she said, "That's extremely unusual." That's something I seem to forget, sometimes, and it was good to be reminded. We talked about Mal's cardiologist's strong belief in good nutrition to allow for the holes to continue to close, she said, "Maybe it was all that breastmilk." I had to tell her that I know it sure helped, but also that a lot of prayer has gone into Mallorie's life.

There have been many times when I've wondered how anyone else can truly learn from Mallorie as we have. I know that John and I and our other children have gained so much from having Mallorie in our family. Our kids love her passionately, and have been changed by loving her. There is a compassion now developed in them that is beautiful to see. But I have verbalized in the past that it feels like the full benefit of Mallorie is sometimes "wasted" on others. I thought that particularly some of her medical specialists might never get the full benefit of knowing her. But today, I got a glimpse of something else. Mallorie seems to have some work to do in her life here on Earth, and a part of it may be to teach others to think a little outside the box.

While I beginning to write this, the same doctor just came in to ask some more questions. She said, Mallorie is 3, and children that age aren't usually eating a full liquid diet. She started thinking aloud about the idea that a common treatment for reflux is to thicken feedings, and since she had heard that Mallorie is normally fed baby foods through her g-tube, in addition to breast milk, she thought that giving her solids by tube would be preferable to anything liquid right now. I know my mouth must have been open, because telling these doctors that we feed her "real food" through her tube has always been one of the things that help me to see the crazy in the doctors' (and sometimes nurses') eyes. And I can't tell you how many times I have to explain the whole donor breastmilk idea. Yet this doctor kept talking out her rationale, and asking for my input. All I could think was, Really? This doctor is suggesting we you feed this tubefed baby pureed foods instead of a formula for tubefeeding? She also asked what I thought about giving breastmilk for a part of her nutrition, "for the immunoglobulins." :)

Conclusion: This post has been several hours in the making, so I'll summarize the rest of the day. Mallorie continued to have more frequent seizures, and a beautiful team of physicians, nurses, and respiratory therapists spent a lot of time in her room, planning, discussing options, changing plans, debating. A series of interventions were used which ultimately stopped the unending seizures, with the end result that Mallorie is now zonked, and finally able to catch up on the rest that she missed last night, while Hannah and I split the night hours with her. (John had not been feeling well, so we kept him away just in case he might be sick.) There is a back-up plan in mind if this is only a temporary calm, but I think it's been going on now for at least a couple of hours. The back-up plan may or may not result in a tube being placed in Mal's airway and her being put on a ventilator, and even if that happens, there are benefits that could come along with that possibility. Her fever is down, and she is breathing peacefully, although she does require oxygen through a mask. Or at least, no one is willing to test her without it yet. :)

Today's physician team plans to ask the team tomorrow to ask the surgery group if they would consider doing her surgery sooner than April 6. The longer that she has to wait to have the surgery, the more they feel she is at risk of having aspirations. Already they've canned the idea of feeding her, and she is receiving TPN (nutrition through her IV). Someone said the surgery group had hoped Mallorie would have longer on the antibiotic she is receiving, before taking her to surgery. So there are pros and cons of moving up the date and of keeping the surgery at the scheduled time, and truthfully, I believe only God knows which is best, so I'm praying He will work out for Mallorie only what is best for her. Since that's what He has always given her (sometimes visible to us only in retrospect), John and I are trusting this time will be no different.

Please pray for God's continued protection of Mallorie and for wisdom for those caring for her. And also please pray for our other children during this time when the family cannot be together. And please pray that I am able to sleep well in the coming nights, because I cope a lot better, and tend to be a lot nicer when I get enough sleep.

Back in the hospital again.

2010-03-25T22:47:00.000-05:00

Mallorie has been back in the hospital since Saturday evening. I just haven't had blog access until we got transferred back here to Houston (yesterday), and yesterday was such a blur ... and today I was feeling so sleep-deprived that this is the first time I have been able to get to posting.

Mal had been having more seizures even with her medication dosages being increased, and with her seizures she was having vomiting/reflux, so we were worried about her breathing. We were able to spend the first few days (through Wednesday) in a local hospital where Mallorie and we always receive such gentle care, so that was a huge blessing. Eventually, though, her neurologist in Houston felt that she needed to be out here for them to work on getting her seizures controlled. We are currently in a 4 bed room, and there is no sense that this will change anytime soon, because each time a room opens, a new patient is admitted into that room. I'm blessed that Hannah and John are here, so today I put earplugs in and tried to nap some in a chair next to Mallorie's bed, because last night there were so many discussions going on throughout the night about her seizures, and the lack of sleep was starting to catch up with me.

Please pray that tonight is quieter, because it was pretty loud (mostly staff conversations) in the room and in the hallway all night, and I don't want to use earplugs during the night and possibly miss hearing a change in Mallorie's breathing that could let me know she is having a seizure and might need to be suctioned.

She got a PICC line, now.

I know this is not much, but I have to get back to her bedside.

What a great quote.

2010-03-18T22:52:00.000-05:00

“An observant parent’s evidence may be disproved but should never be ignored.”
—Lancet 1:688, 1951, Anonymous

Slow and gradual and Dr. B

2010-03-12T12:13:00.005-06:00

We came home on Saturday and spent Monday night in the ER because of mixing up timing on a medication we give Mallorie. She was fine, and cleared to go home. Tuesday, we got to see Dr. B, who spent some time listening to the updates and getting to know the changes in Mallorie. She also was able to change out the medications a bit, so we have a little less to keep track of. Wednesday morning, back to Dr. B again. Mallorie had run a fever all night that didn't really even seem to respond to tylenol or motrin, and by morning she was struggling with breathing.

Dr. B asked us, "Did a breathing treatment help?" Uh, no, because we didn't even think. We just saw breathing problems and called, and they let us come in right away. So she had Mal get a couple of breathing treatments right there, which did help the breathing, and sent us for labwork and a chest x-ray. Later we got a call that the x-ray showed pneumonia and an area possibly not fully filling with air, so she is on an antibiotic and more breathing treatments and chest percussions to help loosen and move things out of the lungs. By Wednesday, she was noticeably better.

If you have a child, you probably are grateful for a good pediatrician or other healthcare professional whose opinions you trust. But having Mallorie has made me need another word that's bigger than grateful. Dr. B is beyond exceptional, and to make it even better, each of the pediatricians in the group she is part of is also exceptional, and we can (and have) trust all of them with our children's lives. One of the things that adds to the safety of their care of children is that all of them seem to be very good at taking histories. To understand what is currently going on with a child, and to come up with good plans, requires actually listening to what the family has to say, and what they "think" is going on. The family may or may not be correct, but I've heard Dr. B say many times in the past, something along the lines of "parents know best."

To fully appreciate this, you should understand that Dr. B has, well, sort of a strong personality and also strong opinions. She has been known to stand with her hands on her hips while loudly telling me that I'm practicing "voodoo" on my baby (by wanting to play with the immunization schedule.) But she somehow manages to combine her passion about doing the very best for "her kids" with prayer (to discern whether it might be appropriate to allow parent input to override her strong opinions) and with a sensitivity to the rights of parents to just have choices.

Like going along with my desire to keep experimenting with natural methods of keeping Mallorie's bowels functioning well .... provided that I have (and will actually use) a good back-up plan, so Mallorie doesn't suffer if my magnesium + vitamin C + cod liver oil formula doesn't work as well as her Lactulose.

When she asked how Mal's bowel movements were going on Monday, and said, "She's on only breastmilk right now, right?" When I said good, but explained that they smell like chicken poop, probably because of the dehydrated greens we started adding to the milk to get more nutrition to her (they contain grasses), she turned to Tracy, Mal's nurse/mommy, and said, "What are we going to do with her?" I know that SHE wouldn't prescribe dehydrated greens for anyone, but when she rolls her eyes and smiles, I know that along with the teasing there is a good dose of respect that she has for parents, that helps her remember that parents should be allowed to make choices, even silly ones, for their much-loved babies.

I marvel a lot at the wisdom God had in changing my work plans so that I was able to work around this girl enough to learn who she was, and to grow a friendship. I believe with all my heart that she is part of God's plan for Mallorie and for us. And she is one of the strong professional women I know whose lives and kids remind me that it's ok to work outside the home, if that's what God has called you to do, and that He will bless your children because of your obedience to that calling. She is that kind of mommy who proudly shows you the Spanish dancer dress she sewed for her daughter's school production, who goes camping out with her daughter's Daisy troop (even though she hates camping), and takes time off work to proudly bring her son to scholastic competitions, and beams when she jokes that he is the future Pope. And does weekend long girl-time expeditions to do scrapbooking. And she also happens to be a physician who is extremely safe and comfortable managing a little girl who right now is a tad bit complicated. I told her once, years ago, that from knowing her and watching her work at the hospital, I absolutely believed she was born to be a pediatrician. In case she ever had doubts. :) Which I bet she does not!

There is no way to honor her sufficiently for the gift she is in our lives, and goofy me, I brought my camera along in my purse both Tuesday AND Wednesday ... and forgot to even pull it out. I should have asked Tracy to remember, because she remembers everything!

Mallorie seems a tiny bit more alert at times without being agitated to go along with it. In fact, she sometimes seems to be able to tolerate a little bit more time between doses of the medication we give for her agitation. Not sure how much her frequent need for that med a few days ago had to do with her getting sick, but definitely she has been a little easier to predict in the past couple of days, and has some periods when she is a little more alert that are not also combined with tenseness and agitation.

Not much else to update. We are working on ways to simplify her routines to help lessen the chance of us making medication mistakes when our tiredness gets combined with Mallorie's health changes.

The older girls are gone for the weekend to a dance convention. This is something that John has always loved being a part of, but this year, as last year, they have to go with friends. But we are there with them in spirit, and hope someone sends us a picture or 2?? And we have a good sunny weekend to spend with the boys.

Sadness and gratitude.

2010-03-08T18:18:00.004-06:00

I am so grateful to be home. I am so grateful to have Mallorie home WITH me, and to be able to bring her into our bed last night, to allow for frequent position adjustments to keep her airway open, and to better judge her level of comfort and know when she was cold. I love being able to decide (AS IF I KNOW) when to try moving the doses of the med that calms agitation closer together, and when to space them out more. Basically, I am grateful for the chance to try to get a handle on the timing of meds and feedings, instead of depending on others to manage all of that. Mallorie is on more meds than ever, and the continuous feedings are not so workable at home. And she has lost weight and seems so thin, so I started thinking while awake during the night last night, that I wanted to start adding some pureed meat to her feedings, and oil, and things like that.

But I'm also sad and frightened right now. During Mallorie's hospitalization, I was the one who kept telling the doctors and nurses that I saw daily small changes in her, and that I believed she would "come back," after awhile. I got that from one of the neurology residents, Dr. Tran, who would point out positive changes to me EVERY time he came in, and say, "See? This changed (she was not having the obvious seizures anymore, or she was showing an ability to breathe with less support, or not running a fever)... That's a good change, right?" And I would have to agree. Once he said, "Her improvement may not be happening in leaps and bounds, but she is still improving."

So I took that from him, and internalized it. I would say to myself and to anyone who asked how I thought she was doing, that she is improving, and that she will recover, but just not necessarily overnight. I would say it to John and to the kids, too. No one ever disagreed with me at the hospital; Hannah and John did try to express doubt, but what was the point? Only time will tell. And I would say that if Mallorie had a broken leg (well, and if she walked), no one would expect her to put weight on the leg for a long while or to walk on it. She would be expected to rest the leg so the bone could fully recover. So I wanted most of all for Mallorie to be allowed to rest, so her brain could have the best chance to heal. Rest and a peaceful environment were hard to come by in a 2-bed PICU room filled with 3 beds, and family members and 3 times the number of people coming in and out of the room on rounds and for medications and respiratory treatments. The best day was when Dr. N, a PICU attending, finally wrote an order to give Ativan at once, instead of just "give PRN" so that the next doctor could come around and undo the order. And she got almost immediate relief, as the Ativan went into her IV line. And then when Mal's new neurologist said she should continue with something like that at home, I felt the weight of having to fight for her being lifted from my shoulders.

But coming home has been hard. Not all our meds were available, although the prescriptions had been faxed to the pharmacy a day early, and we have had to scramble to find elsewhere those which weren't compounded meds, and to wait until this evening to get ones that were. And she still doesn't recognize us or respond to us. She doesn't smile. For so long I feel like I'm the one who has been telling everyone that she will be the same, eventually, but just needs more time, but tonight I am the one who is crying and don't want the other kids to know. I truly believe that it wouldn't be a surprise at all for God to accomplish this. But each day that goes by without this happening, and being home with her like this, makes it all harder to be so sure.

I might as well say it right here: I don't need anyone to tell me I just don't have enough faith. I came across some printouts of emails I had sent out 2 years ago, while Mallorie was in the same PICU, and I was so worn-down. Even then, as bad and hopeless as it might have looked at times, God answered prayers for Mallorie, and protected her from unnecessary procedures that were being suggested to her. But this sentence that I had written 2 years ago really jumped out at me this time:

And she smiled in her sleep a few times just before we were heading off to go to sleep ... the first smiles we'd seen since surgery! That is the part I am missing today. This sweet smile, that we have all over our cell phones, our computer desktops, and that all of us keep sneaking peaks at.

(These are unfortunately all from my phone, as our house is a wreck and I only have time to take a short break to do this post.)

There are some children whose lives I follow through blogs who have lost some of the abilities they once had through events that happened during hospital stays, through errors. Even if mistakes happen, if you believe that those caring for your child listened, and really acted as if they believed your child mattered, you might cope better than if you think someone just would not listen or care. I am grateful to not have those emotions to deal with, as I know Mallorie received good care. It might have felt like a fight sometimes, but people listened. But I do understand better, today, the grieving that comes from having to cope with such changes in a child. How I pray that these losses are reversed for Mallorie, and that she smiles AT ME soon. But I understand a little more.

On the Launch Pad, Again.

2010-03-06T09:51:00.003-06:00

Yesterday, we thought we were going home, and packed. We still have the cart in the room! But Mallorie continued to have agitation and had spiked a fever in the night, and even Ativan hadn't had an effect more than 2 hours after it was given. There was a concern of new infection, and always in the back of the doctors' minds was the PIC (IV) line which had been removed in preparation for discharge. So the discharge was cancelled, to watch how her day progressed, and a new medication was tried, instead of Ativan, because 2 hours after the Ativan had been given through Mal's feeding tube, she was still very agitated and arching off the bed surface.

The periods of agitation are accompanied by higher blood pressures, heart rate, and temperatures, but they turn out to be very responsive to Clonazepam. This medication was much more effective in calming her, and seems to work more quickly, and lasts longer. That is a relief, because we know we will have a 2 hour drive home, minimum, and in the past, sometimes breathing difficulties have accompanied the agitation. I very much wanted to go home, but did not need any convincing about slowing things down when I thought about a 2 hour drive without oxygen in the car. She hasn't been needing oxygen ... I had woken up at about 5 or 6 a.m. yesterday morning, thinking about how she was still on oxygen and we didn't have any with us for the trip home, that when it came time to go, she might have to be trialed on room air, first. So we turned the oxygen mist off and learned she could go all day with no issues maintaining good oxygen saturations on room air.

So yesterday, after receiving Clonazepam, there was no more fever. After just over 8 hours, Mallorie woke up (2:30 am) and was becoming periodically restless, and over the next few hours, she ran just a low-grade fever, her blood pressures went up somewhat (she is already on 2 blood pressure meds) ... but then she calmed down again, even though she didn't go to sleep, and the "fever" went away and the blood pressure came down. That was without any additional medication. At 8 in the morning, the agitation increased, and she was given another dose ... and she has been snoozing peacefully since.

Most of the people here do not think this is seizure activity that she is still having, but more likely a sign of her brain "waking up." For sure, her body's response to this agitation ... or else the agitation itself ... is much less dramatic than it had been in the PICU. Maybe this is because they do not let her go hours in an agitated state, while treating just the blood pressures and doing bloodwork when she has fever. Instead, they treat her obvious agitation more quickly, and so maybe it just doesn't get as bad? Or maybe it is just that she is getting better, day by day, and so her periods of agitation are simply less severe. Either way, this sweet girl is resting (she had been given the new med 2 hours before this picture), and we are officially going home.

WE LOVE THIS NEUROLOGIST (Dr. Rivera) who will continue to see Mallorie after discharge. He very clearly loves children, and I do not feel I have to be careful of the way I am asking questions (like starting always with, "I am not saying that I think this could be seizures, but ..."). Instead, he is patient with what probably sounds like I am asking the same questions over and over, but as different things occur to me, I need another explanation of what HE thinks is going on. He listens very patiently, and though I know he is a very busy man, John and I said he has a way that makes you feel that Mallorie is the only one he has come to see on the floor. He was clearly chosen for us. I know at this point, I cannot have another doctor that it feels I need to wrestle with. In fact, he offered this morning to email Mal's Physical Medicine and Rehab doctor to ask her if a Hensinger collar might be helpful for Mallorie, since there are some concerns about the neck region of her spine, and Mallorie cannot support her head on her own. I get the feeling he pretty much knows everyone in this big place, and has a good relationship with them all.

So we're packing, because yesterday all the discharge prescriptions had been faxed to our home pharmacy, Dr. B had been called by the resident, and the milk had been moved from the milk bank freezer to this floor's freezer. Andn we will bring our sweet baby home to the arms and kisses of her brothers and sisters. And Tracy.

I am praying today for Witt, who is still in the PICU here and is still in need of healing. And for Rolando, who has been in the PICU for a month, running fevers continuously despite antibiotics. Mom told me yesterday that they believe the source of infection was his central IV line. I am praying that with that IV now out, his body can respond to the medications, and that he will recover fully and return home with his family. He is an 18 year old miracle, a former premie, and apparently a source of joy to those who know him. I only wish there was always a way to allow others to see who our children "are" when they are not sick. So many times we have been asked if Mallorie is back to her "baseline." Thanks to Mal's speech therapist, we have a blanket displaying Mallorie sticking out her tongue at John, or grinning ear to ear, and fold it at the bottom of her bed so anyone who comes in can see one of the pictures. (To John's delight, it also has pictures of the other kids, so anyone who comes in the room when he is here gets to see the pictures of all his brood.) :) This hospitalization was not planned at all, but I know some people bring photos of their child when they have hospitalizations. I think expecially for children with special needs, this is a blessing, if doctors, nurses, and respiratory therapists can see who your child is when he or she is not sedated or very sick, and the personality can show through. I can't count the times when residents have told us how good it was to see a visual, so they know who they are caring for. She is a much-loved part of a family, and a child full of joy. They might not get to know her when she has fully recovered, but they have gotten a glimpse.

**I'll post the picture later ... because WE ARE PACKING UP!!**

On the Launch Pad??

2010-03-05T12:45:00.002-06:00

If we were in Beaumont, Dr. B would be saying right now that we are on the launch pad.

Mallorie has a new neurologist who seems great, and is willing to work on squeezing her in to see him sometime in the next month. No small feat here, because it's VERY hard to get a neurologist appointment. I hear 9 months to a year is typical. He's very thorough, and speaks to Mallorie in the sweetest baby talk. He's a real "kid" doctor. And very good at explaining things.

He also wants her to become established as a patient with a pulmonary doctor (for the lungs), just in case that is ever needed.

In the PICU, there were a lot of changes made in the electrolyte supplements given to Mallorie, and a new blood pressure medication was added, and these changes will be continue at home, so we have been in touch with the renal doctor's nurse, and Dr. M will follow her labs and we'll visit her if needed. I expect she will try weaning Mallorie off the lasix very soon.

And we'll see Dr. B on Monday, I think, for a post-hospital visit.

The only hitch right now is that Mallorie spiked a temp last night. Apparently, on this floor, they subtract 2 degrees from the reading if the temp is done rectally?? I've never heard of anything like that, but that's what the nurse told me today. She also ran another fever (101 under her arm). I can't remember what they said they do to armpit temperatures. She had some bloodwork done to see if it looks like any infection might be going on, and I guess depending on those results, they will decide if she needs to stay another day or not..

Moving up in the world, real clothes, a visitor, and dreams of home.

2010-03-02T22:50:00.004-06:00

Today we moved out of the PICU!!!!!!!!!

The day started with Mallorie having a short period of agitation which resolved without any medication. And ended on the 10th floor (Neurology floor). All this time I thought we were going to the PCU (intermediate care/monitoring floor), but this is a nice surprise. A great view, a spacious room that feels like we're in a hotel, private bathroom with shower, and a bed (couch) only for me (& Hannah). And lots of privacy. It feels so amazing, and even better than the PCU where we've been before, because with only minimal monitoring (her pulse ox), no one has issue with us closing the blinds to the hallway.

Then we got a visit from Kenzie, and in all that time, I forgot about getting a picture! Here's some picture evidence that she was here, and Hannah and I are enjoying the steaming cups of tea from what she brought. I can't believe she remembered about my love for Twining's orange pekoe tea!

We don't know how long we will be here. Mallorie's not all the way back to normal, and of course, she will continue for awhile on some seizure medication, since she didn't do well with weaning her off seizure medications before. She's still not really alert, although each day shows improvement, but I just asked the neurologist who came into the room about Keppra. I remember a mom telling me when her son was able to go down to just one seizure medication, the neurologist asked her which would be her first choice, and it was Keppra. So I assumed it was a less sedating choice, since going to just that one medication meant her son "woke up." The neurologist told me that one of Keppra's side effects is sedation. So how do we know when she is waking up more and improving, if she's sedated by the med? A shrug.

One frustrating thing about neurology, according to the night nurse, is that - unlike with cardiology - there are a lot of vague unknowns. Unanswered or incompletely answered questions. There is a lot of drawing conclusions from things that can't always be measured or that don't always show up on EEGs. I see what she means. I hope to remember tomorrow, when the attending and fellow come through on rounds, to turn the tables a little and ask them to give me the summary of Mallorie's illness, just to see what the consensus was. Tonight's doctor did mention that she understood that Mallorie hadn't had a seizure for 3 days ... and that means they are counting what happened this weekend, when she required Ativan to calm her so her blood pressures came down, as seizure activity. I think. I'll take the gifts wherever they come from, because somehow I thought I'd still have to play the game of prefacing any request for treatment of any serious agitation with, "I'm not saying this is a seizure or anything, but ...."

On the other hand, if things continue as smoothly as today went, and Keppra is effective for Mallorie, then maybe we don't even have to be concerned about any of that. :)

The past few days

2010-03-01T22:25:00.003-06:00

Monday

2010-03-01T22:11:00.002-06:00

I left the camera in Mallorie's room, and am currently in the waiting room, but I should be posting some pictures. Maybe tomorrow, when all my stuff AND my child are in the same room at the same time.

Today Mallorie began the day with some of the stiffness/arching that she was doing before, and keeping her head turned to one side. Whenever I ask about it, the doctors say they don't think it's seizures. But no one has done an EEG when it's been going on, and even if it isn't seizures, I absolutely feel it's something to do with what's going on in her brain. She looks very uncomfortable while this is going on, her heartrate is high, and her blood pressure is high (180/100+) even though she is already on 2 medications for her blood pressure. Today, I asked again about possibly treating the agitation with some Ativan before treating just the blood pressure. I started with saying, "I know no one thinks this is seizures, and I'm not saying I think it is a seizure, but ...." and the doctor said, "It could be seizures. And if it is, it is very important to treat it."

Wow. Some of the other doctors have said that if they give her Ativan to calm her and stop whatever this is, it could make her stop breathing. Personally, when she is doing all of this, and it's making it hard enough for her to breathe that they are talking about putting a tube back in, as has happened when she did this before, I'd wonder what the risk is. If she stops breathing ... they were already planning to put a tube in, right? But only 2 doctors so far have agreed that Ativan should NOT be a problem for her breathing, and one of them (a neurology resident) also said it should not cause problems if they had another EEG done right afterward, because Ativan would not mask the seizures the way adding more seizure medication would. But even if another doctor agrees it could be a good treatment plan for her, that does NOT mean the doctor who is in charge at the time when this stuff is going on will agree with the plan.

But today, Dr. N looked at her and at her vital signs, and said to give her Ativan, and not another blood pressure medication. He told me that her elevated pulse and blood pressure could absolutely be from seizure activity. And within minutes, she calmed down, her breathing became easy and quiet, and she slept peacefully all day. When it came time for the MRI she was scheduled for at 4 pm, she was still so relaxed that they did NOT have to put a tube in at all (much better for her), and just gave a little bit of medication in her IV. She continued to breathe with no problems afterward, and I just gave her a bath, and I know she will have a good night. She is requiring some oxygen still, but it's being given "blow-by" as we do at home when she is sick, ... and with extra moisture to keep her airway from drying out. No mask or anything.

And the caffeine level that was repeated before any changes had been made in her doses showed a level of "5." The first one, which I really believed had been lost in Utah, somehow, because it was well over a week before someone could find it to give a verbal report .. and then no one could find it to send a fax the next day .... had been 24. I never believed that level, but since it was over the desired range of 10-20, I did feel much better getting confirmation. The really neat side effect of having that first report was that they lowered her dosage a little. This is as safe of a place as any to attempt lowering her dose, because I sure wasn't interested in trying it. Last time it got really low (to a "2") last winter, she was having really frequent episodes of apnea. But now, on a lower dose (I think 25% lower), she still does not have ANY apnea.

So 2 really good things learned today. That Ativan can help if she continues to have episodes of the breathing struggles associated with signs of agitation (high pulse and blood pressure). And that she can tolerate a slightly lower caffeine dose without apnea.

And Mallorie continues to breathe without any artificial support. :)

I have an appointment for myself tomorrow morning, just down the street, so Hannah will come to stay with Mallorie. I've asked them to hold off sending her to the other unit till I get back, but I fully expect Mal to be out of the PICU tomorrow. Yay! Not meaning it's not a wonderful place. Mallorie has received good care, and I've grown while here. But yay!

Sunday Blessings

2010-02-28T12:31:00.002-06:00

Mallorie remained relaxed all night, and her nurse was successful in advocating for "another hour" to allow the new blood pressure medication patch to stay on. For Jennifer (her nurse), this meant extra work, rechecking, rechecking ... I tried several times, both legs and the arm without the IV, and eventually gave up and went out to sleep. I fully expected this morning to find her patch gone, but I peeked under the covers on her back, and it was still there!

I know it's not just the patch, because God allowed Mallorie a blissful day of rest yesterday. The morning did NOT start out that way, and there was talk of reinserting the tube in her throat, and her milk feeding was stopped for that purpose (so she had less risk of aspirating on whatever was in her tummy if they had to put the tube in). But I was able to send out SEVERAL texts, asking for prayer, and very quickly things just turned around. Kate, her nurse yesterday, who took care of Mallorie several times when we were here 2 years ago, suggested I get in the bed with her (she's still in her big girl bed) and very, very quickly she fell asleep. Hannah spent a long time in bed holding Mallorie, and then we just put her in the bed alone, to see if she would remain calm, and she did, nearly all day. And through the night.

And today.

John bought her a white noise & music player from Bed Bath and Beyond, and I just turned it off, because maybe daytime is for waking up?? :) But we'll allow her to do whatever she needs, because she sure had an extended period of being wide awake and unable to relax. Days.

She will have another MRI of her brain tomorrow sometime, because there was something abnormal seen last week, that they couldn't quite make sense of. Then, at some point after she recovers from the anesthesia they give her (and possibly having a tube in again for the procedure), they plan to transfer her to another floor with a slightly lower level of monitoring. And a private room, I believe. (We've had 3 in a 2-bed room for the past few days, now.) Because Mallorie is normally monitored at home for apnea with a pulse oximeter, and because she's been so unpredictable this stay, it won't be just a "regular" floor, so that's a good thing.

Tomorrow is the day the residents in the hospital move to another area of training, according to the resident who has had Mallorie her entire time here, so she may be watched another day in the PICU after the MRI, just to be sure she remains stable. But I see us moving soon, and that will mean no wondering if there will be an available and not-broken recliner each night, no trying to sleep on the floor when there isn't, like last night (only to be woken after a little time to tell me there is no floor-sleeping allowed). I am looking forward to the PCU! Plus, Conchita is there, a sweet nurse who cared for Mallorie in a couple of her past hospitalizations, and who we learned actually lives in the same town that we do. It will be like going home. Almost.

And now, since Mallorie still feels like snoozing, I'm going out to get myself some cocoa. And maybe some sunshine and fresh air.

Saturday - Long Day of Ups and Downs

2010-02-27T22:39:00.002-06:00

I can't even think through this day enough to describe it here, and certainly am not interested in reliving it.

But at least once today (morning) there were people talking about putting the tube back in .. and her nurse stopped her feedings "in case."

There were multiple discussions about her nostrils. Dr. B - sure you can't be convinced to come down here and talk sense to them? I've brought it up a number of times, that ever since Mallorie had her final cleft surgery which closed her nostril, she's been fine ... unless she gets some respiratory illness. Which happens in the winter. Then she looks VERY dramatic, because she never had to learn to breathe though her mouth, like other kids. She continues to breathe through her nose, and if there's any congestion, she just works harder and harder ... causing more swelling inside as she's forcing air through the nostrils faster and with more force. Some doctors get a glazed look and I can tell it's not the right time. But I did want to have a steroid nasal spray set up before she ever got the tube out the second time, because I knew Mallorie planned on breathing through her nose, and I knew it would be better if we planned for it better this time. One attending last weekend said it was a fine idea, and said they would start a steroid spray a few days early, and maybe some Afrin spray could be available, too. And then the tube came out and nothing like that had been done. And no one acted like it was important. Last night, I decided to write it down as a note and left it with the nusre to pass on, and still nothing. And when I relieved Hannah tonight when they asked her to go get me at change of shift because she was working at breathing again, and they'd suctioned, and given an epinephrine breathing treatment, I just put my arm around her, calmed her down ... and said again, she needs something like Afrin. The night nurse laughed, and said she'd just said the same thing. But when she asked the night doctor, she came back and said the doctor was worried about Mal getting addicted to the spray.

Am I the only one here who thinks this is crazy? I'm not asking to put her on a street drug. And in my head, I'm thinking only a few days till the steroid spray kicks in, but even if they didn't think I would agree to it, certainly they could simply write it for 3 days only. I mean, who has all the control here?

It's been a day of struggling pretty much all day with ways to communicate, so people will understand what I see or know about Mallorie. Things they can't know because they don't live with her. Or patterns they can't see from simply stopping in the room for 5 minutes a couple of times a day. Things I can tell them, if they want to listen. Sometimes I just feel like giving up with the effort of restating and restating and disagreeing and asking again. Or tired of finally getting to someone who can understand, but then they go off shift and nothing was passed on. Or the next group simply thinks it's stupid. But obviously, giving up isn't an option. Neither is losing my mind and calling Dr. B at 3:30 am, this time. Plus, the Crazy Ranting Mommy idea didn't work so well 2 years ago, so I don't expect it would have great success this time, either.

So I continue trying. And hope.

And once in awhile a sweet, sleep-deprived fellow (doctor training to be an attending) will stay as long as it takes to really listen, and will hammer out a compromise that shows that her ego isn't as important to her as the whole picture.

Or a neurology resident will listen to a scattered history of what I see going on with Mallorie, and will come up with a compromise that she and I and her neurology team can live with. One that they don't feel will harm Mallorie, that will not cloud the picture if she should get another EEG sometime, and that will allow us to move past this crazy agitated posturing thing that Mal is doing, that ends up with her struggling to breathe. Before putting a tube in, as a matter of fact.

Or another fellow who's been doing an awful long stretch of nights with Mallorie, and worries about the risk of a nose spray to my potentially Afrin-addicted baby, but is able to give a little, anyway.

I've learned that when I'm frightened or sleep-deprived, there's a defensiveness that wants to voice itself in statements like, "Just because she's got disabilities, doesn't mean she isn't very important." I bite my tongue and think about where all this is coming from. Why do I leap to that place so quickly? The communication struggle is not about anyone here plotting against her. They don't treat her differently from "typical" children because of her differences. I really don't believe that in my heart, but that craziness gets stirred up in me at points. And this is what I am learning: it's me, not them. A lot of the communication struggle is a system-thing, and I'm not sure there is a way to get around that there are several people to "convince" if you have a request, and that those people rotate in and out with several other people, and on and on.

But the leap into defensiveness and becoming one of the "Scary Mommies" is something all within me, and something I need to keep a tiny bit in check. I mean, if I don't want to alienate everyone and then REALLY find out what communication problems feel like.

I also have had to speak up sometimes and tell people not to say things that "might" happen as if they really are happening right now. Things they sometimes seem to be pulling right ~~out of their butts~~ out of thin air. Like, "Did you ever think she might be having TIA's?" TIA's are also called "mini-strokes" ... ummm, no. I don't think she is having those, and even if that is a remote possibility, I don't think you need to be talking in this room about things like that in her hearing. (Or mine.) We do much better staying with the here and now, and I can assure you that I have years of practice jumping into the wide world of terrible-things-that-possibly-could-happen ... but aren't happening right now, and may never happen. I'm actually working on changing that.

They decided to try a new med for Mal's high blood pressure, and I was really excited about it, because it has a side effect of causing relaxation. But she is now showing us too-low blood pressures, so I'm pretty sure they are going to take it away (it's a patch). Maybe they can give it to me, instead? :)

Well, it's past midnight and I really need to sleep.

Very special visitors

2010-02-25T22:21:00.002-06:00

Christine, a family friend, and her friend Merari, came by just to visit with Mallorie today, and stayed quite awhile, ... actually until they were kicked out! Our nurse was really patient, but eventually had to remind us that the "party" was only supposed to include 2 at a time, plus Mal. :) I didn't realize until they had left, that I never got a picture of them with Mallorie!! I had the camera right there on the bed the whole time, too.

Right here is where the picture of Mal's first visitors to see her without her tube should be. I really feel badly to have missed that opportunity while they were right here "partying."

Thank you Christine and Merari. It was so nice to visit today, and have you share our watch over Mallorie's peaceful breathing. And of course, I loved hearing you tell us how cute Mallorie is! :)

Thursday - TUBE OUT.

2010-02-25T21:07:00.005-06:00

SUCCESS!!!!

The tube came out about 10 am, and it was a little bit of an adjustment for Mallorie at first, and people (doctors) kept coming by for awhile, checking, saying things like, "It could be awhile," and "It could be a process; she might need some support for awhile like BIPAP," etc. But Mallorie flew! Initially she required some suctioning, a couple of breathing treatments, more suctioning ... but eventually, after I had a chance to sing in her ear, stroke her head, and just trusted God with her, she breathed more and more easily, and mostly has been breathing easily all day. She has only a face mask with some oxygen and cool mist on her face.

I think I was the only one who felt (after my initial moments of panic) that she would continue to do well. Sometimes I wanted to tell a doctor to step outside the room if they had only reservations to speak around her, but that's only because of the recent conversations with my friend Rhonda, who told me to counter any negative conversations around her by speaking God's word into Mallorie's ear. I did my best - I couldn't think of verses, but I did remember songs from scripture, and they absolutely calmed Mallorie.

She's still running fevers, and will continue on antibiotics for awhile, but her blood gases (tests which show how well her body is responding to coming off the vent) looked good. I had to smile when I overheard the attending saying he was going to postpone the post-extubation chest x-ray, because he didn't want to mess with her once she had gotten to such a comfortable state. I was smiling, because the nurse and I had already moved her around, changed her diaper and the soaking pad beneath her, and suddenly it struck me that I could pick her up in my arms (!), so I went ahead and snuck in a big snuggle. It did good for Mallorie AND for me! And she kept right on breathing well, and when we had diapered her, she turned herself as much to her side as she could, and relaxed some more. So I'm saying, he probably could've gotten that chest x-ray with no problem, but I didn't speak up. I had already told God I was leaving all the decisions surrounding her extubation in the hands of the people He had put there to care for her. So that meant I restrained myself as they did some "aggressive" (my mommy persepective only) deep suctioning, even when I saw blood, and out-loud talked myself through the process. Good thing Vera's mommy had already spoken on this topic, because it helped me to remember.

She is right now looking like she is working a little harder at breathing than she was before, and has been suctioned a couple of times and the cool mist was started, so please pray for a good night with easy breathing.

The girls at the top with Mallorie were the Kangaroo Crew that brought Mallorie from Beaumont to Houston 2 weeks ago. Whenever they are on, they check in on her, and today both came by for their Photo Op. Thank you Christine and Lisa. You gave me such confidence in your ability to keep her safe, so I was able to let you fly with Mallorie and John, and drive separately in peace that night. I will always be grateful.

Busy Day

2010-02-24T18:02:00.003-06:00

Mallorie got a new PIC line.

But got such a great sleep during the procedure that she snoozed pretty much all day afterward, and her heartrate kept dipping into the 50's. As 6 pm neared, and the doctors started their rounds, I prayed that God would direct the decision about extubation, and that they'd simply have a good feeling about today vs tomorrow. The attending came in after they discussed Mallorie, laughed, because her heartrate was in the 140's and her eyes were open, but said they felt because of the timing, the best would be to give her some light sedation tonight, and even restart her feeding, and wait till tomorrow morning. That way more staff are around if she required the tube to be put back in. They will probably stop her feeding about 2 am, and could try taking out the tube as early as 8 am.

So she had a visit from her other mommy, Tracy, who promptly set to work fixing her hair, making sure her face was clean, putting on her baby legs (found by Tamara) and telling her how much she loved her. She probably sang to her while I was away showering.

Then tonight, she got a nice bath, a manicure and pedicure, and smells like baby lotion.

And keeps trying to sneakily turn herself over onto her tummy. Just like at home. :) We keep promising her if she breathes really well tomorrow and keeps her tube out, we will let her sleep on her tummy.

So may tomorrow be another good day.

Ministry and Waiting Rooms

2010-02-23T14:38:00.006-06:00

I usually try not to ask questions like, "Why me?" I think it's because I see enough around me to ask, "Why not me?" But I also think God knows my heart and probably knows that at some level, I do wonder, sometimes. (I also think He loves me more than I even love my children, so He has compassion on me.) It does help me, some, to see a positive thing come from a period of suffering. Or from a prayer that is not answered in the way I asked.

Like before Mallorie was born, the ONE thing I consistently asked God was not to let the sac on her back (where the spine hadn't finished closing) to open. But it did burst open in delivery. My OB knows better than anyone how that one thing rocked me. Why didn't God answer just the one thing I was asking for? It was weeks later that I realized that if God had answered that prayer in the way I had asked, then Mallorie probably wouldn't have had the extended NICU stay. My plan was going home and then to Dallas, where I'd heard there was at least one neurosurgeon who would be willing to close her back, regardless of whatever genetic abnormality she might or might not have. But we were definitely not equipped to bring her home, and she really needed the time with attentive nurses to watch over her and resuscitate her if she had apnea, and needed time for them to learn how she did with caffeine. So what looked like God didn't listen to me, was really Him answering all those desires I didn't yet trust Him to pray for. Like for a living, breathing baby to bring home. I hoped for that, but don't honestly know how often I prayed specifically that way, until we got close to delivery.

So why is Mallorie hospitalized today? Unfortunately, I don't usually see good things about her hospitalizations until much later, in retrospect. I used to get Google alerts about blog posts that included trisomy 18 and 13 (back when I thought I had time to keep up with such things). And I had found Witt's blog. Today, I spoke with his grandmother, and was able to tell them of a program the family needs for Witt. So maybe one reason Mallorie is here was for Witt. And why is Witt here? As I left the PICU waiting room, I saw his grandma speaking words of hope to a young dad who had been sobbing to someone on his cell while she and I had been talking. I wasn't near to hear what she said, but the effect was clear on the dad's face and in his posture. I usually feel at a loss for the right words, and feel I often end up saying useless or just plain wrong things. But God gave Witt's grandma the right words this time.

Ever since reading this post on the Bring the Rain blog, which is always an encouragement to me, I have wondered about opportunities that might be around me for ministry. Please don't think I am really good about responding to God's leadings - in my own self-centered thinking, I probably miss several opportunities. Or try to do it on my own, and as I've said ... my words aren't much use to anyone (even to me!). But today God allowed me to get a small glimpse of the way He can use any of us, in any situation where we are found. Not that Witt is here only for that young dad, or that Mallorie is here only for Witt's family. But while we are here, we can be salt and light.

And today, I think Mallorie started looking in my direction when I was talking to her. :) Good thing, too, because they are getting ready for extubating her tomorrow. Please pray.

You are the salt of the earth; but if the salt has lost its taste, how shall its saltiness be restored? ... You are the light of the world. A city set on a hill cannot be hid... Let your light so shine before men, that they may see your good works and give glory to your Father who is in heaven. Matthew 5:13-16

MRI and PIC line

2010-02-23T08:30:00.005-06:00

The PIC line has been postponed until tomorrow morning.

The MRI of Mallorie's brain was done yesterday, and the neurology team isn't sure what to make of the report. There is some change from the MRI she had done in the NICU - 3 years ago, to the exact day - on the right side of her brain, only. But they don't know what the change could be from. Infection doesn't seem the most likely, as she's had testing on her shunt and fluid taken from the shunt twice already, and nothing looked like infection. Or blockage. So they don't know. I think he said that if anything, the ventricle(s) looked smaller, which would not be expected with some sort of infection or inflammation going on. And if this is all just words to you, join the club. Repeating the stuff I hear doesn't mean it's all registering as English to me.

So the radiologist's recommendation was to repeat the MRI in a week or so, and the neurologist who came in this morning said they will discuss that as a team. It could be influencing Mallorie having seizures and having trouble with the tube coming out.

But there is the question of the caffeine level, too. There was a time in the past few days when Mallorie was breathing too fast, and this altered the blood tests that monitored her respiratory situation. One doctor's theory was a too high caffeine level, and yesterday's verbal report that the nurse got from the outside lab was that it was too high. Which would possibly make sense of that part of the picture.

But today, no one can find that level (report) in the lab to fax here. My theory is that a lab result that doesn't show up for over a week can be a lost specimen. But the caffeine discussion brought up a point for the future. We know, from having her levels get really low last year, that she still needs caffeine to manage her apnea. It works, and when the level is too low, she will have apnea (just stop breathing from time to time), and if the level is really low ... like a "2" as it was last year, . But they said that there is hope she will eventually outgrow the apnea. That a wean should be attempted at some point. I was alarmed, because I thought this was expected to be done now, but the fellow I was talking with said it was something that might happen over 2-3 years. And that Dr. B could do that. Oh, OK. So that I can live with, because one of the things I know for a fact about Dr. B, is she is not about to compromise a child just to test a point. She would be the one I'd most want to manage something so important, and I'd trust her instincts as well as know that she'd listen to John's and my feedback about apnea. Whew. Here, the plan is to just cut back the doses a certain percent, and presumably, they'd retest the level.

And maybe they could draw a new level before cutting back, in light of the specimen/results that they can't locate in that far-away lab. :) Just kidding. I promise you, they aren't all asking me for my input.

I can't wait till John is able to come out tomorrow. It is so much better being here with someone, and who better than my beloved, who adores this little girl as much as I do, and who gives her blessings whenever he can. You should have seen me trying to remember the blessing he gives all the kids, to say it over Mallorie before her MRI yesterday. I think it came out, May the Lord bless you and keep you; may He bless you and keep you, may He bless you and keep you, and give you his peace. Last night I had to sing the Michael Card version to her in order to get any of it straight. Better hurry up and get here, daddy.

Monday

2010-02-22T16:28:00.005-06:00

First, let me say I am grateful. Grateful that there is such a high level hospital for kids so close to home, so John can come out without driving all day, and friends actually have times when they might find themselves in the area. I am glad that the input of many doctors can mean one person might add something to the puzzle that another person might not have thought of, ever. I am grateful for a huge waiting room with recliners. All of a sudden, I'm grateful for a coffee maker in that waiting room. I'm grateful for the nightly blanket and pillow, and the shower room on the 7th floor that is set aside just for the purpose of people like PICU family using it. Grateful for the many moments when someone stops by just to ask how Mallorie is, to bring me something, to promise to pray.

But I also am grateful for Dr. B and the other doctors in her practice, and hospitals at home. I'm just thinking about that today. Really nothing specific. Or if it was, then I've forgotten it in the time it took me to write the short list of why I am grateful for where we are right now. I know I could easily think of more. But there is something I am missing about home, and I desperately hope our next hospitalization (may it not be needed for a long, long time) can just happen at "home."

Oh, yeah. I remember - the reason that made me think of hospitals at home is that a caffeine level was drawn over a week ago. I think on Friday, and was a "send-out." Meaning it's a test they don't do in-house, and have to send to an outside lab to complete. It's still not completed, and still sends "in process." Which, best that i can remember from working in a hospital, is not a guarantee that anyone in the receiving lab has even acknowledged receiving it. I ask from time to time, what about that caffeine level? The answer is always that it's a send-out. Once, someone told me they have to send it to Houston. All the way to Houston? Oh, yeah; we're in Houston. Then I learned it goes to Utah. One nurse called a few times, and never got through to anyone, but was able to leave a voice mail, but no one called her back.

At home, we have results in a couple of hours. We'd have to be pretty darned late going to the lab to get the blood drawn, to miss a chance to get same-day feedback. So, that makes me wonder. Why can't they send it to somewhere closer than Utah? Like, um, our town?

Mallorie had her MRI today. The attending doctor came by and said they need neurology to look at the results, because there are some changes when compared to the MRI she had done 3 years ago (to the day). On one side of the brain, and he says it doesn't look like she had a stroke, which was the thought, I know, going into the test. They say there wasn't anything seen in the fluid they took (twice) from her shunt that looked like infection, but now they wonder about some other viruses. I think he called them rare viruses, or unusual viruses. Mostly what I heard was no stroke. Because I was already wondering how much hyperbaric oxygen treatments cost.

When the respiratory therapist and nurse were retaping Mallorie's tube in her throat today, it slipped, and Mallorie gagged. They checked the tube position, and verified it was where it needed to be, and went on with the task of taping. It took me a couple of minutes, and then I realized. SHE GAGGED. She gagged. I checked with the nurse and respiratory therapist, and we all agreed. She gagged today, and gagging is good.

The nurse finally got through to the lab in Utah, and says the caffeine level was a little too high. I have trouble believing it, actually. Not unless it was compounded incorrectly, which I highly doubt. She's never high; we go in for checks, and she's low, if anything. So what this means, I don't have a clue. I sure hope at least one thing it means is that they re-check at some point.

Sunday

2010-02-21T20:01:00.002-06:00

Still breathing through a tube in her throat, on a vent. Not needing the vent to do the breaths - she is doing her own breathing - but still getting oxygen and still has the tube, because Mallorie is not back to herself. She is not aware of me, not responding as if we are messing with her, and doesn't seem to have a gag reflex yet. Tomorrow she will get an MRI to check her brain.

I didn't get to sleep till after 1 am last night, so I started out tired and low, and learned when I came back to her room that her IV that I loved so much (in her arm) was out, and they had stopped her milk because her belly was distended. There was a new IV in her scalp, courtesy of Tony who, like Ida, isn't a believer in cutting hair. Crazy guy. But because of this, the plan is still on to have her get that PIC line (an IV that starts somewhere like an arm or leg, but the end is closer to the heart) on Tuesday, after all. I had been hoping that we'd get closer to Tuesday and they would be happy with the arm IV and decide she didn't need the other IV.

Rounds had already been done, and I actually, I hoped (and prayed) that the attending doctor I liked so much yesterday, would not come around, after all. Because I didn't want to hear any negative thoughts. She had said something in rounds yesterday about wanting Mallorie to be at her best when the tube comes out, to give her her best shot of being successful coming off the vent. And mumbled something about, "because then we'd have to have a conversation that mom and I don't want to have." Whatever that meant. So I was wanting to avoid any conversations, in case one might be the one "we" don't to have. Around 5 pm, she did come by, even though it almost sounds like she wasn't Mallorie's attending today? She is very nice, and told me to give Mallorie more time to come around, that she might just be sick still. I liked the sound of those words. So we will wait.

The doctor who I think was Mallorie's attending today came by and introduced herself, and we talked about Mallorie. Who she is, who I think she is (because apparently, word around here is that I don't realize she has any "issues"), what I think she has that caused her issues, etc. I don't remember exactly what I said, but I felt as I was talking that I had a chance to speak for her, to let someone know that I believe Mallorie's unique body is not the result of some mistake. At that statement, the doctor said, "Well, something went wrong." I elaborated that still I believe she was made exactly as she was meant to be, and was an intentional creation. When I finished, she said she understood, and that we were on the same page (about Mallorie's value in our lives, and how there are people with disabilities who are simply meant to be here, and are not mistakes). And that she was very glad to have had the chance to meet me, herself. You know, because of all the impression they apparently have about me thinking Mallorie's a "normal child."

I wonder if that is in her NICU stuff, or just the day to day report handed over between doctor groups, about me being the crazy mom in denial? Because I do remember being told the transport team printed out her entire record and read it on the way to come get her.

Well, I called my friend Katha, to get some encouragement, and hear some words about God. And took a shower, and now I'm going to give Mallorie a bath and get some sleep. Cynthia, a respiratory therapist, came by because she doesn't have Mallorie tonight, but wanted to check on her. She listened to my report of the day, said, "All in good time," and told me she would pray for her. Those are the kinds of words I needed to hear today. And I'm going to bow out of the late night dinner parties that happen in the waiting room, stick some ear plugs in my ears, and try to sleep enough to make up tonight.

Why I am here.

2010-02-20T20:54:00.005-06:00

I had a phone conversation with a tearful Hannah today. Hannah is 15, and is our family caretaker, nurturer, and worrier. It was Hannah who was with Mallorie when she had whatever happen that required them to take her to the hospital. Hannah just wants her baby sister home, back to her old normal self. She wants to kiss her and hold her, and love her in person. Instead, she is dependent on pictures I put on the blog, and updates.

She was asking me if Mallorie might be brain-dead (for which I was grateful for the EEGs, because I could tell her that her EEGs show areas responsible for seizures, and definitely brain activity), and I was realizing how I can never predict which of the words I use with this precious daughter, will frighten her. And I can't hold her right now, look her in the eyes; all I can do is listen to her on the phone and tell her what I do know. And that even though there is much that I do not know, and neither do the doctors know, ... there are some things I am certain about. One of those is that God has not turned His face away from Mallorie. And that even though WE wear down, "He neither slumbers nor sleeps." And that the powerful love we have for our beautiful sister and daughter, doesn't come anywhere near to the love of her Creator and true Father.

When God gave Mallorie to John and to me, He also gave her to our other children. When things like this hospitalization happen, I want to trust that He will care for them, but as a mom, I worry, especially when a few days go by and I realize I've just brushed my teeth and crashed on a recliner in the waiting room and not even called to speak with them. Am I failing them, and will they suffer as a result of my failings during times like this?

That is why it is such an encouragement to me to see that God is working in their lives during these times, and teaching them HIMSELF, and helping them grow. It was Hannah I had just been talking with a couple of months ago, when I said, "Can you imagine how different it would have been if we had known back when I was pregnant with Mallorie, and when she was in the NICU, that we would bring her home, alive, smiling? I would have been so different. I wouldn't have been so terrified."

Hannah replied, But then we wouldn't have grown. We would have said, "Yeah, right."

This is a text I got from Hannah sometime after our conversation today:

Mommy! I have to read the book of Matthew for Quine [her homeschool World View curriculum] ... It is amazing! I had no idea that all this was in the Bible! If you get a chance, you should read it; everything applies to our family. It's crazy!

Later, when I spoke with her over the phone, she said things like these:
I know that's why the Bible is there, because it applies to everything.

Oh my gosh, it applies to everything we have going on right now. Even though it was written like a billion years ago. Not really, but almost.

Here is what I'm thinking. God does hear our prayers and always answers us. But that God doesn't follow our formulas, so he is unpredictable (to us). Definitely predictably reliable, predictably loving, predictably powerful, unchanging. But he is beyond our understanding, too. That sometimes answering our prayers with a "no" is blessing us. And that sometimes, all we can do is trust, because we can't even see the blessing.

But today God blessed me by allowing me a glimpse of some of the blessing. Hannah said something about all the things she was reading in Matthew, and said "I just knew I was going to hell, because it lists so many things ... like not being loving to your sister, so I had to apologize to Carley." So I checked to make sure she had a good grasp on salvation, that it's NOT what we do or don't do; that she has been saved as a gift from God, and it will never have been because of any good works she does. And her sin won't have to cause her to forfeit salvation. But after the quick check, I just grinned, listening to her excitement about what she is reading, and how she sees it applying to her life and our lives.

Today I am so grateful to the Holy Spirit for bringing words of God to life, and allowing me, too, to see how they apply to our lives. I love the story of the father who asked Jesus to heal his son who had epilepsy and kept falling into the fire and the water. Hannah found the same story, and told me she was stunned when she actually read the word "seizure" in the Bible. I am also grateful to great friends for emailing, speaking, and texting me verses that come to mind, because the words from the Bible are so powerful to me these days. I know they are true, and they are also powerful enough to change my thought processes, to give me hope, to remind me of God's power and reputation for healing, whenever I start to forget. If any of you have a verse that comes to mind when you are thinking of Mallorie or praying, or you hear scripture somewhere that makes you think of her, PLEASE give it to me. You might think that what you share might not apply, but Isaiah 55:10-11 says: As the rain and the snow come down from heaven, and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.

Today, just a moment before I had to go to the hospital entrance to get a "milk delivery" being brought by Tamara, a girl from the milk bank came up to the room to ask if there was any more milk, because they had defrosted the last they had for Mallorie. Tamara had brought an ice chest with her early this morning (about 5 am) when she drove out to Houston for a heart walk, and arrived at the hospital just in time. Tamara and friends did the heart walk today in honor of her son, Conner, who will have heart surgery very soon (early March). He needs his closing VSD to be re-opened and to have another procedure done to limit the blood flow to part of his body (and I can never get the details straight). I am mentioning it so others can pray for Conner and his family, because it is definitely time for this surgery, but it was postponed because he has RSV right now. The link to Conner's blog is on the left side of this page, where I thought it always had been - I have no idea where it went or when it was lost.

I will try to add pictures tomorrow, after I figure out what I did with the cable I need for downloading camera pictures.

I almost forgot the updates:

Mallorie is still having something that looks "different," and is probably some sort of seizure-like activity. It involves some eyebrow twitching with an increase heart rate, and some tensing of her muscles and noisy breathing. It's not as dramatic as the other stuff that was going on, but it's still something new.

A new attending doctor came to cover Mallorie today, one I've heard great things about in the past, Dr. McP. Can I remember exactly where I've heard of her? Nope. But I definitely know of her reputation, and loved her instantly. I am thinking that sometimes it's a good thing to have an assortment of people looking at Mallorie and having input into her care, although it's an adjustment for me, as I'm more used to our awesome pediatrician, Dr. B, or one of her colleagues, who know Mallorie well, caring for her. Today, Dr. McP checked Mallorie's gag reflex (not there), and asked if she is acting like herself (she definitely is not), and decided to slow down the plan for removing the tube and vent, to allow for Mallorie to have the best chance of being successful at breathing on her own. Since she is still having some sort of seizure-like activity, they will probably discuss with neurology team about working on her meds a little.

Neurosurgeon (same one who checked her 2 years ago, and checked her shunt her first night out here) was called to re-check her shunt to make sure it still looked like a shunt problem wasn't involved. He "tapped" her shunt (took fluid out) and checked the flow, and says everything to do with her shunt still looks good. If anything, the head CT might be actually a bit better (smaller ventricles).

The EEG done yesterday - I think, but my days are a blur - shows a few areas where seizures are probably originating from. Whatever that means.

Mallorie's nighttime dose of seizure medication seems to have kicked in, and she seems much more comfortable right now. She does have an extra med that can be given if she needs it.

Mallorie's IV put in with ultrasound in the ER in Beaumont is still doing great! And Tony, the IV guy out here, shone a bright red light on her scalp today while Dr. McF was in the room, and we all ooohed and ahhhed over the scalp veins that showed themselves. You all know I am happy to cut Mallorie's hair off for a good scalp IV, so that little show made me happy today. There is still talk of putting in a PIC line, but I hope that it doesn't even have to happen.

I think that's it. I'm exhausted, and once again stayed up too late.

Ash Wednesday

2010-02-17T12:43:00.005-06:00

From yesterday (BIPAP)

From Monday (BIPAP)

Mallorie turned one year old on Ash Wednesday, two years ago. And then had a routine cleft palate surgery, and had complications, and spent a month in the same hospital where we are now, mostly in the PICU. So this is what I will be claiming today, because I keep wanting to recall that hospitalization, and although I learned some valuable things about Mallorie during that stay, ... that was then, and this is now.

Do not call to mind the former things,
Or ponder things of the past.
Behold, I will do something new,
Now it will spring forth;
Will you not be aware of it? Isaiah 43: 18-19

Mallorie had the tube put back in her throat last night, at about 11:30 pm, and was put back on the ventilator. She had been having a struggle breathing for pretty much the entire time she was off of the vent, and no one is sure if what was going on was seizures, or not, because she would be fine for a period, and then really struggle breathing for about a minute, then calm down again. Yesterday morning, I began timing the events, and they were happening every 5 minutes, like clockwork. So she is back on medications for seizures, and will go home on them, which is completely fine with me, now. It may or may not be something she needs in the long, long run, but it sure doesn't make sense to not eliminate that as a possibility while the goal is getting her breathing easily on her own. Last night, before they put her back on the vent, her color didn't look good. When I went back to see her after they had her back on the vent, it was easy to see that the decision was right (not that I was questioning it at all) - her color was great, and she looked so peaceful.

She's not been receiving any feedings while she was off the vent, because of not wanting to have her aspirate while she was struggling so much to breathe. Now that she's back on the vent, they just restarted her milk feedings, and I'm happy about that. Good nutrition seems like it would help make her stronger. .

Not much else to share today. She just looks more rested right now. They plan to feed her a bit, and then try testing her response to changing the settings on the vent - probably not till tomorrow, though. They plan to watch closely when it's time to take her off the vent next time, and maybe even have an EEG going on at the time. We'll see.

Long hard day Tuesday

2010-02-16T19:30:00.003-06:00

Mallorie is still without the tube, but she has had a tough time this way. It almost looks as if she is having some sort of seizures, because she has regularly occuring periods of really struggling to breath with the BIPAP mask on, then she will settle down and breathe slowly and regularly, and sometime even stop breathing, ... and then will have the struggle again. She had to move to pretty high settings on the BIPAP to keep her oxygen levels up today, because I guess no one wants to put the tube back in, but it really seems like she's not doing so great with just BIPAP, anyway.

They were planning to do another EEG today to see if these periodic things are seizures going on, now that she is getting off the seizure medications they were giving her, but they weren't able to put the EEG leads on her head with the BIPAP cap in place ... and no one wanted to stop the BIPAP. There was one 2-hour period this morning when she was just receiving oxygen by face mask (a pretty high rate), and seemed to do well with that, and her blood gases (test showing how much oxygen and carbon dioxide are actually in her blood) looked OK, but at the end she had more struggling to breathe, and they said her chest x-ray looked like there might be an area of one lung that wasn't fully expanding, so they felt putting her back on BIPAP would help open that up.

Guys, I'm tired. And frightened. Frightened to leave the room for long (certainly I don't feel I should leave tonight to sleep in the waiting room), and not understanding what is going on with her. I wish they had thought to do the EEG while she was off BIPAP today, but it didn't hit me to wonder about seizures until too late to coordinate that way.

Please pray that they will be able to understand Mallorie and what is going on. And/or that she will just go back to normal!

On a positive note, my focus on her breathing makes me not so concerned about whatever infectious room we have to be in. :) Because I briefly lost it today when the nurse gave me the canned story about how they are following procedure by keeping the 3 empty rooms (that the night doctor told me about, as she wanted Mallorie not to be in the infectious room) open for some patients that "really need them." I was upset enough about it after she came from the other side of the room to this side without changing out all her protective clothing, that I felt like finding out if there was a charge nurse to talk to. But then I took a really long walk to the dining room across the street, and remembered that someone had emailed that she would be praying specifically that God would protect Mallorie from any extra germs while here, and I realized ... He can do that. So I let it go.

There's a sweet respiratory therapist tonight taking care of Mallorie. Maybe a fresh pair of eyes will help.

Monday extubation

2010-02-15T21:30:00.003-06:00

Mallorie's tube was taken out today, and so far she is still that way. She had a bit of a rough time initially, from a swollen airway, and has needed some epinephrine breathing treatments, and has been on BIPAP almost the whole time since she got off the vent. When the mask slips, she can have trouble breathing again. But when it's on, she seems pretty comfortable. She is still rather sedated, and the neurology team thinks it's because of how long Phenobarbital stays in the body, besides the fact that they are still slowly weaning her off the meds, rather than abruptly stopping them. In a way, the lingering sedation is a blessing, since the airway swelling meant she had to have the BIPAP support ... and BIPAP does not look terribly comfortable to me.

Annabel's mom mentioned something about BIPAP or CPAP and watching for air leakage drying the eye out. It probably would have been on my mind already, but for sure, with her warning, I've been a tad obsessed. One nurse had left me a bunch of strips of Duoderm (an adhesive patch type thing) that she had cut for me to use, and we're using those to keep her the right eyelid patched.

And I'm a bit sleepy tonight. I stayed up till 1:30 last night, talking to another mom whose son was having a bad time, and is also on a vent. It was a pleasure to just sit with another mom of a child with extra needs, to know we both understand the sorts of things she needed to talk about. And it's a happy thing today to know her son is doing "a little bit better." When I listened to her talk last night, I listened to a story of a young man who needs lots of extra help with things other children can accomplish on their own, but it doesn't sound like he feels badly about his life. He's a joyful young man, and has a wonderful sense of humor. And is a bit spoiled, his mom admits. :) I so much want her to continue to have the joy of his presence in her life, and am praying for him today. But that's why I'm tired, and I hope this isn't too scattered.

Mallorie's new roommate has a couple of infections that are both very serious for little ones, so please pray that the infection control measures (hand washing or sanitizer, gowns) work well to keep Mallorie from contracting anything new, because apparently, neither Mallorie nor her roommate is going to get a private room. And all of Mallorie's cultures have come back negative for whatever they tested for. They are thinking (I think because of the CT results?) that she had a sinusitis that just wasn't clearing up, and that's what led to all of this.

No more seizures, tube out still, and maybe (?) will resume feedings tomorrow. She was scheduled to go have a PIC (IV) line placed tomorrow, which is procedure which would require her to be reintubated! But her IV that was placed in Beaumont is still in place; they had just had some concern because it had started bleeding at the insertion site a couple of days ago, and they wanted a really good, reliable IV at that time. But since now she's at a point where she's off the vent and all her meds that she is receiving can be switched to be given through her feeding tube, I am praying that they just decide to wait on that plan.

I figured it out.

2010-02-14T20:24:00.006-06:00

Sunday - PICU

2010-02-14T19:47:00.004-06:00

I woke up this morning (after sleeping TEN hours in the waiting room, yikes) and came into Mallorie's room to find her waking up, stretching her arm high above her head. She has been more and more awake today, which is great for us - not so great for her, as she needs to wait till tomorrow before she will have the tube out - so they will probably give her small amounts of sedation through the night to allow her to rest. She seems to be telling us she is READY to get the tube out, now that the seizure medications are getting out of her system.

Mallorie also has been getting milk all day through her g-tube, so I'm sure her tummy is feeling good. I was telling the nurse today that it feels like she has been doing a little Sleeping Beauty thing, and it's been good for her. The skin on her bottom had been pretty bad, since she'd been on antibiotics a few weeks ago, but here she's had a catheter in, and has had her diapers open and the nurses have kept air blowing through a tube onto the skin, and a wound care nurse gave some suggestions to try at home in the future, like chamomile tea directly on the skin. Her eye has been faithfully treated with lubrication and kept closed, since she's been asleep all this time. There is a white "patch" that is over the area of the ulcer which we are just leaving be, and putting the lubrication over it. I think it's some sort of scar, and I have to think that is a good thing. It's what the eye doctor said to hope for.

So no seizures, still some fever (I don't think it's hit 102 today). And planning on trying to take out the tube tomorrow.

She's had some amazing nurses this entire time. Allison in the day shift, since Mallorie has been here, and Megan at night. They advocate for things that matter to me, and make me feel safe going to sleep in the waiting room at night, and going to church today. Both should have a day off, starting tomorrow, but for tonight, I know Megan will be hovering protectively over Mallorie while I get some rest.

And today, a comical respiratory therapist who has me in stitches, whenever he is around. The last thing he said before he went off shift, was to the other therapist who had helped him suction and retape Mallorie's tube. If you were single ... and weren't my cousin ... you'd have to watch out. They really are cousins. Because of Tim, and the way he's been messing with all the people around him today, planning on making quilts like Mallorie's for the "Man Cave" that he and another therapist are creating, .... I've laughed so hard today, and it's a great thing.

That's it. All good news. Oh, and she's out of "droplet" isolation because the tests have all seemed to have come back negative, even for flu. Not that she didn't have anything, but she's at least negative for the things they would isolate for.

I hate that I can't show the pictures I got of her today in the big-girl bed, and moving her arm all around as she started to wake up. I can't use the cell phone for pictures in the PICU, because the phones have to stay off. And even though the kids brought me a cable for the camera today, I can't figure out why it doesn't work to download the pictures.

The girl can move.

2010-02-13T18:38:00.002-06:00

This morning, I was given a report of things that happened while I slept, including that Mallorie had had some visible seizure activity, and had received an extra dose of medication for that.

This evening, the main neurologist who has been covering her, said that the 24 hour EEG they had been doing to watch for seizures had shown NO seizures. So I asked about the seizures the nurses saw last night. The doctor said, "Well, she was moving her legs, and we were going to ask you about that. Usually people who are paralyzed can't move their legs."

Well, Mallorie can. The nurse later asked me, "Purposefully? Rhythically?" Well, I didn't see what they saw, but I know if she listens to some Bob Marley, she does like to move her legs. And arms. Maybe she's paralyzed, but she does move those legs. I have no idea what they saw, but the EEG did not pick up any seizure activity while she was moving those legs. And it reminded me again, that it's really helpful if we can just learn not to let our moods go up and down with whatever the news of the day happens to be. Not that I'm good at it yet, but I'm very aware that I'm getting a chance to get plenty of practice.

So they are going to start to wean her off the seizure medications to see how she does. And they will see if she starts to wake up and try breathing on her own as they change the ventilator settings.

She's been started very slowly on milk feedings through her tube, and seems very comfortable. If I had a cable to download the pictures I got today, I could show them, but I don't. She's 3 years old, so she is sleeping in a "big girl bed" (adult bed). I had to quickly get some pictures before I let them know that when she starts waking up, well they're going to want to put her in a crib. Because the girl can move!

Thank you all for praying.

In the hospital at 3 years old

2010-02-12T09:18:00.005-06:00

Mallorie is at one of the big children's hospitals in Houston. She tested postive for flu. Not confirmed yet, because only 1 of the 3 flu tests done was positive, but it's a possibility.

What she does not seem to have, but had yesterday, or at least was being considered for:

A fever above 107 degrees. She was hovering between 101 and 102 when we first got in her room this morning, and got tylenol for that.

Seizures, right now. And she's not on any seizure meds, although she definitely had a couple of types of seizures yesterday in the ER at home. But there was that whole 107 temperature thing going on. She is having an EEG done soon (the leads are being put on right now) to make sure there aren't any seizures that you just can't see, but definitely the visible seizures are gone, and without any more seizure meds to cloud the picture.

A shunt problem, by any of the testing done so far. She had hydrocephalus even before birth, and several months after she was born, she had a tube placed into an area inside her brain to drain excess fluid from around her brain down to her belly, where it can be absorbed easily. The neurosurgeons were able to take some fluid out of the shunt (sparing her a needle into her spine) and sent it to the lab for testing, and so that is still pending. But from what they saw on the testing done so far, it doesn't look like the shunt was a problem.

An abnormal heart rhythm. Yesterday in the ER, there was talk about a fast rhythm called SVT, but her heartrate is in a more normal range now.

What she does have:

An beautiful IV in her right arm, found via ultrasound by Bob, IV Guy in Beaumont. And now a 2nd one just put in behind her right knee by Tony, IV Guy out here. No one has even let me cut a lock of her hair off, because they aren't all that interested in her scalp veins. And blood for another blood culture has been drawn from the same spot.

A tube in her throat and a machine to breathe for her. Which is something I thank God for, and wish the whole world had the same access to superb medical care that we have in this country. They are seeing how she does adjusting to different vent settings, to see if they might be able to take out the tube today.

Her feeding tube, so she will be able to easily be fed at some point if they don't decide to go ahead and take her breathing tube out. If they are considering taking her tube out, then they will hold off on feedings, because it's safer to deal with that if the belly is not full. But I love her "g-tube." It's been a blessing so many times since they first put it in.

Breast milk in the freezer at home from some generous, loving, angels. John will go back home and return with some tomorrow, but if she needs some to start feedings today, we'll figure out something. Her nurse just turned down her sedation med, because they are doing some trials with her vent settings, to see if they can wean her off the vent today. She just had a period of apnea and isn't taking big breaths, so I am not sure today will be the day.

Please pray for her to recover quickly from this illness, and to bounce right back to being her same, loving, joyful 3 year old self. Her birthday was the 6th. She has a thing with hospitalizations on or just after her birthdays. The little snot. We love her so much, and I miss cuddling her. And kissing her sweet mouth. And having our family together.

Celebration

2010-01-18T18:11:00.003-06:00

Scenerio #1: Mallorie is NPO for a certain number of hours, has an IV placed after who knows how long, is put under general anesthesia, and has her eyelids sewn together over her right eye. We are told it will probably be for life. We wait anxiously through the surgery and the recovery time, and drive home.

Scenerio #2: Mallorie has an appointment with a new opthalmologist. The resident she is helping to train, and the ophthalmologist both spend hours, asking good questions, and really listening to things we can tell them about Mallorie. Things you wouldn't know about her if you simply knew her gene make-up. Or knew another child "like her." The ophthalmologist does a really thorough exam, and agrees that surgery is NOT the best or first option for Mallorie. And that really good lubrication and effective taping at night can possibly accomplish the same thing. Tells us that we are doing a good job of this right now. Gives more specifics (like using an ointment at night with the taping, and not just a gel or drops). Says she will see Mallorie for a follow-up appointment in 2-3 months, unless we have a problem and need to see her sooner. Then we can just call, and have her seen on an emergent basis.

If I knew how to dance, I would have to record it for all of you to see right here. We had scenerio #2 today. And I am dancing in my heart. The new doc did say that in children under age 5 yrs, if an event prevents visual input from reaching the brain for any prolonged period of time, vision is lost. Permanently. I choose today not to worry about that. If that is the case for Mallorie, then what is done is done. It is still preferable to other things that could have happened to her, and I choose to focus on the gift of being free to cancel out on the surgery which we felt rushed into, and had no peace about. I am thanking God for the respiratory problems that made us have to cancel the surgery plans, and gave us time to meet this new doctor. Plus, I know some really happy children who are visually impaired and even blind. I don't expect Mallorie to start losing her joyfulness any time soon. And her unaffected eye is good, externally, and in the back (inside). She doesn't need glasses, and everything about that eye looks good to the doctor.

I left that office today with a weight off my shoulders and so grateful for good medical care, which includes listening, listening, listening.

Update on Mallorie

2010-01-16T15:49:00.009-06:00

For me, not updating the blog doesn't always mean bad ... usually it just means too busy with work and then trying to catch up when I'm home again. But, sometimes it means things feel bad. The pause this time was from my low mood. I'll update about me, later.

I can't even remember what I've said here about Mallorie's eye. Mallorie's always had some "eye issues." And I've always been sort of fixated on her eyes. While I was pregnant with her, I remember looking at the Living with Trisomy 13 site and noticing that a good number of the photos showed beautiful children whose eyes appeared assymetric, and in the one prenatal picture we had of her, it appeared that Mallorie might be missing an eye (to me ... which is silly, now, considering that was probably something the doc doing the ultrasound might have mentioned, right?). But I was prepared for her to have only one eye, and tried to prepare the kids and John. But when she made her appearance, she had 2 very beautiful, bright eyes, and she seemed to watch the world very intently. However, we began to notice that in several of her NICU pictures, she would have one eye open and one closed, and sometimes when I'd call the NICU to ask for a late night update, the nurse would tell me, "She's peeking at me right now, through one eye." I wondered if the eye that was always closed had some sort of problem, was slightly smaller, had weak eyelid muscles? It took a long time to realize that the left eye that was always closed while she was "peeking" at us was not the problem. It was the right eye, which would stay open during sleep, which was the problem eye.

Then we noticed a hazy area over a section of that eye, right in the zone where the eyelid stayed open while she was sleeping, and others noticed it, too. John even tells how once a nurse tried to "wipe" off the hazy surface with a q-tip during a hospitalization, thinking it was a bit of an eyelash or something. Makes me cringe, now, thinking of that, but what did we all know? We started her with an eye doctor, who said it was due to not fully closing her eye, and maybe a decreased blink response, and suggested different drops and ointments to manage the problem, none of which caused any improvement, but might have kept things from progressing too fast. We also started taping her eye closed, because another mom told me that is what they do for her son. When I asked the eye doctor about that, she agreed it might help, as "lids are better than lubrication."

Then I had surgery, and during that time, Mal got extremely dehydrated, and suddenly what looked like a superficial haze over her eye surface turned into a depressed area. We have been told that the only appropriate treatment at this point is to get her eyelids sutured together to allow the eye to heal. Remembering lids are better than lubrication, I "get" this plan, and there's stuff all over the internet about this. Some sites say there are really no "risks" associated with the procedure. Others list things such as the stitches tearing through the thin tissue of the lids and causing permanent damage to the lids and scarring.

Here are the risks I think of.

Permanently losing visual input (if the procedure is permanent, as the doc suggesting this surgery had casually said it probably would be). Her first eye doc said specifically not to tape her eyes during the day, because she would lose vision.

Risk to her from being put to sleep for the surgery.

She has always done really well being put to sleep and had no problem being extubated. Except once. And that time kept her in the hospital for almost exactly a month, most of that time in the PICU on a vent. It was a month I never want to relive. Our entire family suffered greatly in that month, and we came close to losing Mallorie more than once. Dr. B had to talk me down at 3:30 am when I was losing my mind because I thought they were going to kill Mallorie through just not seeing HER. There was great and continued pressure to agree to a surgery that I believed in my heart she did NOT need, and would have put her at more risk at that particular point in her recovery. I learned through that hospitalization, that as hard as it is to fight, all alone, for what you believe in your heart is right, you have to. Her primary doc during that hospital stay told me at the very end of her stay that he learned from her, and hoped he would be a better doctor because of it. That we were probably right about Mallorie, and they were probably wrong. And that she was lucky we had stood firm.

Mallorie has had respiratory problems for over 2 weeks, now. It started with a cold, which she got over VERY quickly, faster than the rest of us. (THANK YOU, milk mommies.) :) But she has continued to have nasal congestion and (obstructive) apnea from just working so hard to breath through nostrils swollen closed, and a dry throat. She snores, snores, snores, snores, ... and then poops out. She has had stretches throughout each night (except last night) of oxygen saturation levels in the 70's, and has to be continually repositioned, repositioned, repositioned, until she will breathe again. We have to run oxygen near her face at night (not good for keeping the eyes moist, BTW) just to keep her levels above 85%. So we've obviously had to postpone the surgery because of her respiratory situation, and all the time I've been praying that God would either just heal her eye, or that someone would come up with an alternative to needing to put her to sleep to sew her eyelids closed. Neither of these seems to be happening (yet). And I'm also praying that I will feel more peace about this procedure if it is what needs to happen. We obviously are not willing to risk the loss of her eye, just because we don't like the sound of the plan being offered.

And then I found this a couple of days ago. Cyanoacrylate is ... Crazy Glue, Super Glue, whatever you call it.

Please pray that someone whose opinion about Mallorie's eyes matters, would have open eyes and an open mind to at least wonder about this as a less-risky alternative to anesthesia. Maybe just as a first resort, holding the possibility of permanent closure as a back-up if this isn't successful. I know, I'm asking for a prayer for a miracle. But that's what I do these days. Luckily, I know a God who does miracles.

Some old pictures I found on a CD today.

2010-01-01T18:05:00.005-06:00

Exceedingly abundantly. (You know who you are.)

2009-12-29T18:36:00.004-06:00

Earlier this evening I got a text from God. I know, crazy. But a friend sent a text that might as well have said, "Everything you need, I will provide. Before you have time to think of it all, I will arrange it. love, God"

What the text was about may or may not be how things are actually supposed to work out, but that isn't the point. I was simply reminded, the night before my first MD Anderson appointments, that my God shall supply all [my] need, according to His riches in glory by Christ Jesus.

I can pray big, because God is able.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Ephesians 3:20-21 NIV

Appointment on Wednesday

2009-12-28T22:47:00.003-06:00

I have an appointment at noon on Wednesday at the major cancer center in Houston. This is a wonderful thing, a huge answer to prayer, to not have to wait weeks and weeks just to get an appointment.

We are so grateful to those who are helping with the kids, including Mallorie. John got the information about the appointment, and was told to plan on being there 2 days. I don't know if it was "at least" 2 days, or just plain old "2 days." A friend who has had to go to the same medical center recently said that she had been told to plan to stay as long as 5 days, so that's been on my mind, wondering.

I'm nervous (major understatement here), but more relieved to have this day come because it feels like life is on hold right now, knowing nothing of what to expect. Will there be weekly treatments, more often, less? Can any be done locally, or all out there? I think that some of those answers, if we get them, will help with adjusting our lives to this. Some answers, I know, are just to wait and see. Never has been my biggest forte, the wait and see part, but I am sure I will learn.

The kids are starting to really show signs of problems coping with the news, so please pray for them as you think of us. They are just kids, and it's very hard on them.

Revealing

2009-12-13T20:57:00.002-06:00

I'm sharing a little more, because it feels a little like being a fraud not to update the balance to the last post. Debbie, you wanted updates - well, here is one.

I'm not strong, not really. And since Mallorie, I cringe when I hear it said, because I know more than anyone how weak I am. During the time I carried Mallorie, I had no reason, really, to expect her to be born alive, or if she was, to be with us long. I think it took me a month (because of my habit of "trying" to be strong, I guess) to reach the end of my own reserves, pick up the phone to my OB, and ask for help. She found me the most wonderful priest/therapist to meet with, and both he and the OB learned better than anyone else how very not-strong I was. On each and every appointment with either of them, basically 90% of what I did was sob. It was therapeutic, mainly, because I was not alone, and they patiently allowed me to let it all out, to stay current with where I was. There were no epiphanies, and there was no "resolution" or growth during that point, that I saw, or that they probably saw. I was a dripping wet rag, wrung out weekly, by the time delivery approached.

But God did a work in me that I really didn't see the results of, until this side of delivery. I started the pregnancy as a girl who knew in my head and honestly believed that I was loved by God. But it was more like knowing there is a loving God and that He created me, and gave me gifts ... just as He loved everyone. I had zero doubt about that part. But I never, ever felt very special to God. Yet, the unwavering belief I had when we left that ultrasound where we learned about all the "anomalies," and went over to see the OB, was that the baby I was carrying, with all his/her abnormalities, was all about God letting me know He loved me specially. Where did that thought come from? I have no doubt it was placed in me by God, because it sure didn't follow logically.

I didn't instantly feel special to Him, either. That change took several months to accomplish in me, and lots of ups and downs (mostly downs). I am so grateful for that time, though I think sometimes that if I knew then what I know now, it would have been so different! I would have laughed in ultrasounds, instead of staring up at the ceiling. But, without going through those dark periods during which I had no idea at all of the outcome, I would not be where I am today. Not because Mallorie lived (though I praise God every day when I look in awe at her grin, her healthy body and bright spirit), but because He stayed close to me that entire time, understood me, listened to my prayers, my pleading, my cries, all of my thoughts, and never seemed to not "get" me. I was never abandoned, and I watched first-hand as God provided for our family just the right people in our lives to pray, to support us, and to go through all of it with us.

So here I am, again. After then initial shock settled in, true to form, I sank. I had read that getting lots of sleep was important in fighting cancer, and since I had just had surgery, I did a lot of sleeping, when I felt like it. I got tired really early of telling the same story to everyone in my life, so I stopped answering phones, and left it to my family to do that. I didn't sleep all day, but didn't do a whole lot else, really. THAT is me. I'm not strong, I'm not brave, I'm not really full of faith. And I'm an impatient mother and wife, and sometimes just plain mean if I'm really stressed.

But what I said about the One who knows this road? That part stays true, no matter how much I go up and down. And the difference this time is that I have a history with my God, now. I know Him as a Father and Brother who will be there every time I look for Him. I will see Him sometimes in the faces of sweet sisters and brothers who bring food for my family. In the form of donor milk for Mallorie that arrives just at the right time, and erases my fear of having to deal with dietary changes for her right now. In the texts and emails that arrive to tell me I'm being prayed for, or that include scripture verses that speak truth to my spirit. In my husband's voice when he tells me that for the first time in his life, when he was in a group of men (for his ACTS retreat reunion), he felt that he truly fit just as himself, no effort, felt accepted. In my children's voices when they tell me funny stories that tell me in the subtexts, that others are loving them and watching over them.

I guess my biggest need, besides prayer for healing, is that I will open myself during this time to the people all around me who longed to be God's arms of comfort while I was pregnant. Because THIS time I do know what I didn't know before. That I am not strong, but I don't need to be. That I am not alone, and am not meant to be.

The verdict

2009-12-09T20:50:00.002-06:00

I had my follow-up appointment with the surgeon this afternoon, and learned that what was removed was cancer. Well, that was actually a shock, more, I guess than it should have been, but I had no strong feelings that it would be positive. Shows what I know.

I do have to have chemo, now. Talk about a whole new road ahead, and I don't know the route. But I do know Who does, and I am still amazed by His care for me. The tumor that showed up on the CT that led to us finding this diagnosis, was not in the bowel, but nearby. I had several months of recurrent vomiting, that resulted in the CT being done in an ER visit. Then, one more episode of vomiting, and then NOTHING. The last time I had the problem was June. But nothing about this tumor would have caused symptoms, yet. In fact, the surgeon today said that it might have taken a year more for me to start having symptoms, and by then, it would obviously have been more advanced. So I've been thinking that God just wanted it out, and allowed me to have all those episodes just long enough for someone to have a reason to do the testing, so this could be found early enough.

I have prayed during this waiting period, that it would NOT be cancer, and kept adding, that it was because I just want an easier route. I mean, God already knows, but I guess I wanted Him to understand that I feel safer with Him now, since Mallorie. Safer in His choices for me. More confident in His love, so I didn't always say it, but He knows what I meant ... that I knew He knew best for me, and I was deferring to Him. And God loves me, and clearly wants me to grow some more.

So please pray for me while I learn and grow. And for my family.

Home again, home again.

2009-12-08T19:15:00.003-06:00

Mallorie's bloodwork looked good enough this morning to go home. Becca and Tamara had set me up with movies & DVD player to help me not be bored in my own recovery period, so I finally got to watch a bunch .. and silly me, got just 3-1/2 hrs of sleep last night before the morning labwork had to be done. Then discharge stuff, then speech therapy, and home. I'm wiped, but Mallorie is just happy, and herself!

And I heard Dr. B got good news today. I think she needs her own blog. :)

My appt with the surgeon is tomorrow, so pray as much as you like for good news for me, too. :) It'll be another long day, because Mallorie sees her kidney doctor in the morning, and I have lots of things to discuss with her, since Mal is back on the potassium supplements along with the sodium. Then my own appt will be in the afternoon.

Anyone else feel this tired?? But I'm such a happy girl, with Mallorie back home and all the other good news around here.

Ida does, too, do scalp IV's. So does Mary.

2009-12-07T17:37:00.003-06:00

My turn in the hospital with Mallorie; she began vomiting this morning just before her follow-up appt with Dr. B, and her last labwork didn't look good enough to send her home with. So we have a beautiful scalp IV in place, and fluids going in that way, and through the wonderful g-tube. I am so grateful for good nurses who don't give up, and for the pauses for prayer prior to attempting a "stick," and the praises to God for surprise successes. And for good friends who stop by to check on us (thanks, Pam). And for great medical care.

My follow-up is Wednesday, so I hope Mallorie is discharged by then. And Dr. B's surgery will be Wednesday, too.

I'm here and prayers for one of our real-life "angels"

2009-11-29T19:56:00.005-06:00

OK, since Annabel's mommy "outed me" (and I don't mind, seriously), I might as well update. I only learned Friday evening, at about 5:30 pm, that I needed to have surgery. I was given the option of waiting till after the holidays. Um, no thanks. Not sure what kind of holidays we would have had, waiting for the inevitable surgery! So I was able to be scheduled for Wednesday, and was safely back home yesterday, and those of you who knew to be praying for poop? Well, you may stop, now. :) Thank you.

I will learn more about what comes next after the post-op appointment which hasn't yet been scheduled. And I know, now, the secret to not gaining weight on Thanksgiving.

The biggest thing that is weighing on my mind, now, is that my very dear friend, Dr. B, is waiting for something very similar to take place soon. She is a gift God chose for me and my family long before Mallorie had been conceived. She was one of the special ANGELS in the delivery room when Mallorie made her appearance, after praying for her in the nighttime before. She is one of the most vivacious, giving, fun girls I know. When she was pregnant with her youngest, I hear she did handsprings in the office to freak out a coworker who had gasped when Dr. B had raised her arms over her head, because of an old wives' tale about choking the unborn baby that way. Years ago, when I worked on the pediatric unit floor, if I was clocking in and heard her voice, I grinned and took off to get into the nurses' station before I could miss the chance to have her start my day off laughing. I wish all of you knew her, but even if you don't, please pray for her healing, and for her to be filled with peace today and in the coming days.

She's the one who is spoken about in the sidebar to the left, ....her amazing pediatrician [who] said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick."

So are you and I, Dr. B. Here for the long haul. As you have said before, we have far too much work to do. We adore you. I just want you to have the peace I feel for you this evening, too.

PS, John has Mal at the ER tonight. Hurry up and get well soon! We have lots of work for you to do. We're thinking it up as we go. ;)

Our little Picasso

2009-10-07T21:22:00.016-05:00

Vital Stim

iPod You Can't Stop the Beat (Hairspray)

Outside with Hannah

New Becca sensory room

I love daddy

Love my hand, too

For Arthur C.

Hammock joy

Sorry. We've had some sickness and some more serious health concerns in our home, so haven't been thinking of any blog in awhile. Do these make up a little bit for the absence?

Constipation woes are gone. It's either extremely well managed with our new poopy program (hate "bowel program") of cod liver oil plus Baby Calm (magnesium & vitamin C) plus Activia . . . or it's another GI virus. (Man, will I be upset if it's only a virus.) The program is working SO well that we have discontinued all Lactulose, and none of us can remember the last time we gave a 3 am enema! They had been nightly, until we brought her in to see the lovely Dr. B, who read me the riot act about how my pig-headedness about chemicals was hurting Mallorie. Well, my interpretation.

Cloth diapering is a bit harder when there's poop with every diaper, though. :) Do you really think you hear me complaining? I assure you, I'm NOT! Cloth is way easier than anyone led me to believe, as long as you have a washer, and an extra load a day beats giving enemas, hands-down! And we don't have stinky trashbags full of poopy disposables to take out all the time. This was one well-kept secret, I tell you.

Rhyder Anderson

2009-09-13T11:19:00.002-05:00

Cathy has "introduced" me to Rhyder's parents, who are so sweet and so much in love with their baby boy. He is now in the hospital, and they say the plan is to stabilize him on caffeine to control the apnea, and then he can go home again.

Please pray for Rhyder, that his apnea will quickly be controlled through the caffeine, and that all his other body systems will work well.

And for Michele and Dave, who did not get very much sleep last night. May they receive all the support, equipment, encouragement, hope, and excellent medical care they need to bring Rhyder safely home. And some restful sleep, too! :)

I know we all look forward to learning more about Rhyder's life, so I was glad to learn today that his parents have started a blog for him. It's at http://rhyderanderson.blogspot.com/. They are also on Facebook, but I have tried, and can't figure that thing out. Maybe those of you on facebook will know more sooner than the rest of us, and can fill us in?

Let's hope Dr. B doesn't see how low the chest-bar was in this picture.

2009-07-25T12:50:00.001-05:00

Or whatever it's called.

Please pray for this sweet Bird

2009-07-20T20:04:00.005-05:00

Jessica home with Alex , but he is experiencing post-operative pain. I asked her if I could do a post asking for prayer for him, and she said I could.

If you follow Alex's blog, you also know that Jessica is near the end of her pregnancy with Alex's baby ~~sister~~ sibling. (Just teasing, Jessica.) She must be exhausted, physically and emotionally. Please join me in praying for relief from pain for Alex, and for restful sleep for both of them tonight.

When I first tried to post, I had thought he had needed to remain in the hospital, but thank God, he was well enough to go home. There is just NO place like home.

I'll be praying for your little Bird, Jessica. You get some sleep!

I'm sorry, Alicia.

2009-07-06T18:27:00.005-05:00

When someone came by to see Mallorie today, I proudly held Mallorie on my lap, demonstrating the new squirt bottles we have been using for Mal's tube feedings. Matthew had just quickly blended up a nice blend containing baby food chicken, pureed beets, peaches, and milk. As the bottle warmed on the table nearby, I excitedly told her about how we've been so successful at getting solids into Mallorie without causing constipation, and how nice that is. How over-pooping is so much better than constipation. And then I started showing her how it's done.

In the sentence, "Matthew had just quickly blended up a nice new blend, ..... pureed beets, ....." the words quickly and beets might be the key words.

Because about 2/3 into the feeding, I hit a point where I couldn't squeeze the food out anymore. So I squeezed harder. And it splattered all over Mallorie, me, the table, carpet, my calendar. It took me a few minutes to realize that it was also all over Alicia. And the paperwork she had brought with her.

Red-faced, I turned to Alicia and said, "At least it was you. And not someone else."

Whatever that stupid sentence meant! So now I'm sure she left here wondering why I might have thought it was better to spray her clothes with staining beets and pureed meat than someone else.

Hard to explain

2009-07-04T17:14:00.013-05:00

I find some things in my life to be hard to explain.

The joy I find in squirting baby foods into Mallorie's g-tube.

The excitement of finding new things to use in nontraditional ways.

The things my children say.

I'll start from the beginning. I met a mom recently, who was very enthusiastic about feeding her little boy, who happens to have special needs, a g-tube, and some oral aversion issues. She showed me a pretty squirt bottle she had in her fridge, that she had filled with pureed sweet potatoes. I think the bottle was fuschia, which contributed to the appeal for me, because I love color. The bottle had a soft tubing at the top, and the mom explained that in the intensive feeding program she'd done with her son, they had taught her to use the tubing to direct some of the puree into the back pocket inside his cheek. She said that once the food's there, the child has no choice but to swallow it. I wondered about choking, but know I've seen some people administer liquid meds that way to their children, so I thought I ought to get some bottles like hers. The Zip-N-Squeeze bottles we use to give Mal liquids wouldn't have a thick enough tubing.

In Mallorie's next Speech Therapy I mentioned it to Becca, who explained about all the factors involved in the normal swallowing process, and how bypassing some of those can set the stage for aspiration. So I've canned that idea, but before I had spoken to Becca, I started looking for squirt bottles to use.

I never found any with soft tubings, but at Wal Mart, next to red ketchup squirt bottles and yellow mustard squirt bottles were these cool colorless bottles. I bought a few, and filled two with shampoo and conditioner, and now we have refillable squirt bottles for the shower. They look so pretty with the pastel blue and pink liquids inside, that I smile every time I look at them. So pretty that we filled squirt bottles with baby bath liquid for the bedroom and other places where we change diapers. We rinse paper wipes with warm water and use baby soap for diaper changes ... or we use those cool flannel wipes Matthew and I made, so we use a lot of liquid baby soap.

I kept trying to think of more things to fill those bottles with. Ketchup, mustard, honey ... so boring. Everyone does that. I thought about dish soap, and sent Carley to Wal Mart to get more bottles while I kept imagining things I could put in them.

She came home with some smaller bottles, that are for making candy, and I got the idea of using them for tube feedings. We have always used syringes, but after several uses, the rubber stoppers on the plungers tend to wear out. And some brands of syringes are harder on your hands. The bottles Carley found (2/$1.99) fit perfectly into the Mic-key extension tubing, and are effortless to squirt. They hold a little more than 6 oz, so we can fit 1/2 jar of meat and 1/2 jar of vegetable and a few oz of milk, shake, and have a feeding ready to set in a container of water to warm and give. We love them! Suddenly, it's easy to find help to mix up a feeding, because it's not like trying to suck puree up into a syringe, tap out the air, .... You just scrape the jars between 2 bottles, add milk, and you have 2 feedings in just a few minutes. And no one minds feeding her solids as much, since it's easier to push (or squeeze).

Eventually, we'll go back to trying blending fresh foods, but for now, the baby food option is working. We have been free of constipation for a couple of weeks, and I think the combination of fruit every morning and a magnesium-vitamin C powder I found at the health food store is the key. Well, of course, and avoiding ALL grains. :) It's the first time we have been successful giving solids for any length of time without inducing constipation. Yay!

And the things my children say.

It's been a particularly buggy year. I know it's not just our house that had trouble with fruit flies this year, because I bet 1/3 of the homes I visited (for work) had a handful of them flitting around. I know, because they always find me to bite! Unless Mallorie's around, and then they bite her. So we constructed all manners of cones taped to the top of jars, filled them with banana peel, oranges, etc. What ultimately rid us of the things was a beer-vinegar-molasses recipe I found online, and covering the jar we put it in with plastic wrap with a few holes poked in the surface.

And house flies. I'll just say that I hate them. Even if they don't bite. And with so many people, I'm forever singing out, "Shut the door," as people are going in or outside. Honestly, were they raised in a barn?? So I went online to try to find the recipe I found before for trapping flies. I really hate chemicals, and we live in a really buggy part of the country. It's not this way everywhere. I'm originally from CT, where things die off every winter; I know of what I speak. Yes, it's nice that we could feasibly garden something or other every month of the year here, but the bugs have also figured this out, and seem to be here to stay. Hard, when you're anti-chemicals.

So I found these ugly, but really effective products. They cleared up the fly problem in the yard, and the kids have been so excited about how fast they work. Well, most of the kids. Except Carley. She took this picture.

And said the fly traps were cruel and unnecessary punishment for flies.

I want to ask her why she's taking pictures of flies, and not Mallorie pictures for me to post, but I'm afraid I'll hear more of her animal cruelty theories. This is my child who coerces her brother to carry ginormous tree roaches outside before we can kill them. I probably should clarify that I am talking about what is known in Florida as Palmetto bugs and in New England as .... well, I never even SAW one of these things before entering the basement of my NY college ....

Old pics

2009-06-06T11:05:00.005-05:00

The kids promise to start taking a bunch of pictures this summer. Now that school is out. Especially college.

We miss seeing these kinds of faces. Ever since she had that tube overnight in January, her gag reflex is in full force.

Happy Birthday, Cathy.

2009-05-12T12:29:00.003-05:00

It's Cathy's birthday today.

And Annabel is being admitted to the local hospital for hydration.

Here's her blog.

We love you guys. Get well soon, Annabel!!

Long day, good report.

2009-04-29T19:34:00.003-05:00

We had a long day of medical appointments a couple of hours away. It was a day I didn't even want to do, because of just the risk I felt there was in going to that big hospital, being around sick kiddos all day, and I had already rescheduled these from a couple of months ago, to avoid being there during cold/flu season. Yet here we are, still flu season! If you know me in real life, you know there was some drama today at that very same hospital. New cameras all around the hospital exits when we left, including CNN. As Hannah says, there is a family today that needs our prayer. It is a sad thing to have a death of your loved child become the latest media excitement.

We saw renal doctor, cardiologist, and Physical Medicine and Rehab. The "big" one was cardiologist, but that's only because that one, for some reason, tends to make me a little nervous. We have had some funny interactions in the past (not recent past, though) where it felt that "silly ideas" I would share came across to that doctor like challenges. Or something. Like when I wondered aloud to a resident who came in and gathered information before the actual doctor came in, if her sudden need for oxygen 24/7 in that month, was cardiac. Because I was "sure" it wasn't respiratory. Obviously (though I can't remember how he explained it), I was wrong, but when he entered the room after hearing the report, he stood in a spread-legged stance, a smirk on his face, arms crossed over his chest, and asked, "So why do you think this is cardiac?" And pointed out that we had the nasal cannula positioned incorrectly. (I'm a nurse, and I know the prongs point upward into the nostrils, but for Mal at that time, with her cleft lip, we found it was more effective and less distressing to her if we positioned both prongs of extra small nasal cannula into the cleft, instead of trying to push both into asymetric nostrils. He was very impressed with how we adapted to her unique anatomy. Not.)

And once he played "devil's advocate" with me on the issue of genetic testing, and the sense of providing large amounts of medical care on someone "likely to not live long," and advised me that I seemed to think that because we lived in this country, there is no limit to resources. And reminded me that there is a limit to resources, even if I am confused about that. And he asked me what insurance Mallorie had! The answer I gave must have not gone along with his argument, so he never pursued that thread, and eventually he exclaimed, "We might as well stop this. It's like arguing religion. You can't argue these kinds of things."

Well, no, actually. You can't argue things like value to the life of a person who is nonverbal, cannot walk, feed by mouth, etc, and may never be able to do any of those things. You believe a life is valuable, or you do not. He's right, it is like religion, or faith in God. You can't be "argued" into such beliefs. I was glad he decided to quit, because I was really close to tears, and that wouldn't have been very helpful (for me). I remember at one point thinking (and saying) that no baby is born being able to do speak, walk, or self-feed, and no child is born with a guarantee of a certain lifespan. Yet at birth no one questions the right an infant has to medically necessary care.

Unless they are disabled. Particularly if the disability is associated with a rather high statistical risk for death. (Though I wonder how much the statistics are impacted by choices encouraged, and choices made, during the pregnancy and after birth. By medical professionals, and by frightened and vulnerable families.) Did I ever mention it took 2 days for Mallorie to get the surgery to close her back, after the bulging area from her spine had opened in delivery? Two days during which we were asked if we really understood what we were asking to have done? Because if she lived, after the back was closed, she might need another surgery later? Not touching on the point that not closing her spine would mean certain death? Two days of repeated urging to agree to genetic testing, because knowing what was wrong with Mallorie could help the surgeons decide what interventions they felt would be appropriate?

It was a random and meaningless point I was making, really, but it struck me at the time that Mallorie was born with pretty much the same needs and limitations as any other infant. It's her "potential" that seems to be the big point if you are questioning her right to care. Is it worth offering her a surgery, if she might die in a month or a year? What if she is not expected to ever grow up to be able to carry her own weight in this world and contribute meaningfully to society? Whatever that means.

It was a weird, and unsettling visit that day. I wondered, for a few days, after leaving that visit, if we had her under the care of the right cardiologist, if he was able to argue the "devil's advocate" position so well. But this man has never, ever indicated that he would not do surgery on Mallorie's heart, if she should need it. In fact, on our first visit to his office, he tentatively scheduled the PDA ligation procedure for a couple of months away, provided she could reach the 10 lb weight that is standard for that procedure. He only cancelled it when she showed up at the next visit and he couldn't hear the murmur associated with that hole, and the heart echocardiogram confirmed it was closed. So even if he actually believed some of the points he argued so well with me that day, he doesn't appear to let them influence his decisions about providing Mallorie whatever care she might need. And he truly might just have been speaking hypothetically, anyway.

But I do feel the need to be emotionally "ready" for those visits. And like to be early, even though we've waited a few hours past the scheduled visit time in his waiting room, more than once. I just like to be ready and without a need to defend myself when we go to that appointment.

And with Mallorie being still down in weight, from her recent gastrointestinal illnesses, I already expected some discussion about her intake. Can I just say that I absolutely, unequivocably believe this man's ideas? Once upon a time I had issue with the adding of formula powder (for extra calories) to her breastmilk tube feedings, because it didn't seem "natural" and I felt it contributed to her serious, scary diaper rashes. But over time, as her heart has continued changing, he has become one of my heroes. Not every cardiologist is so insistant about giving heart babies concentrated feedings, but this man never let it rest, and would use his watch calculator to quickly calculate how much she was ingesting, and how much it came short of his goal for her by her weight. On every visit. I absolutely believe he is one of the reasons Mallorie has done so very well, heart-wise, so the issue isn't that I just disagree with him.

Anyway, since she first started getting sick this winter, Mal's weight has dropped from her former 22 lbs to about 20.5 lbs, and I expected to be grilled about her caloric intake, and to have to explain/defend the fact that she's not gaining the weight back more quickly. He has really stressed to us that she needs (his estimate, even though he doesn't take into account her inability to move, and lack of big muscle groups) at least 900 calories a day. We just can't get even close to that number, without overstuffing Mallorie, and causing vomiting. She seems to be really settled on a lower weight right now, and our main goal these days has been getting enough fluids in her to keep away our friends, gagging & vomiting, ever since we realized low fluid intake and the gagging were connected. And we've had great success in this area, I might add. And we have realized that since she is at this lower weight, her apnea is amazingly improved. Still needs the caffeine, but has not needed oxygen at night in a couple of months! We think the weight is a factor, because at 22 lbs, she actually looked uncomfortable, and moved less. She is getting baby foods (through her tube in her tummy) and some goofy, fun supplements like fruit vegetable "green" smoothies with algae, wheat grass, etc., aloe vera juice, probiotics. She seems really alert and energetic, and we're excited about how healthy she seems.

But I forgot about the scheduled cardiology appointment, and how her weight would probably be a big issue. She weighed in at 20 lbs, with her clothes on! Then she got chest x-rays, as usual. The cardiologist came in beaming. He said her x-rays were amazing. Her heart, which had been enlarged all along, is no longer enlarged, and if he didn't know anything else about her, he'd have said she was a baby with NO heart issues at all. "And she looks great!" He listened to her chest, but as ALWAYS happens when she gets there, she suddenly had nasal congestion, which made him unsure if he heard a murmur or not. In the past, he has sometimes thought he did not hear a murmur, because of the congestion, and then the heart echo will show a large VSD. But he kept saying he feels so sure her VSD is closing, and that he wants to discontinue her digoxin and wean her off her lasix, and try getting her off potassium and sodium supplements that we have to add to all her fluids. He is that sure her heart is improving as she grows. "I just don't think she needs them anymore." He scheduled us for a heart echo this Friday to actually see what her heart looks like.

And as ready as I was to cloud the calorie issue with stories of algae-pureedbabyfood-aloeverajuice-acidophilus-didImentionalgae? .... not one word was discussed about her food intake, because, well, ... she is doing so great!

But can I just say now, because it didn't come up in that "dietary report" that just never was needed, that I believe in my heart that Mallorie's good health and quick recovery from all those winter illnesses is because of DONOR breastmilk she has been able to have, when my own supply dropped? She had such severe problems with the formulas we tried last year, and ultimately we learned this amazing secret, that there are moms out there willing to share some of their excess milk with babies in need. I believe this incredibly healthy gift is what has caused Mallorie to bounce back from the illnesses this winter, and allowed her to be well-nourished, even when she's not sporting a 22 lb figure.

And I will always, always, always be grateful to Mallorie's "milk mommies" for generously sharing their milk with her. It is such an amazing gift. But that is another post, entirely.

And I am so grateful to all of you who have prayed her through these past two years.

Annabel and Cathy needing prayer

2009-04-23T07:35:00.004-05:00

Annabel and Cathy spent the night in the local ER, and are waiting on a bed to open up at the hospital she JUST left yesterday, so Annabel can be transferred there.

Cathy says Annabel seems better, ever since she vomited upon arrival to the ER last night, but the results of the testing they've done in the ER concern the doctor. Even though Annabel has been sleeping peacefully, Cathy is beyond exhausted. She so very much doesn't want to have to go right back to Houston, but it looks like that is the plan. A friend stayed with Annabel this morning so Cathy could run home to pack for yet another hospital stay. She was up all night.

I know she doesn't have internet access in an ER room, and since she's never slept, I have no idea when she will be able to put anything on her blog.

But if you read this, please pray for sweet Annabel and Cathy.

Can anyone explain this?

2009-04-22T20:32:00.006-05:00

Mallorie will NOT take anything by mouth, most of the time. She sort of decided she liked food in November, and one time gobbled half of a stage 2 baby food jar, and was doing fairly well ... when she was in the mood for it ... with drinking milk from a bottle.

And then she had her brief intubation fun in January, and got almost so she didn't want us even squirting liquids in her mouth again. For sure, she wasn't having anything rigid like a syringe near her face, and forget bottles. Nothing resembling food in the mouth. One time I thought she might want to taste a speck of real banana and she gagged before I could count to 1, and barfed her tummy up. I get that; stuff in her mouth (we were suctioning her airway the entire night she spent AWAKE with that tube in her throat) she now associates with gagging and discomfort. So I decided we would back up, not push it. She has years to work on it.

A month or so ago, Becca, her speech therapist, announced that she was ready to work with Mal on feeding by mouth. What did I think she would like to try? Applesauce? Yogurt? Pudding? Right.

That night, I got a container of ready-made pudding, and after several minutes of persistence, she started licking and sucking it off the spoon, and ate almost 1/2 the container. I snapped a picture with the cell to send to Becca, and while it was sending, she barfed it all up. Then ate almost all that was left in the container. And barfed. I attributed that to her whole dairy issue. Anything dairy (formula, whey protein, cheese in baby food) seems to make her vomit and also gives her that nice bleeding diaper rash that just screams no-one-taking-care-of-this-baby.

So we got a package of instant pudding mix, which didn't have any recognizable dairy in the ingredients list. Mixed it with breastmilk, and ended up with thin yellow liquid. Then I remembered reading that breastmilk won't thicken with Thick-It, either, so I assume it was the enzymes in the milk digesting whatever starch is supposed to thicken the pudding. She also didn't seem to even like the taste of what was dripped onto her lips.

So we though about soy milk, which she tolerated during a recent GI illness. Added to the soy milk the sodium and potassium that she needs to have in her liquids, and mixed it with pudding mix on the way to therapy. Never thickened. I tasted it - ghastly! Salty and bitter and just plain liquid yellow foulness. She let Becca spoonfeed her the liquid gunk, and licked her lips. Go figure. Not gonna help her get more comfortable with thicker foods, but it's something by spoon, in her mouth.

I was pushing a syringe of babyfood into her tube a couple of nights ago, and it smelled so good that I thought she might like a taste. She did. And then she sensed a "speck" of pea skin or something and gave it right back.

So I gave up the argument, and planned to let Becca do all the magic, and reminded myself ... she has the rest of her life to get this figured out.

But ... sometimes if this cute girl is sick and running a fever, and the moon is in the right phase, and Hannah is around, sometimes Mallorie will grab a bottle and down 60 cc (2 ounces) in just a few minutes. No gagging, no turning her head away, nothing.

I can pretty much promise you, tomorrow, she will refuse it again, and probably gag and puke.

But today, I smell photo opportunity.

Jacob came up to me a minute ago. "Can you tell me 6 words that mean jail?"

Huh?

"Six words that mean the same thing as jail."

Um, prison, pen ....

"Huh?"

Pen, short for penitentiary.

"No, 6 words that I know. That mean jail."

Prison.

"I gave you a hint. J... J... Mommy, I already said the word."

Oh, yeah, prison, jail.

"Six."

I can't think of any more.

"OK, want me to tell you? Jail, prison, slammer, juvenile detention, juvie."

Who teaches them these things?

Long Winter

2009-03-29T19:21:00.009-05:00

Mallorie's had a rough winter season, with some respiratory stuff, and now some gastrointestinal thing, but she seems to be coming out of it.

I ~~probably~~ definitely bring her too late to be seen by her pediatrician when she gets sick. Believe me, this is NOT because I think I know how to handle everything, but more like I think I'm supposed to know. When I call the office for an appt, and they ask, "What's wrong?" (to write down the purpose for the visit), I stumble for words, wondering, if this is a time when I'm being silly. I should and do know how to handle diarrhea and vomiting, by now. Clear liquids awhile. Slowly advance to more foods. Avoid lactose for a little while. Right? So I figure I will get to the office and hear, "Well, you know what to do."

Monday, when Mal got her last RSV immunization for the season, I wasn't surprised to learn her wt was down. It was 20.5 lbs, her usual low. I'd do a not-me and say I didn't start giving her soy protein, since about a week prior, I triggered some diarrhea and vomiting and diaper rash by giving some whey protein, but I'll just admit I did. Gave her whey, and yes, I know it's dairy and that she is allergic or something to dairy. And gave her soy protein because I was in a panic and realized she needed more calories than she was getting and more protein. Matthew had sat down with me one evening, and using the blenderized diet book and reading labels on jars of baby food, unintentionally made me see just how little she was getting each day, while I was appropriately giving her pedialyte when she wasn't tolerating milks.

Yes, I remember Dr. B's comment that she didn't necessarily have to gain weight, but she just didn't want her losing weight, because then she was moving in the wrong direction. Well, I swallowed all the responsibility for the weight-loss, and drew the straight line between Pedialyte (at 100 calories per liter vs milk at 100-ish calories per 5 oz) to weight loss, and decided to start adding things again. You don't even want to know all that Matthew and I decided she should have, but I bought a bunch of canned meats, Dinty Moore beef stew, and soy protein powder, and went a little hog wild with her diet, plus olive oil.

Took me a day to realize she was also running a fever, and since her tummy didn't take so well to the new diet, maybe the combination was that she had what Matthew and Jacob had had? Or maybe just moving too fast, again!

Took me another couple of days to realize that she look weak. And really felt pretty light. And when she got extra sleepy about mid-week, I called the pediatrician's office. Know this first: Dr. B is pretty popular, and you probably want to call the day before or early in the morning if you want to beat the throngs making their way to sit at her feet. So are her colleagues. So calling at 1:30pm is silly, but I was lucky enough to get an appt with one of them. Here's what I learned:

Her weight was down to 20 lbs, with her clothes on, and a big granny diaper. Poor baby can't have a working mom and wear all cloth diapers when she's having diarrhea, sorry. Especially when her mommy and daddy are up all night dealing with babies vomiting and having the kind of diarrhea diapers that cause rashes.

I lose the forest for looking at all the trees. Yes, I even knew this before, but apparently, knowing it doesn't prevent it! Dr. W smiled, and told me to step back a bit, look away from the trees, so I could see the forest. Then he walked me through the steps which I already knew, but had to shut my mouth and listen to ... because I really wasn't following the rules! She probably has some sort of stomach virus, so clear liquids till she can go 8 hours without vomiting (and he gave us fluid rates, since she was probably somewhat dehydrated, I loves me some numbers!). After 8 hours of no vomiting, we could drop the rate, and see if she could take some soy milk (doesn't have the lactose that breastmilk has), and work slowly, slowly moving beyond with the diet. He assured me that Mallorie, like any other baby, can go a little while without "proper nutrition." I cannot tell you how very badly I needed to hear someone tell me this. Another couple of trees for me .... I worry about protein intake whenever Mallorie gets her diaper rash and it won't heal, and about calories whenever I actually do a calorie count. I worry about her heart's VSD not closing, ever, because of inadequate nutrition. Heck, I worry a lot.

After all we've learned about Mallorie and soluble fiber, you probably won't believe I had already given her a whopping dose of oatmeal plus rice cereal the night before we brought her to see Dr. W. Thank God, she barfed the first time we tried that. And it's also good that when I spoke to Dr. B the next night, she told me giving her cereal when her gut was still messed up was rushing her too fast, because that meant she only got cereal the one time. Because last night she was screaming the cry we recognize from when I've done this before. We gave her lactulose and 2 enemas, and I've asked all the kids to remind me to put the cereal down the next time I get a bright idea that she can "take it" if she has watery poop. She can't.

Some things I've learned:

I don't need to wait till Mallorie is quite sick to bring her in to be seen by a pediatrician. Even if they do actually look at me funny, and tell us she's fine, it's OK.

I can't remember one other thing when I try to figure out calories, or protein, or some other detail. Pediatricians are good about helping someone like me with the whole picture.

I love Dr. W. And who knew he'd be so good at calming me down, considering Mallorie weighed in at 20 lbs, and mommy guilt oozed out of me in that moment of truth.

But I missed having Dr. B lay her gorgeous brown eyes on our baby.

Dr. B says it is always OK for me to bring Mallorie in for even minor illness. That it's what she's there for. And when I spilled out some of my crazy (how I worry over her VSD/protein intake/calories/what-have-you), she told me I could let her worry about her. And when I said, "So, OK, it's on you," she agreed. And here is a rough quote: "Yes, you are absolved of all responsibility, if you let me handle it." Apparently, by how light I felt at the end of that conversation, I was in need of a dose of absolution!

Dr. B is the queen.

And her colleagues also rock.

Mallorie is in some very competent hands.
Ignore the dates. These are from today. I couldn't figure it out in time to fix this, and am NOT going to try moving them from the camera to the computer, again. This was already over my head!

What Jacob says it takes to make Mallorie smile. As if he needed an excuse! :)

Need a New Name for Puke

2009-03-07T23:07:00.006-06:00

This blog thing is not Mommy's cup of tea, after all. But just so everyone knows I'm fine, here's a recap.

Saturday, Sunday, Monday
I wake up, play, listen to music, get lots of kisses. Mommy decides it's Serious Food Days, so I get beef, chicken, boiled egg yolks, peaches, yogurt, applesauce, bananas, green beans, squashes, brown rice, peas. Not all at once, sillies. But I do really well, and everything seems OK. Then I puke Monday evening and night.

Tuesday
Mommy decides the puking I did through the night might have something to do with pooping too much and decides maybe the magnesium/vitamin C stuff she gives me is "too poopy," and she doesn't like how my diaper rash just stays so bad. So she decides it's a day to try Warm Water With Prunes, instead of magnesium stuff. Yummm. All day I poop, get milk, listen to music, play. And puke. I use lots and lots of those cool new flannel wipes Mommy and Matthew sewed just for me,

and wipe out my supply of cloth diapers.

Wednesday
Mommy decides I'm pooping too much, and because she hates that my butt still looks bad, she decides it's a Barley Cereal Day, and so I stop pooping, just like that. I get milk, puke, and get lots of baths, so I smell great, anyway. I listen to Raffi. I puke some more. Mommy refuses to call it reflux, because she hates all talk of surgeries to treat reflux and puking. No idea why she calls it puking. Maybe we should call it a name no one else knows, except the family! :) Mommy hits the "volume" button on the feeding pump at about 10 pm, because she thinks it's a cool thing to have on a pump.

Thursday
Mommy decides early in the morning that I need a haircut, and everyone tells her to put the scissors down. Even Ida calls from the hospital! So I play, and puke throughout the day, and because I'm puking so much, when she gets a call at work, Mommy decides it was because of trying to fit feedings in around therapy yesterday. Or maybe The Barley Day. But everyone forgot that we were going to do only liquids on therapy days, because they digest faster and can fit in between therapy sessions. So she says only Pedialyte all day, to let my stomach rest a little bit, and let me get lots of fluids in, so maybe I can poop again.

And I get Lactulose, which I personally hate, because it makes my tummy cramp. But I sure do poop! No one even talks about cloth diapers, wipes, anything! They even pull out the disposable pads Becca gave me the other day! I puke a lot, too. Mommy's at work and everyone at home thinks I can't get pedialyte or anything if I puke, so I don't get much today, because ... I keep puking. But I do get a haircut. I even gag and try to puke there. Mommy comes home from work and goes straight to bed, because she's been sick all day. I moan a lot at night and Daddy stays by my crib most of the night, rubbing my head and playing with my (little bit of remaining) hair and aiming my fan at me to help me calm down. Mommy's worried I might be sick, too, but she goes back to sleep.

Friday
Mommy gets up kind of late, because she thought she was going to stay home from work, she was so sick all night. She hits the "volume" button on the feeding pump, and reads something like 517. What? in a day and a half, she realizes, that except for one milk bottle early yesterday morning, I got only Pedialyte, by pump ... but I puked so much that everyone was holding my feedings most of the time. She realizes that I better get some fluids, and fast! She decides she LOVES a feeding pump, because she'd never know that the real reason for all my puking wasn't about pooping, prunes, barley, other solid foods, or anything. Just like how I never gagged or puked all those days in the hospital with IV's going, now Mommy and Daddy think it's how much I drink! Mommy and Daddy both feel silly, but seriously. Most babies just get fed when they cry, "in case" it's why they are crying. If they aren't hungry, they won't eat. No one does that with me, because I eat with my tube! So Mommy gives me a bunch of Pedialyte really fast, and I have my tongue out to say, "Thirsty!" so I get to guzzle a bunch with my squirt bottle, too,

and the rest of the day it's drink, drink, drink, mostly in my tube. Pedialyte, then milk. Pedialyte, then milk. All day. I only spit up a tiny bit one time, and I'm feeling a lot better!

Saturday.
No puking all night, so I wake up, get some milk, get a bath, get rolled around, rolled around, rolled around, get dried off, dressed up, eyes covered up (my eyes are really sensitive to the son, just like Annabel's and Vera's), and jump in the van, get buckled in my car seat, and puke. And puke. Mommy knows better than this, that reflux puking and babies and after-feeding baths and rolling don't mix, but she forgets sometimes, so I had to remind her. I'm fine, so they bring me back inside.

Kidding!!!! We go out driving around, and while I'm sitting in wet puke, happy as can be, Mommy and Jacob look for wild violets to dig up from the ditches in the neighborhood and Daddy watches me. They never find any of the violets that the girls found JUST 4 DAYS AGO. Mommy says they have a really short season, so the ones she got in the vases from my sisters are all she gets. They find vetch and other beautiful wildflowers, instead, and Jacob finds a sweet ladybug, and brings her with him. I barf again, so back home and in the house we go, carseat and all, because now my seat cover needs to be washed. Jacob loses his ladybug between the van and the house, so he's upset, but I'm cool. I love my baths, and I get another one. And Jacob keeps kissing me to try to make me smile for the camera.

I got a package today, with 3 new flannel fitted diapers, and boy, are they loose! I got to wear them with my beautiful diaper liners.

And Hannah decided the other day that she doesn't like a shirt, and put it in a bin she likes to call Yard Sale. Making Mommy laugh. So today, I went to Yard Sale, and got myself a new dress that looks just like Hannah's shirt. :) She has no idea how good this looks on me, because she and Carley are dancin' up a storm at convention. And probably taking home all sorts of awards with their team!

Mommy wants to know if anyone can figure out what most of the "journalling" everyone does about me all week is mostly about. a) ladybugs b) solid foods that I seem to do OK "eating" through my tube c) cloth diapers and wipes d) puke and poop

If you guess the right answer, she says you can come over and help take care of me. Someone will teach you how to feed me. It's easy; all my brothers and sisters know how. You just gotta remember that puking (which we are SO gonna rename) is not a reason to stop feeding me. And no day is ever a Barley Day.

And you gotta like chicks.

Annabel not feeling well

2009-02-21T23:09:00.003-06:00

Cathy is in the local ER getting Annabel checked because, as seems typical for ALL children, it's the weekend, and she's seeming a little sicker with her cold. This evening, the wait until Monday morning (when she could bring her to the peditrician's office) started sounding a lot further away than she was comfortable with.

Please pray that it's a quick visit and that they don't have to stay there long. Cathy hasn't gotten nearly enough sleep the past several nights.

Also please pray for: easy and painless labwork, patient nurses and doctor who are good at listening to everything Cathy needs to share, and again ... not a long stay. Unless an admission means Chona can flutter in and silently take care of everything Annabel needs, and Cathy can actually get a night of sleep! (Don't go telling her I'm praying for an admission ... I'm not!) But we both talked about sweet Chona this evening, and how she silently sneaked in and managed to do diaper changes, labwork, everything ... without me OR Mallorie waking up. So if Annabel can't go straight home, I pray for her to have Chona, or a Chona-clone!

Consider it all joy (James 1)

2009-02-17T17:43:00.005-06:00

1 James, a bond-servant of God and of the Lord Jesus Christ,
To the twelve tribes who are dispersed abroad: Greetings.
2 Consider it all joy, my brethren, when you encounter various trials, 3 knowing that the testing of your faith produces endurance. 4 And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. (James 1:1-4 NASV)

Even if you are reading me these verses in another Bible translation, I can only actually hear this verse in New American Standard Version, which was the Bible my youth group leader, Steve Wibberley, bought for me, and James 1 was one of the dozen or so chapters he wrote in the front cover, for me to have as guidance for my life. I wish I could talk to him these days, and to his sister, Marcia, who he suggested to "disciple" me (serve as a mentor) during those particularly difficult teen years, and who challenged me to memorize several of those scripture passages with her. I'd tell them that their work was not wasted on me. That their time invested in me protected me from quite a bit of danger, and that to this day, those verses come back to my mind, years later. And they still apply to my life today.

So I'm deciding today to consider it all joy, because we certainly are having "various" things going on. I realize I am not anywhere near perfect and complete, and definitely, I am not lacking in nothing. So I give in.

And here's the next verse: 5 But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.

So I'm asking. And I'm going back to recement this chapter in my memory, so it can speak to my current circumstances. If any of you haven't memorized much, this is a good one to start with. If you want, I have a list!! :) Thank you Steve, Marcia.

(I was reminded of this chapter when I saw a snippet of McMama's post, which contained "counting it all joy." What a blessing I was given, to have been exposed to God's word, so that it can come back at the right moments, like this.)

Small installment

2009-02-10T10:38:00.008-06:00

So Ida DOES do scalp IV's. Hah!

Here's the proof. I know, this is probably gory to all of you out there, but to me, all I see is a beautiful IV. I guess, to really appreciate something like this, you gotta have in your history a "fellow" (advanced training doctor in the NICU) telling you he plans to put a tube in your baby's throat, and We have to have an IV, but we don't know if we can get one. And if we don't get an IV, we're up S---'s Creek. So I don't know exactly where S---'s Creek is, but I will tell you this. If you need to tell a parent that you are a little concerned, or even very concerned, about a situation. I think there are less poetic phrases that might be used, and that would still get across your level of concern. So as a result, I tend to get all hero-worshippy when someone is willing to try for a scalp IV, because it's one of her best IV access choices. And lots of nurses don't like to even try there.

Ida's not so big on pictures.
Dr. B doesn't mind so much, herself. :)

Lori, either.

Not-Me Monday! Feb 9, 2009

2009-02-09T22:13:00.000-06:00

OK, ready again for a conscience-clearing Monday confession session, because I'm tired of shouldering guilt or embarrassment about this crazy stuff. Not Me! Monday! was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After losing yet another weekend to a lovely hospital stay, I did not sleep as much of today away as I could (like 4 hrs?). Because Mallorie just got discharged yesterday, and our house is in need of months of nonstop cleaning days. Instead, I sat down and wrote out a neat little to-do list and started attacking the items on the list. You believe that, right? So read on....

It wasn't I who dreamed all night of cancelling the appointment with the Early Childhood dietician today, because I just couldn't stand to delve into the topic of feeding issues one more time.

I'm also not the one who was somewhat disappointed when Lewis did come, and weighed her, and I saw her weight was the same as it has been, despite all the recent vomiting adventures. Because I surely didn't think it was a minor accidental bonus that her weight seemed to be down a lb in the hospital on Saturday. I surely don't want her losing weight! (I don't!) And I also wouldn't wonder if she would be more comfortable just a tad bit less fluffy.

About three weeks ago, when the folks at our annoying medical supply company decided in their infinite wisdom, that Mini-One extension feeding tubes are exactly the same as Mic-Key feeding tubes, after we had already learned that the much bulkier Mini-One tubes are heavier and cause bleeding at Mal's g-tube site, AND that our syringes are not compatible with the ports of the Mini's tube, I did not panic. And then when I realized that we had no more Mic-Key tubes to use, I certainly wouldn't have thought of going to Ebay to look for tubes. I've never done Ebay without the assistance (and PayPal account) of friends, because that place scares the poop out of me. So I never actually asked Carley to set up a PayPal account so I could do searches for Mic-Key tubings. Or start bidding without reading all the instructions for buying on Ebay. So when I saw a "lot" of 3 Mic-Key tubings, and enterred my first-ever bid, only to find I'd been outbid, I never, ever typed in $1700 as my maximum bid, when I had meant to type in $17.00. I didn't call and wake Tamara up, .. Oh, I mean I didn't make John call and wake Tamara up so I could freak out all over her, as if she was the one who had encouraged me to be a big girl and open my own PayPal account for Ebay! No, she never did that, and none of those other things happened over here.
So since that happened, I never did have to wait out a long day at work, unable to check on the status of that particular Ebay auction, to see what the final damage was. And Dr. B didn't tell me to "take a breath," when I told her about this while I was still awaiting the "verdict!" Take a breath!?! Up to $1700 plus shipping for 3 feeding tubes???

I also did not take a shower this time, before going into the hospital with Mallorie on Saturday, because for ONCE, it did not feel as emergent as her other ER trips had been! Something would have felt wrong about that... "Emergency" Room visit plus Mommy-gets-to-take-a-shower-first-and-get-clean-clothes-on just feel like they don't go together, except it is SO tiring to always race in there with hair standing on end and vomit all over your clothes, and baby poop.

Goodness, I didn't get nervous about people wondering why I would have poop on my clothes, so I didn't feel the need to go back and add to the previous sentence, baby poop!

And I am not feeling a little guilty, still, for never adding the extra pictures that I've promised in the past, that I'm going to put them here:

The photogenic Dr. H, who gave Mallorie her new g-button while she was hospitalized. THIS one actually taken in 2nd hospitalization in Dec, and the button was placed after Mommy accidentally popped the first one out by kneeling on her dangling tubing while picking her up. Ick! Umm, I mean it wasn't me who did that! Was someone else, altogether.

Girlfriends getting upgrades on their buttons, same day, same wonderful Dr. H.

Aww, there are too many, now that I have started, so more later on. I promise. I think.

Home Again, Home Again, Jiggety-Jog!

2009-02-08T14:11:00.003-06:00

We're all home (well, John's at work). Mallorie's singing on the couch. Oops, never on the couch, right? I meant on the, umm, quilt on the floor.

Hannah's making some kicking salsa to go with her version of John's tacos. I smell sweet oniony smells from the kitchen, and she just showed me a couple of 2-inch serrano peppers, and asked how much I thought should go in the salsa. Uh, none?

I'm going to see if someone will watch Mallorie and make sure she gets fed on time and doesn't fall off the .... quilt-on-the-floor ... so I can maybe even grab a quick nap.

All's well with the world. My world, at least!

Thank you Dr. E. Yeah, I know. Lactulose. Whatever.

And thank you to the wonderful nurses. Gayle, Jolayne, Mary Ann, Lori, Cindy, Vicky. You made it almost feel like home, and made us feel really important, which is a great thing to feel.

Denial

2009-02-08T11:08:00.006-06:00

I was able to live in my own happy place for the first year or so, feeding Mallorie breastmilk (almost exclusively through her tube), and singing, La-la-la-la-la when a doctor would ask about constipation or mention the nasty words, neurogenic and bowel in close proximity. I even remember that lovely Dr. O (the spina bifida doc) tellling me that "sometimes later" kids with SB will develop problems with constipation when they start on solids. Yeah, yeah, yeah. Not hearing you with my fingers in my ears over here.

Mallorie and I have had a great life in my world, where I got to feel all Mother Earth about raising her, and laugh behind the backs of nay-sayers with their grim predictions. We managed to live there more than a year, with only a couple of excursions out, when I tried, with far too much enthusiasm, to feed her whatever to me felt like healthy and natural foods. Like the day I stuffed something like 1/2 cup of steel cut oats and gobs of applesauce into her tube, all at once. I was dragged back into the real world when I tried stuff like that. (And into Dr. B's world!)

In my world, there is no constipation. So there are no medications to treat it. In my world there is no neurogenic bowel. There aren't any commercial tube-feeding formulas, either. I'd prefer there were no disposible diapers, but half the time, in my world, there are. The other half, there are cute, colorful little fitted diapers that are so stylin' and Earth-friendly, frugal, and easy on the bottom.

But breastmilk, though about the most amazing substance in the world, isn't a great iron source after about 6 months, and real people eat a variety of foods. So we work on this goal of rounding out the diet, and somewhere along the line, I get enthusiastic, and forget about balance. And when I do, I don't want to hear about Lactulose, or worse. I want to figure it out on my own, some natural method of fixing the problem. I remember Dr. B asking me once, after I got Mallorie really stopped up, "Why didn't you ask me? That's what I'm here for."

I don't know. Some part of me thinks I know best, or can figure it out on my own, if just given the chance. Without laxatives, or anything that didn't grow naturally somewhere on Earth. There are things I haven't yet fully explored. The "magic" amount of Udo's Oil to keep things going, or a great high-fiber fruit that can be given fresh and won't make her scream like the blueberries did (both times). I even just read McMama's post mentioning the protein content of peanut butter, and that nut butters can be great sources of good oils. And how about that ground flax seed and the bottle of fish oil she has pictured there? There's so much else out there to experiment putting into the ol' tube. But this time, the vicious cycle of not pooping, things (like oatmeal, again) backing up, and not being able to take in feedings ... so there's vomiting, dehydration, electrolyte disturbances ... really got out of hand.

This time I might have learned a really big lesson. I'm walking away with one word. Lactulose. It's a sugar alcohol; that seems "almost" natural, right?

And maybe another word that will make one Dr. B very pleased, if not a little bit smug. Surrender.

Guess where Mallorie decided she wants to spend the day after her birthday?

2009-02-07T19:15:00.006-06:00

Right now, we're back in her home away from home, a local hospital. Mallorie's 4th hospitalization in less than 2 months. Mallorie's been vomiting off and on for maybe a week, and for the past 2 days, more frequently. Last night, I had to drizzle pedialyte into her mouth with a syringe every 1-2 minutes, to stop her from retching. By this morning, she had gone over 12 hrs being unable to keep more than that small amount of pedialyte down, and most of that I was pulling back out through the tube if she was vomiting.

We were both so sleep-deprived, that it took awhile to realize it might not be one of those things you manage at home. Especially when it struck me that all night and this morning, she was yawning really often in conjunction with the gagging. There were of all sorts of crazy things I thought that might be, because my mind goes everywhere if deprived of a little sleep. Shunt malfunctions, drug reactions (How many doses of Zofran cream had she had in the past 24 hrs?), some weird metabolic imbalance from the enemas/vomiting/removing stuff through her g-tube, etc? I did google yawning as sign of shunt malfunction (nothing about that, thank God), and then decided we'd better get her checked. After calling pediatric group's on-call nurse to see if there was anywhere OTHER than the hospital to get bloodwork, to check for dehydration on a weekend (no), off to the ER we went. And in not too many hours, after labwork came back showing she was a little dehydrated, she was admitted back to the pediatric unit.

This is in keeping with how Mallorie spends her birthdays. Just hours after she was born with a meningocele* that ruptured in delivery, she was flown to a children's hospital and stayed there just days shy of 2 months.

Last year, on her birthday, we drove to the same hospital for her 2nd cleft surgery, and she had complications and spent almost a month there.

Two yrs ago it was 2 months. A year ago it was one month. I'm saying ZERO months this birthday. How's that sound?? And maybe on next year's birthday, we won't even go to a hospital for a look-see, but will go to Jessica's new house, for a visit, instead!

Maybe I won't admit this part, and will save it for a Not-Me Monday post. This time it might have had something to do with me getting all crazy over trying to stop the residual diarrhea (from all the antibiotics she had been taking) with my old standby, oatmeal. Like barley, it's one of the grains that's really high in soluble fiber. You'd think I'd remember that she doesn't do great with lots of oatmeal. Or barley!

No, I'll wait till Monday.

*(The meningocele was the sac bulging from her spine that never fully closed while she was forming.)

"Here for the long haul," 2 years later!

2009-02-06T10:09:00.006-06:00

I see Cathy beat me to it, and I gotta run to work, but this is why I am going in late today. We ate a birthday breakfast, made Mallorie gag by suggesting she take some applesauce by mouth, and enjoyed our morning with our sweet baby, our family, and our friend, Tracy.

I know you won't believe me if I say "more later," because I have yet to put up pics of the hospital stuff I promised. I guess we'll see.

Hmmm. Jacob needs a haircut. The way we typically find out he needs his nails clipped is when we realize he's with us en route to Dr. B's office (she has issues with unkempt nails). So I guess this can be how I end up realizing he needs a cut!

Happy Birthday to Me...

2009-02-05T22:13:00.002-06:00

Ok, this is Cathy, Annabel's mommy. Connie is very busy and trying to get caught up from Mallorie being in the hospital so long. I am taking a big risk that she will be upset with me for sneaking on her blog. But I wanted all Mallorie's friend to know that tomorrow is a HUGE day for this special angel. Guess who is turning 2, yes Mallorie Rose...so here goes...
Happy Birthday to you,
Happy Birthday to you,
Happy Birthday to Mallorie,
Happy Birthday to you!!!!!!!!!!!
P.S. I hope your volume was way down, ha!

What Happens When You're a Cute, Good Girl Who Breathes on Her Own

2009-01-21T12:48:00.002-06:00

Mallorie is healthy and squeeling about having her IV out and her arm back. We've been cut loose, and I'll go to work when John gets here. Mal is waiting on a surprise they have today for good children. Someone comes to visit you (besides Santa).

Pictures this evening, when I get home from work.

Meantime, a snack
for a good girl and her bunny.

What happened.

2009-01-21T10:00:00.000-06:00

I wrote this a couple of days ago, and just kept it in drafts.

OK, if you actually read this blog, you might want to know what happened. And wonder why I'm writing about chairs and IV's, but not about what got us here. I woke up wondering that myself, this morning. I just couldn't "go there," again.

And I still can't. But I will just say that I think what happened to Mallorie on Saturday (a week ago) was probably a laryngospasm. Probably nothing to do with whatever "else" she might have.

Years and years ago, I worked for an awesome oral surgeon, who made me laugh continuously, and filled me with information. Several times we discussed laryngospasms, and what to do if someone had one while he was performing surgery on them. He told me that almost anything getting into the larynx - even saliva, blood, anything - can trigger a spasm in the larynx which can completely block the airway. It's thought to be a self-protective mechanism on the part of the body, to prevent something from entering the lungs. You can read about it here or here. The laryngospasms he was talking about were anesthesia-related, but the mechanism would be the same. Once it happens, he told me, there's not a lot to do except try to get air in; I believe he told me that high-flow oxygen bagged into the airway can sometimes break the spasm. Otherwise, he said we'd use a paralytic drug to break the spasm, and he stressed the absolute need to continue breathing for the patient if we gave such a med. I only saw it happen only once, and bagging with 100% oxygen broke it almost instantly. A very dramatic day, and an easy lesson to remember.

Mallorie had finished a feeding, and for about a half-hour had been sitting on my lap in bed, playing and smiling, when she suddenly began vomiting. Gagging/vomiting is something we're really used to, but it hasn't been much of a problem for a few months. In fact, while she was hospitalized in early December, we went ahead an did another trial of Prevacid (vs Zantac), and were pleased to noticed that Mallorie stopped even the occasional gagging.

The girls had just left to drop their dad off at work, but the boys were with me. Matthew was right in the bedroom, and when we realized it was going to be a "big" vomit, went to get the suction machine, while I put Mallorie on my shoulder to help her clear her airway. By the time we got the suction machine going, I realized that she wasn't breathing at all, and was blue. When I suctioned her a bit, and it became apparent she wasn't taking even a breath, I began mouth-to-mouth. I realized right away that no matter how I positioned her head, no air at all was going in. I've had to do mouth-to-mouth on her before .... almost 2 yrs ago, when she was first home from the NICU and we hadn't yet realized that her caffeine level was low. I knew how to do it, and except for the emotions that such an activity bring up, it's fairly easy to do. I repositioned her several times, and kept trying, but nothing, and she was completely limp. And deep blue. And staring blankly.

It crossed my mind that I had lost her, and that there was nothing else I could do, if I couldn't breathe for her. I had some crazy thoughts running through my head at the time. I was praying loud, and Matthew called 911. My 11 yr old son is a rock.

Eventually, Matthew found the ambu bag, and I started using that, with the same result: no air going in. I decided not to take the time to check for circulation, but just reasoned that if her oxygen level was low enough to make her blue, and no more air was getting in, then her heartrate was going to be dropping, too. A's and B's, as they said in the NICU. Apnea and bradycardia. So I did some random compressions, but mostly fixated on the task of bagging her, hoping something would get into her lungs. I carried her to the front of the house, in search of oxygen. We use oxygen all the time with her, and have oxygen tanks and a concentrator. In the stress of the moment, I couldn't find anything, ambu bag, oxygen tank, tubing, anything. I just put her on her sister's bed and continued mouth to mouth.

Matthew had already called 911, and I assume was still on the phone with them as he got me the ambu bag. He was a rock. Not the first time I've thought that when the rare emergency occurs, it's too hard to be alone. I was so grateful for just his presence, as well as his level head. I'm sure my communications with him were cries, begging him to find the ambu bag and oxygen, and a constant string of prayers to God. He'd tell me things the person on the phone was saying, like to turn her on her side because of the vomiting, and I think I told him she was crazy, that I needed to bag her and do compressions. She's not BREATHING! He just repeated to her whatever he thought she needed to hear, and listened to her. And he got me an oxygen tank, and tubing. Which I couldn't even figure out how to connect to the ambu bag, so he held the tubing near her face.

Before the emergency responders arrived, I had noticed a couple of times when Mallorie exhaled against the air I was trying to squeeze in, telling me something must have gotten in. And once she even took what looked like a spontaneous breath in, but nothing after that, so I continued bagging her, and doing random compressions. Forget the 1:15 or whatever the heck the current ratio is for CPR (Yeah, I have already forgotten it, 'cause I think it's 1:5 or something else.)... I just bagged till I thought I ought to get a couple compressions in, worried not at all about the "proper" placement of my hand or fingers or whatever else I was using for compressions, and then got back to breathing for her.

How long did this all take? I have no idea. I never was conscious of a moment when Mallorie stopped being blue, or limp. But I suppose she did, because I don't have a memory of her looking terribly blue when the EMT's got there. But I am not sure.

Fast forward ... trying to convince the the EMT to take the ambu bag with him and to keep bagging her as he carried her out of the house. Feeling so helpless to convince him even to pretend to hear me. Then convincing the fireman to follow him with the ambu bag, since the EMT said he had whatever he needed in "the rig," and carried her outside without breathing for her. Begging the fireman to make the EMT keep breathing for her as he did whatever else he was going to do for her. Because she's not breathing on her own. (Why didn't he seem to think that was as important as I did?)

Looking for pants to put on, as I wasn't fully dressed. Asking my daughter to ride to the ER in the ambulance, and I'd follow with the other kids, thinking I needed to shower. Trying to figure out if I really should shower and change; I had vomit and poop all over the front of my shirt. Deciding not to take the time. Trying to decide what to pack. Meds? Her pulse ox, which had been left behind? A blanket? Diapers? Ultimately, walking out of the house empty-handed, except for an unstocked diaper bag, covered in vomit and poop, and without my purse. Hair wild. And able to ride in the ambulance.

OK, so that's the part I felt I couldn't share. The actual experience probably was 5 or 10 minutes until the EMS arrived, and maybe 15-20 minutes before they had her intubated, with an IV, and headed to the ER.

It felt like hours. And I must have aged a dozen years.

My hero.