Monday, December 27, 2010

My new favorite quote.

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.

Sunday, November 28, 2010

Annabel and Cathy

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."

Thursday, November 25, 2010


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:, 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.

Tuesday, October 19, 2010

Imago Dei

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.  :)

Monday, October 4, 2010

Sad, lost, grateful

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.

Wednesday, September 22, 2010

Online Memorial

And the obituary:

Saturday, September 18, 2010

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.


Sunday, August 29, 2010

3 guesses

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.

Tuesday, May 18, 2010

Feeling Very Undancey...

"Feeling Very Undancey"
by Arthur Rackham:

Mallorie this morning:
Aww... :\

Wednesday, April 21, 2010

Eternally Grateful, and Going HOME!!!

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.

Monday, April 19, 2010

Home soon.

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.

Sunday, April 18, 2010

Still here

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.

Wednesday, April 14, 2010

Why we are here

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.

Tuesday, April 13, 2010

Message from PCU

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

Monday, April 12, 2010

Tube is out!

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.

Saturday, April 10, 2010

More Recovery

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.

Friday, April 9, 2010


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:

Thursday, April 8, 2010

Surgery tomorrow

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. 

Wednesday, April 7, 2010

Peaceful Tuesday Evening

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.

Sunday, April 4, 2010

Saturday, April 3, 2010


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


(yeah, Mal, my sentiments EXACTLY.)

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

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

Car & the rest of us.