Exceedingly abundantly. (You know who you are.)

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

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

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

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.

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.

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"

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

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

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.

Or whatever it's called.

Please pray for this sweet Bird

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.

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

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

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.

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.

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

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?

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

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

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

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)

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

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

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.