life and times of a family with a little man with designer genes
A Little Something Extra
Friday, June 11, 2010
Micah and a cracker
Yesterday afternoon, Micah "requested" a cracker. Matthew was having his snack (a few yummy organic butter crackers). Micah appeared to be interested and I asked him if he wanted one. He actually SIGNED cracker and nodded. I gave him one, thinking it would get thrown across the kitchen floor. But he licked it... multiple times. And he held onto that cracker for about 10 minutes.
This is a HUGE deal but I almost didn't post about it. I think that's because I feel like I haven't done a very good job of explaining Micah's eating issues, so no one outside the feeding tube community and a few select friends and family would understand the significance of the cracker event. And I've tried to avoid complaining about Micah stuff, especially since the septic/toxic shock incident. I feel like I should just be grateful that he's alive and deal with the other stuff quietly.
But it's hard for me to talk about Micah's eating issues without crying. If you haven't been here (aka, you haven't had a child with a complete oral aversion), you can't possibly understand (I don't say that lightly, by the way... I have a lot of empathetic friends and family members who have been incredibly supportive of us in this journey). As a mom, one of your primary jobs is to feed your baby/child. I've never been successful in that with Micah. For those of you who have not been able to nurse your baby and have resorted to bottle-feeding because you HAD to, not because you WANTED to, you have a small glimpse into this world.
I could go back and search my previous posts to give you links for a history of Micah's feeding issues (for those who haven't followed my blog for 2.5 years or who have forgotten how we got here). But it's probably faster for me to do a brief summary here:
Duodenal atresia - The first and second portions of Micah's small intestine were not connected. He had surgery to repair this when he was 2 days old (should have been day 1 but he got bumped). He was fed TPN (IV nutrition) for over 3 weeks and wasn't allowed to eat for the first 20 days of his life.
CHF (congestive heart failure) - Micah had a heart defect called AV Canal (atrioventricular canal). He went into CHF around 4-5 weeks of age as he was learning to eat. He did not have the energy to eat all the food he needed to survive, so he had a g-tube placed when he was 7 weeks old so that we could bring him home.
Between the NICU and his OHS (open heart surgery) at 4 months of age, we let Micah eat as much as he could via a bottle and "tubed" the rest. Most of it was tubed. Often he wouldn't eat anything. That was likely due to part of the summary below (Duodenum not functioning properly).
OHS - Micah had a rough time with his heart surgery. One of the complications turned out to be a paralyzed left vocal fold, which resulted in an inability to protect his airway when he swallowed. He decided at that point that he didn't want to eat anymore because it hurt. This was the start of his oral aversion.
Duodenum not functioning properly - Before Micah was discharged following his OHS, I "encouraged" them to figure out why he still wasn't tolerating his feeds (docs had been pacifying us with "it will get better after his heart is repaired" for two months). Micah was screaming in pain and wretching following each feeding. An upper GI study and endoscopy showed that his duodenum was still dilated and there was a "blind pouch" where food was pooling and kicking back through his pylorus into his stomach. This resulted in him immediately getting a gj-tube. He was then fed into his jejunum (2nd part of the small intestine) while his duodenum continued to heal. He was j-tube fed for over a year. That was terrible. Every time that stupid tube got clogged or coiled, we had to take him to Milwaukee (1.5 hours away) so that Interventional Radiology could re-thread it into his intestines. It was about a month after he was discharged that his new GI doc gave me the reality check phone call. I think he said something to the effect of, "You need to adjust your expectations." Right. Because I was still holding onto the "he will likely have the feeding tube for a few months after OHS as he's gaining strength to take all of his food orally," that we heard in the care conference in the NICU as they were telling us why he needed a feeding tube.
Eventually late last summer, Micah started to allow us to feed him "solids," which was basically stage 2 baby purees. Forget liquids. There was no chance he was letting a cup close to his mouth (after 6 months we were told to give up the thought of him taking a bottle because he wouldn't learn to suck).
Around that time, we were able to move him from continuous feeds to bolus feeds. Basically, when he was getting fed through his j-tube, he only had 5 hours/day that he was NOT connected to his pump. "Bolus" feeds are more like meals.
Though Micah increased the volume of food he would take at one time, there hasn't much additional progress made since we moved in the fall (the move itself played a role in that, I think). He still only eats stage 2 (no textures allowed). But lately he's started becoming interested in drinking from a cup (he won't touch it with his hands, though... you have to do it for him). He opens his mouth for the cup but we still need to teach him how to close his mouth around the cup lip and take in only as much as he can swallow (most of it drools down his chin, but at least he's trying).
Earlier this year we made the move from Neocate (insanely expensive formula... think 4x Nutramigen) to Boost Kid Essentials. So at least we can buy it elsewhere when we travel now. And it tastes good so he'll spend some time attempting to drink a bit from a cup.
So... feeding time is basically 4 times a day, spending at least 30 minutes trying to convince Micah to take another bite of yogurt/baby food, and hooking him up to his pump for 6 ounces of formula (though we don't try to feed him orally during the 3rd feeding of the day).
Micah sees a private speech/feeding therapist 2x/week (co-treat with an OT one of those days). They're both great and are working to eliminate this lovely texture aversion that Micah has. He has actually WILLINGLY put his fingers into paints lately. This is huge progress for him. He also has an SLP (speech and language pathologist) who comes to the house 3x/month to work on speech and a bit of feeding.
It's a long road. And a bumpy one with lots of detours. And it stinks. Really stinks. I have a boy who is almost 2 1/2 and he doesn't really eat anything of significance and doesn't know how to drink. And won't put anything in his mouth willingly... EXCEPT A CRACKER! Not that he ate it. But he didn't hate it. He tasted it (well, at least the salt). And he didn't throw it away. And he didn't want Matthew to take it from him (resulting in a Matthew scream-fest... yes, the child looks innocent enough... but then he opens his mouth...).
We served a meal at the Ronald McDonald House with some friends from MOPS, small church, and Mark's office a couple of weeks ago in honor of Micah's health and in thanks for the many meals we received recently as well as from volunteer groups who provided meals for us during the time we spent at the RMH in Milwaukee during Micah's first year of life. We were very busy serving so we didn't have much time to interact with the families staying at the House. But I did meet a dad outside when I arrived. His daughter was in the NICU and was scheduled to get a g-tube the next morning. He was nervous about the surgery but anxious to have an opportunity to bring his daughter home. I mentioned that I understood how hard that decision was because our son has a g-tube too. And then he asked the question, "How old is he?" Oh, how I hated answering him. I told him that there were a lot of other issues that Micah had faced that resulted in the long 2.5 years. But I know that it hurt the dad to hear of the possibility of a long-term issue. I know that it hurt because I saw his face and I know it hurt because it hurt ME so much to even tell him. A little friend of ours here just got her g-tube removed recently. She's five. Five. Long cry from a couple of months.
In closing, I would like to give some advice to those of you who know a parent who has a child with a major oral aversion (or texture aversion, etc... this is not just for kids with Down syndrome). The next time you hear that parent complain about a pending dentist appointment or haircut, please don't suggest a sucker to pacify the child. There is no bribing a kid who has an oral aversion. And that parent would probably let her kid eat candy at every meal if he would just EAT CANDY. And though it might seem logical to bribe with a sticker instead of a sucker, keep in mind that the oral aversion often comes with a texture aversion, and that sometimes includes sticky things like stickers. Maybe offer to come along as a distraction... someone to hold the iPhone and run a video while the parent puts said child in a head-lock.
Thanks for reading my vent. And a huge thanks to all of you who have supported us in this journey.
P.S. To any feeding tube parents out there... Do you have babysitters (other than family members) who know how to feed your kid?
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.