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?

15 comments:

Ruthann said...

Oh,wonderful! Wonderful! This is so exciting!! Micah, keep up your confidence; keep it going! You can do it!!!

Jennie, I have never heard your full story, and I'm sure there's more to it than even this. Memories... sometimes they are wonderful; sometimes they make us cry. You've come a long way with Micah. I feel your pain (at least a portion of it). Best wishes; he's showing progress. That's the first step!

RK said...

Yep. We live next door in your world. :o) My 3 1/2 year old is just now starting to accept sips from a nosey cup for liquids and still is on pureed foods. No chewing. No sucking through a straw. G-tube baby. I know exactly the feeling of seeing that cracker in his mouth and not flung across the room. I celebrate with you!!!

But in all honesty, I don't mind. It doesn't bother me at all that she'll be well past 4 and beyond before the g-tube goes away. If it never does, I am ok with that too. But I didn't used to be.

I stressed to the point of insanity and then just gave up the fight early on. That's not to say that we didn't work on it, but we did finally embrace the g-tube and accept that she was getting nutrition and she was happy. That's all that mattered. She hated working on oral things and refused to the point that we dropped all feeding therapy for almost a year. Then she just decided one day, exactly the day her sister was born (though they hadn't met yet) that she would try to take some pudding. That was 16 months ago. She now will eat pretty much anything pureed/mashed thinly, but liquids are still out. We're working with a new therapist and Braska just now seems to be really ready to take off. She wasn't ready before, so there was no point in forcing it and stressing myself out over it. We'll see...

Some day she will eat french fries from McDonald's, and we'll celebrate. Until then, we'll encourage her and teach her and just relax knowing she's more well balanced in her nutrition than most every other toddler out there... not a bad thing! :o)

Ami said...

((())) This is such exciting news! You're right; I don't fully understand the feelings you've had when it comes to Micah's oral aversion, etc. But, I've followed from the beginning, and seen your frustration, and appreciate the excitement from Micah even requesting a cracker. Continued prayer for you and your beautiful family!

Ami said...

((())) This is such exciting news! You're right; I don't fully understand the feelings you've had when it comes to Micah's oral aversion, etc. But, I've followed from the beginning, and seen your frustration, and appreciate the excitement from Micah even requesting a cracker. Continued prayer for you and your beautiful family!

James 1:27 Family said...

Yay Micah! You are doing so great, buddy! Keep up the great work!

Jennie - Your honesty (and it's "honesty" not "complaining") will bless others. Don't ever feel like you can't say what you feel on YOUR blog. Others will learn from you and be encouraged. I know that I learn from you and I am very encouraged.

We get A LOT of advice like "Why don't you just give him a sucker while he gets his haircut?" It's irritating, isn't it? As if you haven't already racked your brain to think of every possible trick. As if the 20 specialists you have encountered haven't thought about the lollipop. :) But I'm learning to let those comments wash off and to show grace. It's not easy... one day at a time.

Much love to the Dickens!
Amy

Jennie said...

RK, I so admire you and your ability to "let it go." I know this is more MY issue than Micah's issue at this point. He couldn't care less that he's not eating. I think part of it for me is that I spent a bunch of time, before Micah was even born, researching the importance of eating at a young age as it relates to speech. And I very much want Micah to have intelligible speech. So it's not just the eating (though I also wish we could hire the teenagers on our block to babysit more than just a few hours in between Micah's feedings). I would really like to not NEED feeding therapy for him.

Kris said...

Yea yea yea Micah! We celebrate with you Jennie! What a major milestone. Just out of curiosity, will Micah put anything else in his mouth, non-food items, such as a toy? I suspect not, but thought I'd ask.

I saw Rk's comment and thought I would add that sweet little Braska talks up a storm! Holy cow, that girl has the best articulation, and a large vocabulary. I'm sure she can give you a lot of hope for speech issues.

Big hugs to you, Jennie, as you continue on the journey. (Erin took no food orally for a month or two before OHS, and it WAS the most difficult time for us). We continue to pray for Micah.

Kris

april narretto said...

Yes, it is a long road. While I have never traveled this path of eating issues(I have a piggy, lol) My dear friends has a son with major eating issues. At five he eats yogurt and applesauce both which are huge for him. I have seen her stressing time and time again over eating issues so... GO CRACKER!! WOOHOO yeah Micah

Michele said...

Oh Jennie... signing and licking a cracker (and WANTING to) are fantastic!! Go Micah!

I have to say though that you saying "I've never been successful in that with Micah." with regards to feeding him made me so sad. Please, please, please... no guilt! You are nourishing him like no one else could. I loved the comment from RK about having balanced nutrition -- so true. So, you DO feed him!! Not only do you feed his body well, but you also feed his soul by loving him and you feed his mind by teaching him! Please give yourself more credit -- you are doing great things!!

Jonathan said...

Jennie, this is huge! What a great thing that it was his own idea. One of the things that Jonathan prays for (and so do we) is that Micah will learn how to eat, and we know (or at least know in part) what a big, God-sized prayer request that is. I'm thrilled that he wanted a cracker. Thanks for taking the time and emotional energy to post all of this so that we all understand better.

Amy

Baby Gabe said...

Good post. Very well said. Right now, both Grandma's know how to feed Gabe and that's about it. We do have 50 hours of respite nursing every 6 months with a waiver program and that has helped a little.

Monica said...

Thank you for sharing that, Jennie. I'm sure it isn't easy to write and you're right... I don't know what it's like. But I do care! And I'm so thrilled that Micah made an attempt to sign and taste a cracker. That is huge. And maybe it's a start... I love that he sat there long enough to get a photo :-) He's just too cute and I'm sorry you have had such a long journey with the medical issues. Yay for Micah. He is in our prayers!

alexandrea said...

Oh I so completely unserstand the feeding issue, My lil one does not have down but she too pretty much had tpn for almost 20 days but due to nec, Since we have been home it has been a constant battle, We have our good and bad day, some says were she will eat great, and other where she flat out refuses any solid.

So yeah for the cracker!!

RK said...

Jennie--Just a little follow up. I don't want to make it sound like you're doing anything wrong! It's great to care about your child, of course, and clearly you want the best for him, which includes feeding himself and eating a variety of foods. I'm with you, and the "letting go" was not easy, and there are some days when I don't do well at all with the whole thing. BUT--I found that the relief of my stress transferred to her way more than I'd expected...so to NOT have people messing with her and trying to feed her and such all the time turned out to be the ticket for her. (Granted...we're still dealing with thick purees...we have a long way to go!) Just taking that bit of work off the table for her for a while was huge. But every child is different...even two with so much in common like Micah and Braska. :o) I would never presume to think I have the answer to Micah's aversions, but I can just share how our experience went.

And yes, speech is big in our house. From the day she was born, I was very open about how this was my big focus. I want her to speak well and have a full vocabulary. And it's been a priority from the beginning. But again, much of it is just her own wiring. It's a strength she was apparently born with. She is self-motivated with it, and her articulation is surprising, but the incessant work we do on it is kind of crazy. (Thanks for the note Kris--so nice!) Thankfully she enjoys it, so we can work on speech hours a day and she never gets tired.

Micah is a phenomenal little boy, and he will continue to impress all of us! Don't pressure yourself too much to "fix him" when it comes to feeding...as we've been told a million times... he WILL get it. And in the meantime, he's getting the nutrition he needs. Celebrate that he's alive and home with you to enjoy, and let God heal your heart from the rest of the "disappointments" when it comes to the feeding struggle. :o)

Big hugs, my friend!
(Sorry for another super long comment!)

Sunshine Eyes said...

I celebrate with you the cracker!! I can't even comprehend all that you've been through, but your love and determination to provide the very best for Micah are inspiring! Go little man, eat little man! :)