Tuesday, January 11, 2011

Failure (to Thrive)

Two weeks ago we brought Caleb to the doctor's office because he was dehydrated. We were hoping that the doctor could pull some strings and get us in to see the GI specialist sooner, but it turns out that the GI specialist is in such high demand that there's nothing anyone can do. So, the doctor wanted us to come in for a weight check two weeks later. He said that if Caleb didn't gain four ounces in two weeks (not too much to ask), he'd pull some strings with another GI specialist who isn't in so much demand.

I brought Caleb in today expecting that he would weigh 16 lbs 6 ounces (two weeks ago he weighed 16 lbs exactly). I mean, he had some really good eating days in the past two weeks! He even ate more than 20 ounces of milk for a few of those days. One day he scarfed down a ton of solids. But he also broke his record for least amount of milk ever consumed in a day. He had eight ounces. He should eat that in one sitting. Another day he only had nine ounces.

Well, today he weighed 16 lbs 2 ounces. That's a gain of one ounce per week. And I thought he did well!

So, he was diagnosed with Failure to Thrive.

The doctor doesn't think that waiting one more month to see the really, really good GI specialist (I'm talkin' miracle worker, here) will hurt. In the meantime, I'm supposed to keep a detailed food diary: everything he eats, how much he eats, what he refuses, etc. We're also resuming therapy with the feeding specialist. And we are supposed to try giving him pediasure, white bread with melted cheese, malt-o-meal, and lots of butter on everything.

And I'm supposed to "keep doing what I'm doing, because I'm doing a good job."

Let me tell you, this is the most stressful part of having a preemie for me. It was terrible to hear his brain bleed diagnosis--bilateral grade II, almost grade III. That's scary! And having to anticipate heart surgery for your less than three-pound baby? Yeah, that stunk! But there was nothing I could do about it, so there was no point in worrying. With feeding, there is a lot that I can do. I do everything I can and sometimes I get really creative! For instance, if I brush a wet washcloth across his feet while he's in the high chair, I can sneak a bite of food in his mouth. And every bite helps, especially if it's got melted butter in it! This morning he held three different medicine bottles in his hands to look at, shake, and study to keep his mind off of the bottle that I had shoved in his mouth. And he ate six ounces! But tomorrow I will have to find something else, because after a while he got bored with the medicine bottles.

But when I do everything I can, and it still isn't enough? I feel like a failure. If Caleb doesn't get the nutrients he needs for proper brain growth and development, this could be serious. And right now, it's all on my shoulders. That's a lot of weight! Having this new diagnosis makes me feel like I've failed in my duty to keep my child healthy. "Failure to Mother." I know it's not true, but that's how it feels.

And I really don't see an end in sight. At the specialist, they'll do blood work. They might do another swallow study. They'll probably do a scope to make sure he doesn't have ulcers or deformations in his bowels. I wonder if they'll do allergy tests? They could test the pH in his throat to see how bad his reflux is. Hopefully they won't hospitalize him for any of these procedures, or for dehydration. They might try giving him fluids through an NG tube (like he had when he first came home from the hospital). They might try appetite stimulants. Hopefully they'll find something. And if they don't, I hope they give him a g-tube. He needs more nutrients to thrive, and thriving is most important right now.

In the meantime, I'll be ok. Caleb will be ok. He'll just be skinny, and I'll just be stressed. But we'll still be happy, because that kid has got the best laugh and the best smile. He's still doing so many amazing things, and that will never end. But his feeding problems? They'll end some day. Because All Bad Things Must End.


Nana said...

You're a good mommy Anna. You are so creative and loving and patient. Bad things will end and Caleb will grow.

Patrick, Adrienne, & Bella said...

i wish you the best and will be keeping you in my prayers and thoughts. sometimes i wonder why we are tried the way we are. but i definitely also try to stay positive, like you are doing, and look at the bigger picture. and pray a LOT :)

Katie B said...

oh anna, I just want to give you a big hug. You're a brilliant mother! You do so much. But for some reason, Caleb just doesn't want to eat. I get so frustrated with just one rough feeding, I can't imagine how challenging it is for you. But you guys will figure out how to meet his needs and in the mean time, happy Caleb will remain happy Caleb!

Niki said...

I can't believe you have to follow him around all day looking for a way to sneak food in! Is it any wonder Caleb came into your family? There are a lot of people that wouldn't do that. I'm sure they'll get to the bottom of it, even if you have to do some scary things. Millie wouldn't digest milk without bleeding at first (totally different, I know) and having to hear about it twice a day every day from her doctors drove me crazy. In a very small way, I know a little of what you are going through. I welcome all the complaints you want to dish out!

Ellie said...

Oh Anna, this one made me sad. Seriously, could they think of a more heart-wrenching label for a mom to hear about her baby than "failure to thrive"? Which in Caleb's case, just really isn't true; he is thriving in so many other ways! Hang in there!

Megan said...

I often feel similar when I think of Dayton's delays. We have such great kids but yet even the smallest things can bring that horrible question, "Am I a good mother?"
You are amazing though. You mentioned things you do I never would have thought of. Keep it up and things will work out...somehow. Your still in our prayers!

A Close Family said...

I'm starting to know more and more how you feel. Emma isn't quite at the stage that Caleb is at right now, but still I've had multiple people tell me lately that "I'm not doing enough" (not in those words, but pretty much). And I just had someone comment on one of my posts saying that Emma could be in the "failure to thrive" category. I do everything I can (at least I think)....maybe I'm not? She won't stay in her high chair long enough to eat TONS but I give her high calorie foods- she's just a picky eater! But your most recent post helped a lot. Thank you! I just hate when people say things that make you feel like a bad parent....let's hang in there...and in the mean time, I'll stay in touch :). I want any advice I can get!