August 1, 2012

Feeding Woes (and Ohs!)

Feeding has been an issue for Samuel...oh, since forever. We were never able to breastfeed and bottles were tough at the beginning. After getting his heart repaired, he gradually became strong enough to do quicker feedings with a lot more ending up in his mouth than on his bib. We were excited! Our first goal checked off on our IFSP. Go Sam!

It didn't take long for that excitement to die down and that (major) accomplishment to lose it's luster. His ability to suck down a bottle in under 10 minutes was not so impressive once we realized his great dislike for solid foods. Under the guidance of our speech therapist, we started introducing solids at about 5 months. No matter what you placed in his mouth, from cereal to apples to prunes, he made a horrible face and pushed it all right back out. Or he would tolerate it being in his mouth by storing it in his cheeks and letting it gradually drip out the corners of his mouth once he had liquefied whatever was in there.

After 6 months of getting no where, our speech therapist suggested we might want to bring in someone else because she had tried everything she knew to try. While I appreciated her honesty and humility, it was still kind of a gut punch to have someone give up on Sam. It made an already frustrating experience just that much more discouraging. 

It took a few weeks to find a new therapist who specialized in feeding and had an opening we could fit into our schedule. So, it was July 3rd before we had our first appointment with her. After introducing ourselves and laying out all the various spoons and equipment and food, I sat down to feed Sam. I put a little bit of applesauce on a spoon and asked him to open his mouth. And he did. And he took the food off the spoon, pushed it to the back of his mouth and swallowed. Then he smiled at the new therapist and leaned forward with his mouth open for a new bite.

I just about fell on the floor.

I kept saying over and over, "I promise he never does this. He's NEVER done this. I swear I'm not making it all up!"

Apparently, he just prefers tall, blonde speech therapists. Whatever, dude, we'll take it!

Since that day, he's had so many more good days than bad days when it comes to eating solid foods. It's seriously like a switch has been flipped and he now enjoys and knows what to do with the food we give him. He's even working on self-feeding with Mum-Mums and puffs. Wahoo!! Go Sam!

But (of course, there is a but...) during his next appointment with the therapist, he ate more pureed pears in one seating than ever before. By the end of his feeding, we noticed that he sounded a little congested and "wet" when he was breathing. This is a pretty big indicator of aspiration, so the therapist suggested we get it checked out. We knew to be watching for aspiration and our first therapist had been pretty diligent about giving me all the signs and symptoms of it. We even made sure to ask the doctors about it during our Pneumonia/Metapneumovirus hospital stay back in March. They assured us that the pneumonia was in the wrong place to be considered aspiration pneumonia, so we left it at that. However, hearing the congestion that had been absent for so long show up during a feeding was pretty suspicious and needed to be checked out. We had our pediatrician set us up for a swallow study this week.

Now, if you don't know what a swallow study is (see also: Me 2 weeks ago), they basically give you barium mixed in with various consistencies of liquids and solids that they when watch you swallow during a continuous x-ray. Samuel was given it in three different consistencies of liquids and one puree mixed to about stage 2 or 3. We were most worried about the puree, obviously, but he passed that portion of the test just fine. The surprising results were that he was very easily and silently aspirating the liquids in the thin (the same as formula mixed normally) and in the nectar consistencies. He was only able to swallow liquids mixed to a honey consistency without aspirating.

That's right. Honey. As in, go open your pantry and turn over a bottle of honey. See how thick that is? That thick. Anything less and he's getting it into his lungs.


So, yeah. That was an eye-opener. My already overloaded brain has now had to add a section for learning about thickeners and how best to thicken liquid without adding a ton of empty calories. And of course, this stuff costs almost as much as formula, which we all know is made by tiny elves in the Alps and can only be bought with bricks of gold.

Surprisingly, this new challenge hasn't upset me all that much. Sure, I'm frustrated and feel bad that it's been going on undetected, but this isn't BAD news per say. At least it's an easy fix. There was one point during the swallow study when they weren't sure he was doing okay with the honey and my brain just went into overdrive with the possible ramifications of that diagnosis. We are lucky, though, that we were immediately able to fix this problem with a simple stop at the pharmacy and a little trial and error on the mixing side of things.

We'll redo the study in a few months to see how's he doing. I've been assured that most of the time, children will outgrow this. Here's hoping!


A few weeks ago, Luke thought maybe he wanted a popsicle for dessert, but after two licks, changed his mind. So, Sam and I finished it for him. (Obviously, before I knew about the aspiration...)

1 comment:

  1. My word! How is it that he was aspirating the thin stuff but didn't sound congested until he ate the pureed pears?! So glad that this was done now! Maybe it will be the step you need to get him moving onto more foods. Had a swallow study never been done before? It surprises me that both of his feeding specialists wouldn't have ordered one earlier. But in the grand scheme of things, you're still finding out relatively early. So that is good.