Things That Have Happened

Lively got a g-tube. It looks like this:



The tube goes through his abdominal wall and the balloon inflates in his stomach to hold it in place. On the outside, there's a "button" that, at times, doesn't have anything attached to it, so he can wear normal shirts or even overalls again! Because he's being fed into his stomach and not his intestine, we can give him bolus feeds, which means we can run a full bottle pretty quickly straight into his stomach, and he digests it normally from there. When we fed directly into his intestine, we had to do a slow drip, because we were bypassing all the digestion that normally happens in the stomach, and the intestine can't handle a huge amount of food all at once. There's nothing like having a big ol' nasty GJ tube for a few months to make having a g-tube seem like a gift.

Coinciding with the g-tube placement, Lively started to make some developmental strides motor-wise. He sits more steadily. When he starts to fall, he puts his hand down and catches himself. He can almost push himself into a sitting position when he's on his side. He tries to pull up to standing, and takes some weight on his feet.

This, by the way, was taken just after his first haircut. Here's the before picture:

I do love a fat little guy with long hair, and I had been resisting the haircut for weeks, OK, months, but he had wings coming off the sides of his neck, and it was shorter in the back than on the sides. It had to be done.

In perhaps even more exciting news -- Lively is eating a little bit. A part of me doesn't want to talk about it, or write about it, or acknowledge it at all. I don't want to jinx it. And he doesn't eat everyday. But one day, maybe a week ago, I brought him home from occupational therapy and sat him in a chair, and fed him some Happy Baby Grrreat Greens, and he opened up, took a bite, and swallowed. Just like that. And then he did it about 5 more times. The next day, he chose not to repeat the performance. But a few days later, he did it again.

All-in-all, he's probably still taking in no more than a tablespoon of food by mouth each day. But that's a heck-of-a-lot better than nothing. Pete and I started mixing pureed foods with breastmilk and putting it through the g-tube a few weeks before, and I wonder if maybe that helped. Maybe his body remembered what to do with food. I don't know. But no one is really guiding us with this. So I turn to google. Thanks google. He ate a few bites!

Next month Lively will have another swallow study to evaluate what is happening when he tries to swallow (he still chokes and gags fairly frequently) and to see if he still aspirates thin liquids. I think he does. One of his occupational therapists suspects that one main issue for Lively is muscle weakness, and so he's having difficulty coordinating all the muscles that allow him to swallow. I believe she's correct.

And speaking of muscle weakness, the more Lively progresses, the more I see differences in his strength when comparing his right and left. His left arm and hand are quite a lot weaker than his right. I think he doesn't crawl because he can't support his weight on his left arm. But all of the PT we have been doing really seems to make a difference -- he's much stronger today than he was 10 days ago. Much! So maybe soon that left arm will be able to do its job.

Annie? Big sister has been such a sweetie-pie lately. (I'm gonna jinx this for sure. We obstetricians are very superstitious, you know.) My parents and grandmother came to visit a couple weeks ago, and my grandmother brought her a chef's hat and apron for her birthday, because Annie loves to cook with my mom when she visits.

My mom and Annie put her new duds to good use and made cupcakes.

Pete and I are pretty sure she's smarter than we are. I'm just thankful that she's doing OK now. She seems happy, and much more relaxed now that we've been out of the hospital for awhile. And she loves her brother!