Thursday, March 24, 2011

All about eating

Since Sunday, when Timmy's surgery was canceled, it has felt like things are really starting to move along. Tomorrow morning at 6am, he will be up to full feeds--this is a huge milestone! The next step is to work him up to fully fortified feeds. Because he's had so much trouble growing, he needs extra calories and nutrients added to his milk. It's estimated that normal breastmilk has somewhere around 20 calories per ounce. They'd like to work Timmy up to 30 calories per ounce. Right now he's at 22.

Currently Timmy's feeds are continuous. That means a pump pumps his feeds in constantly. Originally they wanted Timmy to be gravity-fed by the time he goes home. But it will take some time to get him there. So they've agreed that we can take him home on a feeding pump and work on consolidating his feeds at home at our own pace. We're quite happy to take him home on a feeding pump! What's one more machine, right?

So right now, if Timmy continues to tolerate his feeds well, it's possible we could be taking him home in a week or two! There is a possibility of another surgery, but we're hoping to avoid it. They've talked about doing a Nissen fundoplication--this involves wrapping the top portion of the stomach around the lower portion of the esophagus. It would prevent reflux. If Timmy has significant reflux, there's risk of damage to his airway repair. But right now he's doing so well we think we can avoid the Nissen! (This is another potential argument for using the feeding pump, since pumping in the feeds more slowly means that his stomach isn't as full, and that usually helps him keep stuff down.)

We've been doing tastes with Timmy again this week. They're not going as well as the last time, but that's okay. Though his therapists tell us he's doing fabulously in comparison with other babies who start learning to eat at a similar age! Two months ago, when he was starting to learn to eat for the first time, he was still young enough that the sucking reflex largely took over. Now he's much older and has to choose to suck. But he doesn't really understand the point--after all, since his tastes are not nutritive and he's not hungry, he doesn't have any great motivation to eat. The other factor is that he's just not used to sitting on someone's lap to eat. When we hold him we're usually playing, reading books, or he's sleeping. So when we hold him to eat, he wants to play. So we let him play with the bottle :) One time this week he took 5ml orally. Usually it's 2 or 3, and once he wouldn't really take anything. But he's showing a little interest, which is great! And if he never takes a bottle, that's no big deal. Thankfully since we have the G-tube, there's no great pressure for him to learn to eat right away, since he's not dependent on his oral skills for his nutrition.

Timmy loves to put things in his mouth, though! Looking through some recent pictures, about fifty percent of them have him mouthing something. We're looking forward to bringing him home, where we can work on all of this at our own pace (and where he won't get woken up every time we put him down for a nap by someone coming in to empty his trash or stock his supplies or mop his floor...oh for the day when he can take uninterrupted naps!).

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