First, videoswallows are really interesting. An X-ray video--go figure! You could actually see the barium get sucked out of the nipple and swallowed down the throat. It was good, I guess, that Brynn was having a good eating day. And lucky for us, she liked the apple-flavored Barium because she sucked better on that than her bottle. Maybe if I start flavoring my breastmilk, she'll actually learn to eat faster!
The results were what I expected--she's not aspirating and all looks good. I only wish I'd remembered my camera so you could all see what a cool process it was!
As for her NICU follow up today, she's officially OFF OXYGEN! I can't tell you how different her cute little nose looks without the cannula jammed up there. To be honest, though, I knew we'd be done with it today. I mean, several times now I've either forgotten to turn her oxygen tank on (she was all hooked up, but no air) or the cannula has fallen out of her nose in the middle of the night. Each time, she was just fine. Today, she showed off to the NICU doctor and we were declared FREE. What a relief.
It's actually kind of weird to pick her up now without gathering up a cord. To think I can actually walk upstairs without unplugging her and replugging her in is liberating to say the least.
For now, we'll keep the tanks on hand (just in case) and hook her up to the monitor at night to alert us if anything goes wrong. I feel pretty confident she'll be fine since for 5 weeks we haven't had one alarm that wasn't false.
Lastly, we also had the GI appointment today. Yesterday she took three full feeds in a row and I thought maybe she wouldn't need to go. But my excitement was not rewarded today when I couldn't get her to take any more than 5 CCs at any given feed. Dang. She's so unpredictable, this is a really tough decision. Just when I think she's close enough to not need a G-tube, she has a couple days where she refuses to eat anything.
Still, we learned from the doctor today that the procedure really isn't that bad. They don't even have to surgically place it. Basically, they just thread a light down into her stomach, light up the area near the skin, poke her with a needle in just the right spot, thread a tube down her throat and out the needle hole, blow up a little balloon on the end of the tube to keep it from coming all the way through the other side, and then that's it. She'll hardly even notice after a day or two. The really weird thing is that like an earring hole, it takes a few weeks for that hole to heal but then it will remain open if used regularly. So the stomach and skin lining seal together, with a hole going through, and you can remove the tube and just attach a button for feeding (called a Mic-Key button). It looks like this:
Unlike an earring hole, though, it'll never completely stay open. If the Mic-Key is removed, the hole will close up in about 3-6 hours. So that's it. As soon as she's taking full feeds on a regular basis, we just remove the button, wait 3-6 hours, and wa-la. She's a normal baby!
Here are some photos of our cute little baby without any stickies on her face. We took these the other day when we were changing her NG. Now as soon as we get a Mic-Key button, she'll look like this all the time! It's funny because when you're with her in real life (not sure the photos show), her cheeks look so much chubbier than when the cannula pulled them in:
Before I end, I just want to say how great it is having Brynn home. She sleeps a lot and is mostly smiles when she's awake. She hardly ever cries--unless I'm trying to get her to eat and she doesn't want to. She really is a good baby--an Angel baby if there is such a thing.
I used to think I could NEVER bear having a child with medical needs and would pray that it didn't happen to me. And although we've certainly had hard days, we've learned that overall its just what other people in our shoes have said--you do what you have to do. It's true. This is our life now and it really doesn't seem that out of the ordinary. My days now, although filled with different things than I might have imagined when I got pregnant, are just normal days. It's funny how what I thought would kill me before has turned out to be my everyday, regular life. And I actually love my life!
Noah's 5th Birthday
2 months ago