We have officially completed one week on feeding tube time. It is clearly working in putting weight on her. She looks fleshy, has a little more color, and even a little tummy! It definitely adds a whole new element to our lives. Hannah has quickly adjusted. She almost never complains. She only had one day, one morning, actually, where she even mentioned not wanting to do the tube flush and placement check.
She calls the feeding tube her drink and she seems very proud to talk about how much "drink" she is getting. Considering the fact that she has to drag an IV pole just to go to the bathroom, I'd say it is pretty remarkable how she well she has adapted.
They did give us a backpack to use instead of the IV pole for things like going outside or car rides. So far, it has been problematic. It is too heavy for her to wear and makes beeping noises at random. We are still figuring all of this out.
Next week she will go in for a weight check. At that time they will determine if she can go off the 24/7 feed and just go to night feeding.
I'm sure I am missing some great stories from the week but, since they are not coming to mind right now, I might add some posts later! I hope everyone has a great weekend!