Wow. 4 months?! Crazy. I'll still be updating Louisa's Caring Bridge site but I thought I'd come back "home" for the more mundane things that are going on with our family. Mundane is good. : )
She is doing well. The big news this month is that she is learning to eat from a bottle again. This is a process and her success varies by the feeding. She's had a few choking episodes which scare her badly (us, too!) but thus far she has been willing to keep at it and try again the next feeding. She is scheduled for another modified upper GI (aka a swallow study) on Feb 5th to check for aspiration. Tim and I are on the fence about this one. I'm going to talk to her feeding therapist to see if she thinks it is really necessary. We should probably just go ahead and do it. I hate it, though.
At our last GI appointment we were told that when we go 3 months without using the g tube at all, she can have it removed. His goal for her is for it to be out at the end of July - so, 6 months. I think that might be optimistic. I'm hoping for her to graduate from the tube by Thanksgiving. Right now L is getting about 75% of her feedings through the tube. We also use it heavily for venting (letting gas out of her tummy since she cannot burp.). As she starts to transition to solid foods I expect we won't have to vent as much. For now I can't imagine not being able to let the air out of my baby.
The biggest hurdle right now is growth. Louisa is little. She's 11-1/2 pounds, give or take, and about 24 inches tall.