Gabrielle is doing really well. She is still refluxing and puking, but she has been happy and getting stronger. She now actually pushes up with her feet just the slightest little bit when you hold her in a standing position. Normally she tucks her legs up all the time protecting her torso from any pain. Stretching out the G tube area can be uncomfortable and sometimes painful for them so she protects herself as best she can. She still adamantly dislikes being on her tummy for the same reasons she tucks her knees up. But the therapists force her to do be on her tummy and she is showing slight signs of improvement.
Her eating is still non existant orally, but we are working on it. We have the feeding team appt this Wednesday to hopefully get this reflux under control. We asked about the fundiplication procedure, which is a surgical procedure (fairly simple) to fix the reflux, but all the doctors agreed that that would be a last resort and they would want to wait until she was at least a year old. She is happy to have the food in her mouth and actually laughs and enjoys the tastes but when it comes to swallowing, the food just sits in her mouth and drools out. She is just so afraid to swallow anything. Poor thing.
I am anxious to see what the feeding team has to say about everything. At least Dr. Rao covered his bases and we know these problems are not due to cardiac failure.
Ethan and I were reflecting on this past year this morning. Last year this time, we were coping with the fact that we were going to have a sick child and that she may not live. we were also packing up our house and moving 60 miles to be closer to the hospital, family and Ethan’s new job. As we are planning Gabi’s upcoming first birthday, I was looking through pictures that I haven’t looked at in a almost a year, when she was on ECMO and had her chest wide open. Feels like it didn’t even happen. That couldn’t have been my child, that couldn’t have been us. But it was and it feels so surreal.
So much good has come out of her life so far; I can’t even imagine what else God has planned for her.