After a 7-month hiatus, we're trying to start feeding Elizabeth by mouth again. With all her illnesses last fall, and the multiple hospitalizations, her oral feeding just stopped and we've been waiting to move forward again until she was stable. (read: not throwing up, in the hospital or suffering from severe diarrhea) Winter seems to be officially over here in St. Louis and we are hoping it takes the cold season with it. Elizabeth has regressed quite a bit in her chewing and tolerance of textures, but has matured quite a bit and seems let adverse to some flavors. She asks for a "bite" of anything resembling pizza and will tolerate some small tastes of yogurt.
I frequently get asked if we can just start her off like a baby again and reintroduce everything...the answer: unfortunately it's not quite that simple. We'll start there, but she has a history of throwing up when anything stays on her tongue, (something a healthy baby doesn't necessarily come with) so we have to retrain her to not gag and desensitize her to the textures on her tongue. I did it last spring, but it was my full time job...no less than 8 hours a day spent making food, helping her eat it, cleaning her up after a vomit and re-feeding her via g-tube everything she either lost or didn't get in the first place. With a 2nd child, I simply cannot do that this time around.
The good news is, we've had some success at self feeding, so hopefully the excitement of doing it herself will motivate her to try more...that has yet to pan out, but it's definitely not hindering her eating.
I'd appreciate your prayers for:
*Wisdom about how & how quickly to progress. I tend to want to push her and make daily progress...one more cc today than yesterday, etc. But she's got her endoscopy scheduled for April 21, and depending on what we see (still praying for a miracle!) this may or may not be a great time to make significant changes in her diet (she's on 100% Peptamen Jr. ~ 40oz/day). If we add food, then we have to start counting calories...and so far, we've really struggled to get all 1200 calories (what she needs to grow) into her just by feeding her food.
*Courage and encouragement for me (Sara) to tackle this again. Honestly, I'm dreading it and if I had an extra $10,000 lying around, I'd gladly pay for the feeding folks in SF to come work with her. I feel quite overwhelmed at all that she has to learn in order to first eat, then eat enough in order to get rid of her g-tube.
*Healing for our Eliza-bug!
Here's a little video of us getting started