Our Down Right Beautiful Life: Feeding and Weight Gain

Now that Claire's heart is fixed (YAY!!!!!), our next goal is to come up with a more long-term plan for feeding and weight gain so that was what our appointment was about today. Our current solution (continues NJ feeds with a pump) can only be temporary as it isn't the best scenario for her to learn to swallow and eat on her own - and none of us like it! She hates it and often tries to pull it out and, if it comes out, we have to have it replaced at the emergency room (this has already happened twice and we've had countless close calls). Because of this, we've had to keep a very close eye on her for the last month.

Her weight has fluctuated a bit over the last month but, overall, it is back to exactly where it was 3-4 weeks ago. This is not concerning though due to what she just went through.

Developmentally, it is difficult for Claire to learn to swallow and eat well while having a tube in her throat. The plan we made today is that over the next 3 weeks, Claire will have weekly weight checks at the GI clinic (first one was today) so that we can begin to see where she is at with her weight gain now that her heart is fixed. She will also be evaluated by a speech [feeding] therapist in about 2 weeks so that we can make a good decision about whether or not we want to go ahead with having a G-tube placed. It sounds like the only way we would not move forward with this is if they feel like she has made really great progress with her swallowing since leaving the NJ tube in much longer wouldn't be ideal for her development (or our sanity ;) ). Having the G-tube in place would allow her to learn how to swallow safely (without the challenge of having the tube in her throat) while still supplementing her nutrition through the tube so that we could focus on helping her learn to swallow safely and at her own pace instead of also stressing about her getting adequate volume and calories at the same time. The surgery would mean another 2-ish night stay in the hospital but could really help her make some great progress with her oral-motor development (and our favorite general surgeon and anesthesiologist have already said that they would be the ones to do it which helps us feel more comfortable). There is a high possibility that if we move forward with the surgery, she would also perform a Nissen fundoplication which means that she would wrap part of Claire's stomach around the bottom of her esophagus so that she would no longer struggle with reflux (and aspiration of reflux) and we could feed her directly into her stomach instead of having to continue to put it into her intestine.

Coming up over the next week she also has her 4 month developmental evaluation, 4 month check-up, weekly OT, and another eye appointment. I will update again next week unless something big happens before then.

As always, thank you for being a part of Claire's Army <3.