When we talked to the doctor this morning they confirmed that they were going to give her a NJ tube (the one that goes past her stomach) and begin feeds tonight. So we left and when we came back she did have a tube in her nose, however they said they can't use it. They said they couldn't get it past her stomach into the jejunum. They tried twice and said they would have another nurse try tonight. If they didn't get it on the next try then it would be up to the doctors whether they wanted to continue trying or whether they are just going to keep her on tpn and lipids until her G tube starts working. Every time they try to put it in, they have to do an xray and they have to decide if it's worth exposing her to radiation. She can live and grow with the nutrients in the tpn and lipids, but it does nothing to eliminate the hunger. My poor baby has gone without food in her belly for almost 2 weeks now. And she has another 2 weeks before they attempt to feed her through G tube again. The thought of her being hungry hurts my soul. And even if they get the NJ tube in, feeding her through there won't make her feel full because it's not going into her stomach, but they said it'd be better than what's she's feeling now. Plus breast milk is so much better for her. I'm praying things look up soon. It seems like all we've gotten lately is more and more bad news.
Awwww sweet little girl! I hate that for her, but think of all the blessings so far- she is such a fighter. She sure is going to be a GA girl- sweet and pretty and tough at the same time.
ReplyDeletePrayers are being sent your way. If there's ANYTHING we can do please don't hesitate to ask. I know I say that a lot, but it breaks my heart to see her hurting, and To know how much it must hurt you as her mom. I'd take it all away If I could.
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