Annabelle still hasn't made any progress with her oral feeding so today we were approached about another feeding option...a G-tube. This is a tube a little larger than the NG tube she has in her nose now but it is more permanent. It would be put in through yet another surgery and connects directly to her stomach. She would have the tubing coming out of her stomach instead of her nose and we would feed her through it. She would be still offered to feed orally and what she doesn't get down that way she would have put through the g-tube. I am not wild about this whole thing at all. The last thing that I want is for Annabelle to have another surgery (although I have been told this is not a big deal compared to what we've already gone through). She would still have to be under anesthesia and on a ventilator again. She may or may not go back to PCICU before she could come back to the floor all depending on how she comes out of surgery. This is a way to expedite our going home and would hopefully only be in for several months. I only want what is best for her and I know that her little heart is already working twice as hard as most healthy hearts. Plus, we don't want for her to burn all the calories that she is taking in by working so hard to eat. A lot of this is a matter of time, her endurance level and her strength overall. So, we've met with the surgical team today and she had an upper GI done. We are supposed to be scheduled for surgery sometime toward the end of next week. Please pray that this surgery is not needed and she can take her bottle by then!!! We have a week to work on it and we already know that God can work miracles...she is one!
6 comments:
I am constantly praying for you and for Annabelle...I hope she starts using the bottle...Let me know what else I can do..I know she will pull through!
We are praying that Annabelle will start eating enough through her bottles that she won't need the surgery next week. We all want the best for your family!
Love, Joe and Kim
You should talk to baby Julianne's parents if you haven't already. I remember they struggled with the same issue after her first surgery and they postponed the G-tube and just kept with the NG tube. They may be able to give you some support about this feeding issue. I have another friend with an HLHS baby girl who also ended up going home on the NG tube instead of the G-tube. In the meantime, I'm praying that Annabelle will start eating so that tube feeding won't even be an issue any more.
This is from Cody, "I'm praying for Annabelle. Um...when are we going to come to your house? I hope Annabelle gets better soon. We hope she has zero trouble eating." :)
Still praying and will continue to pray for the feeding issues and that God will lead you in making decisions and feeling at peace with what you decide.
Love you,
Linda Green
Hi Rebecca--Just wanted to let you know that Eddie (Patrick's dad) had a G-tube when he underwent radiation treatment. He did very well. And when it wasn't needed anymore it was removed without surgery. I hope Annabelle's goes as smoothly as his did. Patrick and I believe that God can give her the strength to feed without it, but if not He will give her the strength to endure the G-tube surgery. She truly is a miracle. We love you guys. Let us know if you need anything.
Love,
The McDonnells
Patrick, Ruth, Joshua, and Caleb
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