This morning all the docs had their care conference where they discussed Hannah, among other things. It seems that they are all in agreement that they do not want to take Hannah back into surgery! Phew! The concern was could they actually fix the tricuspid valve and if they got in there and found they couldn't then what would they do? They feel that she can be managed with medications and go home on them with follow up. She may still need surgery down the road someday (months? years? we're not sure) or she may never need surgery, I'm still praying for the Lord to heal her tricuspid valve.
The concern now is that she is not eating very well. Over the last four or five days Hannah has taken in less and less formula and has lost a little weight. She has had a swallow study to check her ability to eat (excellent!) and the speech therapist has been here for several feedings and tried different nipples. Hannah can't get the first ounce of her bottle down fast enough and then it's like she just stops and looks at me like, "done." Sometimes she gets really fussy and starts crying and I wonder if her tummy hurts. She will love me sharing this with everyone when she gets older, but Hannah has always been a gassy kid and it's even worse now! She is on a lot of constipating meds and I think that combined with her increased fussiness and her difficulty burping during feeds has made her a VERY gassy girl. During her feeds she seems to get uncomfortable and I'm thinking eating may start a ripple effect in her gut, then she gets fussy because of the pain and cries even more, it's a vicious cycle. I'm planning to look online to see if there is some little tummy massage moves I can do to try and help her.
This morning she got another NG (feeding) tube placed in her nose, so far she's doing okay with it. We try to feed her and then the nurse can give her the rest of the feed thru that. The hope is that she picks up her oral intake and can go home soon. There is a possibility that she may end up with a G-tube if she can't eat everything and start gaining weight. That's the little port button thing that goes through her abdominal wall right into her stomach. We just have to see what the next several days ahead bring us. I'm not sure how long the docs are willing to give her to see if she can improve her eating, but I'm really getting anxious to get home before Christmas. A few weeks ago I bought Hannah some Christmas jammies and I would like her to wear them at home on Christmas Eve.
She is sleeping happily at the moment, no small miracle since she has decided that sleeping during the day is for losers. She gets to distracted by everything and then gets overly tired and really fussy. Despite all that I can still get her to smile sometimes. My cousin and her family stopped in briefly on Sunday and Amy came back to meet Hannah for the first time and the baby started smiling at her! I look forward to the time when we are home and my super happy smiley baby is back. You think I'm posting a lot of pics now!
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