Weird. It's been a pretty good day with all the great news; tubes coming out, IVs coming out, Abi being alert a lot during the day, yet it's been a rough day.
We spent with her about 7 hours this afternoon and she slept about 45 minutes only. She was exhausted; bottle feedings didn't really work. We got to hold her in our arms and it was great. She looked so tired though; her eyes, still big but rather gray than blue disappeared somewhere deep inside; we had to leave for the nurses shift change; it was the hardest moment today; she was awake, looking at us with the eyes saying she didn't really know why we were leaving her. It was easier when she was drugged up and sleeping.
Now, she finally fell asleep. In her big girl bed; listening to the same music she listens to every night at home.
I pray she has a good night.
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Don't worry about her eyes looking so tired. Once she's off all the meds and in a more normal place (home!) she'll look fine. It's funny you mentioned the eye color. Conway's had been blue up until his surgery just before he turned six months old and his have not been blue since. Even our pediatrician thought that if they stayed blue that long they'd be blue forever. Sorry to hear she had to get the tube. I know you didn't want it, but maybe it'll be good to give her a bit more of a rest. She really has been recovering at a phenomenal rate and it's got to be exhausting for her. Don't be afraid to ask the nurses to turn down the lights and put a sign on her door requesting quiet if you think she'd benefit from a nap here and there. Most people who work in hospitals sometimes seem to forget that patients need their rest! I know what you mean about leaving her when she's awake. During Connie's first surgery, U of M had a similar policy where you had to leave during shift changes, etc. and it was so hard. They've since adopted a more "family focused" care approach and allow parents 24/7 except during sterile procedures that are performed at the bedside. It only gets harder as they get older. I'm so glad that this past summer when he had another surgery we were able to stay with him the whole time. Get some rest tonight and know that I'm continuing to pray for her and you both.
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I'm sorry for the disappointment of the feeding tube. Try to focus on all the great accomplishments of the day and know she is still ahead of "schedule"...and before long she will be back to her normal smiling self! Love you guys and still praying fervently!
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