Ryelee now weighs 4 lbs 1.5 oz and is 16.5 inches. She is growing even without being able to eat. They have her on fats and lipids going straight into her veins.
The good news is we can now hold her swaddled in a blanket. I was the first one (besides mom and dad of course) to hold her! I was there with Mom and she asked me if I wanted to. I was so excited. It was wonderful! I had waited so long!
She has been back and forth on CPAP, just on canula, back on CPAP. She is currently back on just oxygen and is doing pretty well with it. She had a set of GI track x-rays with contrast and it took several days to go all the way through her. Her motility (the movement of the intestines) is extremely slow. A pediatric gastroenterologist was called in. They have checked the sample of intestine from her surgery for nerve cells which they did find. However she could still have some disease going on. They may have to do further testing. For now they are starting feeds of pedialyte. It has been so long since she has been able to have anything go through her that they have to start really slow. Just like people who are in starvation mode you can't start feeding them rich food all of a sudden. Same thing for her. The motility in the GI tract slows way down.
We are very hopeful that she will handle this well and all will be OK. The Dr did say that she probably will not go home anywhere near her due date. That is so frustrating for her parents. They just want to take her home, love her and take care of her.
I got to assist Mom with giving her a bath. It was so fun to watch her. She was wide awake and so happy. She has little black and white pictures of animals on the top and sides of her isolette. She likes to look at them. She is such a sweet baby and it is amazing to me how early their little spirits start to show through. One day I was with her for about 3 hrs. Most of that time I was alone. She was awake and sometimes fighting CPAP. I read stories to her and attempted to sing I am a child of God, but I started crying and couldn't finish. She likes to be read to and talked to. She can definitely hear and understand. It was a very special time and I was on cloud nine for days.
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Hi Pam,
I am so glad to hear things are going well with Ryelee. She is so sweet!!! I just found out about your blog. You know how fast news travels around hear with Todd...I need Amamda's mailing address so if you get a minute will you send me an email(not to Todd I will never get it) Tell everyone hi that that we love them. Our prayers are with you.
Love,
Holly
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