Avalon is doing quite well. Last week she had a bit of a rough week, as did I. I came down with a horrible virus that made me throw up and have more diarrhea than I've ever had in my life. It was horrible. I got so weak that Tyler had to carry me anywhere I needed to go. Luckily it was only bad for two days. I had to stay away from Avalon though and that was so hard. She was a bit sick as well, though nothing like me thank goodness. She didn't eat well for the week and had to be fed mostly through her G Tube.
She has now graduated up to stage 3 feeding! YAY! This means she has 6 out of 8 of her feedings BY MOUTH. Either by breast or bottle. The other two go in her feeding tube. She is still getting used to the change and is often too sleepy to take all 3 bottles during the night but she always takes the breast and does great. I love that she does so well at breastfeeding. I have been able to work it out the last couple of days to feed her three times a day. It's been nice to spend some extra time with her. I hope I can keep doing it until she can come home. She needs to take all 6 feedings completely for 2 days in order to be upped to stage 4 which is all food by mouth. Then she can get her feeding tube out after 2 more days of that!
She still has the nasal canula for oxygen flow. It is set on room air percentage but the flow helps her to remember to breathe. She is still having several ABD spells and several desaturations. She mostly recovers from these on her own but sometimes requires stimulation to get over them. I think it will just take some more time for her brain and body to learn better what it needs to do. Poor little thing.
The doctors and nurses think that perhaps her acid reflux is causing some of the spells and so they put her on a 5 day trial of Prilosec to see if that will help. If it makes a difference they will keep her on it, if it doesn't then they will stop it as it can inhibit some vitamin absorption. Hopefully it helps.
Her Vitamin D came back low so they have also upped her vitamin supplements to combat that. I've also started an extra Vitamin D supplement in the hopes that that will help her as well.
Today she was having a lot of desats and not recovering as well on her own. She had 7 spells in an hour which is WAY more than is normal for her and to the point where the nurses were getting very concerned. So they called in the resperitory specialist to check on her. After listening to her lungs while the nurses turned up the flow of oxygen she discovered that it was not getting through to her lungs. Her canula was clear so they sucked out her nose. Low and behold they sucked out a ton of junk and she has been doing great ever since! She was just stuffy! I'm so glad it wasn't something worse! So from now on if she starts acting that way again they will first check her nose! Silly baby.
She is so sweet and definitely knows her Mama. It warms my heart to know she does better with me and waits for me and is always eager for more Mommy time :) It's something I really need!
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