10:27am Good morning! :) This is Michele again. We are trying to figure out this site to where I can update too, which will be easier; Josh has set this up, I just need to finish the process. Didn't get a chance to update yesterday. Yesterday was a good day as far as progress; at least the baby steps of progress we are trying to get used to. Avelyn started having more wet diapers, which is one of the major things we have been praying for because she needs to get rid of a lot of fluid. So we have been very thankful for that. Praise God! We are still continuing our slogan of 'pray for pee.' :) Also her chest looked less swollen to me, which was nice to see. Her little face and head were still so swollen though. They had to put a bilirubin light on her, which I absolutely hate bc her eyes have to be covered with a little mask and I cant see her beautiful eyes and she can't see us. :( This is really hard, so please pray that her bilirubin levels become normalized and we can get rid of the silly light. They are allowing us to turn off the light a couple times a day and remove her 'shades' as we call them, so I always look forward to those moments. She always tries to open her little eyes to see us talking to her and I love that. Bc her face is so swollen it is hard for her to do this, but she is able to a little at times, especially when we first talk to her.
Today: When I went to see Avelyn this morning, it wasn't as good news. Her chest looked more swollen to me again today and they also said her chest x-ray looked a little worse as well with a bit more fluid in her lungs. This is something we battled early on, and the chest x-rays had been improving. In fact her first night here, they were ready to do a chest tube to drain the fluid, but praise God the chest X-ray just before this showed some improvements, so they held on it and haven't needed it since, which we are very thankful for. It still looks quite a bit better than it did initially, so that is great. They let us take off her shades when I saw her earlier and it was so nice to see her try to open both of her bright blue eyes. Love those moments. She was getting a little agitated with them trying to reposition her, so they had to give her morphine, which they have been doing about one time per shift. When she gets agitated, her O2 goes down and her blood pressure goes up, which they don't like, so this is where the morphine helps. I'm sure she is SO uncomfortable having all that fluid, and I am complaining about a little swelling in my legs. I feel so bad for her. :( I'm sure the morphine helps with this extreme discomfort, as well.
One thing I am very thankful for is that all the staff here has been just wonderful. I missed rounds bc I was in the room pumping. Josh was there, which was good, but when I went back over there, they didn't hesitate to answer a couple extra questions I had between the rounds they were making with other kiddos. Praise God we are in good hands with great people.
Please keep praying for her to get rid of all the fluid in her abdomen, chest, head, and face, her chest x-rays to also show the fluid is leaving her lungs, and for her bilirubin levels to normalize so we can get rid of the light and she can go without those dreaded shades (this is probably one of the least of our worries, but would be an added bonus to me and I'm sure her, too). Just pray for healing...
Love u all and thank you so much for the prayers.
-Michele
Today: When I went to see Avelyn this morning, it wasn't as good news. Her chest looked more swollen to me again today and they also said her chest x-ray looked a little worse as well with a bit more fluid in her lungs. This is something we battled early on, and the chest x-rays had been improving. In fact her first night here, they were ready to do a chest tube to drain the fluid, but praise God the chest X-ray just before this showed some improvements, so they held on it and haven't needed it since, which we are very thankful for. It still looks quite a bit better than it did initially, so that is great. They let us take off her shades when I saw her earlier and it was so nice to see her try to open both of her bright blue eyes. Love those moments. She was getting a little agitated with them trying to reposition her, so they had to give her morphine, which they have been doing about one time per shift. When she gets agitated, her O2 goes down and her blood pressure goes up, which they don't like, so this is where the morphine helps. I'm sure she is SO uncomfortable having all that fluid, and I am complaining about a little swelling in my legs. I feel so bad for her. :( I'm sure the morphine helps with this extreme discomfort, as well.
One thing I am very thankful for is that all the staff here has been just wonderful. I missed rounds bc I was in the room pumping. Josh was there, which was good, but when I went back over there, they didn't hesitate to answer a couple extra questions I had between the rounds they were making with other kiddos. Praise God we are in good hands with great people.
Please keep praying for her to get rid of all the fluid in her abdomen, chest, head, and face, her chest x-rays to also show the fluid is leaving her lungs, and for her bilirubin levels to normalize so we can get rid of the light and she can go without those dreaded shades (this is probably one of the least of our worries, but would be an added bonus to me and I'm sure her, too). Just pray for healing...
Love u all and thank you so much for the prayers.
-Michele
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