Not many updates tonight. Madeline has not been making any progress today :( . While she is stable and her urine output has improved from where she was at the beginning of the week and her BUN and Creatin levels are lower -she still is having trouble with the feeding.
She will not take the little bit off food she is getting by the bottle. So she has gotten her feedings through her NG tube tooday. The Dr. decided to continue with her feedings even though she had not processed them previously because she said that pushing through may help.
She also seems to have been very uncomfortable today. Her face was very swollen and she would cry out seemingly in pain at random times and did not seem to be very consolable. It is very exhausting seeing her in pain/her not taking the bottle/ not processing her food/seeing her swollen. We just want her to get better and get home SOON.
On the plus side the dr. said if she does well we may be able to take her off dialysis on Monday. Everything is wait and see. I pray we are not spending another month at the NICU....
An update on the other kids we mentioned: 'S' seems to be doing well and may go home in the next few days. She is able to have 'soft' foods like mac n cheese- if she can tolerate those she can go home :)
Coincidentally- I found out today that "A" is somewhat connected to me. I have a friend- who has a friend/former roommate who's brother and sister in law are "A" 's parents. The coincidence seems so crazy to me. After talking with the friend of the friend we found out that 'A' may have a chrosomal abnormality called Trisomy- they find out results of testing for this on monday. If it is the type they think it could be- the prognosis is less than one year to live. My heart breaks for this family. Please send extra prayers up for them. It's so sad every day here seeing other families suffer just as much as if not more than your own.
Please pray that we would have strength to remain positive and hopeful. As we always say we know God will take care of us no matter what, the time in the hospital is just wearing us down hard. It's getting unbearable being there every day just waiting....
Take care and God Bless all!
I have been praying for Madeline as well as the "S" and "A". I can not imagine what you (and the other parents as well) must be going through, but you can know that you are being uplifted constantly in prayer
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