A little more

I guess its time to add a little more to the story...where did we leave off...

Friday, March 21, 2008 at 12:10 pm Carly was born via c-section weighing in at 5 lbs, 3 oz and 19 1/2 inches long. I woke up while I was being closed up and was only told that she had been intubated and was taken to the NICU along with my husband. Thad came and saw me in recovery and showed me some pictures of our beautiful girl. Finally after 4 hours in recovery I was wheeled (in bed) to see my girl. She was beautiful!!! I was taken up to my room after 30 minutes so a brain ultrasound could be performed and right after getting settled the NICU called for my husband to come down and talk to our Neurosurgeon and Geneticist. C-section or not, do you think I was going to let him talk to the Dr's alone?!?!?

The diagnosis was not good. Her brain looked like mush. She may or may not live. She would be on machines to breathe for the rest of her life. She would never walk or function like a normal child. Her life expectancy was not long. She probably had brain damage although the extent was not known yet. She had a malformed nose (it was flat to her head, like it had been pushed over) which could be due to other genetic disorders. Testing would need to be done to find out what other genetic disorders she had.

I spent a few hours with my baby just holding her hand and touching her face and back. Contact was limited so she wasn't overstimulated. Leaving her that night was the hardest thing I had to do but our wonderful nurse promised she would call with any changes. That night was rough for me both physically and mentally. Recovering from a c-section sucks!!!

Saturday morning she was already showing improvement. She was extubated and placed on c-pap! I wish I could remember the details and even more, I wish I would have kept a journal documenting her progress. Sunday was Easter and we spent the day with Carly and then my family brought us yummy Easter dinner. That night we finally got to hold Carly. My dad and my brother and brother-in-law came over and gave Carly a blessing (something our church believes in). She was scheduled for an MRI Monday afternoon and we were scared for what that would show.

Monday morning when I went in to see her she had been placed in a bili blanket. Her bilirubin levels had gone up through the night and were very high. But she was finally starting to take a bottle. I was allowed to hold her but it was very limited. She was taken for her MRI that afternoon while I waited out in the hallway. We didn't get the results back until later that day but the results were nothing that anyone expected. She was a completely different baby. Her brain looked like a normal brain. It was still massively swollen and the diagnosis of Aqueductal Stenosis was certain but other than that her brain looked normal. We were blessed again.

I was finally forced to leave my room wednesday evening and had to go home. The week went on- a bili light was added to her treatment, she went up on her feeds and her levels finally started to go down to a normal level. By thursday morning they were talking about going home! I had Thad bring down her carseat for a carseat test and she passed! Now she had to keep her feeds up through the day and we would get to go home!!!

Friday came and we were discharged!! Now time to panic. We were given a list of things to watch for and our appointments were set so we were off into the big world.

Up next, pictures from the first 2 weeks at home and Dr's visits!