Thursday, April 29, 2010

Having Faith, gets you so far.

We arrived at Pittsburgh at 12:30am. We met with another team of doctors and signed more consent papers. I was amazed by the team there. They had faith, and a plan. They even had a backup plan. They never once promised me false hope, and I begged for it, but they promised me to do the best they could. I had to believe in them, and that God would get us through this and guide them! When we arrived they were trying to get a line in Lynlee, and the catheter for the dialysis. Babies veins are so small that it takes time, and Lynlee was so dehydrated it was almost impossible.

Around 3:15am Lynlee finally started dialysis. The ammonia level had to go from 1100 to under 200 for the dialysis to stop. Projected time 6 to 8 hours! They were taking her levels every hour.

6:45am- Her ammonia was 180. They stopped the dialysis. Only 3.5 hours, that was better than expected! Many blood transfusions were done, and for the next few days everything was a waiting game. We had to make sure her ammonia level would stay down. We knew she had Urea Cycle Disorder, but still was unsure what enzyme was missing and how manageable everything was.

Later Saturday evening we learned they had narrowed it down to one of two enzymes. Both were extremely manageable with medication and strict diet. They done a DNA test to know exactly which one.

On Sunday morning Lynlee was moving some. She had been in a coma due to the high ammonia (which Ruby was unable to tell us). She still was not awake but movement was good. They took Lynlee off the breathing machine and she did so well! Our family had decided to go home and Ryan and I had got into the Ronald McDonald house.

Sunday evening we went up to tell Lynlee good night, and for me to give her our nightly talk. I found myself praying with her everything night. I told her how strong she was, and how she was a fighter, and how God had big plans for her. This was just a bump in the road. I was washing up when Ryan was saying, Stacy get over here!!! Our nurse said, yeah she has the hiccups. Ryan said NO, Stacy hurry. I ran over not knowing what to think... And there it was our baby girl had finally opened her eyes. It has been SO long since I'd seen her eye's and at one point wasn't sure if I'd ever see them again. It was the most beautiful thing I'd ever seen, and something I will never forget. And for the first time in a while I slept some that night.

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