october 10th, 2012 (part 1)

Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 10th, 2012 - part 1

Matilda slept most of the day. But when she was awake it was a treat. We would sing to her, read her books, tell her all about her brother, and smile at her and each other. Those were the best moments. The child life specialists for the PICU were amazing. They brought Matilda a musical toy that moved and had flashing lights. We preferred to engage her ourselves, but our days were often filled with visits from doctors, social workers, and specialists, and for those moments, it was nice to have twinkling music and a distraction for Matilda. Not to mention, she loved that thing. It was so comforting to see her reaching for it and watching it move. It was good to see her doing normal baby things.

On this day, there was lots of talk about what to do with her increasing and unstable ammonia levels. I posted this on Facebook:
Yesterday Matilda's ammonia levels went from 300 to 104 by the end of the day and then back up to 200 over night. A normal range is 14-50. They are not sure why her numbers go up overnight since her management plan does not change. Elevated ammonia levels can cause a number of problems one of which is brain damage.
I didn't see it then, but it is clear to me now. Her numbers went up overnight because less people were awake and praying for Matilda. There were people all over the world, from different churches, different cultures, and they were all praying for Matilda. And I have no doubt in my mind that those prayers were what kept Matilda alive.

Her sweet little body was being flooded with toxins that could no longer be filtered by her failing liver. She received plasma twice a day to help improve her INR (ability to clot blood). Blood transfusions took place most days. She was unable to keep food down, so she was on continuous IV feeds along with twice daily doses of IV lipids. On top of all that, Matilda had a number of medications to counteract the effects of organ failure. All of those interventions were completely necessary, well thought out, and a blessing. But I am equally thankful for the intervention that so many people made on behalf of Matilda through prayer. I felt it, I saw it, I relied on it.

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