october 19th, 2012 (part 2)

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 19th, 2012 - part 2

From the moment that we were given the news that Matilda had acute liver failure I began praying. I prayed that my family could come out of this together. I tried to keep a calm spirit surrounding the idea that the outcome was not in my hands, rather, the reaction to the outcome was.

But as Matilda waxed and wained through a cycle of hope and disappointments the burden began to settle in the room. There was one choice we would have to make, a large elephant in the room, and today was the day we needed to talk about it. We set up a formal meeting to openly discuss with the transplant team what going forward looked like for Matilda.

Tyler (my husband) and I are very different. He is a logical scientist. He thinks about numbers, statistics, and outcomes. Long before we were in this situation Tyler had voiced many concerns about over population, taking medicine too far, and even his uncertainty with organ transplants. The life cycle requires death.

I prayed for strength.

Tyler had been taking in all of the information given to us about the transplant process. He read every bit of paper they gave us. He did not like the statistics, he did not like the risks, and he was not sure how felt about it morally. He spoke with the leading expert on Neonatal Hemochromatosis and asked about avoiding a transplant. Dr. W explained that in his program the parents choose from the beginning to be placed on the transplant waiting list or to go forward with his treatment plan. We were doing both. He told us that based on what he had seen of Matilda's numbers, if the perfect liver came, to take it.

I prayed for clarity.

Tyler walked into the meeting with questions and arguments in hand. He was ready to put up a fight. To convince the team that perhaps a transplant was not the right answer. But it turns out that in situations like this, there is no right answer. They went over different cases with us, what decisions were made, what the outcomes were, and what they learned.

I prayed for peace.

The recommendation was clear. If a liver came that night, Matilda would get it. They could not grantee or give a time line as to how long they could keep Matilda alive.

I prayed for comfort.

As we walked back to Matilda's conner of the Pediatric Intensive Care Unit. I saw a shift in Tyler. And for the first time we sat together and really talked. We talked about how scared we were. We talked about what it would feel like to make a decision, to loose Matilda, and to have to live with that burden. We talked about what it would be like if went into a decision not united, and how that could tare us apart. We talked about Parker. We cried. And then together we prayed.

We prayed for perfect timing.

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