october 16th, 2012

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 16th, 2012

I was relieved to start a new day, yet terrified for what it might bring. During rounds there were big discussions about how to control Matilda's blood sugar, when to take out her already expired central line, and what might be causing all of the stomach upset. I was really looking forward to figuring things out and talking further once the morning calmed down.

But the morning never calmed down. Doctors were all over the place and would just stop by briefly to have a look. There were no extended conversations, words of encouragement, or flirting with our beautiful girl. Just long pauses, deep breaths, and sad eyes. Matilda did not look good. In fact, she looked horrible.

We should have seen it coming when the liver doctor took one look at Matilda, then back at us, only to say, "So, we wait for liver," before leaving the room. We were floored. It felt like we were hit by a train. When did our Plan B (liver transplant) become our Plan A?

We wanted more clarification. We wanted to understand the situation. We wanted a different plan. After speaking with the doctor a second time, I posted this on Facebook:
Tyler and I are holding each other tight as we try to process the morning. Matilda continues to throw up and her sugar dipped down to 30 during a plasma treatment. Then the liver doctor came to tell us that things look worse. We will try IVIG again today but he would not consider doing another double exchange transfusion. He said he is not hopeful she will recover and the answer is to wait for a transplant. My heart is pounding and tears are flowing. Prayers are needed.
Later that day I posted this:
Today continued to get worse. They think that Matilda has an infection in addition to her liver failure. Or it could just be a reaction to one of her medications. Either way they are giving her broad spectrum antibiotics while we wait for the results from the cultures. On the bright side, since they have stopped her feeds she hasn't vomited and a bit of her spunk has come back.
We took turns holding Matilda in our arms. We held each other and cried. And we read the nearly 100 comments and kind words sent from friends and family. I held my breath hoping that this was the worst. But, nothing could have prepared me for what took place late that night. It shook me to my core and forever changed who I am.

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