October 2nd, 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 2nd, 2012

It was the first night that Tyler and I slept in the hospital chair together next to Matilda's bassinet. We slept well. Breakfast sent from a friend was a welcome reminder that we were loved. We started and ended that day with a rejuvenated sense of hope.

Testing began first thing in the morning and continued all day. There was a constant flow of doctors and specialists explaining what each test meant and what the results would indicate. They were slowly narrowing down what might be causing Matilda's acute liver failure and the process felt promising.

I posted seven messages on Facebook in an attempt to notify family and friends of what was happening with Matilda.

I think this was shortly after Matilda was extubated mid-morning: "They were able to take out Matilda's breathing tube! I got to hold her for a few minutes before they got started with an EKG. Today is going to be a full day of testing and screening so that she can be placed on a liver transplant list. She will be placed on the top of the list because of her critical condition, but the hope is that she will recover and not need a donor. Because of her size, live donors are not being considered."

I don't know if it was the optimism in my voice or the fact that Matilda was extubated but this post confused people. I got a number of messages singing praises that Matilda was recovering well and asking when we would get to go home. It was frustrating and isolating. How could we expect that everyone could understand? We were terrified that she would need a transplant.

Matilda was not recovering, she was being placed on the very top of the transplant list. I tried to clarify in this update: "They are still working on the EKG. There is a line of doctors in the hall waiting for a turn with the beautiful Matilda. Here is a bit more information as I understand it. She is not recovering on her own, she is just responding to all the medication they are pumping through her. They call that management of the symptoms. They have given a slew of antibiotics to cover any possible viruses, she gets plasma several times a day, medicine to lower her ammonium levels (which they are stopping today because she is doing better with this), etc. As the tests eliminate potential conditions, her treatment is refined to focus on the remaining options."

This of course was my favorite post of the day: "I got to hold Matilda tonight for over two hours! Right now they are giving her extra blood because they took so much for testing today. They also have her formula through a tube and she is keeping it down. Which is good from my point of view because I originally brought her in because I could not get her to eat and when she did she would throw it all up." My exhaustion showed through my writing.

And this one made me cry, hoping with my every ounce that the photo taken on my mom's phone would not be the last family picture ever taken with all four of us. "This photo was taken on the day we took Matilda to the ER. Parker had a good day of travel to Montana. We should get lots of results tomorrow. Please keep the prayers coming, they give us comfort." We had gone to a pumpkin patch on that day. I was furious with myself because the battery on my camera died shortly after arriving.

I got several voicemail updates from my mom as she traveled back with Parker. I imagine she was a bit traumatized by the events that had taken place over the last few days. She tried her best to be strong. She left one message where she fell apart and cried as she told me she loved me. In true (Mary) form, she followed that message with another one apologizing for the meltdown. She had come to NY to welcome her granddaughter into the world. Not to be swept from hospital to hospital across the state. Not to have to leave her youngest not knowing if she would suffer the greatest loss a mother can endure. Not to witness an impromptu baptism. And certainly not to say goodbye to her namesake Matilda Mary.

It was a long day. After all of the specialists had gone home, we remained. We got to hold onto Matilda and sing her sweet lullabies. We were excited that the next day would bring clarity and continued hope.

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