october 7th, 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 7th, 2012

It was our first slow day since arriving at the hospital eight days earlier. So much had taken place. We were driven forward and pounded with loads of information. But this day was different. Matilda had been diagnosed and received her treatments. Now we were just supposed to wait.

Waiting. Even the word sounds slow and heavy. It is always difficult. In the silence of a quiet room, doubt and fear begin to seep in. It was on these days that I relied most on others to lift up and hold my hope together. I was grateful for the kind words and encouragement sent by so many.

Wanting to participate in Matilda's care I would stand next to her isolette for hours. But she was sedated and on a ventilator. My legs would begin to weaken, my voice became hoarse, my mind numb. And soon enough I would be sitting in the corner letting my thoughts of guilt and shame cloud my spirit. I often wondered if people prayed less on days that I only posted a couple updates. Those were the days I struggled the most. Prayers brought spiritual comfort that I could measure by the hour.

As I scrolled through the endless pages of Facebook my soul found conflict. It was something to do, something to see, something to catch up on, but it was also happiness, it was people moving along the usual way. It was a reminder that I was trapped in a situation with an unclear ending. In moments of deep weakness I would read status updates with resentment. As soon as I became aware of my internal actions I would force myself up. I would leave the hospital. Get some coffee. Clear my head. It was a daily battle of will to stay focused on maintaing my mental health.

I posted this on Facebook:
Today has been slow. We wanted to take out Matilda's breathing tube this morning so that she could be off of the sedatives. The problem is that her liver has to process the sedative and because her liver is weak she is not waking up as quickly as expected. They are not worried and tell me it will just take a little bit longer.
It had been four days since I held my baby. The emptiness in my arms was beginning to weigh me down. Matilda was two weeks old. When Parker was two weeks old we were living in Australia. He never slept and cried unless we were outside. I held him constantly. With Parker in the carrier, I would walk for hours only to stop at a coffee shop or a park bench to nurse. We were inseparable. But here I was separated from my Matilda, my little girl. And as the day moved on, the heavier my heart became.

I posted this at the end of the day:
Bummed. She did not wake up in time today and they don't want to "risk" anything over night, so they are turning her sedatives back on. We will try again tomorrow.

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