october 6th, 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 6th, 2012 - part 1

October 5th (parts 1, 2, 3) was the longest day ever. It took much more out of me than the day I gave birth to Matilda. Trying to process everything that had taken place was just too much and Tyler recognized that I needed to clear my head. He suggested that I take some time to myself in the parent's lounge down the hall. He assured me that he would stay awake during the double exchange transfusion and text if anything looked rocky.

I kissed Matilda and left. The parent's lounge was usually empty. The empty moments were always too quiet. I remember that I wanted to cry. I wanted to have a moment, express what I felt on the inside, and deal with what had happened that day. But it was simply too much. I was too exhausted. I was beginning to feel numb.

I woke the next morning and posted this on Facebook:
They just finished the second round. Two more rounds to go. Tyler stayed in the room with Matilda all night to supervise. I went to the parent's lounge to pump and feel asleep hard.
There had been no complications. Tyler stayed up the entire night. He was smiling when I walked in the room and proceeded to tell me the funny story of how he started to doze and the night nurse tried to put a blanket on him, and he of course woke up when she was right above him. I was rested. Tyler was laughing. Matilda's transfusion was halfway over. It was a new day.

After rounds, the liver specialist came to talk to us about Matilda's MRI. Iron deposition was found in her liver, but not in any of her other organs. We also talked about giving this treatment some time to clean her system and recover her liver. I have this clear picture of everyone smiling and feeling so incredibly hopeful that Matilda would be fine. A transplant was the last thing that anyone wanted. Matilda was too small, too young, and the procedure was just too risky.

After a quick trip for coffee in anticipation of a long day, I posted this on Facebook:
Taking a break while we wait for more blood to arrive. I walked down the block to get a coffee and the priest that blessed Matilda with a baptism was in line in front of me. He asked how Matilda was, and how we were holding up. I told him that our support team at home has been lifting us with prayer and we can feel it.
Everything was coming together. Everything seemed taken care of. Everything was going to be fine. On days like this I held myself together with positive thought. I filled every space of my mind with love, hope, and joy. I did not allow fear a chance to creep in. I smiled. I held Matilda's hand. I said prayers of thanks. And I pretended with all my heart that this was all normal.

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