october 6th, 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 6th, 2012 - part 2

... and I pretended with all my heart that this was all normal.

Only nothing about what we were going through was normal. I was two weeks postpartum. Two weeks postpartum should look exhausting but magical. It should be full of baby snuggles. Long hours of nursing. Taking a ridiculous amount of pictures. Worrying about silly things like laundry, forgetting to eat, and people stopping by while you are still in pajamas.

I had not held my newborn in days. I had spent more nights sleeping in the hospital than I had in our new rental house. One thing that never felt normal was the way that we remained, while the doctors and nurses went home. They would come back refreshed and clean, holding coffee. And we would be right where they left us, still wearing the same clothes - stale and worn. Sleeping where others worked seemed so not normal. Maybe more so because we did not have a room, but rather a curtained area. We were never alone.

The list of not normal could go on forever. I wasn't allowed to change Matilda's diaper. I pumped breast milk while doctors/nurses/staff walked in and out getting things done. Not changing clothes for bed, riding on the subway, walking to get coffee alone, enjoying views of Central Park, getting up to leave the area when I heard the wheels of the x-ray machine inching down the hall, documenting my newborn's life out of necessity not joy - these things were anything but normal.

And then there was the time during Matilda's transfusion that one of the nurses casually handed me a bag of blood and told me to put it in my shirt to warm it up. So there I sat, with a bag of blood on my chest. And the most not normal thing about it was that I was glad she asked that of me. I was glad because it made me feel like I was contributing. I was glad that in this small way I could take care of my newborn.

By the end of the day the double exchange transfusion was over, I posted this on Facebook:
The transfusion is complete! Tonight she will receive the second part of her treatment and then the waiting will begin. It takes two to four weeks before results can be seen. Thanks for all the prayers! Let's continue to pray that this works and a transplant will not be needed.
But the truth is that things were beginning to feel normal. We had an established routine. We enjoyed the company of never being alone. We were comfortable, under the circumstances, living at the hospital. I wanted to spend every possible moment with Matilda - that was normal. I prayed for comfort and strength - that was normal. I spent my day staring at my newborn, who I was so in love with - that was normal. The thing is, if we always lived in the normal, then we would miss out on all of the extraordinary bits. And Matilda is definitely extraordinary.

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