a quiet storm

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 29th, 2012 - a quiet storm

All was quiet. At least that was how it seemed. I would move inside myself to a quiet place where holding my newborn was normal. Those first few days with Matilda were normal. I tried to remember what it was like to be home. What it was like to sit on the couch for hours staring at Matilda as she slept quietly on my nursing pillow.

Her alarms rang loudly.

The excitement from the afternoon had worn off. Matilda was still on the transplant list, but she was still very sick. Her ammonia levels were the highest they had ever been at 444. Normal is more like 15. Normal didn't exist for us anymore. Matilda's blood pressure was low at 58/28. Her monitors beeped and rang continuously. Her little body herked and jerked as mucus bubbled out of her mouth. Her skin was golden and stretched. None of this was normal. This wasn't the baby I gave birth to.

No, she was perfect. When Matilda was born, she was pink as can be, had nearly perfect Apgar scores, and passed all her screenings. She was the sweetest 7 pound bundle I had ever known. She nursed like a pro. She was beautiful. I held onto those days and replayed them in my mind. Real time moved forward, but my time with Matilda stood still.

We trusted the attending that was on call completely. The relief we felt when she walked in was nice. She sat with us for quite a bit. We went over Matilda's latest labs, talked about what everything meant, discussed options, and stared at Matilda. Dialysis could clear Matilda's blood of ammonia, but there were risks involved. And extra risks, at this point, were not anything anyone wanted to take.

More doctors were called in. More was discussed. Specialists gave their point of view. Nurses talked logistics. Matilda slept. Tyler was the best at taking it all in, digesting every number, every fact. I digested the looks on people's faces when their glance would meet Matilda. I studied their deep breaths and long sighs. I heard bits of the conversations float in and out of my ears. I heard that Matilda would remain on the ventilator indefinitely. That she could have internal bleeding. That she needed a donor liver now. That there might not be anything more they could do.

All was quiet. At least that was how it seemed. There was a storm rocking the city - changing lives in its wake. But I was here, with Matilda, holding her hand, and dreaming of days long gone.

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