october 20th, 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 20th, 2012

I woke up with bad news. Matilda was experiencing hepatic encephalopathy because her liver was not well enough to clean her blood of everyday toxins. Her ammonia level was climbing fast. Normal is 15, she was at 265. The doctors gathered around and began listing off all of the problems that had stacked up over the weekend. Her sugars were all over the place, her liver numbers were not improving, she was throwing up constantly, and she needed a new IV placed in addition to her broviac. They listed her stats - Matilda Smith, female with acute liver failure, thirty days old.

Thirty days old. I fumbled to check my phone for a date. It was October 20th, 2012. My baby was going to turn one month old tomorrow.

The doctors continued to problem solve and debate the best methods of treatment. About whether or not they should risk wasting an access point if an IV placement failed. They wanted to keep as many access points available in case a liver came. I only half heard what they were saying.

My baby was going to turn one month old tomorrow.

When Parker was one month old, we were living in Australia. I set up a photo shoot in our little apartment and took pictures of his skinny and squirmy little body trying so hard to lift and move off the blanket. We went for a walk and celebrated by getting coffee and cupcakes.

Matilda hadn't woken up yet. The high ammonia levels made her sleepy and lethargic. I excused myself from the hospital. I stood on the street staring at Central Park. I found a bench. And I cried. Everything caught up with me all at once. Everything was wrapped in those words, "Matilda Smith, female with acute liver failure, thirty days old."

My baby was going to turn one month old tomorrow.

My phone buzzed. Someone sent me this video. I watched it and continued to cry. The parents in the video lost their son after three days. They held him in their arms, they celebrated his life, they loved him. And now they were doing good work to change the outcome for others.

My baby is going to turn one month old tomorrow.

I wiped off my tears and walked to the coffee shop. It was nearly empty, so I stepped right up to the counter. I still had my PICU visitor badge on and my face was red with tears. The barista knew my order. He asked how my day was going and I told him that my baby girl is turning one month tomorrow. He said, "Congratulations, I bet she is beautiful." I told him that she was the most beautiful baby I had ever seen. And then he priced my grande as a tall.

When I got back to the hospital one of the residents who we had been working with for the last two weeks said her goodbyes. Leslie was energetic and excited about her field. She was always the first to come say hello and the last to say goodbye. Her wedding was in a week. She would no longer be in charge of Matilda's case. She thanked us for being such good parents. She told us that she admired our commitment to one another. That our strength and courage through all of this was astonishing. She had never seen parents who remained so kind, calm, loving, and committed to each other and to their child. We exchanged email addresses, and before leaving she offered to come and sit with Matilda after her return so that we could have some time away together.

Her love for Matilda was obvious. Tears were filling in her eyes as she kissed Matilda on the forehead before wispering, "Be strong Tildy, you have good parents who love you and, by the way, happy one month!"

This was not how I expected my life to be. But it was my life and I was beginning to see how beautiful it was.

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