the waiting game

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 24th, 2012 - the waiting game

It had been 27 days since we rushed Matilda to the hospital at 8-days-old, thinking she was dehydrated. There was shock at first, then an abundance of love and support from family and friends, the diagnosis along with treatment, but, now, we were entering a new phase.

Tyler had gotten into a routine, which I think made him feel a bit more secure. The nurses and doctors loved his playful banter and charming whit. He had won everyone over.

Nothing happened on this day.

Matilda slept in my arms. One by one, each of the doctors came in to take a peek at Matilda, and each of them responded with the same words. First the resident, "There is nothing new happening today, basically, we are just waiting for a liver." Then the attending, "She looks good in your arms, peaceful. We're just waiting for a liver at this point." The resident to the neurological team, "Just waiting for a liver" - he added a sad nod before leaving the room.

Lunch came, but I didn't feel like eating. Matilda was perfect in my arms. She could wait in my arms forever if they would allow it. Everyday was a mental struggle. Everyday I had to convince myself to look at the bright side of things. Everyday I cried.

The transplant surgeon stopped by. He took a look at all of her access points (keeping track in his head which veins were still usable and which had been used up). He asked if we had a current weight - she was 7 lbs, but some of that was fluid retention. "Okay, so we just wait," he said. The social worker came in, we talked about insurance. Ours was only going to cover 80%, which sounds good, but not when millions are involved. This was Tyler's first job out of grad school. We had no money saved up because my teaching salary supported us while Tyler was in school. She put her hand on my knee and said, "Waiting is the worst part." I guess I had had enough of hearing that, and gave a snarky reply, "I can wait, as long as I know she gets a liver. Dying is worse than waiting."

I embarrassed Tyler, but I didn't care. I was mad at him for acting so cool and calm all the time. It was hard to keep up with. So I gave Matilda to him and took a nap. But sleeping did me no good because all I heard echoing in my mind over and over and over was, "So we wait for a liver." And, in fact, I woke up to the liver specialist saying just that.

The waiting was hard. It was heavy. But what was worse was the lack of hope - that her liver could not recover with the support of transfusions and IVIG. I guess that game was over. Clearly, we were on to the waiting game.

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