October 3rd, 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 3rd, 2012 - part 1

I can remember waking up on October 3rd feeling really exhausted. We were up most of the night with Matilda. The medicine they were giving her to bring down her ammonia level was working, but it was also bringing a picture of reality closer to the surface. Matilda was uncomfortable. She would tighten her back and arch a little. She would moan and let out little cries. I felt so helpless.

Justine, one of the resident doctors in the PICU at the time, puts it very well:
I am always struck by the strength of the parents that I meet in the hospital. I cannot imagine how difficult it must be to have a sick child and worse, to have a sick child in the ICU. The scary thing, I imagine, aside from the dangers of whatever illness is plaguing your baby, is that as soon as you enter the hospital you are, in many ways, stripped of your title as sole caregiver to your child. You bring her in and we tell you that you're not allowed to feed her, your own baby. You are not allowed, anymore, to do the only job that you were put on this earth to do. You and Tyler were so full of grace right from the start.
That night I wanted to scoop Matilda into my arms. I wanted to bounce her gently from side to side. I wanted to pat her little backside and swaddle her tight.  Instead I had to resort to standing beside her, holding her hand, and singing lullabies. It did not feel like it was enough. In the morning I posted this on Facebook:
Last night was rough. Matilda is becoming more aware and uncomfortable. We heard her cry last night for the first time since last Thursday. I know it is good, she should be upset, but it was so hard to see her wiggling, moaning, and crying last night. We are trying to brace ourselves for a long day.
The morning seemed to drag on forever. But I was thankful that they were letting me hold Matilda. Nobody wanted to say anything because everything relied on pending tests giving more information. I felt itchy. Itchy for information. Itchy to talk with the experts. And Itchy because I had not showered or changed my clothes in five days.

Thankfully, I was blessed with thoughtful family members who ordered me new clothes that arrived at the hospital that afternoon. The PICU was being renovated during our stay, so we did not have our own room let alone our own bathroom or shower.

The nurses pointed me in the right direction for a "parents shower" in a different part of the hospital. It was then that I found myself walking through the maternity ward. It was bright and beautiful. There were pictures of newborns hung on the walls. Proud mothers were walking the halls and I was reminded that only a week earlier that was me.

I stopped in front of the nursery. The big windows invited me to stare at the rows and rows of babies. Some were crying, some were sleeping, but they were all healthy and beautiful. I wanted to sit down in the hall right there. I wanted my baby to be in that room. I am not sure how long I stood there, but I got a suspicious look from a nurse and so off I scampered down the hall trying to collect myself.

I found my way to the front desk and explained that my daughter was in the PICU and I needed to shower. I followed a man down the hallway and into a mini cul-de-sac of doors. He opened one and started taking out equipment and carts full of supplies. When he was done emptying the room he signaled for me to enter. There was a tub, in a closet. No sink, no mirror, no toilet. Just a tub.

As soon as I closed the door behind me, I began to cry. Really cry, the kind of crying I only do when I am alone. I turned on the shower and waited for the water to warm up. After a few moments more of sobbing, the water was still cold. I got in. To top it off, it did not take me long to realize that the tub was not draining. I was standing in nasty water. It looked like a bucket of mop water was dumped in around me. Old, cold, germ-filled, hospital water. I pulled myself together and finished as quickly as possible.

When I got back to the PICU a group of doctors were standing around talking to Tyler. My heart began to race.

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