nyc (september 30th, 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.

September 30th, 2012 - nyc, part 2

Lisa was our nurse that night. Of that night I remember very little of our interaction. But over our time at Sinai, she quickly became one of our favorites. Lisa is quiet, but very effective in what she does. She is the kind of person that just radiates goodness. She is one of the nicest people I have ever known. This is what Lisa remembers of the night:
"When I walked into work I remembered seeing an ambulance bringing a baby into the hospital. I thought she would be going to the NICU because she was in an isolette. Little did I know that she would be my patient! I went up to Kelly to introduce myself and do my initial assessment of Matilda. I had to get an impression of her baseline vital signs, eye movements, pulses, and her cry. When assessing a baby I try to not wake them up but usually you do. That's because you're feeling, poking, opening their eyes to check their pupils and so on. As evasive as this can be I remember Matilda not crying much, if at all, which was odd. I remember giving her to Kelly to hold while I got everything ready to head down with Matilda to CT scan."
When we got back to the PICU, a new face was was standing before me and I knew immediately that it was the attending, Dr. Yung. The attending that had gone home. I took a deep breath. He introduced himself as Steve and putting his arm behind me, lead me to a different room. He sat me down. He was very calm, very genuine, very concerned. He explained to me that they had found swelling in Matilda's brain. I knew right away what that meant, brain damage. He explained that because her liver was not functioning and that the liver is in charge of clotting, that swelling can easily become fatal if there is the slightest rupture. In order to keep Matilda safe he wanted to temporarily paralyze her, intubate her, and place a central line. He explained the risks involved in all of these steps, but also made it clear that not taking action now would be the risker choice.

I gave consent. I could not stop the tears. I asked if he thought I would ever be able to bring my baby home - to have a normal life with her. He looked sad, he said he hoped so. I was sent down the hall to wait until the procedures were over. I posted an update on Facebook: "CT scan showed swelling in her brain. They are sedating her, putting in a breathing tube, and putting a central line in her leg." I called Tyler. I remember explaining everything, asking repeatedly about how Parker was doing, and telling him that no matter what we needed to stick together. Things were going to get more difficult than we could have ever imagined, and we need to stick together. That I knew for sure.

Matilda was a mess when I got back to the room. Her breathing tube was in, but they could not get the central line placed. I remember seeing blood on her diaper. She was so small and her reduced ability to clot made things more difficult. Lisa recalls:
"After the CT, the attending came in to intubate and try to place a central line. Once the tube was in and Matilda was stabilized, I tried to ease Kelly's mind but could tell by her face that she was getting overloaded by the amount of information. I showed her how the ventilator alarms go off from time to time and what the sound meant. How I might have to suction Matilda's tube and what that was going to look like. Basically, I just wanted her to know that I was there for her."

I spent a quiet moment with Matilda before the liver fellow came in to speak with me. She explained everything that was going on. I posted this on Facebook: "Just spoke with the specialists. Matilda has acute liver failure and is in critical condition. They are considering metabolic disorders as well as viral. We will know more tomorrow with test results." Then the social worker came in to meet with me.

I know now how bleak things were looking. It was a Sunday night. Everyone was called in fearing the worst and trying to do their best. I was sad, and terrified, but I remember feeling safe and taken care of. Adds Lisa:
"I brought Kelly a breast pump and some linens for the sleeper chair, as she had come to the hospital with nothing but the clothes on her back. More doctors came in to talk to Kelly and after each one gave her some new information she just looked more in shock. I was so glad that Kelly had gotten the chance to hold Matilda for a little while prior to all this madness."
There were a handful of nurses (Lisa among them) that I would look forward to seeing each night. It was in those moments, talking among friends, that I felt the most comfortable. Comfortable that they would take care of Matilda, and comforted by the fact that if things took a turn for the worst, I would have friends there with me. Friends that knew and loved Matilda. Friends that could tease me for never wearing "real" clothes, friends that complimented my hair even when I was unable to shower for days, friends that told me it was not cool to pump without shutting the curtain, and friends that kept me laughing.
"I only took care of Matilda that first night. I think I was away for quite a few days after, but often thought about her. I stayed in contact with Kelly and was happy to see Matilda's progression. Seeing how much better she did after her surgery it's hard to imagine her as the same baby I took care of. Matilda is one of those patients that gives you hope for others and helps get you through the tougher days."
Is it weird that I consider Matilda's nurses to be my friends? It probably is, but I needed to make the best of my situation; I needed friends.

That night I felt more sadness than I knew existed. I kept looking at my newborn baby wondering how this all happened. She was perfect, I had just given birth days before and she was beautiful. My body ached with sadness, my tears were endless, and prayers had no words. When I woke the next morning, Tyler was sitting in the room.

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