nyc (october 1st, 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.

October 1st, 2012 - nyc, part 2

This was our first full day in the Mount Sinai PICU. The first day of beeping. The first day of doctors coming in and out. The first day different groups of specialists would line up waiting to take a look at Matilda. I did not know what the day was going to hold, but I did know that I needed some peace. I asked that a priest come to bless Matilda.

Father Isaac was so kind. He was very soft spoken and he had a thick accent. He sat with us. Doctors coming in and out, our nurse hooking up equipment and giving blood products, specialists introducing themselves. He was patient. I let go a little. I had been holding myself together so tightly, but when I aksed if he would bless Matilda with the sacrament of the sick, I let go. I was asking that my baby, my 10 day old newborn receive her first and last sacrament. I could hardly get the words to escape my mouth. He looked at me, took my hand, and said, "No. It is not her time, she still has hope." He continued to tell me to look around. To open my eyes to everyone working so hard to save Matilda. So in the midst of everything that was rushing around us, we prayed. And while we were praying over Matilda, she opened her eyes. She looked right at us as if to say, "I am here, don't give up on me."

A couple of ultrasound techs came in to look at Matilda's brain. They explained that it is really "cool" when the fontanel is open because you can see right into the brain. Then they went about doing all the checks. They were quiet until they made a phone call. Then they said that the head radiologist was going to come and take a look herself. While we waited, I posted this on Facebook: "Getting an ultrasound on her abdominal area and head. Her newborn metabolic screen came back negative. So they have added infectious disease specialists to the team."

We were already getting a feel for the different teams. We liked the metabolic team. They were really kind and took the time to explain everything. The good doctors sit for a moment after they are done talking to let you process before asking if you have any questions. Sometimes it is just nice when they sit and let everything be still. The infectious disease team never sat well with me. The head guy always introduced himself, but never looked at us. After about the 30th day at the hospital I just wanted to laugh at him and say "Yes, I know who you are, we see you everyday!" But I am sure he is a nice man, just trying to do his job and get kids well. I was annoyed because his residents kept asking me the same questions but in different ways, as if to trick me into telling the truth. I was patient and kind. I wanted everyone to get the information that they needed. I wanted them to know every little detail about my pregnancy, labor, delivery, and time at home. I did not mind telling the story over and over so that everyone could work together to figure out what happened and how to make it right again. But I was also overwhelmed. I just wanted to stop time. I wanted to hold my little baby. I kept thinking "I just had a baby 10 days ago." I was wearing some hand-me-down maternity leggings that were given to me by my sister-in-law (who wore them when she was pregnant with her first, 13 years ago), flip-flops, a tank top, and one of Tyler's sweatshirts. I remember feeling really hot but too embarrassed to take off the sweatshirt.

The head radiologist came to look at Matilda's brain herself and to everyone's surprise, she said that everything looked normal. I posted this on Facebook: "Thank you for all the prayers. The ultrasound they just finished of her brain looked normal. The swelling has subsided for now and there were no red flags. We are so grateful for all the love, prayers, and meals being sent our way. I have never experienced such heartbreak and pain."

Dr. Yung came in to talk to us. He was all smiles and the air was different. We even found ourselves joking about how glum our talk was the night before. Things were looking up. I was finding hope.

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