october 3rd, 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 3rd, 2012 - part 2

Maybe it was the shower and clean clothes or letting go and allowing myself to cry, but a weight had been lifted as I walked back through the maternity ward, down the elevator, and back to the PICU. I needed to see all the beautiful and healthy babies lined up and swaddled tight. I needed to see them so that I could cry. So that I could remember that I too had just given birth. I needed to remember to let go a little and allow myself the chance to grieve.

When I rounded the corner and saw a group of doctors standing around Matilda, my heart sank. My heart always sank when I came back to people in the room, even on Matilda's healthiest days. I remember everyone turning and almost as if it was rehearsed - faces lit up and compliments started flying in my direction. I gave an awkward curtsy and some lame joke about how clean clothes and a shower can make a woman whole again. Embarrassing.

The best part was that everyone was smiling, the air felt light. I lightheartedly complained about the shower. And as I was doing so, I was thankful that it was cold and nasty. I was thankful that I was able to tell a funny story. At the time I was crying and feeling sorry for myself, but now I was entertaining doctors in my "living room". It felt nice.

It was a good day. I posted the following on Facebook throughout the afternoon and into the evening:
  • The team is waiting on results and making decisions. Drawing blood continuously for such a small baby is difficult and her IVs keep falling out so they are talking about how to move forward since they could not get a central line in and even IV placement can take several attempts. So while we wait we decided to come up with our own mini goal for the day to drink from a bottle instead of the tube. First step: practice sucking on a pacifier. Check. Only took an hour and we covered it with sugar, but she eventually remembered how!
  • Yay! Her umbilical cord stump fell off last night too. The latest test results: not a bacterial infection, not a herpes viral infection. Lots more tests still pending.
  • We just went over the day's general lab results with the night doctor. The last time he saw Matilda was the night we arrived. He was very pleased to see how well she is doing. She is still in critical condition with acute liver failure, so we will continue to pray for more good news in the days to come.
  • Also, have I mentioned Matilda's room overlooks Central Park?
  • Matilda wants to thank everyone for all the prayers and support we have been given. We are so overwhelmed and cannot bear this burden alone.

That evening as we were standing with Matilda, she woke up. She seemed alert and excited to see us. Then the best thing happened. She smiled. And she kept smiling for quite some time. We of course called everyone over to see. We were so in love with Matilda and as we stood there my heart bubbled with pride. It became clear that Matilda was capturing the hearts of everyone, and she was not about to let go.

read october 3rd, 2012 (part 1) - or - catch-up on all the previous therapy thursdays

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