nyc (october 1st, 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 1st, 2012 - nyc, part 1

I was exausted and fell asleep just a few feet away from Matilda with her blanket bundled in my arms - I remember being so excited to buy beautiful things right after we found out we were having a girl. I had been visiting my best friend Mel in Denver when I bought it. It was the blanket that I had tucked around her after she was born. It was the blanket that rode with her in both ambulance rides. And now it was the blanket that was wet with my tears.

I fell asleep and when I woke Tyler was sitting next to me. It was slightly before 7am, so with shift changes everything seemed busy and buzzing. Right away people started coming into the room to introduce themselves. Justine (the doctor covering the PICU that night) stopped by long enough to breathe a sigh of relief, "I remember the next morning, quite clearly (albeit through my delirium after 27 hours awake), the relief I felt when I found out that she hadn't herniated."

Now that Tyler was with me, I felt like I could breathe a little and focus more on family matters. We needed to figure out what was going to happen with Parker. When the social workers started filing in that morning, I remember asking for help in acclimating him. I wanted to have a discussion about how all of this would affect him. I also asked if they could help us with lodging since hotels in the area (with the hospital discount) were $300+ a night. I took in what they had to say. I imagine that they might have been concerned about me; wondering why I was so concerned about my healthy child while my newborn was on life support behind me. Or maybe it is a common, natural instinct to protect the strong child. The truth is, I am not a good multi-tasker and I knew that I would not be able to take proper care of Parker's whole self if he remained with us. It did not take us long to realize that it would be more cost effective to buy Parker a plane ticket home to Montana than to house him in a hotel. And I knew for certain that being here and witnessing our sadness and confusion would not benefit him. So the decision was made. I posted this on Facebook:
We have not heard anything new regarding Matilda. She still has acute liver failure and is in critical condition. We have come up with a plan for Parker. He and my mom are heading to Montana tomorrow. After speaking with a social worker I realized that I wanted Parker to be with me for selfish reasons. The best place for him is away from this situation, with family, sticking to his normal routine. It was hard to say goodbye, I will miss my little buddy so much, but I know he will be in good hands."

Parker and my mom came to the hospital to spend the day with us, and even that was a challenge. They really spent the whole day in a room down the hall while tests were being done on Matilda. I tried to hug Parker as much as I could that day, but he was a typical 2 1/2 year old and wanted to explore. He was excited to go back to Montana.

My phone kept ringing with a NY number. Over and over it rang. So I answered and it was a man yelling at me that our food was here and downstairs. Tyler left and came back with bags full of food. My best friend from college, Erin and a girl I grew up with but hadn't talked to in years, set up a food train overnight. They had posted this to my Facebook wall:
"Hey EVERYONE!! My amazing friend Kelly Smith and her husband Tyler Smith are enduring a struggling adventure at Kravis Children's Hospital at Mount Sinai in NYC with their 1 week old baby girl Matilda. Wanting to help in anyway we could, Sara and I thought we could send them meals. Sara set up an account at this amazing site where we can all pick a date and send a meal from local restaurants near the hospital. This will help them so much with cost of food and not having to only eat hospital food as well. If you would like to help just click on the link and it will bring you to the "Meal Train" page. Then order some meals for them. They are on the 4th Floor/PICU and their food will be delivered to them on the picked date. Thank you so much for keeping them in your prayers and helping."

We sat and ate and for a moment it was quiet. It was nice to just sit and eat as a family knowing that we might not be together again. I opened up Facebook and started reading all the messages posted to my wall from people I had not talked with in forever. I was blown away. I started to cry, but this time out of happiness. This was the moment that things began to turn for me. I felt comforted. I felt loved by so many. And I felt like this was my journey to face head on. I could not wither away in the corner. I needed to celebrate what I did have. Our nurse placed Matilda in my arms, and finding her blanket she covered her with it.  So right then, I had everything. I had food in my body, I had my mom by my side willing to do anything for me, and I had my family in my arms. I felt thankful.

share sheet