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 29th, 2012 - a dormant night
The night of the storm sits dormant in my mind. I fell asleep staring at Matilda repeating memorized prayers over and over. I woke up several times in the night. Each time I felt dizzy and confused. Each time I asked about Matilda. Each time I repeated prayers until I fell asleep. It felt like Groundhog Day. I have always hated that movie, and this time the ending only made things worse.
The wind was loud, but Matilda's beeping monitors rang louder. Two doctors stood, worried looks plastered on their faces, whispering numbers, discussing options.
"Is she okay? What is going on?"
"Shh, go back to sleep. She is fine."
"Our Father who art in heaven..."
Our nurse shot across the room with medicine in hand, calling for verification as she plunged blood pressure medication into Matilda's IV.
"Was that scheduled?"
"No, hold on... She is fine."
"Hail Mary, full of grace, the Lord is with thee..."
The respiratory tech empties water from her breathing tube, adjusts numbers, and calls for a doctor, they stand just outside the room.
"Our Father who art in heaven..."
Matilda moved, her tired and sedated body moved and wiggled in pain. I stood next her. Called in the nurse.
"What is going on? What has been happening? Is Matilda okay?"
"No, but they don't know what to do at this point."
"Have the NYU patients arrived?"
"Yes, they are down the hall and in the PACU. We told them they couldn't come here. There is just not room and sharing under these circumstances is not an option. You should try and sleep. I will wake you if she needs you."
I held Matilda's hand for as long as I could. The clock in our room didn't work and my phone had run out of battery. Time didn't matter. Nothing mattered. Everything mattered. Time was all we had. Thoughts looped in and around my mind.
I felt so lost and so confused, yet completely calm and reassured all at once. This was one of those moments where I could feel our friends and family thinking and praying for us. Matilda calmed down and fell back asleep. I kissed her head and went to sleep.
Our day nurse had spent the night in the hospital to avoid the storm and ensure staff for the following day. As I woke, both our night nurse and day nurse were sitting in the room. Both stunned, both looking weary. One handed me coffee, the other told me to wake Tyler.
We sat holding hands, listening to details of the night - of one issue after the next, of medications, of alarms, and of the worst news possible. Matilda had a fever. In the world of transplants, fever is a killer. Until the cause was found, until the fever was under control, Matilda was off the list. Her chance at life was put on hold.
Tears ran down my face, but I did not waver. I did not fear. We would ride out this storm together. We would be fine. Matilda would be fine. Tears ran down my face, but Matilda was beautiful.