November 1st, 2012 - nosebleed
We spent the night watching over Matilda. Bringing her cool rags, singing her lullabies, reading her stories, and praying. Praying that she was comfortable. Praying that we could accept any outcome. Praying for perfect timing. Matilda held her own. She made it through another night and everything seemed to be looking up.
During rounds we overhead the discussion, nothing was ever determined, but they were talking about putting Matilda back on the list. We played it cool, but inside I was elated. She did it, she came back from the edge of her timeline. She came back from the brink of death, and she did it wearing a homemade Halloween costume to boot.
And then it happened, just as something always did. During a routine suctioning of the mucous that collected in the back of Matilda's throat and nose, she started to bleed. I personally have never had a nosebleed, and the thought of them has always made me extremely queasy. More than once while I was teaching, I had to cover my eyes while students tended to their own noses. But here I was holding my hand under her tiny nose catching as much as I could.
But it didn't stop. It wouldn't stop.
The team was called back and everyone looked at her with worry and headache. They explained that there was nothing they could do. Her liver was in charge of clotting and it clearly was not capable of doing much of anything at this point. More blood was ordered and the plan was to give her extra to replace what was being lost.
I knew that this meant the end was even closer. But I could not let go of hope, I would not let go of it. I was leaving to go pump and pray in the quiet of the NICU. And as I walked past the front desk of the PICU I overheard a phone conversation. It sounded like a basic medical report being given of Matilda (her current weight, her age, her length). It was only a hunch, but I walked straight back to our room and told Tyler to get ready - Matilda was going to be offered a liver.
My hopes were up, my spirits were high, and nothing but death was going to convince me I was wrong.
