October 5th, 2012 - part 1
So much had happened the day before. Tyler and I slept snuggled tightly in the fold out chair. We used to accuse each other of bed hogging at home, but here in this little chair, there was no complaining. We were exhausted and thankful to be with each other.
I woke up with butterflies. The team was already prepping for the long day ahead. Prepping, however, and getting started are two completely different things. I was stuck, frozen standing next to Matilda. Two weeks earlier, I woke up excited with her safe in my belly ready to be born. Two weeks earlier, I laughed in the delivery room, surprised that I was so far along and had experienced only mild pain. Two weeks earlier Matilda was plopped onto my chest, perfect and wide-eyed. I kept wondering how we got to this place. And I was so hopeful that this double exchange transfusion would bring us back to where we once were.
I posted this on Facebook:
It is such an important day! Two weeks ago, I had my beautiful baby Matilda. Today she will receive a double exchange blood transfusion which will hopefully save her liver and subsequently her life. May today be full of prayers and miracles!And a few hours later this:
They have not started yet. This is such a rare case and this method of treatment for neonatal hemochromatosis is so new (2009) that it has only been performed around 50 times in the world ever. And it sounds like this hospital has only performed it a couple of times. They are meeting and discussing exactly how things will go down today.Finally around noon, I posted this:
The transfusion is underway. She is under the watch of about ten doctors. They decided that they will take a break whenever a spot for an MRI is free. So she will be having procedures at least until 10pm tonight.The doctors spent the entire morning discussing and planning. Since Matilda had a double lumen port (an IV with two access points) they wanted to make sure that they were not taking out the blood that was just put in, but instead were removing her original blood while replenishing with new. And since Tyler has a PhD in hydrology, he knows a bit about fluid mechanics and was especially interested. At first he tried to bite his tongue, but all bets were off when a simple math error was made. Tyler corrected the doctor in charge and was quickly assaulted with a nasty look. Thankfully Tyler's reply of "It's okay, I am a doctor too" was met with laughter. Next thing I know, Tyler is calculating math equations and conducting in-depth discussions about the assumptions of the double volume exchange and their appropriateness right along with all the scrubs.
I had nothing to discuss. All I could do was hold Matilda's hand and pray. Then all of a sudden the conversation took a turn. One of the nurses asked me what Matilda's name meant. In that instant, it all came rushing back to me. I remembered sitting on the couch with Parker on my lap looking up the meaning of Matilda just after we found out that we were having a girl and had announced her name to friends and family. It means "mighty in battle". At the time I thought it was dumb and even said out loud "we better get her some armor before she is born", in a very sarcastic tone.
And, now, here I was holding the hand of a warrior, mighty in battle. A two week old should never be asked to fight for her life. A two week old should be snuggled tight in her mother's arms - peaceful and plump. But it was my two week old who was asked and if anyone can hold their own it is my Mighty Matilda.