october 4th 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 4th, 2012 - part 2

Neonatal Hemochromatosis. I hate you.

The doctors came in excited with the news. The lip biopsy came back positive. Matilda had iron deposits in her glands which lead to the best guess of what caused Matilda's liver failure to be neonatal hemochromatosis. We were all happy. It was something. We all smiled.

I was not happy. I was mad that my body did this. I still am.

I posted this on Facebook:
UPDATE: It is looking like neonatal hemochromatosis (a very rare autoimmune disease). The treatment is to remove all her blood and replace with new. This happens 10ml at a time, every 10 minutes, for about 8 hours. Following this they give IVIG (intravenous immunoglobulins). Should see improvement within about two weeks. If not, then transplant is still the option.
As the doctors were explaining everything to me, I kept repeating to myself, "It's not your fault, don't think about it, don't blame yourself."

I was also trying to process the copious amount of information that was just explained to me about the transplant option and we were beginning to prepare Matilda for a procedure in the operating room. For the purpose of remaining calm, I pushed my anger from the diagnosis aside and chose to feel hopeful that the treatment plan would allow Matilda to avoid a very risky transplant.

I chose not to think about the past or the present. I kept my eye on the future that I would have with my daughter.

So there I was sitting next to my very sick Matilda who was now intubated and getting ready to leave for a procedure to place a line that would allow the exchange transfusion to happen. I was terrified that she would not return to my arms, I was trying to be strong, hopeful, and steady. Then something happened that changed me.

Tyler's sister Lindsay had an idea and turned to her best friend Courtney to set up a donation site in honor of Matilda. Lindsay wrote a beautiful explanation of the events that led up to that point and asked that people donate what they could to lighten our financial burden.

I was overwhelmed with thankfulness and relief. People were praying, sending us meals, and now donating money. Courtney made little badges as a gift for people who donated. They were encouraged to post the badges as their profile pictures on Facebook in support. Now when I opened Facebook, I saw "Love for Matilda" everywhere. I had a visual reminder of the community that was holding us up.

Lindsay put it so perfectly last night while we were texting:
On days that seemed bleak and scary, it was so nice to see this whole world of people trying to take care of you guys. I liked to just see all those people caring for you guys when you were so far away and I felt so powerless. I just remember standing, sitting, pacing in front of the computer refreshing Facebook, waiting for updates, and when it seemed like news was slow the donation site was the other thing I was refreshing constantly. It was so uplifting and comforting to read all the messages of love.
All of a sudden my present became this beautiful place, the past did not matter, and my world was literally filled with hope and love for Matilda.

My last post of the day was this:
She is back! They could not get a PICC line in because her veins are too small and the risk was too great. They did however successfully place a central line in her groin. They ran out of time to do the MRI so that will complicate tomorrow a bit (maybe).
The maybe at the end was an inside joke between the nurses and ourselves. Every time the doctors told us when something would happen or how something might work, the nurses always followed up with maybe. It does not take long to see that the world inside the hospital is fluid and nothing is ever guaranteed. But we were joking at the end of a very overwhelming and stressful day.

This day felt like it was a week long and took so much out of us, but everything that was taken was given back through the support of family, friends, and strangers. As the PICU grew quiet in the late hours, I stood next to Matilda and read out loud the words said in support and kindness. I did not hold back my tears and it felt good.

UPDATE: After the transplant we were informed by the doctors that her liver did not look like the damage was caused during the pregnancy but rather at some point after the birth. However, special stains of her liver tissue came back somewhat inconclusively - the test could have confirmed NH as the diagnosis if positive, but the ultimately negative result could not rule it out as a possibility.

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