October 4th, 2012 - part 1
October 4th was such an eventful day. Medically, it was the day Matilda was diagnosed. It was also the first time Matilda went to the operating room and was put under anesthesia. Emotionally, this day was off the charts. And then something happened that changed me.
I woke that morning with butterflies in my stomach and asked to hold Matilda first thing. During rounds it was decided that Matilda needed to have a PICC line placed (a long-term IV). I agreed with the decision but was terrified that she would not recover from the anesthesia. She was so weak, so tiny, so sick.
I was scared and my natural response was to post this on Facebook: Wide-eyed little Matilda this morning. Okay, deep breath. Today at around 3p NY time, Matilda will undergo a procedure that will require her to be under anesthesia. We need prayers of hope and strength that she will react positively to that and wake up as expected when the procedure is over. The procedure itself is for a PICC line which is essentially a longer-term IV. This will allow easier access to her blood.
A little later I posted this: Okay. Another deep breath. We are down to two options diagnostically. Option 1 - neonatal hemochromatosis (still waiting on lip biopsy results). Option 2 - a mystery cause (probably an uncommon virus they didn't test for specifically). Neither option is better than the other. Both depend on her liver recovering. If her liver doesn't begin to recover, either option will require a transplant. At this point her liver is not improving appreciably. Deep breath.
I didn't want to put Matilda down knowing that she was once again going to be intubated. I just wanted time to stop so that I could have a moment to soak up the beautiful baby that lay so quietly in my arms. I remember closing my eyes so that I could better imagine us back at home, snuggled on the couch happy and carefree. And when my eyes opened the room was full - it was time to talk about a transplant.
This was our fifth day at Mount Sinai. We had been focusing so much of our energy on trying to figure out the why and how of Matilda's acute liver failure, but now it was time to talk about the what to do. I wish that there was a better way to approach parents. Legally the hospital needs to check off a list of topics that are not only discussed but understood by the parents. This means talking with surgeons and going over the survival rates and talking about the risks; talking with social workers about the emotional impact both before and after a transplant; talking with the liver specialists about exactly what kind of liver is needed and how they get it. It means talking about how the listing works, relative costs, insurance policies, medications, follow-up appointments and above all else - a lifelong commitment to the transplant team. Person after person came in and talked with us, checking off all of their necessary questions, writing down notes about our responses, filling out paperwork, and having us sign on the dotted line.
I remember the social worker asking me how I was feeling about the idea of a transplant and my response was, "I don't care how I feel right now, I just want Matilda to be okay." For me the worst moments were the long pauses and concerned stares. I felt like I was being judged. I guess I hated it because I didn't want it to be about me. What does a mother say really. I was fine under the circumstances, but my daughter's life was slipping away in the bassinet right next to me. That is not fine. I hated it when someone would ask how I was doing not necessarily out of concern, but out of procedure and protocol. The worst was when they would ask the question but then glaze over during my response or check their phone. It just felt like a waste of time. But it was nessessary and I understand that. I just wish there was a better way.
And right on cue - when I felt my lowest, most overwhelmed, and on the verge of a panic attack - in walked our team of doctors with the test results. A diagnosis was in hand.
