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 30th, 2012 - infection

It all started to make sense. Matilda was fighting an infection. The last 48 hours we had seen our fairly stable Matilda face setback after setback. We went from hoping she would survive a transplant to hoping she would survive long enough to receive the offer of a transplant.

Once we knew it was a urinary track infection, everything fell into place. A few days ago, Matilda had a messy bowel movement, which usually meant getting a full sponge bath. But our nurse was called away and things were rushed, just a little bit. That evening when she finally got her sponge bath, the night nurse noted that deep in a fold, a little mess was left behind. It turns out that that little mess, turned into quite a big mess.

But the thing is, I never felt mad or angry that this happened. I think blame is pointless and only creates bitter people. Everyone did what they needed to do. Everyone was doing their best. And no one was to blame.

I was, however, angry that something as stupid as a UTI could take my baby away. I know that acute liver failure would be to blame, but we had been living with that. We had gotten to know that. But this newcomer, this UTI was the straw that was trying to break the camel's back.

I kept having these moments of panic as I thought about an offer coming through. And I appreciated the fact that we had no knowledge of such events. Because knowing we were that close, having a liver right there without being able to say yes, that would have been the straw that broke my back. That is why parents shouldn't be involved in everything. Because sometimes everything is too much to handle.

Being off the waiting list felt different. It felt hopeless. Because now we weren't waiting for a call, we were just waiting for time to pass. They kept telling us, "Matilda's health needs to improve to get her back on the list." I couldn't imagine how her health could improve without a functioning liver. From the beginning they had explained that there was a timeline of how long Matilda could survive while waiting for a transplant. Once Matilda was too sick for surgery, there would be nothing they could do.

So as they now explained that things needed to improve, all I could picture was this timeline. Matilda was now floating somewhere past the end. And all of a sudden, it was like I woke up from a dream. I looked around and saw the faces of everyone who cared about Matilda. I saw sadness, despair, and worry. We weren't waiting for a transplant. We were waiting for Matilda to die.

So I did something only a parent can do. I closed my eyes, imagined that timeline, and extended it just a bit. Because I was not ready to give up hope. I had faith. And I was still waiting for a liver to come. It had to work out.

I excused myself and went to sit alone in the pumping stations in the NICU. I had to sneak by a few reporters who were covering the NYU Hospital evacuation. And there I sat. Praying. I prayed for recovery. I prayed for perfect timing. I prayed for a miracle.

share sheet