We were blessed, at Delivery Hospital, with an excellent NICU and a wonderful set of doctors and nurses. One doctor we didn't have too much contact with, but he had a rather humorous story of lying down on his side arm extended into the tube, hand-operating the bag respirator while Maddy was lying in the MRI, and having his arm fall asleep. There was the lovely doctor, who worked nights, and unfortunately for him was on when Maddy seized early in the morning on Valentine's Day. He's the one with whom I conversed, and realized, that my daughter was in fact going to die. At the end of that conversation, which was spent with him in a chair pulled up next to my bed, and me in my bed, barely covered with a hospital gown, looking like hell, he said "I'd really like to give you a hug if that's ok." And of course it was.
And then there was Dr. R. Dr. R (not his real last initial), we found out after a bit of time in the NICU, was the senior person in charge, and as such had the luxury of working days. We also found out, that he rather took charge of Maddy's case, stayed late if needed, and rushed in early if something went wrong, like on Valentine's morning. He was everything you'd expect in a storybook pediatrician -- a warm, gentle, affable man in both manner and appearance. He always looked a bit frumpy, in that endearing way that immediately put you at ease and made you want to reach out and straighten out his tie or pat down that errant piece of hair. He spoke directly, but kindly. And he became our rock, our priest, our guru, and our hero.
Day three was spent, in large part, conferring with Dr. R. By now, with the heart and blood pressure problems evident in addition to the brain and eyes, it was clear to everyone that Maddy suffered from more than a virus -- this was in all likelihood, something genetic. It was also becoming painfully clear, the realization settling in, that she would die, and probably soon. And Dr. R spent Thursday, gently telling us that Delivery Hospital did not have the means of figuring out what was or went wrong with Maddy. We were loathe to fix individual problems (her eyes, her heart) without a more comprehensive picture of all of her maladies and the overall prognosis, and he, perhaps a bit remorsefully, told us he could not provide us with that. But Children's might. He called his old mentor at children's and explained the case in person. They were willing to care of Maddy. If we were willing to let her go.
The problem now was that we had gotten used to this NICU, with it's personable nurses, and friendly doctors, and we were comfortable here. We had our chairs, our place for books, Maddy's decked out isolette, and I was rather fond of their ice and water machine. And we knew, without question, that when it was time for Maddy to go, this set of doctors and nurses knew and understood us and would let us make these decisions without pressure. Children's (completely irrationally) appeared a cold, sterile place with it's promises of experimental drugs and surgery and what if (!) they wanted to try and extend her life? What if they told us upon her arrival that what these doctors called terminal wasn't really? Would they take her quality of life into consideration, or would they be bound by the Hippocratic oath and the grant money to try try try anything? Did we even want to know what happened? What would that entail for Maddy? Would she simply become some Frankenstein-ian experiment into the neonatal unknown? We spent hours speaking with Dr. R trying desperately to understand where the Rabbit Hole might possibly lead. Mr. ABF spent his afternoon in deep discussion with Dr. R and wound up sobbing on his shoulder. I, at home by now, spent the afternoon on the phone: in-laws of in-laws who worked at Children's; former-pathologist-now-senior-drug- company-exec friend of a relative en route to Japan, who talked me through terminology and procedure, and gave me his personal cell number telling me he would pick it up no matter what was going on with him. Could anything be done? What did this move mean?
We decided, by the time we fell asleep, that we would wake up early in the morning, drive in to Dr. R., and tell him that we were ready to move her. With a big caveat: if we felt uncomfortable at Children's, could we move her back here to die? Yes, yes, a thousand times yes was his answer.
To skip ahead, the next day, Dr. R immediately got on the phone and set up transport. When the transport team arrived, he gave a verbal assessment of Maddy's brief and extraordinary history to the transport doctor. I listened in silence, so impressed with this man and his medical ability. And then at the end of this litany, he said "and finally, I'd like to tell you about the parents." He told them of our wishes for her, her continuing comfort, and our wishes for a dignified end to her life. (When we got to Children's, every conversation with a new Doctor started with, "So, I understand that you feel very strongly about Maddy's quality of life," and I know this was all in thanks to Dr. R.)
I hugged Dr. R when we left the NICU for the last time, sobbing. He remained in touch with Children's, was notified at home when Maddy died, and called us the following week. Day three was more than just the mire of medical terminology, it was deeply philosophical, and Dr. R guided us through, holding us by the hand, never wavering, with a rather dated tie.
By this point we had named Maddy. It took us a few days; we had expected a boy actually, and had to chose between our two girl finalists, and, well, we had some other pressing issues to think about. A number of people scrunched their faces at her name, asked aloud as to why there were two d's, not really fully getting that it was the Italian version of Madeline. On Day three, an older pediatric heart specialist came in to do an ultrasound of Maddy's chest. He looked at her name, turned to me, and said, "Italian?" I nodded, explaining Mr. ABF's lineage. He said that at some point in his Navy career he was stationed in the Maddalena Islands off the coast of Italy. He thought the name was beautiful.
Funny what you remember.