Friday, February 15, 2008

Day Three, Reckoning

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.


Elizabeth said...

tears are streaming down my face right now. I just wanted to thank you for sharing the story of Maddy's life with us.

Which Box said...

Maddy is a very beautiful name for a very beautiful girl.

I know that when I write some of this stuff out, it helps. you are moving so people with your words and your ability to share. I really hope this is, in some small way, helping you too.

Amy said...

I am grateful you were blessed with Dr. R. What a wonderful man indeed.
I am crying reading what you are writing and knowing the outcome. I wish so very much you didn't have to be here in blogland but I am grateful you are. I can tell you find strength here. I hope someday I can too.
I am thinking of you and wanted you to know I lit a candle in memory of Maddy on her birthday and let it burn until it burned all evening.
My thoughts are with you always.

Waiting Amy said...

Tash this was written with such love. It made me teary (and I don't get teary). Dr. R sounds wonderful and a blessing (and your description brought him to life). I'm glad he was in all your lives.

Thinking of you.

sweetsalty kate said...

Your descriptions of Maddy's doctors ... they could have been Liam's. Frumpy and earnest, just about all of them. A little dishevelled, but so devoted to the magic and mystery and wild west of neonatology. And the ties... yes. Along with rumpled shirts with the sleeves rolled up.

Yes, it is funny, the things that stay with you.

It's just so hard, so hard to have to be there, though. Just no other way to put it. It is catastrophe.

But to read your words of your no-man's-land.. it helps so much. Reflection. Thinking of you, and your Mr., and your Maddy.

M said...

Beautiful words, thank you so much for sharing them with us.

The medical professionals that deal with grieving parents and sick children amaze me - they are so special, so wonderful and so very genuine. They truly made our experience much more bearable, and to see our doctors and their staff at our babies' funeral was just so unexpected, yet so comforting.

Sue said...

I can never read your posts without crying. I'm glad you had such wonderful people to help you during the worst time in your life.

Lisa b said...

I am so glad you had Dr R to help you in this unbearable situation.

People can be funny about names, though I am surprised at that reaction given what you were dealing with. For the record since the first time I read it here I have thought Maddalena was the most beautiful name.

charmedgirl said...

i really don't know what to say, as nothing i think to write seems good enough, fitting enough, relevant enough. how do we bear these things? i don't know.

i'm thinking of you.

Coggy said...

I have no words, I wish I had something more to say. I just wanted to say how much your writing about Maddy touches and amazes me.
I don't know how these things can become part of what is, but I guess they do. Seeing Maddy's short life in black and white is just too vast and painful to comprehend.
I'm sorry Tash x

kalakly said...

What you were able to do for your beautiful daughter in such a small space of time is truly awe inspiring. I can not imagine how you did it but know deep in my heart that you are an incredible parent and one hell of a mother.
I am so sorry that you lost your Maddy.

c. said...

I don't even know how you made it through those days. They must have been just horrific; I can't even imagine. Dr. R sounds nothing short of incredible.

Julia said...

This brought tears to my eyes. The grace with which you were able to do what you had to do for your daughter is overarching. I know it's no consolation, but it's also awe-inspiring. I hope one day the pain of those days lets go just enough to let you feel proud of the enormous parenting decisions you had to make in those days and the way in which you made them. It is beyond horrible that these are the only kinds of parenting decisions you got to make for Maddy. And yet, I can't imagine anyone doing it better. I am glad Dr.R was there for you in those days. It is both rare and as it should be.

Bon said...

this has me in tears, too, Tash...the love in it, the richness of remembering. there is so much to say in a story only six days long, all the love and heartbreak of a lifetime.

i didn't know that Maddelena was Italian, or that there were islands. i figured it was a version of Magdalene, as Madeleine is too...i am glad to learn. it's a lovely name. i didn't know you took a bit to name her. we did, too, with Finn. first name after we were finally able to see him, middle names only after he died.

thinking of you.

Katie said...

The name IS beautiful. As is your love for you and the way that you tell this story. Oh, how I want the end to be different. For you, for your husband, for your Maddy, and even for the lovely doctors. . .