Sunday, February 17, 2008

Day Five, Purgatory

Seeing as I only slept minutes in-between them, and the narrative rather carried over the nighttime, days five and six blurred together. But for the sake of story-telling, I'll try and find an end to this, and a beginning to that. Hell, I hadn't slept more than 10 hours all week anyway, so the whole thing was a bit muddled, punctuated by trips home, quick naps, and the big shift to another hospital.

The thing we noticed most about Children's wasn't so much the shiny! and the modern and the tv-set appearance not to mention the flat-screen monitors (say, can we pick up a game on these?), but the confidence. The doctors at Children's were alarmingly young; young enough that sometimes you spaced out on the important things they were telling you about your child's enlarged heart while you went on this mental train of "Jesus, you don't look older than 16, but let's say you're probably 26, which was about the time I thought I should "get serious" about starting my dissertation, and Oh. My. God. I'm old and haven't done anything with my life and here you are saving babies and going on about cardiovascular stuff and I could've been your babysitter . . . " And the confidence, oh the confidence. To say they strutted is not exaggeration. They exuded confidence. It poured forth in their clearly articulated explanations, their proposals for what to do next, their prognoses. We realized that when our Dr. Frumpy walked into the old NICU we wanted to brush off that crumb on his collar and hug him. Here when a doctor walked in, the spotlight turned on, the soundtrack swelled, and you awaited awestruck for them to enter your baby's space and kick some ass.

(Don't get me wrong, they were simply lovely and nice, too. Brilliant, attractive, confident, nice. I'd fucking hate them if they weren't looking after Maddy.)

It was, of course, sad, and terrifying, and alarming, still. And they put their water/ice machine outside of security (bad planning, folks). We were in the brand new wing of the NICU, and I believe Maddy was the first occupant of her, um, cave indentation (room is a bit of a stretch), forever cursing it I'm sure. I spent all day Saturday by her bed, reading, pumping, joking with the nurses about where to find things as they were all getting used to the set-up as well. Occasionally some statesmanly specialist would walk in, surrounded by eager, uber-confident, magazine-ready glamorous underlings with notebooks, ask a million questions, and examine Maddy. There were more ultrasounds, more blood draws. My dad sat with me for most of Saturday, occasionally talking to me or the nurses. He overheard a horrible conversation in the waiting room with a couple and one set of their parents about their sick child, and the grandparent was apparently in complete denial about their child's condition. "Well, I think they can just operate on these things and everything will be fine," he'd gruffly sputter into their disbelieving faces. My dad said he felt badly for the couple, and couldn't decide whether to interfere or not.

At some point during the day, one of the genetics people explained to me that they wanted to do a skin biopsy on Maddy. This way, they could "grow" her cells whenever they damn well felt like it, and have her DNA and more right there at the ready. I suppose it sounded a bit fantastic but it also sounded a bit painful. And when your baby is lying there already hooked up to a million things and some grad-student-looking type is asking for a piece of her leg, well, I said I had to think about it. I didn't want to advance someone's killer journal article (dude) on the health of my daughter. I needed to know what this entailed, what this would tell us, how valuable and timeless it really was.

Late afternoon I said my goodbyes to Maddy as Mr. ABF took over, and went home for dinner and Bella time. At some point, about the time Bella was probably running around naked refusing to get her pajamas on, Mr. ABF called. Maddy's blood pressure was tanking, her heart rate was skitterish, and people were a bit edgy. He told me to tell my father to pass on his nightcap in the event that he might have to drive me back to Children's, tonight. I put Bella to sleep, thankfully quickly, and Mr. ABF called me back and told me I should come in. Things weren't looking good.

Within 25 minutes or so was racing through a deserted, dark hospital to Maddy's bedside. When I turned the final corner only her area was lit, and there had to be 20 people in various degrees of activity and milling, and standing grimly with arms folded across their chests. "Maddy's mom," a bunch of them whispered as I walked into the bunch and saw my daughter, looking a bit swollen, and discolored, the numbers we were told should be over x, were far, far below on the readout. Things were blinking.

A ridiculously cute Doogie Howser doctor introduced himself as the resident on call (at which point I think I spit-laughed in his face and asked for ID), and explained that things were headed downhill rapidly. And here was the kicker: that skin biopsy? The one we were thinking of? Had to be done while her heart was beating, while she was alive. So: Should we plan on this? Call in the surgeon? Oh, and while you're figuring that one out, we need to know how active you want us to be in resuscitating her. Should things really head south.

Mr. ABF and I conferenced, decided fuck, we probably should have the surgeon around, but if she goes in the meantime, she goes. So we turned to Doogie and told him, in the half-assed way that only parents can: try, but don't go crazy. Try, use medicine, but just for a few minutes, not 45. Is that too half-assed? "Not at all, it's exactly what I needed to know." And he went to work like he did this a million times a day (and he probably did). And slowly, ever so slowly, Maddy pulled back from the brink. The numbers started ticking up. Doogie started waving off medications. The surgeon was told to forget it, for now. And she plateaued, in what for her, was a reasonably good place.

But. If she was on assistance before, she was really tricked out now. Her respirator had been replaced with this vibrating breathing thing that they apparently use for babies that kind of shook her. It was awful. You know, because you read the DON'T SHAKE YOUR BABY!! pamphlets, and here were the confident people explaining that no, it wasn't THAT much, and babies actually rather find it soothing. Cue "where to put the quarter" jokes and wondering if we couldn't similarly trick out our torturous chair/beds. She was on a lot (a lot) of meds. Her IV stand was full, and looked like a Christmas tree. After days of remembering everything she was on and exactly what it did, I consciously tuned it out and just accepted the fluids running into her small body. Doogie smiled and announced that she seemed out of the woods, and you could tell he was so happy and proud that it didn't happen on his watch. Mr. ABF and I took turns reading, sitting, talking, and trying to shut our eyes in our chairs. Apparently, around 4 a.m. or so, we both drifted off.


passingwindows said...

I'm so sorry for this anniversary. Just wanted to tell you that I was thinking of you.

I loved your description of the doctors. An anaethetist came to see me and I thought, "Has he even graduated from high school?" It was so easy saying no to what he wanted and insisting on what I wanted, I mean he was younger than my youngest sister.

These sound like such tough days. I'm glad you had your dad there. I'll light a candle for Maddy tonight, I'm catching up a bit late.

Julia said...

These days are so impossibly long, and so impossibly brief. Knowing what happens on day six makes this even more poignant, if that is even possible.

Overconfident, shiny residents? Yup, met some.

Amy said...

Just want you to know I am thinking of you all today.

kalakly said...

Reading Maddy's story, everytime she overcomes a hurdle, I can't help but feel relieved and hopeful that she will pull through, eventho I know what the end of her story here on earth is. I can not ever imagine how you functioned, how you made such enourmous decisions, how you were able to be the perfect parent for her.
Your writing of this unbelievably heartwrenching life story is just amazing.
I am thinking of you and your family and especially Maddy on these sad anniversary days.

Megan said...

I'm thinking about you - and thinking with every new blog entry how freaking strong you and Mr. ABF had to be.
I know if flies in the face of the official deadbabymama all-our-sorrow-is-equal stance but what you went through is the most harrowing week I can imagine,
I am so fucking sorry.

Coggy said...

I find myself thinking that a lot about 'professionals' these days. Policemen, teachers, doctors - they're all so young, but then I realize it's just because I'm getting old.

I can not imagine how hard those days were for you.
I'm so sorry Tash x

LAS said...

Your writing of this is just amazing. The story makes me cry. I know it must be so hard to tell this story. I'm still thinking of you.

Bon said...

purgatory indeed...or a living hell, looking back after you've had a chance to breathe and get some sleep. except, of course, the after is even worse.

this is so vivid, Tash...the young residents, all shiny, the strange saturation tune out when the brain can take no more. i remember the shaking stomach tanked with recognition when i read your description. i heard that thing in my sleep for months.

you are doing a beautiful job of writing this. i don't know if that matters, but in a way, it brings us all there, makes Maddy's life and legacy a part of each of us, too. i thank you, for sharing. for trusting.

sweetsalty kate said...

Someone once told me about the idea that souls travel in packs. That through lives and dimensions we're drawn to each other, that on some other plane we know each other.

And in efforts to be together again our souls sign up for this life, consciously. They sign up to be gestated and grown and born, even if sick and still, to have an impact on us as their parents - to bring us love, to have us know them, even for just a few days or weeks.

I don't know how this theory made me feel. I'm stil trying to figure it out. To think of all Maddy went through, all that Liam went through... to think their souls came through to us with this foresight, but came through to us anyway... it may be hokey, or contrived, or new-agey, but over the past seven months it's brought me a sort of vividness, a sort of pride for him, given me a focus when I'm staring out the window at the stars.

I hope it doesn't strike you as desperate for answers, even if they require fabrication. If it does, I'm okay with that. Cause most of the time, that's what I am.

Heart with you and yours, thinking of Maddy.

missing_one said...

Thank you so much for telling Maddy's story.

I don't know what to say but that this is such a beautifully written saga commemorating her life.

thinking of you all....

my heart sinks a little as I anticipate what will come tomorrow

Katie said...

This is so sad to read and yet, your love for her shines through every single word. You said in a entry just a few days back that you were pretty sure you did well by Maddy and that you deserved some flowers, too. All I can say is that if I am ever in this situation, I can handle myself with even a fraction of your grace.