Florence Would Be Proud

Turns out October 15 is Pregnancy and Infant Loss Remembrance Day. Who knew? Apparently Searching did. Here I simply march in lockstep to the well-oiled machine efficient yet compassionate Children's Hospital Bereavement Services department who promote Dec. 9 (see sidebar). My attention is focused there right now as the blurb about Maddy for the Deadkid Book they hand out at their event is due on Friday.

But I digress.

Searching is a NICU nurse, and to quote Maddy's death notice regarding NICU nurses in general, "a superhero in her profession." And I mean that. Nurses are so often invisible, unthanked, and taken for granted as they blend into the white noise of hums, beeps, and rolling IV stands of the NICU. Parents are usually so exhausted, overwhelmed, sad, hopeful, and despondent, that they save any remote iota of energy for the doctor, who comes infrequently, and often delivers news that is impossibly hard to understand and painfully hard to hear. The nurse tends to be the person who hovers between you and your child, silently checking vitals, and comes to embody all that is shit about the experience of having your baby in a plastic cot and not at your breast.

I know there are bad apples out there. I know because I've read the stories in my "Deadbabies for Dummies" books, and heard the stories in groups, blogs, and word of mouth. But I'm here to tell you that our experience was nothing short of textbook wonderful. Searching asked to elaborate on a few things that could make her better at her job (which just goes to show that she's one of the great ones), and I started to comment on her blog and realized I'd write more than her original entry. So here we are.

Good stuff wouldn't be good without bad to compare to, right? So for any NICU nurses reading along here, quickly, are a few things to avoid. And in NICU nurses' defense, these no-nos were committed by nurses in the postpartum unit, but I can imagine similar transgressions occur. (And in postpartum nurses' defense, I had an AWESOME one at my delivery hospital once I got moved to the recovery section near the NICU.) Don't insert your own philosophy, beliefs, or judgment on the parents, whether it be medical, philosophical, or religious. That is, don't tell me my baby is too beautiful to have anything wrong with her, you've seen this a million times and the baby always goes home, and God has a plan so just blithely keep trucking and it will all come out in the wash. (This latter sentiment was given to me by a nurse -- who probably invoked Jesus a few more times than I did right there -- while taking my blood pressure a mere few hours after I was told that Maddy's brain was in shambles. I gave her an icy stare as she recorded numbers in the vicinity of 180/120.) You don't know, we don't need sugar-coating, and your God is in all likelihood, not mine.

But mostly, the nurses offered pleasantries and goodness and all that a misty wartime Florence Nightingale movie would offer. I often tell Mr. ABF that as wretched as our situation was/is, I cannot imagine having gone through it anywhere else. A lot of that feeling is based on the amazing medical staff at both my Delivery Hospital and Children's Hospital, the nurses in particular. I personally know a woman who invited her son's nurses from Children's Hospital to his funeral, and when they arrived, late, still in scrubs directly from their shift, she interrupted the service and asked everyone to please give the staff a round of applause. They got a standing ovation. Here's why.

When your child is a mass of wires, tubes, beeping, sirens, pings, gauze, and tape, it's scary enough that it can become a bit detaching. Not that you don't love your child and don't want to sweep her up in your arms, but you're afraid of setting off some remote trip wire just by breathing on her and raising her temperature an iota of a degree that will send the entire medical staff into red alert. Our nurses explained every freaking wire, machine, drip, and sensor. They noted what was different now as opposed to before we took a break for lunch. And then they repeated it all over again because we were too tired to remember a damn thing they said two hours ago. Furthermore, the nurses dragged us into the mechanical jungle and got us involved: we changed diapers, cleaned Maddy's lips as her tube made them a bit gunky, cleaned her closed eyes, bathed her, took her temperature, touched her, and the piece de'resitance: held her. They never sighed or rolled their eyes even if it involved two (sometimes thee) nurses to negotiate her equipment and lift her out of her cot and into my lap. If I just didn't have the gumption to bother them, the nurses would proactively ask me if I wanted to hold her, and go through the whole rigmarole again. They allowed me to touch, hold, feel, and smell my child and for that I'm grateful.

There is no good time to have a child in the hospital, but right after you've given birth is a bit traumatic. I was fucking exhausted, physically and emotionally. I slept less in the six days that Maddy was alive than I would have had I brought home a healthy newborn who ate every 90-120 minutes. And the nurses all understood that and in addition to taking care of my problem child, took care of me. Without my asking they would bring me a pillow or a more comfortable chair. They brought me water. They walked my pumped milk containers to the freezer thus allowing me every possible second with my daughter. They made pumping near my child easy and non stressful. A nurse at Children's Hospital got sidetracked while finding a screen for my first pumping session there, so I just started out in the open. (I'm not the most modest person when it comes to breastfeeding, and having a dying child at the ready really didn't do much to curb these tendencies.) She returned and apologized, I told her I really didn't care but if she thought doctors and others would find it distracting I'd shield myself. She responded, "If they did, they wouldn't be working here." From then on I double-pumped in the open, and more than once carried on an interview with a suited male specialist while hooked up on both sides to my purring Medela Symphony. No one blinked. I truly believe this is because the nurses care so much for not just the infant, but the parents, that it permeates to the rest of the staff. I know this sentiment evolves from the bottom up: Mom is physically fragile right now, the nurses seem to emanate, so as with everyone here, handle with care.

My husband is quite a gifted photographer if I say so myself. He took some shots in the delivery room, but then put the camera down in order to be in front of the lens for the following 6 days. The nurses picked up where he left off and constantly had out their cameras, taking pictures of Maddy, us holding Maddy, Maddy's hands, her feet. They often took pictures when I demurred, knowing I had just given birth and hadn't showered in three days. The pictures aren't great; they're grainy, poorly lit, and some not horribly well composed. (Certainly nothing as remarkably beautiful as Carole's.) And yet, they're all we have. They live in my purse, on my computer, on my mantle. And weeks after her death, I went back to both hospitals asking for the files and they responded immediately with loads of photos I didn't even know were taken. Parents don't often want the pictures taken (at the time, I certainly couldn't imagine ever wanting to see myself at that juncture), but minds change as soon as six weeks later. If you can, take pictures, save them, send them later. I'm actually thinking of giving a good digital camera to both NICU's as a gift, along with some good lenses.

In addition to the pictures, both hospitals -- without our asking -- took footprints (both the ink and faux plaster variety), saved every single thing related to her crib with a name on it or that touched her (bracelets, nametags, those bands that they keep track of their pulse with) and gave them to us. I was amazed six weeks after her death when Children's Hospital called to say that they had the blanket she was swaddled in when she died. Did we want it? It sits in its manila envelope on my dresser, and occasionally I peak at it, or smell a corner, or just rub it between my fingers.

By far the most touching memento (mori) we received was directly the result of a NICU nurse. Maddy was born two days before Valentine's Day, and on the 14th, Bella decorated a Valentine (Dora stickers, don't ya know) for Maddy's crib. The next morning, on top of our stuff, we found a Valentine from Maddy to Bella. The NICU nurse had cut out pictures of Maddy, pasted them on a handmade card, and also glued in copies of Maddy's hand and footprints. The card instructs Bella to place her hand over Maddy's and trace it to see how big she was when they became sisters. This card now serves as a sort of a talisman for me -- it sits on Bella's shelf, but I refuse to let her hold it without strict supervision. Bella never met her sister, and this card, this touching moment that someone took time to compose, will have to serve in lieu of a real face to face encounter. As much as it sucks that paste and paper is as close to meeting her sister as she will ever get, it is simultaneously a magnificent substitution.

At the moment of Maddy's death, we were surrounded by nurses. Well, they set up a privacy screen, but that's who was on the other side. There was a resident on hand to confirm the time of death, but otherwise, nurses. They helped us clean her, swaddle her, place her in our arms. They took pictures that I didn't want at the time, but cherish now. And they cried. All of them, the resident included. They didn't rush us, push us, encourage us to or not to do anything. They told us to take our time, and that they'd get us anything we needed. And when it was time to go, they promised they would take care of her, now, still. She would not be alone, even now. My last image of my lifeless Maddy is swaddled with a nurse hovering over her as if she was still breathing away, in need of assistance.

Mostly though, the nurses were just there for us. We often just wanted to be close to our daughter, but thought if we read another Beatrix Potter story we might just remove Maddy's central line and jab it into our eyes. And so, we would just drift into conversation with the nurses as casually as if there were a bartender at one end of the aisle and a football game playing at the other. They told us about their jobs and how they got them, their children, their husbands. We decorated Maddy's crib in a manner that would put high school lockers to shame, and the nurses asked us about all of the photos: our dog, weddings, family members, and our daughter Bella. We chatted about living in this area, where they ate, what they did when they weren't dealing with strung-out parents and challenged babies. And we knew if we left, even just to run to the rest room, pump, find food, fall asleep briefly, the nurses would be there caring as if we were hovering over their shoulders. They cared deeply, and it showed.

The Children's Hospital nurses sent us a card, which I appreciated very much, if only because it reminded me of their names. I have yet to thank them personally, and I feel horribly that I haven't. I apparently missed Nurses Day (take heed: your child dies, and suddenly you're a new target market for Hallmark). So here goes: Thank you Meg . . . or was it Beth? (Clearly, Little Women was not a useful memory device for someone who then lost her short-term memory. I know you weren't Jo or Amy, though), Kathy, Jen, Bridget, and especially Roisin. Although I'm still processing why my daughter existed for six days, you were as much a part of her short life as she was herself. You have woven yourselves into our lives, and indeed, into our family. Searching, thank you for everything you do. And it seems so appropriate that you, a NICU nurse who cares not only for the babies, but the families they belong too, would think of everyone on this day and go out of your way to remind us. I applaud you, and I'm standing.