Dying In My Arms

...(an essay on the first 100 deaths of my daughter).

PREFACE: this IS actually deeply personal,some of it anyway, and I may regret tearing my guts out over the internet someday but I still refuse to blog in private-- part of my new honesty is the best policy policy, but here goes...

December 23rd, 2004 I started writing this on my old PC. I abruptly stopped two days later and only recently did I start to revisit these thoughts. I had plans (still do) to turn my experiences into a book that might complement some of the established books about premature parenting, like "The Preemie Parent's Manual", etc. Suppose I ought to throw in some background.

If you stumbled on this, my daughter was born on April 24th, 2004 at the University of Washington Medical Center in Seattle. She was delivered by emergency c-section at around 333am, and weighed 1 pound, 14 oz. Her projected birthdate should have been around July 8-11, 2004. 29 weeks, for you women who have been pregnant. Yep. Way early.

I started writing this, intending it to be chapter one of a book, and probably the basis of a Discovery Science-style mini-series for which I could pull a ton of grant money and be remembered for WAY longer than any music video or rockumentary, and as stated, I put it away shortly thereafter. It originally started as a really upbeat "hey, this aint so bad--look at me!!!!" piece. We (meaning the baby, her mother, me and various members of the extended family) were in the NICU for 82 days, another 17 days in step-down at St. Joseph's in Tacoma, and she finally came home on oxygen at around 5 lbs. At that time, no drastic complications: preemies are prone to brain swelling, brain bleeds, cerebral palsy, ROPS, spinal biffida, and a host of other nasty complications. She had had none.

Two days later, she was hospitalized with an upper respiratory infection, the first of 3 or 4, I can't remember the exact number-- that's when the "aw gee,look at me I'm superpreemie dad" attitude got retired. Lung issues aside, she went from 5 pounds to about 11.5 pounds shortly after coming home.

Then she stayed 11.5 pounds for almost 11 months.

Yeah, oh-oh is right. It took that long to identify and correct the problem with surgery-- a nutritional issue that is also too complicated to describe here. Anyway, the surgery required an incision across the abdomen which separated the diaphragm musculature.The abdominal muscles are crucial in how babies learn to pull themselves up, stand and walk (they work in conjunction with the hips in walking). Result-- normal growth on a curve, but "global" delay in development in terms of fine and gross motor skills. 2 years of physical therapy, which I take her to religiously every thursday, she is just now getting the confidence to walk on her own.

Great, right? She's four. At a certain point you have to quit differentiating between her adjusted age and her chronological age-- she's delayed. She did spend almost the first year and a half NOT growing, which if calculated, would put her developed age at about 2 1/2, which is about right. Ok straying from track some...

Back to the NICU, the first weeks of her life. BTW, the term is "preemie":it is, at least at this moment, pc and does not insult preemie parents if used in the right context.

Preemies in the NICU have what are called the "ABCs", an abbreviation of the conditions apnea (involuntary cessation of breathing); bradychardia (spontaneous cessation or decrease in heartbeat); and cyanosis (low oxygen saturation signalled by a blueness around the mouth and lips). Each kid has a full time nurse and sometimes also an NA, and the monitors you see both on tv and in an actual NICU are monitoring those incidents, which would account for about 5 of the wires you see in early pictures of my baby.

Whereas science has made huge technological leaps in the neonatal care of these tiny kids, there are also some surprising things that are common practice as well. Example one is caffeine. Caffeine aids the underdeveloped nervous system by stimulating involuntary functions-- heartbeat, breath, etc., but why it works that way is not exactly known. "It just does", and is considered a fairly standard practice. Hence, my daughter has had caffeine in her system before and for longer than she has had breast milk and food.

Example two: "Kangaroo Care" and skin-to-skin care. It has been determined that direct skin contact with a preemie kid helps them grow and develop and have a generally better life in the incubator than without it. UW doesn't do 'kangaroo care", where the kid is actually rigged in kind of a pouch that keeps constant skin contact, but they do encourage and practice skin-to-skin. Skin-to-skin involves holding the baby across your bare chest, usually in increments of an hour or so, depending on how much the baby is struggling. The most common partner in skin-to-skin care is obviously the mother, but the beautiful part of it is that it works with anyone, and in some situations, doctors even bring in surrogates if the mother, father or family member is somehow not available.

So I did it, too. They bring out privacy screens, set you in a comfortable glider rocker, down comes the shirt (I wore A-shirts a lot so the front could just be pulled down), here comes the baby, listen for the alarms,etc. and off you go to a one hour fest of agape baby love.

Describe it? Awesome and scary at the same time. Awesomely scary? Frighteningly awesome? Something like that. This tiny little being resting on your chest, tiny little heart rattattatting at 135-160 bpm, and at that moment, so totally dependent on YOU as the surrogate for the womb she was so recently taken from. Anybody whose ever done this will tell you there are things, changes that happen to you involuntarily. Your breathing syncs with the baby, and as soon as it does, there is this profoundly sedate calm that takes hold, an actual physical occurence-- your movements still and slow, you become sleepy--makes the hour seem like 15 minutes. An absolutely profoundly amazing experience, and singularly unique--I can't do it justice with words. Also, profoundly intimate. Profoundly I say, because being of the male species, our experience with "intimacy" doesn't extend far beyond the sexual arena under normal circumstances, and this is entirely different, and something that is usually relegated to the exclusive domain of a woman, and a mother specifically. We have no concept.

Don't believe me? Men, did you know that the sound of a baby's cry will make a nursing mother's breasts physically HURT? Not just specifically her baby, ANY baby-- imagine her having to spend 60,70,80 days in a hospital ward full of crying babies--ther'd be no respite, it'd be too much. We don't think in those terms because physically those things don't/can't happen to us. So we have no concept.

Before I stray--yes, profound. Scary when she's struggling.

Struggling means lots of incidents, which are recorded by the monitors and that data is used by the attendings to determine and shape the course of care. That's what the monitors and alarms are for, and until you can condition yourself to do what the nurse tells you "look at the baby, NOT the monitor", you dread every beep. Part of skin-to-skin is that the calming effect on the baby aids the nervous system to reach a consistent pattern of involuntary functions. Consistent meaning CONSISTENT ENOUGH TO SUSTAIN LIFE.

The reality of this experience is you are handed the child tubes, wires and all, under supervision of course, but also the monitors and alarms. It's unnerving the first time, and the second and even the third--like most men with their first child, I was a little afraid of her. Ever seen huge guys with little kids, and you can tell they're more than a little uncomfortable? We're afraid they're more fragile than they are, that they're going to break. It's awkward, we don't have the built-in shelf up top that women have to tuck the baby up on, it SCARES us.

So that brings me full circle to bradychardia, which is the surest sign of distress in a preemie baby, and one of the most serious incidents. I can't recall what the alarm was set for-- I think it was anything under 112 bpm, but that part of my memory is not great anymore even though I remember vividly most of the other details. When it drops, the alarm goes off until the heartbeat goes back up. Heartbeat is an involuntary function, and every bradychardia signals a dip, loss or cessation of involuntary function, which if unattended the child would die from. The simple act of touching the child or slightly moving the child is oftentimes enough to end the incident. If it escalates to direct stimulation-- I've even seen nurses pinch my baby's toe REALLY HARD to kick the heartbeat back up-- it's recorded and graded as a more serious incident, the least-serious being "self-resolved" and the most serious being "needs resuscitation/rescue measures". On bad days,she might have 6-7 an hour. 1-3 incidents during skin-to-skin care, and they end the session and put her back in the incubator.

Step-down, the process which determines whether or not she can come home, is dependent on the reduction of ABC occurrences. The first time I held her for skin-to-skin, her heartrate dipped and STAYED DOWN. Seemed like an eternity. I nudged. I patted (these are the things they tell you to do). It wouldn't come up. Might have been only a minute or so, but cold panic set in even sitting in the middle of 30 qualified medical personnel. The kid is literally dying in my arms (wasn't the last time, either)-- someone HELP. You never totally get used to it. You are having this wildly profound experience with this other little being, and mortality pokes it's icy little finger in there a few times an hour just to remind you that you have to protect this child from the circumstances of her birth basically forever. Well maybe not forever, but it seems that way for a while.

Then you consider the seeming enormity of the statistics, the odds against the two of you. Treatment goal: Reduce ABCs. You check her chart for the last 24 hours-- 25 incidents, averages out to about 1 per hour, although in reality they are clustered around the care times--during and after the nurses come to check vitals, change tubing etc. Some days more-- a lot more-- some days less. 25 little deaths today. 3 while I was holding her. It seems impossible, some days but you have to not dwell on how you got here, just know where you are, and look to where you want to be.

Sit in my rocker with this bristling mass of wires and tubes and know that somewhere in the middle of that is the best thing you've ever given this world, and try not to be affected, try not to be changed. In all the struggles, there are little triumphs which in 4 years turn into huge triumphs. THERE IS NO INSTRUCTION MANUAL FOR THESE KIDS--I KNOW. And I know how many of you hopefully reading this have already walked more than a mile in my shoes, and this is FOR YOU.

We had amniocentesis done at Swedish Hospital Seattle at 16weeks gestation.The needle part of the amniocentesis was a little nauseating (yeah girls, I know it wasn't MY stomach the needle was going into) but the rest was fascinating-- the nurse held up the amniotic fluid for a minute and I was instantly attracted to it. It was, if I remember, kind of brownish under the light, and I was totally fascinated with it--with the concept that part of me (my DNA) was in there, so it was part of me and yet totally separate from me-- it had even come from someone else's body. That's all I can think to describe it, but that image will always be indellibly imprinted, one of those things I'll never forget. Baby, I loved you then-- I bonded with a vial of her amniotic fluid.

How about day 60 or so, when they ran out of little tiny veins to put IVs in? Moms may know what they do then, dads might not: they put the IV in a vein in her head. It was upsetting to say the least-- besides being a tube on the end of a needle, it was in her head. And I held that tiny little body anyway, every cell in me wanting to recoil--to scream and cry at the same time, to rip out the tube, fold her up in her blanket and just leave with her--c'mon kiddo, I'll just get you a Happy Meal on the way home--and I could do none of those things but hold her, my eyes going black with rage at the offense to her tiny little body, and I could have sworn the top of my head would just shoot right off.

We cannot rail about the things we cannot control--only learn and move on.

That, for now, Is All-- more later.

PD

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