September 13, 2013 § Leave a comment
i of ii
On a Saturday morning, her fifth day of life, Lucy was transferred from Hometown Hospital to its parent hospital in downtown Austin. In a way it felt abrupt. It felt abrupt because, for one, it was a Saturday, and all the week long, since the day of her birth, doctors rarely mentioned the likelihood of a transfer. If a transfer was brought up it was dismissed as a distant possibility, something that “might maybe” happen if her oxygen saturation didn’t pick up on its own, which everyone seemed certain that it would. By everyone, I mean, primarily, whichever neonatologist happened to be seeing us on a given day. The group of at least a dozen doctors was based in Austin, and they would take turns rotating to our hospital for 24-hour shifts. So it’s no exaggeration to say that Lucy had a different doctor each day of her life for her first week on Earth.
Each Doc of the Day would make pretty well the same assessment: feeds well, great even, considering DS, just waiting to see her sat’s improve and then “y’all can go home.” Going home felt like an imminent affair judging by the upbeat operandi of the doctors and most of the nurses at Hometown Hospital. Only occasionally would someone make mention of the echocardiogram (sonogram of the heart) that she’d need to have sometime in the future to find out if there was a congenital heart defect. Babies born with Down syndrome stand a forty to sixty percent chance of being born with some sort of congenital heart defect (compared with .8 percent, general population). Of those born with heart defects, some are treated with medicine and do not require surgery. “IF” Lucy was, in fact, born with a defect, this is the group she was overwhelmingly speculated to be in, judging mostly by her ability to feed, her breathing and her overall picture. In that first five days we must’ve heard a dozen variations of
“She’s doing reeeally good! I think she’s going home soon, uh-huh. Hey, don’t you two go getting too comfortable here, Mom and Dad, you understand?”
from the mouths of doctors, nurses and therapists.
And we were getting comfortable. The great thing about a small town hospital is that if your baby is in the NICU and there are open beds, chances are you’ll be given access to a room right down the hall from where your baby is. So when Missus was discharged on Wednesday, having recovered like a warrior from her own surgery, we were allowed to stay and use her recovery room until whenever Lucy was discharged or they ran out of beds. Fortunate to have plenty of family in town who wanted to stay long enough to see Lucy’s imminent return home, we took full advantage of the room and our loved ones, who kept the home fires burning for our older daughters (six and nine) and saw that they were fed, loved and schooled whenever they weren’t visiting Mom, Dad and Lucy at the hospital. In light of what was happening during those few days, we were as comfortable and taken care of as we could be, covered up in family, friends and prayer.
Not that there wasn’t enough stress to go around. On room air Lucy’s pulse oxymeteter would read in the high seventies/low eighties. Even with the oxygen enriched air she got through her nasal cannula she would frequently dip below the level at which her monitor was set to alarm. Often times, most of the time, it was a positional thing. Keeping that pulse-oxymeter’s sensor secured to the end of an infant’s toe is nearly impossible.
There were times when the monitor would sound better than thirty times in an hour. Not an exaggeration. The alarm would prompt a nurse in the next room to stand, come into the room, silence the alarm, check the position of the pulse-ox, check Lucy’s color, her airway (were we holding her right?) and then, satisfied, excuse herself back to her work. The good nurses would just come in and silence the alarm, smile at us apologetically, have a look at Lucy and walk back out. Some of the younger, less stoic types were harder to take. They’d walk brusquely in, playfully chastise Lucy, reminding her to “Breath, breath!,” stand with their arms folded, occasionally fidget with the pulse-ox sensor until satisfied, and stomp back out with, “Well, at least she’s pink!”
The Saturday we were transferred was a blur in its own right. The Doc of the Day surprised us with news that she thought it might be time for Lucy to have her echocardiogram. Not wanting to be alarmist, she simply stated that it was possible that the results of the test could change the way she was being treated, that maybe there was a reason that the methods in practice up to that point weren’t working, and that a little more knowledge could shed the right light and prompt just the right tweak to her treatment (medicine, perhaps?) that would see her home.
We wanted to know more about the echocardiogram, and what they’d actually be checking for. Doc of the Day went into more detail than we’d gotten up to then on the finer points of Atrioventricular Septal Defect (AVSD) and VSD, the most common heart defects Down babies are born with. These are very similar conditions which amount to a hole (or holes) in the wall of the two lower chambers of the heart that can allow non-oxygenated blood to mix and mingle with the oxygenated blood. This causes the heart to work harder, less efficiently, and in extreme cases send extra fluid to the alveolar sacs in the lungs resulting, ultimately, in heart failure. All the extra work that the heart has to do can also eventually lead to enlargement of that ceaseless muscle, which is why repair has to be done early, but not too early. Weight has to be gained to give the surgeon a healthier, bigger target, but even the luxury of weight gain has to be weighed against the possible rate of unnatural heart growth, if any. All of that, of course, is mainly considered when the hole is large enough that it requires surgical repair. Again, not wanting to seem alarmist, the doctor waved this scary thought away with, “Which I don’t think will be you guys,” and moved on.
Hometown Hospital, with its new but smaller NICU, unfortunately did not come equipped with the instrumentation to perform the heart sonogram, or else they would have done it immediately. And why wait another second to have it done if it might change the way she was being treated?
It had also come to light that this particular Doc of the Day, a seasoned, pleasant woman, was the calm voice on the other end of the phone on the night of the birth telling Geico Doc that there was no need to move Lucy to Austin that night while her mother was in surgery. We agreed emphatically with her premise that if it meant getting Lucy home sooner, she should be transferred. Why wait another second?
So that’s how the move was put to us: A possible huge step toward going home. Of course, we were all in.
This conversation occurred at about nine in the morning, shortly after shift change. Being the self-perceived authority that I am wherever medical bureaucracy is concerned, I naturally knew that it would be dark before the system had run its course and we were in Austin. The wheels seem to turn ever so slowly in every aspect of healthcare, and it just didn’t seem plausible that this kind of thing would play out any other way. And since this wasn’t exactly an emergency situation, all the more reason for them not to get in a rush. They offered to transport Lucy by helicopter, which we laughed off. No way, never. Her condition had not worsened, so in a non-emergency situation why cut straight to rescue choppers? We were only forty minutes away from the hospital in Austin and would wait on a transport ambulance, thank you very much. Our wishes were heeded, and we were told that Lucy would be picked up in an ambulance in a couple of hours. Which I interpreted to mean: No less than four hours. Bureaucracy, and all.
I saw, now, an opportunity to play some catch up with our older daughters. Oldest needed to be picked up at home and shuttled to ballet at eleven and Middle, five then, had her two final soccer games of the season to play that day, back-to-back, starting shortly after eleven. I was a sort of assistant coach (read: glorified cheerleader) to her little team and as games were short I thought, Worst Case Scenario: I could watch Middle play some, see her medal bestowed, and should hell freeze and things were to happen sooner rather than later, I’d leave alone and head back to the hospital in time to see Lucy off (parents are not let to ride along for transport only). I recruited my old man to join me on my no-fail mission to do everything that needed doing that day.
We dropped Oldest off at ballet and then went back to the hospital to get my stepmother and their vehicle. We would need another in the unlikely event that I needed to leave the soccer game early. The coach acted surprised to see me there. We’re not close with the coach and his wife, but they’re very nice and word had traveled and somehow they knew what all was going on with us, sort of. Coach’s sweet wife asked about Missus and about Lucy and I gave condensed, downplayed updates and said that everyone was doing well, thank you.
The first game played itself out and by the time the second one started the wind was pitching furious fits. Around this time I got word from Missus that an ambulance was on the way, would arrive within the hour. Somewhere permanent winter was, indeed, descending upon Lucifer’s inferno and evidently the cold snap was upon us. I rendered first aid to a man that caught a chair to the forehead, thrown by the wind, giving him a nasty laceration. I gave myself a pat on the back for standing firm on No Helicopters. I hugged and kissed goodbye to Middle, wished her lots of fun and a great game, left her with my folks. I sped to my house to grab a few things we’d maybe need, not sure if we would have another opportunity to do this. Friends called saying they were on their way from Austin to come and visit us. I explained to them on the phone what was going on and that I wasn’t sure what to tell them, where we’d be once they got to town: Still waiting at the hospital? On the road to Austin? They answered that none of this was of our particular concern, as they were going to stalk us, track us down wherever we were, and of that we could be damned certain. And you really love your friends when they say things like that.
I missed the ambulance. It had come – on time — and the entire business of discharging Lucy, transferring her into the care of the medics and waiting transport chamber and loading her into the ambulance was conducted in record time, evidently, forcing me to taste of about nine kinds of crow, served dry and cold and at a lonely table. The ambulance was pulling away as I walked up to the hospital, a heavy feeling in my heart and in my stomach. Our friends from Austin had beaten me there too, and were visiting with Missus. We hugged, she a bit teary, and I said I was so sorry for not being there when they came. Missus said it was fine. Said that she only gotten teary when they put her in the ambulance. I was angry. Furious with myself for having so much as taken the chance on leaving my wife alone for what would naturally be a difficult moment. For not being there to kiss Lucy once, twice on the face before they took her. I couldn’t be angry in front of our friends, there to comfort us, so I withdrew instead to my fallback mode of quiet and seething self-reproach. Our friends helped us pack up and load out of our snug recovery room, a negligible number of footfalls away from our Hometown Hospital NICU, and they accompanied us to our house to help bring in the gift bags and bouquets and other trinkets that had accumulated throughout the week. In less than an hour we would be on our way to Austin.
I had texted my father to let them know that Lucy was on her way. They were in their car and leaving the soccer fields when I called him up between hospital and home. I told him I’d missed the ambulance and that I was pissed at myself for being absent from a moment that a man, a father, a husband, does not miss. Does not chance to miss. I vented a long-held irritation with myself for not being in possession of that stalwart sense of do-right that keeps a head level and plumb when the day calls for that, keeps a man from running all over town attempting to will normalcy into being, thinking he can and should do everything but the obvious thing, the one right thing. in front of him. With what was going on in the life of this family, why had I not made the call to simply skip it? All of it. Skip ballet. Skip soccer today, this Saturday, this one Saturday?
He, my father, told me that I was wrong. Said there was a little girl sitting on a booster seat in back of his Mazda wearing a big medal and a wide smile across her lips that said I was dead wrong and that I did right. Said that because they had to leave early and were going to miss the award ceremony, Coach’s wife, hearing the situation, asked if they could wait just one minute while she ran – this little forty-something mother of five or so kids – turned and (not jogged) sprinted multiple field lengths and across the expansive soccer field complex to a clubhouse where awards were sitting in boxes and then sprinted back to deliver a solitary medal into the waiting hand of a five-year-old with brown eyes, apple cheeks and a cute, thin lisp. Stories like this, people like these, will cause you to smile to yourself, maybe imperceptibly, and make mental note of the quiet kindness at work in the world even when the swirling winds of mounting disarray want your thoughts to be elsewhere. Dads, it is also true, will at times bite off too much. And fathers will sometimes rise to the occasion, meet the moment, and say the one right thing.
ii of ii
If Hometown Hospital was the equivalent of Mayberry Memorial, then the downtown Austin hospital Lucy was transferred to was definitely its antithesis; perhaps some hybrid of St. Elsewhere and Folsom. I’m not a complete stranger to hospitals, had even been to this one many times over the years for work-related stuff, mostly ER and surface-level visits, but I don’t think either myself or Missus were able to mask from our faces the apprehension we silently shared as we made the first long walk of many from our car to the St. Elsewhere NICU.
We would later joke that once you’d made the forty-minute drive from home to St. Elsewhere’s parking garage, you were only halfway there. The spirit of the statement comes from the fact that getting from the parking garage to the NICU is a sort of journey in itself. Once you’ve reached the labor and delivery floor you find yourself turning this way and that, going down the long, bustling, narrow hallway of a veritable baby factory crawling with men and women, families, sometimes huge families, hustling in and out of sparsely spaced doorways, each door sporting an enormous, gaudy pink or blue ribbon, courtesy of St. Elsewhere. This hallway seems not to end, just diminishes into the distance while you walk past the busy and indifferent-looking nurses standing at their rolling work stations pecking at computers in between rapid-fire patient visits. Soon you turn off into another hallway and then down another; a series, really, of long, unwelcoming corridors leading you into one of the last places you want to be if you’re a new parent. To say that we were traveling deep into the bowels of St. Elsewhere conjures the appropriate mental picture.
We checked in at the NICU desk doe-eyed and uncertain of everything. We were instructed on where to find the individually wrapped hand scrubbers, how to properly wash, scrub and rinse up to the elbow, surgeon-like, (giving special attention to fingernails, ladies), and then finish with the no-wash antibacterial gel before being buzzed back. You walk through a second set of double doors that begin and finish their slow work with a kind of reluctant, mechanical grunt. Yet another long corridor connects you to Bay 5, your bay, and your baby’s bed station. Because Lucy was a transfer, and had been exposed to other-than-St. Elsewhere NICU environments, bringing who-knew-what kind of germs along with her, she was placed in a room of her own. In isolation, I suppose. This turned out to be a sort of benefit to being a transfer because other babies in Bay 5 were out in a general area, spaced six to eight feet apart, only a thin, green curtain on a ceiling-mounted track available for your privacy and self-enclosure. By comparison, we had been given a corner suite, our own nursery, with two closing doors separating us from the outside world, and it was admittedly a small, if not guilty, comfort.
When finally we got to her, Lucy’s echocardiogram was still in progress. A tech with a machine on wheels was wanding her chest all over, looking at her heart from every angle. The screen showed different hues of reds and blues and was pretty much a mystery to untrained eyes, like something a meteorologist would be more likely to make sense of. When the tech finished and left we were soon talking to our Doc of the Day, who tried his best to welcome us and put us at ease. He explained that the echocardiogram would soon be read by Lucy’s cardiologist, whose office was across the street, and that in an hour or so we would be meeting with him and would know more.
All morning long, slowly, my attitude about the day had been shifting. Whereas it had started out upbeat and optimistic about finally getting this formality, the sonogram, out of the way and that the wheels were finally turning, steering us and Lucy toward home, by the time we were on the road and halfway to Austin a very different feeling had settled over me. My positive outlook had been waning and had morphed into one of unease and dread, coming to rest like an albatross in the pit of my gut. I remember thinking that it would be nice to have some friends, some family waiting there for us when we got there to celebrate with us if the news we got was good; to be there for us if it wasn’t.
When the cardiologist walked in he greeted us solemnly, and genially, and then sat down. He wasted no time. “Lucy’s got some stuff going on, okay, but it’s — it’s something that I think we’re going to be able to do something about, hopefully take care of.”
He explained that Lucy’s heart did have a canal defect, sometimes called AVSD (or VSD, sometimes Full AV Canal or simply AV Canal — take your pick). He said that she would need to have open-heart surgery to have it repaired. This was “the good news”: That it was repairable. He hand-drew a schematic of Lucy’s heart to show us where the holes were [indeed, there were more than one] and explained how they were impacting the function of her heart and why she wasn’t oxygenating as well as she could. When I asked, he classified the size of the hole, the main one, as moderate. When I asked, on a scale of one to ten, how difficult her repair would be he speculated that it would be a five or a six, but reminded us that he was not the surgeon, and that the reality of things is that the surgeon doesn’t truly know what he’s dealing with until he is “in”. He said that we would meet with Lucy’s heart surgeon possibly in a few months, after she gained some weight to give the surgeon a bigger, healthier target to operate on. The other good news, he offered, was that these surgeries typically have a very good success rate, in the high nineties. He said they like to operate when the baby reaches fifteen-or-so pounds, or approximately four-to-six months of age, provided that her regular echocardiograms didn’t show any unnatural growth of the heart. If they did, the surgery would need to be done sooner than that.
On more than one occasion, I’ve likened the receiving and processing of this kind of news in this way:
You’ve found out recently that you are the parent of a special needs child, something that only happens to other people. So already you’re a deer in the headlights. And if a deer in the headlights is what you are when you’re processing that, then hearing that your child is going to need surgery to her tiny heart probably feels something akin to being the deer that gets hit by the car but doesn’t die. Just jumps up and bolts away like nothing’s happened and spends hours in a stunned, glassy-eyed daze.
This may seem dramatic, and probably it’s an overstatement, more appropriate for someone who has just abruptly lost a loved one. Our baby was alive and was breathing and was going to keep breathing and would live and would not be going under the knife that day for emergency surgery, before we could wrap our heads around it all (which I might have preferred when put like that).
But we didn’t know this at the time. For all we knew and felt, Lucy was living moment to moment. Her sats could plummet and not recover. She could go into heart failure. She could stop eating. All the unknowns were in play, in our minds. True, the more knowing cardiologist and neonatologists and nurses who lived and breathed sick babies knew that Lucy would more than likely be fine, but we couldn’t feel that same sense of ease about this new reality of ours. Not today. Not in this place. Not after hearing that.
Mostly, this is on us. Rule number one of adulthood reads something like: “prepare for the worst while hoping for the best,” and at that we had failed. Those distant headlights, that remote possibility — the one that so many docs and nurses up to that point had so frequently, so cavalierly eschewed and waved off with hand gestures — had zoomed into the foreground. We’d dented its hood, spidered its windshield, and there we stood, bruised, dazed and dumbfound.
One of our lasting complaints about St. Elsewhere is that they boot you out at shift change. An hour and a half, twice a day, seven and seven. Maybe this is common, I haven’t researched it, but probably it is. And probably I had always wanted to believe that for the families of babies that are in an intensive care unit there was some kind of champagne room where a different set of rules were carved out for people who’s lives were upside down and in sway — rules fostering an environment of empathy, cooperation, and parent-doctor synergy. Yet another of my very naïve notions, and not at all the case at St. Elsewhere, where there are no beds for NICU parents, face-to-face doctor conferences are left to chance (hopefully you are in the room whenever they happen by) and you get booted out at shift change, the time when the most detailed information about your little patient and their battle plan is exchanged and verbalized.
But ask anyone who’s ever walked through a time of difficulty and they’ll tell you that the rules of life are not at all different for the stunned, the emotional, the heartsick. The world is not especially sympathetic to what is going on with you. It moves at its pace and each day is just another day. Tollbooth attendants are still curt and indifferent, hotels are still full, and everybody’s a wise-ass.
After being informed about the shift change policy we figured we might as well go and find a place to stay for the night, until we figured out what the next few days held. Driving home did not feel like an option. We still had no idea whether we would be bringing Lucy home in a day, a week or months. Leaving her at St. Elsewhere while we went home to sleep in our own soft bed, her in this big, looming, foreign barrack, was not even a thought. Not yet. Had there been a solitary bed for a parent beside her there would have been nothing to think about. One of us would have stayed the night. But that was not permitted. We were given the number to the Ronald McDonald House, about a ten-minute drive from the parking garage, and got no answer. We set out to find a room at any of the reputable-looking hotels in the greater downtown area without any luck. We had driven aimlessly, stopping in at a handful of hotels and getting the same news: No rooms. It was Saturday night in Austin, Texas. We should have figured.
After trying again with the Ronald McDonald House a while later I got to speak with a person who informed me that they were full. He asked if we wanted to reserve the next available room, unable to say when one would come vacant. Sure. When I gave him my name and then, at his request, the spelling, he made a cute comment. “So that would be the – wrong — spelling, then?” Whatever. It was just another night at work for the guy, he was just trying to keep the conversation snappy and light, and I only just wanted to reach through the receiver and throttle his flimsy neck. I answered another question, maybe two, and then said I’d just call back another day. He’d lost me with his cutesy comment, and I was done with him. I asked Missus why a guy who works where he does and who speaks only to people living through tough business, why he would presume to be cute with people on the phone. Neither of us had an answer, but I was vaguely aware that I was just tired and done not only with him, but with the day and with hospitals and the entire business at hand. Food. That was what we needed.
It helped. We ordered pizza and salads from a local pizza kitchen near the hospital. With water in our veins and food in our bodies, both Missus and I felt that we were thinking clearly again. As for what to do after dinner, it seemed pretty simple. We’d go back to the hospital and spend some more time with Lucy. Then we’d go home. We’d wake up in the morning and have breakfast with the girls, at the hotel now with my dad and stepmother, and we’d come back after shift change in the morning. There were no hotels close by to be had (that didn’t offer syringes in the vending machines), our own beds were only a forty-minute drive from the hospital; and maybe we, she, Missus, had earned a good night’s rest. We hadn’t slept at our house in five days.
We went back and held Lucy some more, kissed her goodnight. We left her in the hands of St. Elsewhere’s finest and morosely walked back to our car and past night visitors, on their way in to visit friends and loved ones, another side of humanity from the day traffic, seemingly. We headed for home.
Our town is lined out with railroad tracks the way stitches lace a baseball. They’re kind of all over and ever present. It’s a sort of standing joke, a running one, that you can’t get anywhere in town because of the trains. Outdoor signs and storefronts jeer them. We live only a short hop, a couple of miles and one traffic light off the I-35, which makes travel and commuting pretty easy. But in-between 35 and our place there are two sets of tracks that run parallel, and so it’s no great surprise to get stopped. We were within fifty yards of the track when the blinking lights came on and the arms started down. Just another train. Only this train felt different.
For a period of about five years, things had been good for us. Easy. We’d been healthy, our kids had been healthy, our situations had been improving, marriage never better, safe jobs, no lost loved ones. Murphy’s Law seemed to have forgotten about us. Completely. It felt like we’d been flying under the radar, I guess.
Now, though, I felt pretty sure that we were a giant blip centered squarely on Murphy’s own, huge, personal bedside radar terminal, and that he’d gleefully settled in and was using that blip for what had become a righteous game of Pong, now in full fervor. I imagined a big bag of Cheetos within arm’s reach, next to a two-litre bottle of warm Coke — not goin nowhere for a while. I made a joke to Missus, after we both had sighed at the sight of our train, that at least our house hadn’t burned down. We chuckled some. I was only kind of kidding. I was quietly pretty damned certain, in fact, that this particular train had an agenda. A hostile one. This particular train — I became more certain of it the longer we sat there — had been sent to delay us from getting home in time to prevent a small, incipient little flame in some recess or corner of our home from becoming a raging monster, and we would now pull into our driveway to find our house of ten years, which we had finally come to love as our home, aglow in an orange upheaval of sky-licking flame and belching black smoke.
It wasn’t. Murphy had given us a reprieve.
(You have just read all of Part Two, originally published in two installments on July 15 and July 22, 2013. Please share this as you see fit and also consider making a donation to the NDSS via the Lulu & the Lettuce Patch image on the sidebar. And thank you.)