Part Two: The First Five Days (ii of ii)

July 22, 2013 Comments Off on Part Two: The First Five Days (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.

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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.

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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.

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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.

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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 Coke and Cheetos within arm’s reach — 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.

(Thank you for reading. Please check back next week, Monday July 29, for the first installment of Part Three: Every Day A Marathon (Tales from the NICU). If you are enjoying this, please remember to regularly share by clicking any or all of the social media tabs below or on the sidebar — it helps get more eyes on this site. Also, if compelled, feel free to make a donation to the National Down Syndrome Society by clicking the Lulu & the Lettuce Patch image on the sidebar. And thank you.)

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