Part Three: Every Day A Marathon (full-length)

July 29, 2013 § Leave a comment

 

I.

“…a matter of how much time, and how you’ll spend it…”

 

I’ll now address those reading this who’ve been given serious reason to suspect that they won’t be bringing their baby home from the hospital 48 hours after her birth. More still, those learning that they are in for a prolonged stay in one of the last places you want to be as a new parent: In the NICU, naturally.

At a point, there really is only one question: How will you spend your time with your baby? There are as many answers to this as there are parents. Everybody has a different employer and a different support network and a different situation. If no one has ever informed you of your protections under FMLA, please Google it, and check with your employer’s HR person. And keep in mind that some employers allow employees to donate leave to their peers in times of hardship.

Missus is a teacher, and the maternity leave allowed by her school district was just enough to carry her into the summer break, so time off for her was not an issue. I myself am fortunate to have the kind of job, a public service job, where you accrue leave and no one is much concerned about how you use it, particularly when it is known that you have “family stuff” going on. So time off for me was not an issue. Our work situations were ideal for this kind of event, and to add to our good fortune Missus’ parents are retired, and happen to be the kind of people who would, and have, put their lives on hold to live out of our guest room to see us through what was at hand. My mother, father and stepmother also came to be with us from their respective cities when they could, for as longs as they could. My feeling is that even though we have no family members living in our town, and most live hours away, we are still blessed with a stronger than average support network, even before adding-in the friend and church base.

So, really, we had no Real Life troubles exacerbating our crisis. We could both be at the hospital around the clock, theoretically, and bills would still get paid. Our girls would still get bathed, their homework would still get done and their lunches would still get made. And still, the decision of how to divide time between home and hospital was agonizing.

If you can’t be there around the clock you’ll feel like a deadbeat. If you don’t spend every waking minute holding her you’ll feel like a deadbeat. If a nurse changes a diaper or gives a feeding that you could have given, you’ll feel like a deadbeat.

Until the realization settles over you that you can’t do all of it. At a point you have to leave your child in the hands of those that get paid to be there whether you can be or not. You’ll need rest. You’ll need breaks from there. You’ll need sweet sleep. And here’s a not-so-comforting but important revelation to share, me to you: You don’t always get the A-team. Second and third stringers do rotate through, and you’ll come to read them in an instant. You’ll wish that the sweet, seasoned, surrogate grandmother could stay and never leave; or maybe the young, motivated mommy-to-be, who loves your little angel so much, and it shows. You might meet Supernurse, so competent, young, sweet and bright. Supernurse, so on top of it, who is always unnecessarily touting her education, on her way to becoming a P.A., and with faux nonchalance drops phraseology outside of your ability to comprehend, you poor thing. You’ll wonder whether she knows how she comes across: As God’s intended mother of this child, your charge of her in this life plane an unfortunate logistical error — her supremacy over you in the realm of parenting impeded only by the heretofore absence of a pregnancy, and yet even that is already worked out in her mind, a matter of timekeeping. No. It couldn’t be intentional. Only youth can account for this.

Otherwise, you’ll observe that thirty years of experience does not necessarily equate with top-tier care. You’ll observe that, for some, working in the NICU is not a privilege or some evidence of their dedication to their chosen work, as it seems it should be in your mind: The Show. You’ll observe that while you are sharing one of the most difficult seasons of your lifetime with these people, and while many of them do get that, to many others it is just another day at work, a Wednesday, and their weekend can’t come soon enough.

_____

As for how to spend your time between home and hospital, there is no specialist on staff that I know about to give you council on this (I’ve not done research to find out). If you ask a doc or a nurse what is typical, or what most people do, you might get the feeling that they’re advised not to offer suggestions. Or they’ll just tell you that it’s different for every family. Medical professionals seem to tread a fine line between not wanting to guilt or shame you if you can’t be there all the time and at the same time are watchful, for little patient’s sake, of the kind of parent looking for an out; some sort of mandate saying it’s okay for them not to be there, and so they can just check-in periodically or by phone until its time to bring baby home.

You’ll hear stories of moms who moved out of the house to be with baby at the hospital. For months. You’ll be inspired and shamed and made to feel a bit inadequate when you hear stories of how other families stayed at the bedside around the clock, sleep be damned, gutted it out, made it work for days or weeks or months on end. As for us, Missus and I, we arrived at our own sort of schedule, as will you, and while I’m not advocating how we did it I will here give a rundown of how we chose to do life while Lucy was a patient in the NICU.

We tried taking turns staying the graveyard shift and it was awful. One stays late into the night and early morning; one catches up on sleep at home while the other goes in after morning shift change. This just seemed weird, and anyway I wasn’t at all comfortable with Missus walking through that parking garage at night. The one night she did, I insisted on a blood oath that she request a security escort (which she honored). As stated elsewhere, our NICU was not built for parents, or comfort of any kind for that matter, and sleeping there was not an option. The nearest Ronald McDonald House was ten minutes away, and even if you utilized that you still had to negotiate the parking garage and the other considerable foot travel, also mentioned earlier. This precludes popping in and out for sleep in-between nighttime feedings. Our own house was only another thirty minutes away than RMH. We looked at it a dozen ways, and with no on-site accommodation, around-the-clock bedside care just didn’t work.

We quickly realized, rationalized, that Lucy had two older sisters (nine and five then) and that they were living through this also. With us. Only weeks before, they were living their lives the only way they knew them: Our house, our routines, our rhythms, and a little sister on the way. Since the day that Lucy was born, they had seen little of Mom and Dad. While we were living out of Hometown Hospital, waiting for Lucy to get to come home, they were living at home with grandparents. Daddy would still come and drive them to school and pick them up most days; they would come and see Mommy at the hospital for a bit, maybe even get to see Lucy (Hometown Hospital was surprisingly relaxed where it came to child visitors in the NICU whereas St. Elsewhere’s policy was, not surprisingly, as rigid as its walls).

Apart from that, things were pretty well out of sorts in their worlds as compared with the daily norm. We decided it wouldn’t be fair to our two older daughters for us both live out of a hospital every waking hour for who-knew-how-long. We decided that Lucy would have our days and her sisters would have our nights. We ended up spending nine to ten hours a day at the hospital. Twelve hours away from home, counting travel. Leaving at evening shift change, we didn’t get home until after eight, most evenings. Time enough for dinner, sometimes, and our nice, long bedtime ritual.

For those reading this who are up against the thought process of how you will divide your time between the NICU and Real Life, let me say: I am sorry for what you are living through. I’ve come across few decisions that brought the level of anxiety that you’re experiencing right now (Missus, I’m sure, would agree) and as said earlier, our situations were more than ideal. But whenever you’re ready to accept that you can’t be present every minute of every day, take peace in knowing that a certain amount of this is out of your hands. Let that knowledge enable you to do the impossible, and entrust your little patient to the healthcare system and the individuals that it employs to do what you cannot: Be there, always.

 

 

II.

Howdy Doody Time

“Have you been in here all day? And haven’t left for a break? Oh, my – Well, drinks aren’t usually allowed back here, but I’m going to bring you something.”

 

I’d asked for a drink of water. I’d come alone that day because Missus was visibly tired and needed rest. She’d only been released and off bed rest for two days. It was a week after Lucy was born and she needed rest that day more than Lucy needed her at the hospital. Her color wasn’t very good and she showed grey beneath the eyes. She didn’t look herself. She’d pumped enough milk for the day that Lucy would have plenty. It wasn’t easy, but I convinced her to stay home and rest all day because there was no telling how long this would last, and that Lucy would need her feeling better in the coming days, weeks?

The nurse, a sweet person whom we never saw again, had been talking with me, assuring me that everyone there cared very much for “these babies” (in the NICU), contrary to the feeling that heaved in my chest at that moment.

I was upset. Somewhere at the convergence of emotional and exhausted. I felt that since we’d arrived I’d pissed off or agitated about everyone who had any ownership in the care of our daughter. The day before, it’d been Supernurse, whom I questioned as to why we hadn’t been sent for when the Doc of the Day was present, us right down the hall. My mother and Aunt were in the room with Lucy and by the time my Aunt got to us and we got to the room the doctor had moved on. The daily doctor visits, I explained, were a big deal to us, and since there wasn’t a discernable pattern to their visitation times, a little page or a call to the receptionist, something would have been appreciated. She had given a stock reply, noting that there were just too many patients and parents to keep track of. “For better or worse,” her face matter-of-factly said, “that just isn’t what we do here.”

Today it was the respiratory therapist. A while earlier, Lucy had aspirated water. She’d coughed suddenly and then upchucked, and out from her mouth and nose spat four or five tablespoons of water; from her lungs or her stomach we weren’t sure. This was new, and had not coincided with a feeding – an unprecedented, unsettling incident that bore looking into, in my view. This happened in the presence of the Doc of the Day and I wasn’t satisfied with his level of concern, or anyone else’s. Lucy was absolutely fine, it should be noted, after voiding the water that had somehow accumulated inside of her, and was in no distress whatsoever. Still, I needed an explanation or at minimum a feigned investigation.

The machine that Lucy’s oxygen ran through to humidify the air mixture (to prevent drying out her nasal passages and causing infection) had been noisier than usual that day. Its drone was throatier, more gurgled and louder than normal, and there was a lot of visible condensation in the tube. Her feeding had been decidedly worse than in previous days, which had me on edge. I’d been watching that tube, asking about it with no good answer provided. I was even trying to contend that trace amounts of saline might have been creeping up the tube and through her cannula and down her nasal passages and esophagus, and that the water might have been accumulating in her stomach, maybe stunting her appetite (I thought it stood the test of reason at the time). I was making a second, more vigorous appeal to the doctor on this in light of the aspirating episode, which he thought was cute, I think.

More on my mind was how soon and by what primitive methods Howdy Doody would be out on the sidewalk, stripped of all dignity and collecting unemployment. While voicing my concerns to the Doc of the Day about the extra condensation moving through the saline pump, he’d asked the nurse to go for the respiratory therapist on duty, humoring me, so that it could be said the machine was checked and functioning properly. The respiratory therapist, Howdy Doody as I came to call him, came and stood outside the room, leaned his head and neck across the threshold, appearing baffled by the doctor’s request that he have a look at his machine. We explained about the noise and the condensation and then about Lucy’s aspirating. He redirected his perturbed gaze from me, to the machine, back to the doctor, nodded as if to thank us for the interruption, and then took his leave of us.

When he left the room my father and I redirected our best WTF?! faces unto Doc-of-the-Day, visibly surprised himself by Howdy Doody’s unmitigated indifference. My old man didn’t graduate from high school. He got the GED and went on to nursing school and then dug his way into a perfusion program. He is a perfusionist, operates a heart and lung machine during open-heart surgery. Has worked on an even plane with doctors and nurses and surgeons of all caliber his entire life, feels no inferiorities between himself and they, as there are none, and so got there first with the expletives.

“Are you kidding me! I mean what the hell?  You need to go in there and fire that son of bitch!”

I softly reaffirmed that Howdy Doody’s reaction was a bit dismissive. Good Cop, Bad Cop.

“A lot dismissive!”

The young doctor assured us that he would have a conversation with Mr. Doody and that a more thorough inspection of the machinery would occur, and that very soon. My old man left not long after that to beat traffic leaving Austin; I would stay until they booted me out at shift change.

A while later I sat holding Lucy, in the same spot I had occupied the whole day. Doc of the Day was in the room with me. I was a mess. Pissed off, wrung out (I hadn’t left the room all day for food or drink), tired. I next made the mistake of asking the young doctor for a realistic and honest estimation of how long he thought Lucy would be there. Weeks. Months, possibly. This was the first time anyone had put this to us bluntly, leaving out the caveat that she could dramatically improve overnight and that we could be taking her home tomorrow or the day after that. I felt like I’d flipped a breaker. Already I wasn’t functioning at full capacity and it felt like something had been removed from me. An anger surged in me at the same time. I was upset at nurses and doctors and respiratory therapists and loose communication and mixed signals and at my own gullibility, or inability to prepare myself for the worst while hoping for the best. 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, now, Mom and Dad, you understand?” replayed in my mind.

When I’d asked the question, the young doctor was standing guard, I think, to make sure things were cool between him and me. As said, I wasn’t exactly pleased with his reaction to Lucy’s episode either. When he gave his answer I’d involuntarily grimaced, shut tight the eyes, and my chin hit my chest. I’d come unplugged. The young doctor now tuned his voice up to empathetic. He, an unfortunate witness to my subtle undoing, was connected to the situation at hand solely by vocational happenstance. Time to go to work:

“This is going to be a process. It isn’t a race, here. It’s a marathon. It’s going to take time. It’ll just be a matter of how much time, and how you’ll spend it here.”

______

He left the room and I cried. It would be a fiction to try and put myself to anyone as some kind of uberman superhero who weeps not for fear of damnation, but I honestly couldn’t answer, if asked, when I’d last had an honest cry before this one. I’d teared up some the previous Christmas Eve when we chose to find out Lucy’s gender. It was an elaborate secret-gender scheme and we mailed the envelope along with $20 to our close family friends. Asker Her to just go to Target and buy anything obviously Boy or Girl and put in a box and wrap it. They visited us that Christmas Eve afternoon, He in full-on Santa regalia (on their way to see their own grandchildren) with a big red bag and a gift for every child in the house. This is one of my favorite memories now. The room was full of friends and family and children and when the last box was handed to Missus it contained an impossibly soft and artfully ­­­­­­hand-knitted pink baby sweater with hand-painted apple buttons and matching hat, enveloped in pink tissue paper. It was a joyful day, and the whole business begat a joyful, succinct snivel. But it wasn’t a cry. Nothing even close to a cry in quite some time. Not when Lucy was born; not even when we learned about her heart.

Here, though, IT came. It was coming up through me no matter what I did or had to say about the timing. I wasn’t having it at first, and even when it took hold and I was comprehending my defeat I did so grudgingly. Silently. This is long, slow, deep, repetitive sighing — all nose, in and out — the lungs working overtime, heaving slowly up and slowly down, to maintain the relative quiet. No way we were going to prompt someone in the next room to come over and see what was going on. Were an onlooker to have happened by, I might’ve looked to have been in the throws of some deeply meditative breathing exercise, were it not for the occasional sudden intervals of quick, silent shoulder-shaking; water voiding my eyes, wetting my face. Wetting Lucy’s face. While doing this I maintain the presence of mind, fortunately, to silently will hospital staffers away from that door with every stitch of my being, which seemed to work. I think one nurse might’ve approached, observed, and did her best to reroute unnoticed without breaking stride. Other than that everyone thankfully stayed away for a good fifteen minutes. Long enough, more or less, to regain composure.

______

And now in walks a guy, I can’t see his face, his back is turned toward me as he goes to rifling through cabinets and drawers. I’d more or less gathered myself by now, thankfully, although there was still some drying moisture around the eye sockets.

“Did you have any questions in here, or is there anything I can do for you, or . . ?” The voice sounded helpful, polite. Familiar.

“Um. Well. (I was confused) Are you the respiratory therapist?” He halfway turns to me and nods, cheerfully.

“Uh-huh!”

I’m very confused. I got a couple of very brief looks at Howdy Doodie in those earlier moments but hadn’t made an imprint. His new tone and aspect didn’t compute.

“Are you the same one that was here a little bit ago?”

“Yeah! Was there something you needed or something I can do, or. . ?”

Suddenly he’s Mr. Helper. Still about his business, still opening drawers and cabinets, shoving them shut. His mannerism is brisk, competent.

I knew instantly that Howdy Doody’s presence in that room was owed solely to the young doctor’s request, perhaps demand, that he “go back in there and try to seem professional”. This happened on day seven or eight of Lucy’s life, our third since she was transferred to St. Elsewhere. In that week we’d met a handful of respiratory therapists, all of them pros: friendly, businesslike and inquisitive. Howdy Doody was not cut from the same cloth as these people. I’d seen him earlier in the day, in fact. Walking back from the bathroom, I briefly saw him leaving Lucy’s room. I asked him if he was the respiratory therapist, figured he was, judging from whatever he had in his hands, I suppose. I thought it odd that he hadn’t intended to introduce himself at all. He answered “Yeah,” and kept walking.

I know nothing about Howdy Doody. Nothing of how he lives his life or of the good works he’s performed during his time here on earth. I still don’t. But in that moment, me in my chair, he with his back to me, with his faux-hipster black frame glasses, graying soul patch, balding head and wearing something akin to those loud, baggy pants that even chefs, gym rats and MC Hammer stopped wearing in the nineties, he struck me as the archetypal Austin slacker-turned-grownup. At least five years my senior, I was wagering. I’m no teetotaler and may or may not have lived through an embarrassingly late-in-life rockabilly phase (complete with facial hair and permanent ink), but now my mind seethed at the thought of how somewhere in Howdy Doody’s crappy apartment a bass guitar with some kind of decal on it leaned in a corner beneath a Raging Elf gig poster announcing a show at Steamboat. The old one. It was tacked to a jaundiced wall in a room with a futon* where the stale anticipation of another gig one day hung in the inert, musty air. This clown was tasked with providing infants in an intensive care unit with controlled, adequately mixed and delivered air to breath and his respectable career had become his enabler: was but a means of paying some bills, filling his bong and otherwise keeping an undead dream on life support. ( * I once owned a futon for way too long in life.)

[Was there anything I needed or anything he could do, or. . .]

“Well you’re job for one thing. I mean it’d be a place to start. . .”

He laughs like I’m joking with him and I go into a slower, more deliberate explanation of what I’d been trying to relate to him earlier. I tell him I’m trying to give the benefit of the doubt, since he wasn’t in the room to observe it for himself. I’m trying to tell it better this time. When it’s his turn he gives a canned and tepid explanation of certain elements outside of his control, of the room temperature and the machinery and the nature of compressed oxygen. While talking, he’s going through the motions of changing out tubing, pure busy work intended to appease the needy bundle of nerves before him in the moment; honor his word to the young doctor that he’d go back in and make an honest effort at appearing competent. He does not make eye contact.

I caught the tone instantly, wasn’t having it. I was beyond irked. I don’t know what I said next, but I’m pretty sure I cut him off, said that he’d done what he’d been told to do and that he could go. And he did.

_____

And then he walks back in about ten minutes later. Back to try something different with his machine, do something he hadn’t thought of earlier. Kicking it up a notch. I tried to set a new tone. I explained that, you know, this is a tough place to be, and that we wanted to be on – Good – terms with the people that were charged with the direct care of our daughter when we were not within sight. And when we were, for that matter. That we weren’t fussy people, here to pick fights, just. . .

He forgivingly cut me off, relieving me of the necessity of further explanation. His back was still turned.

“Hey, man, I’ve had kids in the hospital before, believe me, you don’t have to apologize. . .”

“Not apologizing. Don’t misunderstand. Given what your job title is and what it is your paid to do, your reaction to what I described to you was not nearly equal to the situation. And I’ll say the same to other people when I have the chance.”

He, again, laughs along like I’m joking with him. And then I understand that his laugh is the laughter of derision. Obviously, I just don’t get it.

I don’t push it. This is about as close as I get to a confrontation these days. It’s always behind schedule and generally anticlimactic. But I don’t engage unless I know that I’m right and that Party B knows that too, and even then rarely. And anyway pride does funny things to people, blurs the margins, and even when in the wrong and called out most of us will respond with either a dumb face and a plea of ignorance or maybe a little audacious reverse accusation. Or else it’s artificial laughter intended to mock. It’s all right. He has a boss.

______

A little later the sweet nurse is back in the room. Like the doctor before, she is kind of standing watch over me. She can sense that I’d had the weeping episode and was still, in many ways, upset and out of sorts. I’m venting about how this keeps happening, me, these confrontations. She’s trying to put me at ease. My voice is not itself. It travels up through a parched gullet and comes out flat, low-volume. Fatigued.

I ask if there is any possible way I could have just a small drink of water.

“Have you been in here all day? And haven’t left for a break? Oh, my – Well, drinks aren’t usually allowed back here, but I’m going to go get you something.”

She brings me some water.

 

III.

the Routine

 

I drive the girls to school after breakfast and then maybe go for a run while Missus showers, dresses and pumps. When I get home I call the NICU and wait to get Lucy’s nurse on the line. When I get the nurse on the line I identify myself and, as seamlessly as possible, volunteer our numerical password. A necessary stumbling block in our short conversation. Each morning I call to ask the same two questions. We wake up wanting to know the answers, but should wait until we know the new shift is on and settled: (1) Weight. Did she gain or lose. (2) Feedings. How much she took by bottle. We’ll be along in an hour or so, but this call does more than quell our curiosity. It’s to let It’s to let them know that we’re engaged and that we’re on our way. Sometimes we take a Starbucks order for the nurse.

We are terrible people.

Most days we don’t arrive until 9-ish, a full half-hour after we could. Sometimes later than that. Missus is no diva, but prefers not to go around in sweat pants and t-shirt – she dresses. Does her hair. It makes her feel better. She has to pump twice before we leave. That takes awhile.

I don’t sprint to the hospital after dropping the girls at school, getting there right at eight-thirty for the first opportunity to greet Lucy, post-shift change. I go running. I jump in the pool before showering. We drive through Starbucks for creature comfort before “heading in”. These are small things, selfish things we do to make life tolerable during this race, this grind for which there is no fixed finish line. On a St. Elsewhere NICU brochure, the header literally reads: “It’s not a race. It’s a marathon.” A tired mantra that needs revision. By the second week of our tour I decide that it should read: “Every DAY is a marathon.” Hospital time crawls at an unfair pace, and add to that the ups and downs and moving targets and new concerns and changing realities and conflicting opinions, the more I feel satisfied that this is no exaggeration.

______

We pass hours sitting beside each other in a small room that becomes cramped when two not very comfortable chairs are brought in. We speak little, but some. For a time, before Lucy’s oxygen saturation issues work themselves out, we are on pins and needles. There isn’t an interlude of quiet lasting longer than a few minutes. The monitor alarms almost as frequently as the work of blinking eyelids as her levels dip below where the machine is set to alert the nurses in the next room. Very often it’s a positional thing, but not always. This goes on for days and days.

One day in particular, early on, I was holding Lucy, who was sleeping, when the monitor went from alerting that her levels were low (as per usual) to alerting ASYSTOLE at a higher frequency and volume. I know that the nurse’s station is less than fifteen feet from our door and that they have a monitor there that reads what ours does. I know that at times they are in other rooms, checking on other little patients; they get busy. I, like an extra in a television miniseries, for the first time in my life loudly say “NURSE” my heart beating wildly while trying to maintain a cool countenance.

In only a moment Supernurse is there, silences the alarm. We inspect the lines, we inspect Lucy, still asleep and so small it’s difficult to see the rise and fall of her tiny chest or hear her breath. All is well, confirmed via stethoscope. Supernurse leaves. Some minutes later it happens again. My baby is in the hospital because she has holes in her heart; in the ten or so days since her birth I’ve been watching and listening to these monitors. Never before then had I seen ASYSTOLE on her monitor screen. I know what the word means (syn: cardiac arrest) and I take nothing for granted. Again: “NURSE!”

Supernurse calmly walks in and goes through her motions and while she does this she calmly reminds me, reassuringly, that she has a monitor right beside her station that sees what I see. I reply, just as deliberately, “It said: A-SYSTOLE.” I say this as calmly as I can, but in a way that’s supposed to let her know that pretty much anytime I read that word on the monitor she is going to hear my voice. But I can tell that as reasonable as I think I sound, I am still perceived as a stressed out parent; a problem to deal with; part of the job.

_____

Sometimes we eat lunch in the cafeteria. Usually we bring a picnic lunch of grapes and sandwiches, small bags of chips, or maybe Triscuits and chicken salad. We eat quietly in the courtyard. We pause first, holding hands, and will say a prayer for Lucy and for her doctors and nurses and for their well-being and clarity of thought and of mind and of communication. We thank Him for our very blessed lives and for the support that we have and for the love that we share and for strength in the knees and in the back. Of heart. We stop at ice machines along the way back and refill water bottles which we hide in Missus’ purse; ice machines are a good long walk from the NICU, where drinks aren’t allowed inside. We take turns holding and feeding Lucy. We hold her almost always while we’re there, trying to compensate for the nighttime hours when we’re not. We greet Lucy’s nurses, doctors, therapists. We greet family and well-wishing friends, church pastors. Their visits are welcome respites from the grind of hospital time.

_____

Our NICU experience lasted thirty days. That’s five at Hometown Hospital, the rest at St. Elsewhere. We’d been brought to St. Elsewhere for an echocardiogram. That done, there wasn’t any going back to HH, as more of them would be done at intervals. At that time, discharge hung on room-air oxygenation. Whenever Lucy could demonstrate strong, better than ninety percent room-air oxygenation for a few days in a row, along with consistent weight gain, doctors told us she’d be ready to go home. Her hallmark ability to feed, a source of beaming pride which had so pleased everyone since her birth, she still had going for her. For a time.

What we would observe during our first two weeks at St. Elsewhere were the two inverse trend lines of Lucy’s feeding ability and her oxygenation progress. We saw her ability to oxygenate improve slowly, incrementally, over these two weeks. Each day they would back down the level of oxygen going into her air mixture by a half, sometimes a full litre, and her saturation level would maintain. An upward trend line. Once, about one week in, they tried her on room air to see how long she could maintain acceptable oxygenation all on her own — nearly eight hours. Long enough for huge hopes to form. But by the end of the day the monitors were back to their irksome work and when the cannula was strung back across her face it was agony. Still, the improvement continued.

By her fifteenth day of life Lucy no longer wore a nasal cannula. HUGE milestone. Meanwhile, the amount of milk she would take at feedings had begun to dwindle just as slowly. Painfully slowly, but perceptively. We had seen the predictable dip and recovery of the birth weight. Then she lost some. A downward trend line. She’d gain back a little of that and then flatten out for a few days before losing some more.

At some point in this, a near-breakthrough: Since birth, Lucy has been feeding to the clock. Every two hours. Depending on how much she took at her last feeding, she sometimes starts squirming, grunting, well before her next feeding time. Sometimes when we ask if we can feed her before it’s time, we get a look of apprehension from nurses. This isn’t her regimen. Her doctor-written regimen is feeding to the clock, not to hunger. Her cues had not been reliable enough for feeding to hunger. So we have to hold Lucy as she grunts and squirms and our hearts ache as we hear her first cries. She never cries, but now she’s crying because she’s hungry, uncomfortable.

One day, after days of this, off-and-on, Supernurse notices Lucy giving cues. She wants to feed. Lucy’s getting upset, wants the bottle. Attentive Supernurse takes action, goes to find Doc of the Day, retrieves him. She makes her case for changing Lucy’s feeding model for feeding to hunger and he agrees. Changes the order on the spot. Relief. We like Supernurse. We like her very much. We feel exhilarated by the change; at last, a change. Surely now, we will see growth, weight gain. We are wrong. She only takes very little, and then a little less. She gains next to nothing for days and days and days.

By her twentieth day of life Lucy had traded her nasal canula for a nasal feeding tube. We’d resisted the first mentions of the feeding tube. Pleaded not to go there until it couldn’t be avoided. It would have felt like a giant leap backward, we reasoned, selfishly. We’d seen her feed. We knew she could. We didn’t know why this was slipping away but had faith at every new feeding that this one would mark her turnaround, rendering the feeding tube discussion wholly unnecessary. At first, they empathized, stood down. In the end, though, they did it during the night shift, and there was no phone call. We arrived one morning and there it was.

_____

From then on we fed Lucy what little she’d take by bottle before sending the remainder through the tube. She was given twenty minutes to bottle-feed. What went into her by mouth happened almost entirely in the first two suckbursts, strong and prolific. But nowhere near enough. After that she either bit on the nipple or squirmed away. When, as would happen occasionally, Lucy began to show renewed interest in the bottle at the end of her twenty minutes we would ask if she could have a little more time (just five more minutes?). Usually the answer was no.

They would pour the remainder into a large syringe, which they would then fit into a pump the size of a small car battery. The pump would push the remainder of the bottle, usually close to two-thirds of the two ounces, through her feeding tube at a rate of eighty cc’s per hour.

Nurses would reason, correctly, that this activity, feeding, is a sprint, an anaerobic tax on her sick heart, and that twenty minutes is all she can take. The Father would once try and reason, unconvincingly, that using the comparison to exercise, wouldn’t the building of stamina factor as a priority? All They (Mother and Father) selfishly see is that each day on the feeding tube is another day of hospital time tacked onto the back end. Mother and Father want Lucy to have every chance to prove her bottle-feeding prowess, show that it’s on the mend — just five more minutes? All They receive for their efforts is frustration. Even on her thirty-three calorie, fortified breast milk mixture (compared with twenty calorie straight breast milk) Lucy’s growth curve remains flat for a baffling and uneventful two weeks.

_____

Eventually, someone, a nurse perhaps, off-handedly mentions something about the distant possibility of sending Lucy home with the feeding tube. If we were living in a tomb — cold, still and ceaselessly dark — this comment fell on our ears like a warm shard of sunlight on the skin: An epic breakthrough. They (Doctors) don’t like doing this unless there is no other reasonable course. They would rather wait a week, two weeks, to see bottle-feeding improve than entrust hastily trained parents with the placement and management of a feeding tube. There is the measuring to consider, getting the end of the tube where it belongs in her tummy; there is the matter of verifying that the placement is correct, which can be done in a couple of ways. There is the matter of keeping the tube still while securing it onto the cheek with the use of tegaderm, an impossibly thin and fussy tape used just for these purposes. Then there is the feeding itself, and the effort to improve the bottle feeding (you can’t go straight to the tube, must give her the chance) while staying on top of feeding times with or without the benefit of reliable, natural hunger cues. Lucy still needs to be fed every two, two-and-a-half hours, and she might let you know this with the typical grunting or crying. She might not. You may note quivering suckle reflex of her tiny lips if you’re paying close attention. You might not.

We do not hesitate to let Them know that We are more than okay with bringing Lucy home with the feeding tube. They know what I do for a living and are more comfortable with the idea. Fortunately, common sense weighs in some when it comes to certain things. They see two reasonably intelligent, hands-on and attentive parents: points for that. One of them is an EMT and has some distant familiarity with this kind of thing: points for that. Still, let’s give her a little more time, They say. They will train us on tube placement in the meantime.

_____

We leave in the hot evenings and if it’s a weekday we drive straight home and have a later-than-usual dinner with the girls and my in-laws. My father-in-law is sitting with the girls at the table and their homework is finished before we walk through the door and into the warm smells of whatever my mother-in-law has on the stove. The girls eat in their pajamas, hair still wet from the bath. Often times we’re eating a one-dish meal brought to our door by a fellow church member and other times it’s a full-on banquet, a four-course meal with dessert. We marvel and are humbled by the outpouring of support from these kind people, some of them near strangers, who have signed up, stood in line, to alternately bring us a home cooked dinner, to remove the burden of at least that one thing from whatever and all else is on our minds for the time being. We wonder how people do it. Without all this help.

We pile on the king size bed that the girls share in their room that is too big not to be shared and we read books and laugh and tickle and may lay with them past lights-out telling short stories, some of them conjured on the fly and out of the school night dark, some of them old reruns. One or both of us may fall alseep in there with them.

If it’s a Friday or a Saturday, Missus’ folks will often suggest we have an evening out. No need to rush home, y’all can go out to dinner or something, if you like. This is too tempting a kindness to pass up and often we acquiesce. So we go to our favorite place and have dinner sometimes, and that’s nice too.

 

 

IV.

Tabatha, and other scenes

Tabatha

 

At some point we started to notice this person who shared our movements, or at least our routine to some degree. We’d see her in the waiting room at times. We’d share an elevator, pass her in the hall — a natural extrovert with a beaming personality and a winning smile, always smiling. To see her is not to know her, not exactly, but to want to hang out in her world for a time. Missus and I comment to each other how remarkable she seems even before we know who she is, why she’s there.

We meet her soon enough, trudging away together from the NICU and making toward the parking garage at shift change; plenty of time for the light getting to know you stuff, heaven knows. She’s Tabatha. She has a days-old son, her only child, who has been on a ventilator since birth. He was born with a rare disorder that impedes normal muscle growth. The doctors don’t know very much about this. They’re still finding out about it; it’s that rare. He was born without the implicit strength it takes to breath in and out and the innate, cellular ability to acquire that strength. It only takes hearing this to know that you’re speaking with someone standing on quite another plane from where you are.

And there she was: The person we knew was out there; the one we knew we’d meet. One who had not only been given a worse prognosis than our own, but about the worst possible. There, of course, were other babies, other moms, dads, other stories in this hospital, on this floor, in this NICU; no doubt a large hospital is rife with them. But we wouldn’t meet these others. We would meet Tabatha. And while we wouldn’t come to know her well, Tabatha would become our touchstone, our almost daily reminder of the reality that ours already was a success story.

You’d see Tabatha engage nurses outside the building, they walking in to work while she was leaving for home. She’d stop them like they were old friends. You’d overhear her tell them, “We got a diagnosis today,” and then you’d miss the rest because you had to keep walking. You’d see a doctor walk up to Tabatha in the waiting room after some test or procedure and you’d hear her say with a tired smile “How’s ma’boy?” in an near-playful way, as one mother might ask another over the telephone, checking in on her shy little man, away on his first sleepover. You’d comment to her about her smile, and how it’s always so present, and how inspiring that is. She would say Thank you and offer, almost in jest, “I cry at home.” And she says this like someone telling you that they add just a smidgen of tartar to their biscuits, and that’s why they come out just so – smile, wink — only she isn’t kidding.

I once saw Tabatha with her husband in the waiting room. It must’ve been a weekend. She’d explained to us that her husband worked at a small startup and that while his employers were being very supportive, it was understood that he had to work a lot. She was telling him that they took their son off of the ventilator for a short time that day to see how he would do. It was a big test. A big deal. It did not go well. She quietly told him that she never wanted to see that again, her head on his shoulder, and I see her for the first time more than a little subdued.

It’s possible that I never actually introduced myself to Tabatha’s husband. At least I don’t remember that I did, and I feel like I only saw him the once. The time I saw him I was sitting in the waiting room by myself and they were in there too, among family. He’s like her: tall, gregarious, and as I watch them interact I’m thinking to myself “this guy’s doing it right.” Whereas I go around on edge and butting heads with people this person appears almost at ease, like he’s in the stands at a baseball game. Just a day with family. And then I get it.

He’s being strong for his wife. His being at ease puts her at ease. He goes to work every day. Has to. He grinds it out at work while she grinds it out the hospital. This is their arrangement, their predicament. Is it easy? Hell no. But he wears his big boy pants, wears them well, and he makes his wife feel good that they’re together, when they’re together. And this time most certainly is about her. “Don’t forget that,” I say to myself. I pat myself on the back a lot for being a good husband and dad and then I’m watching this guy – works every day; may or may not bring his son home from this awful place – and not only is he doing it better than I am but he’s killing it. A good and overdue check to my ego. So probably I was too intimidated or ashamed of myself to initiate an introduction, but that’s how it is.

 

{ Side note: On Work }

I went to work it must have been ten or twelve days in — about the time I accepted and understood that there was no way of knowing how long Lucy would be in the hospital. I go past St. Elsewhere on my way to work so I parked illegally in front of the hospital and went up to the NICU at about six in the morning. It didn’t seem right to drive past and not go in. I bribed my way past the desk nurse with a large travel container of coffee and I scrubbed quickly and went in to see her. I spoke some with the night nurse, close to the end of her shift, and asked her the questions, the same two questions I called to ask each and every morning before we drove in. I leaned over her bassinet and whispered things to her, prayed with her – no need to pick her up and disturb her sleep – and then I kissed her and left. Had to make it quick because I wasn’t supposed to be in there.

I got to work and did my best to act normal. The people I work with asked all the usual questions, offered their congratulations. Some of them had seen the updates I’d posted on Facebook (easier than picking up the phone and calling all your family members) and were surprised to see me there; some of them hadn’t. The ones who had tactfully asked the questions, making small talk. Yeah, she’s still in the hospital, it’s going to be awhile, no big deal. Down syndrome, yes. Yes, Missus is doing much better now, thank you. She was discharged after only three days, unbelievable. A warrior. Yeah, lost a lot of blood. Scary. Yes, yes. Probably sometime in the fall when she gains some more weight. Open heart, yes. We’re still learning about it.

A few hours into my shift I called a station on the phone, sort of randomly, and got a familiar voice. I didn’t know who was on duty when I picked up the phone but it was my old crew, at my home station, and the familiar voice was a man I’d worked with for years once upon a time, and who had, among others, sort of mentored me: An old hand and one of those cranky, hard-headed, fifth or sixth generation Tex-Germans. As best I can remember, this was his side of our short conversation. He speaks in a low, gravelly Texan drawl.

“How’s that baby, boss?”

“How’s Momma?” (he means Missus, of course)

“You need anything?”

“What’chew doin at work, man?”

“You got sick leave, dontcha?”

And that was all it took. I thought to myself Dammit, he’s right. I do have sick leave. I do have vacation. I’ve got plenty. My employer is a big city emergency service department and there are a thousand of me. The city doesn’t miss a beat when I don’t show up and work doesn’t pile up, either. This is when I reconcile that any time one of my kids happens to be in an intensive care unit, and any time I have the physical and financial ability to be there too, then that is where I will be.

An hour later I was back beside Lucy’s bassinet and sort of sheepishly greeting my father-in-law, a retired small-town postmaster and Marine whom I think the world of, and who, I figured, probably wouldn’t get it: how I could be away from work so much. I explained, unnecessarily, that I just felt I needed to be there. He reassured me, hand-on-shoulder, that it was only when money wasn’t coming in and bills weren’t being paid that not being at work was a problem, which was not the case with me. So I had his blessing too, and again felt justified in my decision.

Obviously, I couldn’t have stayed away from work indefinitely. And while I had leave saved up, enough to weather something like this, I don’t know that I would have exhausted all I had – you’ve got to keep some in the bank for these emergencies.

While my employer hasn’t changed, presently, I don’t have my cool, masculine job. I hold down a chair. I also went nearly twenty human Earth years once without really thinking about sports, so while I may not have the Man-cred to say something like this I’ll say it anyway:

Guys, if you’re going through a family crisis, don’t get caught up in the macho, male-ego “I gotta be workin” bullshit. By all means, pay your mortgage, feed your family, work so you can pay those medical bills. But if you’re blessed, as I am, to have the kind of job that affords you the ability to be present and with your family in the midst of a catastrophic event, then you have my blessing — you have a hard working, ex-Marine and retired postmaster’s blessing; you have a square-fisted, workadayTex-German fireman’s blessing — to use your leave and spend it with your family. Just spend it well, think about guys like Tabatha’s husband who can’t be there like you. Wear your big boy pants to the hospital, put your wife at ease, and be grateful. Do these things and you won’t be cheating anybody. End of soapbox.

 

(Tabatha, cont’d)

We don’t know Tabatha. All we know about her and her husband is what’s been said here, and that she had been working at one of those probably adorable and trendy Austin bakeries, and that they specialized in all-natural goodies. She told us she didn’t know whether she would go back to doing something that to her seemed in-a-way frivolous now, after what she’d been living through, so grave, so far from over.

We didn’t keep in touch. I regret it. To this day we have no idea whether she and her husband brought their son home on a ventilator or whether they brought him home at all. While Missus and I are not exactly reclusive or unfriendly, neither are we exactly the kind of people that go out of their way to make new friends. We’re boring like that. Comfortable in our rut. I wish we’d checked in on them, stayed informed, offered some support. When our discharge papers were finally signed we didn’t ask questions and we didn’t look back. I wish they knew how they affected and inspired us both. Short of that, I just wish we could hang out in their world for time. I hope it’s more peaceful there now.

 

 

Other Scenes

On the day Lucy was moved to St. Elsewhere I came into the room and found Missus fighting back tears, speechless. I gathered that our we’ll-just-say “seasoned” nurse had been handling Lucy, maybe trying to change this or that, and in a brut effort to position her or keep her still had slammed Lucy’s little head down onto her bassinet. By the look that was still fresh on Missus’ face it must have been pretty abrupt. Lucy wasn’t in distress, so I didn’t know where to go with it. Honestly, I probably reasoned out of pursuing it by telling myself that it must have sounded worse than it was. The problem with this logic is that, historically, Missus doesn’t overreact. Again, I should have stepped up to the plate, if only to back her. What bothered her nearly as much as seeing her baby’s head bluntly knocked around that way was that the nurse’s play was to not acknowledge what had happened. Didn’t say a word. Went on about her business and left the room.

_____

St. Elsewhere is very much a pro-breastfeeding outfit. It’s all over the walls of the labor and delivery floor, in the NICU also. Missus is trying her best. It’s going about as well as it did with our first two, the breastfeeding, which is not great. It just doesn’t seem to come out and she was transitioning to the pump. One particularly helpful lactation nurse was certain that she could alter this course. Whereas the other lactation nurses would talk, ask questions and offer suggestions from a relaxed position on the other side of the room, this woman was of a different school and methodology entirely. This lady played offense. I excused myself from this session, an environment I felt I had no place in. It was getting handsy. Missus later recounts the experience for me, wiping a solitary tear, laughing or crying it’s hard to tell which. These were her words:

“She milked me!”

_____

Late at night, possibly early morning: I stand beside the bassinet witnessing for the first time the nightly bathing ritual. Performing the ceremony is an elder, street-weary, dare-I-say weathered night nurse with something like thirty NICU years on her face. It was like watching the individual workings of a cog in a vast and vintage instrument of war. In every way she performs the task like someone working on a line. Pan out and there might have been thousands of her standing shoulder-to-shoulder, each of them a working widget in a giant factory where all the babies of the world are bathed. All there lacked was some sort of lever coming down from above for her to jerk periodically. I waited for a whistle to blow, expecting that, hearing it, she would abruptly halt action, mutter something about a cigarette, and laboriously trudge off to a waiting cup of strong black coffee, not particularly fresh. A union break. It was difficult to watch. It felt a bit like seeing the sausage made.

_____

Tabatha in repose: On the floor outside her little patient’s room, back to the wall, knees to elbows, head in hands. Hair spilling out through her fingers and down nearly to the floor.

_____

Shortly after our arrival at St. Elsewhere we stand around Lucy while one of the doctors performs some sort of inspection: Missus and I on one side of the bassinet, Supernurse and a doc on the other. Lucy is squirming and Supernurse says something about a pacifier. I offer that Lucy doesn’t seem to favor them. Neither of our other two daughters took to them and up to that point Lucy hadn’t either; hadn’t really needed any self-soothing since all she did was sleep and eat. Supernurse found something to give her – a pacifier or maybe it was just her gloved finger – and as Lucy’s mouth went mechanically to work, calm and still now, I receive the full and direct, victorious stare of Supernurse, her head slightly tilted. It forgivingly speaks these words: “You see? You have only been doing it exactly wrong all this time. That’s all right. You didn’t know.”

_____

At a point where Lucy’s breathing is no longer a concern, tube feedings are an accepted reality, and growth is all that is being monitored, we are moved out of our isolation room in Bay 5 and over to Bay 7. Bay 7 is where the noncritical little patients are monitored and we celebrate this; we celebrate this as both a literal and a figurative giant step toward going home: the entrance to Bay 7 is only ten feet from the entrance, and EXIT, of the NICU.

We only celebrate for a minute. As we We size up our new environs we realize that we’ve moved from the plush Hilton on the hill to the Budget Inn on the interstate. Our private nursery is already a fond, distant memory and we are now in general population, eight feet from the next bed, only a thin green curtain on a ceiling-mounted track for our privacy and self-enclosure. And here is where we’ll be. Until.

_____

Tabatha seated alone in the cafeteria. She receives some kind of flower daily and today keeps it with her at lunch. She will sometimes come dressed, other times dressed for comfort. Today she’s made the decision to dress and dress well; she’s done her hair and looks radiant, the way women do when leaving for vacation. She might have been sharing an early cocktail with her husband at an airport lounge, flipping through magazines, no visible care in the world. Seeing her there, seeing the placement of the vase, it’s as if he’s beside her now, seated at her elbow.

 

V.

Discharge

i of ii

Our final ten days in the St. Elsewhere NICU were pockmarked alternately with no news, good news, and foil. By that time Lucy’s discharge hung only on consistent weight gain. That was it. Three consecutive days of no less than two ounces of weight increase per day was all that had been standing in the way of our bringing Lucy home ever since her nasal cannula had come off and they’d dropped the feeding tube.

By the time we had been moved to Bay 7 we had learned several times that over the course of a night Lucy had gained, sometimes as much has half an ounce, only to learn the next day that her weight remained exactly the same or that she had lost as much or more.

It became more vexing as the occasional second consecutive day of weight gain entered the picture. This is when the nonchalant utterances of “home” or “discharge” would sometimes escape the lips of a doctor or nurse. Not wanting to get presumptuous when hearing the words, Missus and I would only allow ourselves quick moments of eye contact (eyebrows modestly raised), further tempered with half-smiles — must only accept this as progress and not start reaching for that one-way ticket to Home.

Even still, an unmitigated eye glimmer would occasionally betray our efforts for prudence and posture and we would share the unspoken instant of glee. Sometimes the instant would linger vaguely until the next morning when, not bad, but joyless news with regard to Lucy’s weight greeted us, and the cycle would reset.

Time had slowed to its leanest form and the minutes paid out like hours, perhaps because every day held the feeling that we were very close. Perhaps it was because Lucy’s bed station neighbored a little patient who was in an awful way. Usually he was not attended by a parent, though nurses would come and hold him when they could, which was rarely, and the poor child would grunt and squirm and heave his labored, liquid breath and helplessness hung heavy in the air and it was back to the days of pins and needles as the poor little man’s monitor alarmed as frequently as Lucy’s once had. He was many months older and bigger and remained propped up at forty-five degrees to allow gravity to help drain his lungs. Often, his body would inch slowly, face first, toward the railing of the bassinet until eventually his head would dock awkwardly against it, the rest of him bent and contorted.

We would look around and just when we thought no one would come, a nurse would round a corner and reposition the little guy, sometimes tenderly, other times as if an inconvenience had occurred. At least once, Missus herself, unable to stand it, would walk over and begin to make his adjustment before being rebuked from across the room with “I got it, I got it,” and the hard, heavy footfalls of an annoyed nurse — not enough of her to go around.

_____

Two days of weight gain and then none. One and then none. Another of none. One day of weight gain and then another; meaningful weight gain on these; a solid, upward trend line. No reason not to think the next day will bring the same. More talk of “Home.” More talk of “Discharge.” Doctors and nurses with more certainty to their aspects when these words are spoken. It’s beginning to feel real. We are told to be sure and have the car seat ready when we come the next day. It feels very real. The next day will be The Day. It’s what we’ve been waiting to hear for nearly a month. We start making phone calls. At home, we share the happy news with the girls, with my in-laws. They will get to see Lucy brought home; they too will get to go home.

As we make our trek to St. Elsewhere on the morning of The Day, we know that certain unspoken, planned works are in-motion, anticipating Lucy’s homecoming. Works involving helium and plastic and streamers and hand-painted pictures and banners welcoming her to her forever home.

When we approached Lucy’s bassinet and the nurse that was with her, we were met with the news that, yes, she’d gained a little weight, which was good, but as the nurse flipped through her log book – “oh, darn” – she’d spiked a little fever overnight that got up to — “what was it?” – one hundred point seven. Above the mark, not low-grade. They’d needed to give antibiotics. And while the fever had come back down, and had stayed down, naturally they wouldn’t be able to discharge within twenty-four hours of a fever and antibiotics. Hospital protocol and all.

“Oh. Awe. And y’all were supposed to be going home today weren’t you? I’m so sorry. Shouldn’t be long now.”

Again, we start making the phone calls. Today will not be The Day. The balloons will go back in the closet.

This is when I begin scheming to form a new republic within the long, austere lines of St. Elsewhere. I want to be elected leader of this new and radical micro-statehood wherein my first wild-eyed, post-revolution hour in office would be spent at the task of furiously scribbling, pen in tightly balled fist, a manic and airtight mandate placing an immediate and unmistakably worded stop-use injunction on the words “Discharge” and “Home.” The words are to be spoken aloud never again save by the lips of a licensed doctor of medicine, the treating licensed doctor of medicine. And only then when he/she is reading from authentic Discharge Orders, on official hospital letterhead and bearing said treating physician’s bona fide signature, notarized. And then not until the ink of said doctor’s signature is as dry as fired clay by the hot breath of prudent time. Then and only then should the words “Home; Discharge” meet with the ears of the eager parent: Joyously; Irrefutably; Reliable as the tolling of church bells on Sunday. Not an instant sooner. Not ever. Forever more. Henceforth and forthwith. So be it. By the power vested in me. Hallelujah and amen.

But we feel too defeated for insurrection today.

 

ii.

The next day would be The Day. And it was. And even though it was, and even though we were fairly certain it would be, we approached it cautiously, timidly. When, on the morning of, we inquired about Lucy’s last weighing, we feigned indifference to the point of near boredom. We did not call ahead, and we did not make a B-line for the logbook when we arrived; we gave it some time. Just another day at work for the nurse, who did not volunteer the information right away, maybe didn’t know of our situation, and we waited, made small talk with her, and tried to prepare ourselves to hear anything.

When at last we asked the question, it was asked parenthetically, as if it were an afterthought — neither here nor there. But the answer was a good answer, and the number was a good number, and we smiled a little and waited to see what would happen next. We didn’t anxiously await the next words out of the nurse’s mouth. We did not want anybody to say anything further. The less that was said, the less likely it was that disappointment would rear its head.

We did not ask when the doctor would be about, or which doctor. We did not ask if she, the nurse, thought today would be The Day. We had promised ourselves that we would allow this day to happen on its own, in its way, and that only when Lucy was in her car seat, in our vehicle, and our wheels were pointed lastly toward Home, then we would celebrate. We had this. God had this. And so we waited and let The Day come to us.

_____

When the Doc of the Day was through speaking, we stared back at him, and he must have caught a whiff of anticipation. It was all the usual speak of an ordinary parent/doctor conference in the NICU, observation and review, except that entwined in the usual stream of information was talk of prescription medicines and pharmacies. Even as he stepped away to call in Lucy’s prescription, we remained nonchalant. We would presume nothing. When he returned and told us that Lucy’s order had been successfully placed and would be waiting for us, we nodded blankly and after a moment I asked, “Great. So we’ll be picking that up. . .”

“Today.” He paused, comprehended, and then his face changed and he offered the words he then knew we’d been waiting patiently to hear. It’s well after lunch by now, and still no one has said anything definitively, but he does so now, nodding matter-of-factly as he says, “I’ve already written your discharge orders.”

We exhale.

We share a glad moment.

I shake the doctor’s hand.

We let it sink in.

We hug and smile.

It’s real.

_____

It seemed to be Going Home Day in Bay 7. The area was buzzing with activity in preparation, not only for Lucy’s discharge, but for that of at least two other little patients as well. In our entire Bay 7 experience, we’d seen departures, but never had we seen as many car seats, so many smiling faces, so much merriment. The place took on a different energy as nurses darted this way and that, making sure parents had all their necessary marching orders and medicines and they came and went with swag bags of one sort or another, and papers and packets and administrators with their folders and clipboards and nutritionists with their care and feeding instructions and complimentary formulas to get everyone by until they could get home and get settled and get to a store.

As our own docs, nurses, administrators and helpers frequented and left our bed station we slowly became aware of the eyes of another mother across the room. We’d seen her before, exchanged nods and smiles, but had never actually spoken. They mostly kept their backs to us, seeking their own sort-of privacy, just like we’d sought ours. We weren’t sure what to make of them. She was older, seemed old enough she could have been the baby’s grandmother and maybe had others; or perhaps she had brought a very late-in-life pregnancy to full term.

He was not young, but was noticeably younger than she was. Even though he wore the baggy shorts and shirts and sneakers and wore his hair in braids, he still looked aged. It looked like lifestyle might’ve taken its toll on their bodies, both of them, blurring age and appearances, same way it does for people who take exceedingly good care of themselves. Was he the baby’s father or the woman’s son? Husband? Live-in? It was hard to tell. He leaned back in his chair and muttered things occasionally, letting her tend to baby in all ways, but he was there and there often. There for baby, there for her, simply helping pass the time, we didn’t know. All were possibilities. Missus and I are naïve enough that we were surprised by how often, in the hospital environment, we were asked by a nurse or therapist, “Are you the mother? And are you the father? And are you married?”

The woman was alone that day, and twisted in her chair, observing the activity at our bed station and occasionally cutting eyes toward other bed stations, taking in all of the “going home” liveliness. Whenever our eyes would meet hers she was wearing a kind of happy for you look of approval, her eyebrows raised high. She wanted us to notice her, and we smiled solemnly back.

As time passed and families left and when finally it was our turn to secure Lucy in her car seat, the woman’s face (she still faced us) had morphed from one of plain kindness into one of near confusion. Your heart could not help but go to her. I swear the halogen lights were out above her head, and whether that was malfunction or intentional (for sleeping baby’s sake) it hardly changes the image: Aged woman, all alone on her gloomy end of the ward, watching mothers and babies leaving for home and family and nursery, trying to look happy for them but failing. Missus recalls hearing the woman say aloud, maybe to herself, maybe to whomever was there to hear, “Everybody goin home but us.” The words need not have been spoken for the way they permeated the her immediate presence, curling up and around her and pooling in a thick, wan cloud above her chair, captioning perfectly her sullen image.

_____

In the busy breezeway and roundabout in front of St. Elsewhere I wait outside our minivan with hazards flashing, waiting to see Missus emerge from the sliding doors, bringing our baby out into the world for her first honest dose of sunlight. I stand beside the minivan at ease, feeling good, hands in pockets, not for warmth but for comfort, thumbs out, shoulders relaxed, waiting there facing the building for several minutes.

Directly, from across the congested tract of asphalt, vehicles vying for access to both the parking garage and street exit, a man’s face somewhere throttles a forceful “SIR!!!!” right at my head. I look north and from forty yards away a young, bearded valet in a sedan stares back at me with his best are you stupid face.

“COULD YOU MOVE YOUR CAR??!!”

His inflection is more like that of someone picking a fight than asking a question, like you’d say or shout at someone who’d just parked in your kitchen and now stood grinning, oblivious, reaching past you to help himself to your bacon.

I’d parked adjacent to the valet stand; the only blank spot in the area I could find. I look back confused at first, and then incredulous, and then I’m keenly aware of the scent of violence on my palate. He’s glaring right at me from the window of the sedan; positively glaring, wanting to make a show of it; put his command presence out there, I suppose. I’ve never been in a fistfight in my life, still haven’t, but maybe never wanted one more. There was a long moment of rueful eye contact, a stare down, and I wanted to do things to this kid, ruin his day the way he’d just ruined mine. Nothing would come of it but it was perfect, really. A fitting end: One more incident; One more confrontation. An appropriate valediction from St. Elsewhere to me. And back.

Short of violence, I wanted to take this kid aside and explain some things to him. I wanted to explain to him that he was a part of a hospital environment, and that he needed to be cognizant of that, even though his job was to park cars and probably he never set foot inside the building. He needed to understand that he was surrounded by people, dealt directly with people all day, who may or may not be having a terrible day — maybe one in a long series of terrible days; people living in a state of fragility, in a fog that has no beginning and no visible end.

He doesn’t know that today is a good day for me and not a bad one, but he also doesn’t know that today isn’t the worst day of my life, because where are you more likely to run into someone having an exceedingly bad time? And then you square up and accost someone like they were some form excrement because you don’t like where their car sits. Nice, fella.

But all I do is stare back. I don’t say anything even though I know a shouting match would be more satisfying than doing nothing, although not nearly as satisfying as ruining this boy’s clothes in front of his vested buddies over at the valet stand. I stand there glaring until I decide this looks stupid and as I turn toward my car, still looking back, he nods triumphantly, wearing his big boy face, and then drives off like a cowboy to go park someone’s car. Fortunate me. Spared by the beard. I move my car.

_____

We were all loaded up a short time later. Lucy was buckled snugly into her car seat, snapped smartly into its base. Missus was in the seat beside hers. We brought her home wearing the impossibly soft, pink sweater with the hand painted apple buttons and matching hat, even though the day was a bit warm for that. My own blood was still a little warm from the incident with the bearded boy when I pulled out slowly and merged onto I-35 and pointed our tires lastly toward Home. I smiled in the rearview mirror at Missus as I drove away from St. Elsewhere, not for the last time that day.

_____

On the paved walk connecting our porch to our driveway, a paper banner maybe six feet long and three feet high greeted us from the street: WELCOME HOME, LUCY. It was held up by two tubes of PVC cemented into coffee cans, the work of Missus’ closest friend and her fellow teachers. The love that is being shown you even when your back is turned.

Surprisingly, we’d gotten out of St. Elsewhere in fairly short order, and it was maybe three o’clock in the afternoon when we pulled in. My in-laws greeted us, and we took pictures in the front yard, documenting the happy occasion. In addition to the banner out front, Missus’ parents had put out all manner of happy occasion decorum and our home looked and felt positively welcoming. A basket of gifts from Missus’ small group of teaching besties, some of whom she has known since college, contained gift cards, wine, chocolate I’m sure, and a wad of cash accumulate from the donations of school faculty and probably some parents as well. We shook our heads, gracious me.

There were also various pieces of kid-art adorning the walls in various places. The work of students (Missus is and has always been an elementary Art teacher) and Missus walked from one the next, smiling sweetly and fondly at each and making note of the students’ names. Soon, her attention was directed to the center of the room. There, sitting squarely in the middle of our dining room table, was a size-able stack of various sizes of various papers folded in half: Hand drawn artwork and handwritten messages of love and best wishes for their teacher. For her and her baby. One from every student in her school. There were over seven hundred of them. She stood there for the longest, smiling, trying for all the world to wipe away at a steady stream of endless tears; all the while letting them come.

_____

The girls arrived home from school not much later and we spent a long while letting them fuss over their baby sister. Missus’ folks began to talk about heading for home. About this time is when I realize that it is after five-o-clock, and I’m not quite sure when our pharmacy closes. Before I made the mistake of not picking up Lucy’s medicine from the pharmacy on our way home, too eager to get her home, I’d made the mistake of having her prescription called in to the pharmacy nearest us: a kind of local outfit that’s been around forever; they’d just moved to a new location down the road from where we live. The problem with this is that, unlike your Walgreens, Target or CVS pharmacy, this place keeps regular business hours, it turns out. Which posed a big problem.

Lucy takes Enalapril every twelve hours to regulate her blood pressure, to make her sick heart’s work easier; she takes Lasics every twelve hours to ensure that fluid that would otherwise accumulate in her lungs goes in her diaper. My own heart started to beat faster while I was realizing that I might not make it in time. I try to call the pharmacy and get a recording. I know what that means. Father of the Year I ain’t. It’s a bad feeling. I call the St. Elsewhere NICU desk and ask to speak to the neonatologist on duty. This is going to be a little dicey – Lucy is not a patient of St. Elsewhere any longer. Is there anything they can do?

I hold for a bit, anxiously, and eventually the Doc of the Day picks up. It’s the Geico Doc. I remember his voice. He remembers me. It’s his first shift back from vacation, his first day of work since the day Lucy was born. I explain the situation to him, my turn to be embarrassed, don’t know how I could have let this happen. He puts me at ease, says there’s no reason I should’ve thought otherwise; says it’s still the middle of the day, after all. He’ll have two doses of each of Lucy’s meds waiting at the desk for me to pick up. I thank him profusely, repeatedly, and he can sense how eager I am to get there and to have that medicine in my hands. I tell him I’ll be right there, I’m on my way. He tells me “Yeah. Just be careful.”

When I come back downstairs Missus’ folks are loading their car. We pleaded them stay, but they wouldn’t think of spending the night, our first night as a whole family, our new family, together in our home. No, they would give us our space. This is how they are: Others first, always. Never mind the five-hour drive and the hour at which that puts them home. Perhaps they were anxious to be home too. We wondered how we would ever be able to show, to prove our gratitude to them for what all they sacrificed for us; you can only say it so many times and so many ways.

We said our long goodbyes in full accordance with the Southern Baptist houseguest parting ritual: A round of hugs and goodbyes in the living room while the next reunion is loosely planned. Again at the door, more of same. Again at the car. Wait for the honk, waving, as they disappear out of sight.

They were gone, and so was I. And you will believe me, kinfolk, when I tell you that every second and every inch of the way back to Austin and St. Elsewhere I handled that 2003 silver Mazda MPV like a wild-eyed rider on a lathered mount — for all the world like a wounded fugitive piloting a stolen armored vehicle, loaded to the gills with counterfeit cash, unregistered guns and narcotics of every coloring, and barreling toward the Mexican border and freedom with a mile-long procession of black and white SUV’s marshalling the train of a fallen bride’s betrothal gown.

 

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You are currently reading Part Three: Every Day A Marathon (full-length) at On Loving Lucy.

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