Part Three (iii of v): Every Day A Marathon (Tales From the NICU)

August 12, 2013 Comments Off on Part Three (iii of v): Every Day A Marathon (Tales From the NICU)

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 runningI 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.

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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.

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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.

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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.

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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.

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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.

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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.

(Thank you for reading.  Please check back next Monday, August 19, for the next installment.  If you appreciate this, consider making a small donation to the National Down Syndrome Society in Lucy’s honor via the Lulu & the Lettuce Patch image on the sidebar.  Also, any social media sharing or activity increases the likelihood of this site finding its intended audience, so your generous clicking is greatly appreciated.)

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