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

September 16, 2013 Comments Off on Part Three (v of v): Every Day A Marathon (Tales From the NICU)


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.

(The final installment of Part Three:  Every Day A Marathon (Tales from the NICU) and the conclusion of this piece, Discharge (ii of ii), to be published this Friday, September 20.  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 audience, so your generous clicking is greatly appreciated.  And thank you for reading.)


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