Old News: Past Blog Posts

Saturday, January 10, 2015

NICU Repeat Offender

It's the kind of cold that takes 1,000 microscopic bites out of any exposed skin and brings tears to your eyes. The sort of Midwestern weather that cannot be ignored or unremarked upon; igniting conversations between strangers as they attempt to shake it from their bones while they duck into buildings and hold doors for each other. 

I do just that on the parking garage elevator, smiling at a couple's infant who is tucked away in his stroller beneath a pile of blankets and zipped neatly under a winter car seat cover. 

I scurry across the enclosed bridge connecting the garage to the main building, flanked by giant glass walls and on the underside of a large electric train running in a loop past small scale photos of St Louis landmarks. As I pass the security desk, I dig for my week-long parent access badge and secure it to the bottom hem of my hoodie. It's now worn and bent from curious toddler fingers and almost a week of wear. The atrium rises to my right: bright, colorful and showcasing a giant hot air balloon structure. The sporadic clinks and murmurs of people dining on breakfast drifts up into the glass ceiling. I board another elevator and press 5 without much thought, this is day six of my new routine. 

Two giant doors at one end of the fifth floor bank of elevators are propped open and reveal the dimly lit waiting area of the Neonatal Intensive Care Unit. I sign my name in a black binder and lift a phone to request access to the unit. The unit is sprawling and boasts four large 'pods' and several smaller ones as well as a number of private rooms. Within the walls, up to ninety metal frame cribs, warming tables, and plexiglass isolettes cradle unimaginably tiny babies that come attached to monitors via wires and nutrition and medicines via IVs, their breaths either controlled or supplemented by machines through tubes and cannulas. Some of the tiniest and earliest babies lie with eyes fused shut and their tiny wrinkled limbs lying loose and exposed at their sides for the benefit of heaters or glowing supernaturally under blue lights, others (older and chubbier) are wrapped snuggly and gazing up at mobiles or are seated in vibrating chairs or swings. Their existence is set to a soundtrack of dinging and beeping tempered with the occasional electronic lullaby music. The whole scene feels surreal and could easily be mistaken for a technicolor Twilight Zone episode. Doctors, nurses, technicians, therapists and support staff carry on dutifully, apparently obvious to the unnatural state of their working environment. 

In a few places, parents and other visitors sit bedside in tall backed rocking chairs. The newer mothers look bewildered and a bit shell-shocked, their bellies are still loose and swollen, no doubt feeling unnaturally empty and only adding to their distress. In some cases, their arms are still pricked with IVs and they rely on wheelchairs to carry them into the floor. Other moms, like myself, look somewhat less sleepless and blindsided, they're showered and blowdried. They carry large purses and insulted bags of pumped milk. They've figured out a way to awkwardly balance NICU visits with the rest of their chaotic lives. This being a level 4 NICU, many parents are even living out of hotels or other temporary housing. 

I do not allow myself to feel sad -- at least not for me or my baby -- as I make my way to my son's bedside. I know I am one of the most fortunate parents here. My son's arrival at 34 weeks is child's play (no pun intended) in comparison to the micro-preemies or very sick babies that occupy the unit.

We are here because, as our pediatrician is fond of saying, if it's going to happen to someone, it's going to happen to our family. Since we started having children 34 months ago, we've delivered three preemies, spent a total of 11.5 weeks in three different NICUs, spent four days in a PICU, had five ER visits and five admissions to pediatric hospitals and three surgeries (two as outpatients). 

Our youngest had been home from the NICU barely four days when he suddenly started registering low temperatures and couldn't seem to warm up even with two hours of skin to skin with his mama, I wasn't interested in messing around at home. After a number of anxious texts to a pediatrician friend of mine and a call to our pediatrician's exchange, we called in Nana to sit with big brothers while we hauled our tiny little guy to one of the two major pediatric hospitals just a couple exits away on I-64/40 (it's almost as if there was some sub-conscious premonitions at play when my husband purchased our house six years ago) 

After an uncomfortably long 15 or 20 minutes in the waiting room, during which time I listened to children cough and hack and wondered if I was out of my mind to bring our tiny and vulnerable child to this cesspool of disease and infections (turns out, there was an isolation room we could have occupied, but no one alerted us until too late). 

Eventually, we were granted access to a bright and chilly exam room and they drew a curtain that pictured a larger than life ram on a cliff top, which I imagine an older child would find either fascinating or terrifying. We spent the next seven hours in this room, enduring two shifts worth of residents and attendings and a very sweet nurse who took pity on our empty stomachs (potentially sick baby trumps dinner) and brought us pizza and chicken wings at 1am. 

Our first contact was a resident who I found to be inappropriately cheerful to the point causing me to wonder if her disposition was masking nerves.  Whether it was her intention or not, she left us with the impression that we would be home in no time and our concerns were totally unwarranted. The attending who followed her was either overly tired or intentionally dramatic, perhaps a mix of both. Between pregnant pauses, she told us that our instincts were correct in bringing him in. Very small babies could be very sick and exhibit no more symptoms than low core temperatures and decreased appetites. Indeed, we had experienced this only 18 months earlier when our middle son was admitted for viral meningitis (hence the PICU stay). Unfortunately, she told us (long pause), we'd be admitted for a minimum of 48 hours of observation and preventative antibiotics to rule out the possibility of infection causing low temperatures. 

The next few hours were punctuated with various pokes and prods, none of which went either smoothly or according to plan. They started by inserting an IV, which didn't go terribly but didn't draw enough blood to send to the lab. Now a heel stick was necessary to collect the remainder of the blood. Next, a urine sample was collected via catheter. I don't know how many times you've observed urine catheters used to collect urine specimen from an infant, for me it's only happened once before, but this seemed to last a little longer and require a bit more maneuvering than I remembered from the last time. This sample also proved too small and a urine bag was secured and tucked around his diaper  to remedy the problem. During all these proceedures, I was in charge of dipping the Soothie pacifier in sugar water to dampen the discomfort for the little guy. We went through a whole lot of sugar water and I was left craving a snickers bar to take the edge off my own stress.

I hit my breaking point with the lumbar puncture. When my second son had the LP that diagnosed his meningitis, they had asked us to step out of the exam room. This time, they allowed us to stay and asked only that we remain seated before putting the needle in the hands of our overly quirky and under confident resident. She took an enormous amount of time identifying landmarks on my son's tiny spine before missing her target and drawing a bloody sample. I bit my lips and swallowed my tears. While my baby wailed, I silently tore her a new (probably also underperforming) asshole. I understood now that the request to stay seated and my c-section lifting restrictions were perhaps the only things that kept me from throwing her across the room in that moment. Without a word, a new kit was passed to the attending doctor present who was the perfect middle ground between confidant and cheerful. In just moments, the deed was done and we could go back to snuggling our little pin cushion, I mean baby. 

The resident was lucky I am not typically capable of being rude or confrontational (and maybe also because of my recent c-section). She was punished in the moment by my failing to be polite or kind to her. Once the peanut gallery had fully adjourned from our space, my husband and I exchanged a look. 

He was the first to speak. 'I know this is a teaching hospital and that people have to learn, but...'

'...I'd prefer they learn on someone else's kid,' I finished for him grumpily. At some point, the heroic attending returned to give us an update and make some small talk which was possibly also designed to keep us from calling our lawyers. He was very effective and I was grateful for that because we don't have a lawyer.

Soon enough, I had re-focused my energies towards hating the ED exam room chairs. They were incredibly uncomfortable and I was craving some sleep. When the nurse arrived go tell us we were just waiting for a room to be ready, she noted my discomfort and suggested I stretch out on the exam table and she dimmed the lights for us. It was still very uncomfortable as I tried to position my knees so that my c-section incision wouldn't scream at me and cradle our tiny patient without compromising 

Around 3 am, we were finally escorted up to our new home on the 8th floor. I clung to our little guy as the nurse pushed his IV pole alongside us.  The hubs carried the car seat and my pump and my purse and the diaper bag and somehow didn't make it look awkward.  We looked like a small band of ER refugees, weary and looking for shelter.

We were greeted rather quickly by the team of doctors and the nurse who would be treating our tiny patient. They reviewed the game plan and I sent my husband away to catch a few short hours of sleep before the larger munchkins began to stir (I believe it amounted to 2 hours).

I set up camp on the poor excuse for a sleeping surface (a glorified park bench for all I'm concerned) wrapped in the stiff linens and knit blankets I have come to associate with hospitals and poor quality of sleep. Little man was graciously still waking to eat every few hours (which I took as both awesome/a sign of health and exhausting). When he was sleeping, the room was inevitably singing with the beeps and dings of his IV antibiotics, considered preventative as we awaited lab results. Sleep was a scarcity over the next few days. 

For the past six years, we have hosted a New Years party at our home. The party has become smaller and a little less raucous as our friends have also become parents and learned that sitters come at a premium on that particular night. Still, we were wise to take a pass on hosting this year. We celebrated instead by leaving the baby with his nurse at the nurses station (that's one way to find a sitter I guess) and slipping away for a quick meal down the street from the street. In the hours leading up to midnight, a team from the lab borrowed the little guy to draw more blood. They interrupted my nap to ask permission to use a scalp vein. I was mostly annoyed by the interruption because we've had two other babies with scalp IVs and stick him wherever you can find a vein and dammit I just wanted five minutes of sleep!!

Blegh.

Happy freaking New Year. 

Little dude was back in time to nurse his way into 2015 while I commented on how I can't stand Jenny McCarthy and how I didn't recognize any of the musical acts from the Times Square broadcast. I live under a pop culture rock where I seethe every time I peek out and realize Ms McCarthy still has a career. 

By January 2nd, it became apparent that our patient was probably not sick (yay!) but still doing a crummy job of keeping his temperature up (boo...) The hospitalist -- who by the way, was awesome and renewed my faith in medical professionals -- took a big breath before proclaiming that she had consulted with the neonatologists and they figured he was just being a preemie and needed some more time 'in the box.' 

In a matter of hours, we were doing our refugee walk again, this time down to the 5th floor. 

...so here we are. NICU repeat offenders. Waiting for a baby to learn thermoregulation during the coldest part of this Missouri winter. We are like most, both blessed and cursed, but I am consciously choosing to ignore the latter. 

Brrr....

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