Leaving Neonatal: A New Birth
By: Jonathan Bright
Tags: Premature Birth, Birth, Nicu, Premature Babies, Mwc Reentry

“You’re going home soon.”

These were the words we’d waited longingly to hear from the doctors for five terrifying months, but the thought of re-entering whatever constituted a normal life again filled us with about as much dread as when we’d originally left it.

You see, a premature birth tends to be a traumatic experience whatever the circumstances, but 24 weeks was exceptional. When it’s that early — we’re talking eyebrow-raisingly early — the trauma dial is turned up to 11. Following the sudden birth of our daughter, Isabella, my wife and I went through an emotional and physical rollercoaster of a journey. It all took place in the neonatal intensive care unit — NICU — four letters etched on our minds that curiously spell out not only the darkest but also brightest days of our life.

I always said that Isabella is made of nails; and let me assure you that was not hyperbole: from the off, a warrior child of unabated determination. We chanted her war song with every apprehensive step, as we walked for miles through those blindingly monotonous hospital corridors — “she’s coming home, healthy and happy, healthy and happy, healthy and happy.”

Born at just 630 grams, a tiny Isabella went through it all in her five-month stint in NICU: collapsed lungs; all manner of infections; morphine and steroids; brain bleeds; high heart rate; low oxygen; something like 30-plus blood transfusions; wires and tubes plugged into anywhere a wire or tube could feasibly fit, and some places where they really shouldn’t. The day the doctor told us the long line had to go through the top of her head, because there was nowhere else left that they hadn’t probed, was one of utter bemusement; the nurses made her a cute little paper crown to hide it, but in truth, how could such a tiny creature endure such traumas? There was, though, far worse to come.

About two months into her NICU journey, just when things were looking relatively stable, Isabella contracted NEC, or necrotising enterocolitis. It’s a life-threatening illness where tissues in the intestine become inflamed and start to die. This causes a hole in the gut, which then becomes infected, and sepsis sets in. And, terrifyingly quickly at that.

Critically, a nurse at the local hospital where we were then residing, Homerton Hospital in East London, spotted this early. Those dreaded alarms sounded for us this time, and Isabella was rushed in an ambulance for emergency surgery, to a specialist surgical team in Central London’s St Thomas’s Hospital. It was touch and go — by far the darkest moment in our lives.

Mercifully, the surgery was a success. The road to recovery, however, would be a long and rocky path of unimaginable extremes, perpetuated by wild fluctuations in Isabella’s breathing, heart rate and oxygen levels, a few more dozen or so blood transfusions for good measure, a stoma bag while the gut healed, all to be followed by another major surgery to put it all back together again.

She was under the care now of NICU at St Thomas’s Hospital, which is, I think it’s fair to say, up there with the finest neonatal units and paediatric surgical teams in the entire world. That said, it’s an annoyingly long way from our house. St Thomas’s Hospital lies on the banks of the River Thames, right opposite Big Ben. We live in London, sure, but as anyone that lives in London will tell you, living in London really messes with your perspective on what constitutes a short journey. I mean, I’ve travelled to some jobs in the past which have taken well over an hour and a half, door to door, over several forms of transport, and I would consider that a reasonable commute. But, when your baby is fighting for her life in an incubator, when quite literally anything can happen at the drop of a hat, you can’t really afford to be well over an hour on the Tube away. So, my wife and I temporarily left home, stranded on London’s popular South Bank.

For the first five days after this horrifying surgery, we stayed in the rooming-in room in St Thomas’s NICU. The slightly dark irony of this being that the rooming-in room is a bedroom provided for parents that are about to depart their NICU journey, giving them a couple of nights with their baby without any wires or beeps. It’s a practice session at playing parent before being sent home. In quite dramatic circumstances however, we were just getting started on this leg of the journey. Nevertheless, the room had a premium view over the Thames and Houses of Parliament. People pay a lot of money for views like this. It was like some weird hotel. We had become tourists in our own home city, on a dystopian holiday that neither of us had asked for.

Luckily, there was a nearby hostel, a haven — the Ronald McDonald Houses (yes, that Ronald McDonald), which is a wonderful charity providing close-by accommodation for parents while their children are in hospital. They offered us a room. After what felt like days traipsing across an arid, oppressive desert, these guys appeared like a Bedouin camp, offering a gentle hand, shelter and food — sausage rolls, pasties, donuts and pastries donated by local branches of Greggs and M&S, which all seemed an appropriate substitute for Bedouin fare in a stereotypically British way.

Nevertheless, we were away from home, which is unsettling at the best of times. We had a friend to cat-sit at the house and to generally look after the place. Every so often, we’d return just to check in, have a quick beer in the garden, and get some sense of our lives again. Ritualistically at these times, my wife and I would pick up the cat in our arms and all hug each other, acknowledging the obvious void of Isabella in that family embrace. “There’s one missing, there’s one missing,” we’d say to ourselves, tears welling up. Then, as always, you just pulled yourself together and jumped on that Tube back to the hospital.

To be fair, there were worse places to spend a summer in London. The circumstances sucked, of course; life had dealt us a cruel hand, but at least, we had a nice view of the London skyline from NICU, up on the hospital’s sixth floor. I had a pleasant stroll into work in the morning; I’d spend an hour at Isabella’s side before walking down the South Bank passing all of London’s most famous landmarks. We’d made new friends — friends for life — in NICU and in Ronald McDonald, each of us going through our own personal hell and somehow managing to laugh our way past the hourly trials and tribulations together. Time by our children’s incubator sides were peppered by the odd drink or a sloppy burger on the riverfront basking in the city sunset. We were surrounded by streams of tourists from all over the world, snapping furiously at the London Eye, bitterly disappointed that Big Ben was covered in scaffolding. With green eyed envy, we watched them go about their nauseatingly normal lives.

The point is that some form of Stockholm Syndrome had just about set in. We were finally getting used to life on the South Bank, watched over with a doting diligence by the staff of St Thomas’s, upon whom we’d entrusted our all.

And then, “You’re going home soon,” one of our doctors remarked.

“Oh, that’s… great,” we replied, with some trepidation. “Do you know when?”

“About two weeks,” he said to our stunned faces.

October was slowly approaching — in other words, busy season for babies — and the hospital was keen to free up some neonatal beds. Not that they didn’t feel we were ready to leave, though we ourselves would take some issue with that notion, we simply figured if not now, then when?

That said, after a five-month marathon in intensive care, away from home, away from the safe embrace of our own bed, two weeks is a relative 100-metre sprint. Panic set in. There was a LOT we had to do in two weeks. For one, we had an extremely deep house clean to see to, one which would probably have to enlist the help of a professional with a penchant for the kind of high strength disinfectant that removes layers of skin. After all, two ridiculously paranoid new parents were about to be bringing home a ridiculously premature baby that was ridiculously susceptible to infection.

Crucially, we also had to buy a car seat. And, as it turned out, a car.

The car seat was meant to be this big momentous occasion. Buying a car seat is part of the ‘normal’ (for wont of a better word) birth ritual — you have baby, you put baby in car seat, you take baby home. Cue bells and bunting and bonny families.

When Isabella was born on that fateful evening — that utterly unexpected 24 hours of unadulterated chaos and confusion at our local hospital (it’s difficult to put into words just how traumatic suddenly having a baby that you’re not expecting for another four months actually is) — we joked with the midwife that we hadn’t even bought our car seat yet, so sudden was the situation. At the time, the midwife rather ominously replied to us that we wouldn’t be needing one for a while, sending our heads into a tizzy about the kind of journey that lay before us. But that journey was now done; that time had come. And, rather than the act of celebration we had romantically envisaged for the last five months, the stress of our crushing pressure took over. The acutely suffering staff in John Lewis’s baby department couldn’t really keep up.

“I like that one. Is it safe?” my wife asked the exasperated department store assistant.

“Well, yes all our baby seats are safe…” the assistant almost succeeded in replying.

“Does it come in black?”

“Yes, madam, and it also comes in…”

“That one. Black. We’ll take it. And that weird rotating base thing it attaches to. Thank you, here’s the best part of a thousand quid. A future me can deal with the credit card bill.”

The weird rotating base thing fixes into the rear car seat. But, as it happens, not in our current, rather antiquated car. Additionally, said car had already been written off. Twice. It seemed a somewhat disingenuous choice for a baby that had battled her way through the worst that life could throw at her, just to be plonked into a barely functioning Hyundai with an in-growing boot dent.

So, new car it was. We managed this process with much the same aplomb as the car seat. That’s to say, there wasn’t much process. I’m aware that many people view choosing a new car as somehow speaking volumes about their personality. If this is true, then ours are that of a psychopath.

We went to Car Giant. I don’t know if you’ve ever been to Car Giant, but the best way to describe it is to think of Glastonbury Festival, except instead of tents, it’s cars. Miles of cars. And, instead of the Pyramid Stage, it’s a big building of slick-haired men trying to sell you finance while at the same time offering you a terrible deal on your old vehicle. In fairness, I’ve seen worse acts on the Pyramid Stage.

Anyway, we trawled through the hatchback field with much the same determined, unsteady wobble as one might a Glastonbury campsite at 5am, before entering the 4x4 field. We hastily spied an SUV which looked grey and voluminous and reassuringly safe. We had to get back to the hospital that evening so I asked them to put it aside for us — stick it under the till, or whatever it is you do with cars.

I returned the next day, alone and in a hurry. The utter absurdity of the fact that I was going to buy a car today was not lost on me. I mean, I’d never bought a car. Not like this anyway, the adult way, with forms and stuff.

Usually, it’s one of your dad’s mates trying to get rid of an old banger that’s stuck together with superglue. Yet here I was, now a dad myself, though I could barely countenance that fact, basically signing part of my life away and I really had neither the time nor the inclination to go through the minutiae of how much, which part, or for how long. My attitude was that of somebody going to Tesco’s for milk in their dressing gown.

A slick-hair salesman approached me with a cheesy grin. He presented me with reams of paper forms to which my response was basically, “Tell me what to sign so I can leave here with a car before sundown.”

“Sir, would you like to see our options on…?”

“Nope.”

“Sir, we also have special deals on bonnet wax…”

“No that’s fine, the bonnet looks well buffed.”

“And can I interest you, sir, in any…”

“Seriously mate, sell me the fucking car already.”

I got the impression the salesman was slightly stupefied at how little hard graft he actually had to put in here. I then had to part-exchange on our old car. They offered me £150. I mean, I figured this deal was going to be bad; I must be honest, I didn’t predict their offer would be akin to a second-hand keyboard.

Whatever, take the damn thing, I thought. I left the poor machine looking very sorry for itself in the Car Giant part-exchange lot. A sudden air of wistfulness breezed over me; this faithful steed that had served me well for so many years was about to meet a rather undignified end. Then I chuckled, remembering there was a pack of pornographic playing cards buried deep somewhere in the boot, left there by some friends I’d driven back from a stag party some months ago. An unwitting mechanic was probably about to find them, only to be bemused as to why the naked ladies’ bodies were complemented by the faces of my silly inebriated mates.

To my disdain, slick-hair salesman then informed me that, after listening to his shit for the best part of five hours, it was unlikely that I would be able to leave with my car today, as they had to do some checks on it, or something. After sternly reminding him for the umpteenth time that I had a sick baby in hospital and that this really was the only time I had to buy this damn car, and now that he had scrapped my other car, how the hell was I supposed to get anywhere anyway, he timidly agreed to expedite said checks.

And so, nervously tapping my foot, I waited.

I waited until I was literally the last man standing in Car Giant that day. But, leave I did, with a shiny, reassuringly safe, family car.

And duly, I felt like an adult.

I felt like a dad.

With forms and stuff.

My wife and I decided to christen our new colt with a trip to the nearest Westfield shopping mall, in Shepherd’s Bush. After all, it wasn’t just the car and the car seat that Isabella needed. She also needed clothes. And socks. And blankets. And toys. And god knows how many forms of baby wipes and toiletries and disinfectant and medicines. In fact, she needed just about everything that parents on a normal gestational period might excitably buy over the course of a few months of giddy anticipation, as opposed to one frantic hour.

We were knackered. But that would be nothing compared to the next few nights. We were finally going to be staying in the rooming-in room with Isabella. For real, this time. Wires, tubes, beeps, and irony-free. Indeed, this would be the same room we stayed in three months earlier, the one with the premium view, on that very darkest of days.

I can’t tell you how little sleeping actually went on over the course of those two nights. Isabella had spent five months hooked up to monitors, drips, medicines, overseen 24 hours a day, 7 days a week by highly trained medical professionals. We felt more out of our depth than an office intern made CEO. I think at one point, around 3am, we asked a nearby nurse if we could borrow a spare heart rate and oxygen monitor, “just for a couple of hours”. It had got to the desperate stage that that machine’s subtle hum was our comfort blanket, and we might even get an hour’s shuteye.

After two nights of absolute dread at being unplugged from the system, now came the real test. Re-entry. The world of NICU was about to be behind us. The world proper, with all its germs and lack of hand washing and peanut allergies and kidnappers and terrorists, lay ahead.

I don’t have to tell anyone who’s done a long stint in hospital that the feeling of leaving is one of uncontainable jubilation and palpable exhaustion. We were applauded and we gave our applause. With our heart of hearts, we thanked nurses, doctors, surgical staff, anyone that had helped save our baby’s life, their friends, and their dogs. We ambled proudly out of those double doors for the last time; those doors we opened daily; those doors we knew so well; those doors we had so unceremoniously smashed our way through in the opposite direction some months before. Isabella was wrapped in muslins, carried in her new, black car seat towards her new, grey, reassuringly safe car.

It was only when I got her downstairs to said car that I realised I had not practiced and had absolutely no idea how to fix the black car seat into the weird rotating base thing. So that took a frustrated while, precariously parked where I’m pretty sure only ambulances are permitted to wait. And that’s probably the point where things really started to hit home. We were on our own now.

Jubilation aside, we had spent months as unwitting parents in a sterile, protective environment, with medical staff on hand to monitor our little girl, change nappies, change stoma bag, and change tubes and regulate milk and fluids and all that other stuff like performing major surgery. Now, we were just unwitting parents. Untethered. Frantically flung without training into unwitting parenthood. And that with a world of paranoia and anxiety on our shoulders Atlas would struggle to bear.

We drove back, numb, but it should be said, content.

And it was on our route back that, completely unplanned, we passed the hotel.

The hotel where, five months prior, at a wedding reception, my wife started getting abdominal pains, pains that would turn out to be the first contractions of her premature labour.

The hotel from which my wife in full wedding attire sidled home, only to make what we would later discover to be the most important decision of her life to redirect to Homerton Hospital.

The hotel from which, after receiving her foreboding text, I made my frenzied, drunken, panicked dash to that hospital, only to be met with the crippling news that we were going to have our 24-week baby within the next 24 hours.

It was a reflective, bittersweet, charged moment.

And it was a moment book-ended with a glance in the rear-view mirror. There sat that very same woman, with that very same baby, two warriors finally coming home from the warzone. Healthy and happy. Healthy and happy. Healthy and happy.

We brought Isabella through the door and were met by a delighted cat. Immediately we picked him up in our embrace. With unbridled joy we exclaimed as a family completed, “No one’s missing, no one’s missing, no one’s missing!”

And at that, we burst into an uncontrollable cascade of tears.

The ridiculous paranoia didn’t end there, of course. That very first night we stepped into our time-forgotten bedroom, only to smell something was amiss. Isabella’s next-to-me cot, that we’d inherited, had conveniently grown something living and a bit black. Cue the complete disinfection of room with enough bleach spray to rival Niagara Falls’ splashback, and next-to-me cot and all fabrics in its vicinity into a 90-degree wash.

Given the pungent smell of chlorine now hanging in the air of a room we’d missed the most, we retired to our disconcertingly barren spare bedroom. We then realised that Isabella’s bed was in the wash, and she now had nowhere to sleep. Resigning ourselves already to being the world’s worst parents, we were forced to build her proper, wooden cot from scratch at 11pm according to Ikea’s hieroglyphic instructions and using an Allen key made of liquid metal.

The sleeplessness of the nights of rooming-in we figured would be hard to top. Turns out, not so much.

And yet, that next morning, the birds sang louder, and the sun shone brighter than ever before through the curtains of our bare, spare room. Our kitchen was just that — ours and ours alone. Our table was clear, literally, and figuratively. The smell of coffee, not from a machine, punched our nostrils. Breakfast tasted like gold as we showed Isabella around what was now the third home in her thus far brief, impossibly eventful existence.

Only this one was her real home. This one was her forever home.

We were exhausted, elated, emotionally full and emotionally empty, feeling sick from a lack of sleep and an overwhelming joy, ready to go about our nauseatingly normal lives again.