Jonathan's blog: Prem - part II

Trigger warning: premature birth 

Life with a pretermer baby was hard enough. When our baby daughter Isabella arrived at an exceptionally early 24 weeks, as I described in my previous blog post, I had to adapt quickly to the new normal, juggling work around spending my remaining waking hours in NICU at our local hospital, Homerton in East London.

We’d got over the initial shock and trauma of the sudden birth only to be met with a string of indescribably scary moments, as Isabella had contracted various, inevitable infections and her lungs were really struggling, neither of which are uncommon in these tough, but nevertheless under-developed babies.

But adapt my wife and I did. The hospital, a short bus ride from our front door, became part of a routine. I’d get up in the morning, go to the hospital and sit with Isabella for an hour or so, and continue to work. My wife – whose employer had, generously, granted her compassionate leave until our daughter’s due date, when the maternity leave would kick in (I should say here that some mothers we met in a similar situation to ours did not experience similar generosity from their employers. Mat leave kicked in immediately for them, despite the premature birth, which seemed wholly unfair), took over the vigil from me and then I’d come back to the hospital again after work until we could stay awake no longer. A good day in NICU was marked by us managing to eat dinner before 11pm.

However, after a few crises had passed, things seemed relatively OK. Indeed, by about two months after her birth, Isabella was doing remarkably well. We were seeing her huge, beautiful eyes, having regular skin-on-skin cuddles outside of the incubator, we were feeling her personality emerge, she was feeding and growing well despite all she’d already been through.

But here’s where we left off last time. Out of the blue, and overnight, she got sick. Very sick. Isabella developed an extremely serious gut inflammation. It affects about a tenth of preemies and sepsis sets in terrifyingly quickly. She needed emergency surgery. We were rushed in an ambulance to a new hospital – Guy’s and St Thomas’s Hospital in Westminster, Central London – where a surgical team of 30 medical professionals waited to perform a lifesaving operation. Unquestionably, this was the darkest moment of our lives.

Mercifully, the operation was a success. But recovery would be long, extraordinarily unnerving, and frequently horrific as her lifeline stats jumped dangerously up and down for what would be months. Here started a whole new chapter. Having only just got used to the new normal of Homerton Hospital, we were faced with yet another complete upheaval under hellish circumstance. We were now semi-permanent residents of Westminster.

For a second time, my employer granted me compassionate leave without hesitation. It was dearly needed. The acute trauma and stress was already taking its toll on us, and now that dial had been turned up to 11. Barely able to function as a human being in my oppressively numb state, just the thought of going to work was in itself palpably debilitating. My bosses however were incredible, insisting unrelentingly that I do nothing but look after my family in this crisis. Once again, a deep-seated loyalty to my company brimmed over. I felt supported. The feeling was, above all else, human.

The morning after the surgery, relieved though shaken to say the very least, we ventured out into our new locale, London’s South Bank, and had breakfast at a big chain restaurant overlooking the Thames. Coupled with our intense lack of sleep it felt like one of those breakfasts you have at the airport before a vacation. And that feeling was to frame the next three, gruelling, exhausting and terrifying months here, practically living in the hospital, opposite the Houses of Parliament, in the shadow of the London Eye, two tourists in our own home city on a dystopian holiday that neither of us asked for.

After five days living in St Thomas’s NICU – the dark irony of living in the unit’s rooming-in room, where parents due to be sent home spend a couple of nights alone with their baby without tubes or wires, was certainly not lost on us – we were offered a room at the Ronald McDonald House Charity nearby. This incredible charity offers accommodation to families with children in hospital. It felt like we had been traipsing through a harsh desert when this place appeared like a Bedouin camp offering food, shelter and sanctuary. We could live near Isabella and be at her cot side at all hours.

We were now adapting to a new, new normal. We were living away from home, which is doubtlessly unsettling even at the best of times, spending every waking hour at St Thomas’s which, while the hospital is nothing short of world class, is a place of extremes. Daily, we encountered families going through different versions of hell to ours, poor children even sicker than Isabella, the crushing sadness of which could only add to our already substantial burden.

I had to go back to work after a short while. If nothing else, I just needed to get back to some semblance of normality.

I made a new routine of waking up, going to the hospital to see Isabella, talking plans for the day with the nurses and doctors, going to work (which as it turned out was at least a very pleasant walk down the Thames, passing all of London’s famous sights on those warm summer mornings), doing what I could in the day, the colour flushed from my face and barely a cogent thought going through my mess of a brain, before returning to the hospital for the remainder of the evening. Thankfully I was able to pepper this time with working remotely on occasion, as my employers gave me a work laptop to ease the burden, and allowed me some early closes when I needed to meet doctors to discuss procedures or the hospital psychologists that were looking after our mental health during this ordeal.

I was struggling at my job nevertheless. Once again, rational thought told me to immerse myself in work to keep my mind busy; naturally my mind was beyond busy, but it wasn’t on work. This stress was then compounded by the realisation that I was the sole breadwinner now; put simply, there was a hell of a lot riding on me being able to function properly in my job. Our mortgage, for one.

This was cripplingly difficult. I expressed these concerns to my boss and then our HR Director, who, wonderfully, put my mind at ease. All it took was a different perspective to my own.

“You’re here,” she said. “You’re going through a formidable crisis and still you’ve turned up for work every day. Don’t worry, you’re doing fine. You might not be working to the capacity you’re normally used to, so you just have to view your working capacity with a new lens. But you’re here, and that’s all anyone could possibly ask of you.”

That meant the world to me. It gave me strength and confidence and I felt like I could cope again. My new, new normal was beginning to feel, well, normal.

We’d been fighting, hacking through a thick, uncompromising and oppressive landscape with no compass and no direction at all. But now maybe, just maybe, a glimpse of blue sky was peeking through. Our reserves of energy were beginning to build once again for the final phase of this unconscionable journey.

Jonathan is the proud father to a beautiful baby girl, a pretermer, and husband to the strongest wife and mother in the world. He is digital marketing manager for a London City financial services firm.

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• Families