Editor’s note: I’m pleased to introduce this guest post by Rachael from Simply Preemie, who writes powerfully about her experience of NICU following her son’s premature birth, and how she’s gone on to create a dedicated clothing brand for preemies.
Theo was born at 28 weeks and 4 days, weighing 600 grams.
If you don’t know what 600 grams looks like, it’s less than a bag of sugar. His skin was red and raw looking, he couldn’t breathe on his own and within days of being born, his bowel perforated. What followed was a life-threatening emergency, an ambulance transfer to a specialist children’s hospital and a surgery that his surgeons didn’t think he would survive.
Signing the consent form was one of the worst things I have ever been through, reading that your son will likely not survive the surgery – my partner James and I were heartbroken.
We spent hours pacing the hospital corridors, hoping, praying to anyone who would listen to keep our baby boy safe. Someone did listen, thankfully he survived the surgery.
Theo came out of surgery with a stoma; part of his bowel was brought outside his body to allow it to heal. Which meant stoma bags. Which meant that if a bag wasn’t fitted just right, it would leak. Multiple times a day, every day.
We spent 101 days in the NICU.
Every single one of them, I was there. I’d arrive on the NICU, sanitise my hands, wash my hands, sanitise again, check in with the nurses, read through Theo’s notes, do his cares, give him his feed. Watch the monitors. Watch the numbers. Sitting. Staring. Drinking Starbucks (Theo had his caffeine, why couldn’t I?!)
Then I’d walk back to Ronald McDonald House to shower and sleep, then get up and do it all again the next day – it was tough.
No one really prepares you for the NICU, the low lights, the constant beeping, alarms, wires.
The best advice I can give to any parent walking into that unit for the first time is this: take each day as it comes. Don’t look too far ahead. Not because you don’t want to be optimistic, you absolutely do. It’s because being in NICU is two steps forward, three steps back – constantly. The day you think things are turning a corner is often the day something else happens. You survive it day by day.
I never imagined my pregnancy would be cut short and I would be learning how to care for a baby in the NICU, but you find the things that help you feel less helpless.
For me, one of those things was finding the right clothes for Theo. Something that fit. Something soft and that made him look, even for a moment, like just a baby. So many things were out of my control, but the one thing I could control – finding Theo something suitable to wear. Phone in hand, coffee at the ready – the search began.
The search begins…
I didn’t have to look too far; the choices were pretty limited!
The only place I could find premature baby clothing online at the time, was a well-known high street retailer.
And even their range only started at 3lb — which sounds promising, until you realise your son still only weighs 2lb and their smallest size is still too big.
So, Theo wore clothes with the sleeves rolled up. Clothes that drowned him. Clothes that were only offered in blue or grey, with fastenings that were fiddly and impractical and would curl and warp after every wash.
Endless time was spent scrolling through eBay, sitting beside Theo’s incubator, searching for anything that might fit. Ordering things and waiting to see if they’d work. Most of the time, they didn’t.
I became genuinely, obsessed. There I was, spending hours of what little energy I had trying to find a vest that fit my baby. Something as basic as having appropriate clothing available should not have been this difficult.
Simply Preemie exists because of those 101 days. Because of the hours on eBay, the boring blue and grey sleepsuits, and the fastenings that curled in the wash. Because of the moment I first dressed Theo and he finally looked like mine.
Let’s talk baby clothes
Sizing works differently for premature babies. Forget age, forget due dates. The only number that matters is your baby’s current weight.
At Simply Preemie, we size everything across three categories:
Micro Preemie (1–3lb); for the smallest babies, usually still in intensive care. Medical access is everything at this stage. Our range starts at 1lb.
Early Baby (3–5lb); as babies become more stable, more styles become practical.
Tiny Baby (5–8lb); the transition stage. Even at 7lb, many premature babies fit better in preemie clothing than standard newborn, because preemie clothing is cut to match how they’re actually shaped.
Fabric is non-negotiable.
100% cotton. Premature skin is really delicate. It is thinner, more sensitive, more prone to irritation than you can imagine. Synthetic blends, rough seams, raised stitching, scratchy labels, these will all cause problems against skin so fragile.
At Simply Preemie we stock both organic and non-organic cotton options, organic costs more and we never want that to be a barrier for a family already under enormous financial pressure.
Fastenings matter more than you’d think.
Anything that goes over the head is going to be a problem. Wrap-over designs, front-opening garments, kimono styles all allow you to dress your baby without too much disruption, especially in the early days. The fewer fastenings, the better – every fastening is something to negotiate around tubes and wires.
Access — always think about access.
Nurses may need to reach your baby quickly. A good NICU garment opens easily, closes easily, and doesn’t require fully undressing your baby for every check. This matters during skin-to-skin too, a top that opens at the front means you can hold your baby against your chest without removing their clothing, which helps keep them warm during kangaroo care.
Here at Simply Preemie, we don’t just sell baby clothes. We are a resource for NICU families, because we know that when you’re in that unit, you don’t just need clothes that fit. You need information, tools, and someone that actually understands what you’re going through.
That’s why we’ve been building free tools for NICU families — and we’re just getting started.
So far that includes a corrected age calculator, a baby clothing size calculator, a downloadable NICU graduation certificate, and customisable milestone cards. All free.
If you’re in the thick of it right now, I’ve been where you are now, I know the road is long and tough, but it will absolutely be worth it in the end.
Remember, one day at a time.
And if you need us, we’re at simplypreemie.co.uk.
Rachael Kavanagh is the founder of Simply Preemie. Her son Theo was born at 28 weeks weighing 600g and spent 101 days in the NICU. Simply Preemie offers specialist premature baby clothing from 1lb, alongside free tools and resources for NICU families.