The day Theo came home from the NICU was the day I had been waiting for since the moment he was born at 28 weeks. One hundred and one days. And yet when it finally arrived, it didn't feel real.
I'd spent so long living in a world of monitors, nurses, and beeping machines that I didn't know any other life with him. The NICU had been our normal. And now, suddenly, we were leaving it.
Theo weighed 4lb 4oz on the day he came home. He was over three months old and yet he weighed half the weight of a regular size newborn. To us though, he was enormous. He'd been born at just 1lb 5oz, 600g, so 4lb 4oz felt like a different baby entirely. It was only when we saw a regular size newborn shortly after that we realised just how tiny he still was.
I dressed him in a warm, cosy sleepsuit and wrapped him in a blanket for the journey home. James drove slower than I had ever seen him drive in his life.
That says everything about how that day felt.
When are premature babies ready to come home?
One of the questions I got asked most during our 101 days in the NICU was "when is he coming home?" And the honest answer was: when he's ready. Not when he reaches a certain date. Not when he hits a magic number on the scales. When he's ready.
Every premature baby is different, and there's no fixed rule for when discharge happens. But generally, the neonatal team will be looking for a few key things before they send you home together.
Your baby will usually be ready to come home when they can:
- Maintain their own body temperature outside of an incubator
- Feed well, whether by breast, bottle, or a combination, and gaining weight consistently
- Breathe independently, without needing additional support
- Go without any episodes that require medical intervention
For many premature babies, this happens around their original due date, though some go home a little before, and some, particularly those born very early, may stay beyond it. Theo came home right around his original due date, 101 days after he was born. For babies born at a similar gestation, that's often how it works.
The team won't discharge your baby until both they and you are ready. And in the days leading up to going home, they'll start involving you more and more in your baby's care. Feeding, changing, bathing. It's their way of handing the baton over gently.
The days before discharge: how to prepare
The NICU team don't just hand you your baby and wave you off. In the days before Theo came home, the team started preparing us for discharge, though if I'm honest, James and I had been doing as much of Theo's care as we possibly could from very early on.
We stayed with him almost constantly. We'd go back to the Ronald McDonald House to sleep, then straight back to the unit. We did his feeds, his nappy changes, his dressing, his stoma care. He was our baby and we needed to be there.
Before discharge, the team will run through a number of things with you:
- A full debrief on your baby's care needs at home — any medications, feeding schedules, and what to watch for
- Rooming in — you'll be able to spend a night or two, just you and your little one in a side room. You will do a typical night-time routine, waking, feeding, changing, all the things you would be doing once you are home, but still with the ability to call for help if needed
- CPR training — many units offer or require this for parents of premature babies going home. Do it. Even if you never need it, you will feel better for having done it
- A car seat check — your baby will need to pass a car seat assessment before leaving, to make sure they can breathe safely in the seat. Make sure your car seat is suitable for your baby's weight, as many standard infant seats start from 5lb, so check in advance
Write things down. Ask questions even if you feel like you've already asked them. The team expect it and they want you to feel ready.
What to dress them in for the journey home
Choosing Theo's going-home outfit felt special. We'd been dressing him throughout his NICU stay, though finding clothes that actually fit had been a battle from the start, but this was different. This was the outfit he'd wear when he finally came home. At 4lb 4oz, standard newborn clothes still swamped him. We kept it simple, a warm, cosy sleepsuit and a blanket for the journey.
If you're not sure what size your baby will need for coming home, our premature baby clothing size guide can help you work out what will fit at their current weight.
The drive home and walking through the front door
James drove slower than I had ever seen him drive in his life. I sat in the back with Theo, watching him, barely blinking. After 101 days of nurses, monitors and beeping machines, it was just us.
When we got home, it didn't feel real. I can't fully explain it. It was a day I had dreamed about for over three months, and yet standing there with Theo in our arms, we didn't know what to do. We only knew a world in NICU. That had been our normal. The routines, the nurses, the constant reassurance of numbers on a screen telling us he was okay.
And now, silence.
No monitors. No alarms. No one to call if something changed. Just us, our baby, and a house that suddenly felt completely unfamiliar.
The fear of not having those monitors is something I don't think anyone prepares you for. We had relied on them completely. They told us he was breathing, that his heart rate wasn't dropping. Without them, we were lost. We checked on him constantly. Forget the first night. For weeks, months afterwards, we barely slept. And if I'm honest, the anxiety of those early NICU days affected us for years. Waking in the night with that fear that something might have happened. When every beep has meant something for months, silence doesn't feel safe. Not for a long time.
If you feel that way too, please know it is completely normal. And it does get easier.
Follow-up appointments and support after NICU
The support doesn't stop at the hospital doors.
You will be referred to the neonatal outreach team, who will come to you at home in the days after discharge. You'll also have follow-up appointments arranged before you leave, and how many depends entirely on your baby's individual journey.
Theo had a lot of appointments after coming home. His first weeks and months were complicated, and without the help of one particular consultant who helped us organise and navigate it all, we would have been completely lost. If you find yourself overwhelmed by the volume of appointments and information, don't be afraid to ask for that kind of help. You're entitled to it.
One thing worth knowing is that many healthcare professionals will refer to your baby's corrected age when tracking development. This can be a useful guide, but every baby's journey is different. Theo was over three months old when he came home, but due to his complications and the surgeries he'd been through, he was still much smaller than a regular size newborn and delayed in many areas. Corrected age is a starting point, not a rulebook. Follow your baby's individual progress with your healthcare team rather than comparing too closely to any chart or calculator. Our corrected age calculator is there if you find it helpful.
And please, don't forget your own mental health. You've been through something enormous. If you're struggling, talk to your GP or health visitor. You deserve support too.
Marking the moment
After 101 days, Theo coming home was everything. It deserved to be marked.
In the chaos and exhaustion of those first days at home, it can feel like there's no space to pause and acknowledge what you and your baby have been through. But this moment matters. Your baby fought hard to get here. So did you.
Some families choose to take photos on the day, the going-home outfit, the car seat, the front door. Others gather close family for a quiet homecoming. There's no right way to do it.
We created a simple NICU homecoming certificate you're welcome to download and print, a small way to mark the day if it feels right for you.
However you choose to mark it, mark it somehow. You made it.
You are not alone
I started Simply Preemie because of Theo. Because of those 101 days. Because of the hours on eBay searching for clothes that fit, the fear of coming home without monitors, the exhaustion that lasted years, and the feeling that nobody who hadn't been through it could really understand.
If you are reading this from a NICU family room, or from home in those fragile first weeks after discharge, I see you. I have been exactly where you are. And I promise you, it does get easier.
The NICU community is one of the most remarkable groups of people I have ever encountered. Parents who have walked this road have a bond that is hard to explain to anyone who hasn't lived it. If you haven't already, connect with other preemie families, whether through your unit's own support networks or through Bliss.
Theo is living proof that the tiniest babies can do the most extraordinary things.
If you need us, we're here.
