“Each morning I would inspect Izzy’s charts like a report card” – Jonathan’s story

My wife, Clare, and I had an indication there was something not quite right at our 20 week scan and were referred to fetal medicine. By 23 weeks our daughter was growth restricted and there were issues with the blood flow from the placenta. Clare also had pre-eclampsia and she was hospitalised on a number of occasions, each time the likelihood that we would need to deliver increasing. At 24 weeks we were told it was likely that our daughter would need to be delivered within the next two weeks, based on my Clare’s preeclampsia and the deteriorating blood flow. This was super scary for everyone, and we really didn’t know what to do at that time, or how things were going to turn out.  

In the end, and after an extremely stressful few weeks (defying some of the odds in terms of delivery date), our daughter, Isobel, was born at 28+3 weeks, weighing 717g on 16th December 2024. A 2024 baby was not on our bingo card - her due date was 7th March 2025! There was enough time for Clare to have one steroid shot and some magnesium just before delivery. Izzy was born in a pretty good state considering her size, but we weren’t able to hold her straight away.  

We live in Leeds and so Isobel was born at Leeds General Infirmary, where the NICU is amazing, and, in retrospect, we were extremely lucky to live 10 minutes away from such an amazing facility.  

The first few days of NICU life were a bit of blur, with Clare still admitted because of the C-section, and a mad labrador to look after at home! Isobel did reasonably well over the first few days, albeit ‘well’ is relative, and I think we have already normalised the amount of medical things that happened during our stay.  

Isobel needed blood transfusions, was under blue lights for jaundice, was monitored for suspected sepsis and NEC and had a variety of other issues. Isobel had a variety of oxygen requirements starting with being intubated at birth but moved to high flow after two days. She was also moved from the ICU to HDU after three days. This was a bit of a shock to us, but a positive one, nonetheless. 

We got to hold our daughter for the first time on day two, it was incredibly scary holding such a tiny baby that had to be carefully moved out of an incubator, with so many wires to get wrapped in. I think this really brought home the frailty of the situation, but in other ways it showed how strong Isobel already was, and was so worth it every single time.  

Isobel continued to do well in her first few weeks. Like most tiny preemies, she had various courses of different antibiotics, she was on and off insulin and had plenty of bradycardia and desats – something which took a long long time to get used to!  

Through the first 30ish days, there was a cautious optimism, all while being hyper vigilant and making sure nothing was left to chance in terms of blood tests, x-rays, ultrasounds. Of course this was all really stressful, and having multiple heel pricks, cannulations and tests is not nice to see happening to your baby!  

Because of the delicate nature of Isobel’s stomach, she moved between taking expressed breast milk and getting her nutrients through her IV. Clare put in a monumental effort, pumping 8,10+ times a day to help her supply come in – no mean feat after having a c-section at 28 weeks and a baby who is too small to breast feed! This made it even more gutting each time milk was withheld from Isobel due to worries about her stomach. 

We tried to be in the NICU as long as we could every day. Sometimes this meant coming in the morning, having a break then coming back, or not at all. Sometimes we would come individually to give the other a break from the hospital environment. It is so fatiguing being there every day, day in day out. You just have to do as much as you can and make sure you’re looking after yourself. No matter how well you can cope, you still end up despairing at the situation, crying on the ward, crying on the way home, generally feeling sad – even if you’ve had the best ‘medical’ day possible – it is really tough, and it's important to acknowledge this.  

Around 30 days in Isobel was deemed stable enough to move to our other local hospital, St James’. This felt really soon, but was a really good thing in terms of moving to a less ‘medical’ feeling environment. Clare travelled in the ambulance with Isobel, and everything went pretty smoothly! Isobel even got a certificate from Embrace to mark to journey!

We spent another 32 days at St James’, concentrating on feeding, growing, becoming less dependent on medical staff. Here there were more positive times with Isobel as she moved from an incubator to a cot, and to fewer and fewer wires and medical devices. Although everything was moving in a positive direction, and this part of the NICU stay felt less scary, it felt very frustrating, and it was hard to see an end. There were still huge ups and downs as tests came up showing minor things that could easily cause us to be in complete distress for the rest of the day, despite the reassurances of the amazing staff. We kept having to tell ourselves: look, in the early days we longed to be in this position, with a healthy little one. We had to try to take a step back and appreciate how things were going. 

On day 72, our family finally came home. Isobel still had her NG tube, but we didn’t end up using it at all. Isobel weighed a whopping 1.79kgs (~3lb 15oz in old money). She barely filled half the car seat, and leaving felt so weird. We had really become attached to the routine, the staff, the environment. But equally we wanted nothing more than this day to arrive.  

Coming home was amazing. We still had a lot of medical support (neonatal outreach, nutritionist, early intervention clinics etc), and it was (and still is) really hard to get out of the mindset of ‘Isobel needs to eat exactly this much today and put on x weight each day’.

But, gradually, things did and are getting more and more ‘normal’. Today, Isobel, or Izzy - as she is now known, is nearly five months corrected (just over seven months actual). She is an amazing, cute, strong and incredible little human, who has defied all odds to be here, let alone be thriving beyond belief. Izzy is smiling, giggling, rolling, sitting and generally bringing joy and happiness to us every single day. Izzy is still below the 0.4th percentile for weight, and will likely never be a basketball player, but, frankly, we couldn’t care less!

Throughout our experience, the staff across both hospitals were amazing. They are a phenomenal bunch of people, and I can’t put into words how confident we were in their ability to do everything for Izzy, and how they couldn’t do more for us. Obviously, there were people we gelled with more, and some less, but they truly made the whole experience better for us. Proper unsung heroes.  

Having a premature baby is so tough, and like nothing I have ever experienced in my life, and something that I could not have even begun to imagine beforehand. Every day there is a new thing that happens, a new up, a new down. Obviously being the Dad, I didn’t even have to do any of the giving birth, the pumping, the coming to terms that ‘motherhood’ doesn’t look like you expected; but having to see all that happen to Clare was tough.  

It’s a real balance between giving all your support and positive reassurance you can, while thinking about your own needs and how you feel. I’m super thankful for the relationship Clare and I have, and our different ends of the positivity spectrum often helped meet somewhere in the middle. It was so hard, and parenting is still hard with the trauma of the whole experience, but it really gets better each day, and we are pretty much at the point where we can have the view that she’s just a happy (teeny) ‘normal’ baby.  

We both found it useful to take time away from the NICU, but it's easier said than done. I really had a thing about having to see the night staff, as if me seeing them would have any impact on the level of care Izzy received, but this often led to long days and long evenings. We got a bit better as time went on at calling the unit for an evening update, so we could sleep (or generally just do something that wasn’t hospital related!). It is, what I can only describe as, an all-consuming, traumatic experience, and one that just can’t be understood unless you’ve been through it. 

The units at LGI and St James had a psychologist that both Clare and I spoke with – this was a really useful service for us. We also had a really good personal support network, which was both amazing and sometimes tiring. Amazing because people were always checking in and helping in one way or another; tiring in that it was so mentally fatiguing the keep people updated with everything that was happening.  

Often, I would give very censored answers of how things were going – because the real answer was always ‘yes, things have been okay today, but there are still five unresolved issues, we are tired and struggling, and Izzy is still in intensive care’. But most times you just don’t really want to go into it.  

We were grateful for the access to helpful information about Izzy’s condition and care. If you wanted to know something, the staff would tell you. We tried to be present for rounds every day and asked tonnes of questions. Each morning, I would inspect the charts like a report card to see how Izzy had been overnight. I’m sure I looked like an idiot to some of the staff, given my medical background is zero – but you end up knowing enough just by being there all the time. This was one way I felt really involved in Izzy’s care. After a few weeks, at rounds, the consultant would ask us how we think Izzy has been, rather than asking the nurses first. This was because we saw her all day, every day, whereas the nurses change shifts and can’t be expected to know every single baby on the unit inside and out (although some of them do manage it!).

My advice to other parents is to get involved with your little one’s care as much as you can. Temperatures, nappies, kangaroo care, daily rounds. Just being able to advocate for them by saying ‘this has changed’ or ‘that’s normal for them’ is amazing. If you see a medical person doing something that you think you could/want to do – just tell them! But, on the other hand, make sure you are able and happy to say ‘I can’t do that right now’. That’s completely fine too. You need to find a balance!  

One of the best moments I had in the NICU without realising was when Izzy had moved to only having an apnoea monitor (so she wasn’t attached to the cot or wall with any wires), I picked her up and danced around the room with her! We even stuck our head into the corridor! Obviously check with the staff; but this felt amazing to me – I picked up my daughter and just had a walk around & chatted. Nothing huge, but I realised I had never ever just picked her up and not stayed one meter from the cot/incubator.  

On a different note – it’s completely fine to ignore family / friends or to tell them you can’t speak about things right now. It can get super tiring and setting boundaries is really important (but also really hard). As I mentioned earlier, it's also sometimes very difficult to answer the question ‘how is she’ or ‘how are you’. We actually set up a WhatsApp group with family that wanted to be kept updated – that way we could send out an update with little pressure of follow up questions!  

Don’t feel guilty for being at home and doing ‘normal’ things. We still tried to exercise, eat out here and there and generally do things without feeling the guilt of ‘I should be in hospital with her’. Sometimes seeing some friends for a couple of hours refreshed us a little bit.  

Finally, we had a day-by-day diary to fill in. This was a mix of medical stuff, the names of staff looking after Izzy that day, and things we were grateful for. Some days it was easier or harder to do, but it certainly helped at the time. At some point I want to go back and print a picture for each day, to show how far she had come. For now, it’s a bit soon to go back and read through for me, but I have no doubt I’ll be something I’m glad we did.

I would wholly recommend Bliss’ support, particularly the experiences of other parents. But you have to be in the right place mentally. Sometimes you need to read positive stories, sometimes you need to try shut everything off and think about something completely different. It’s just about finding what you need each day to get through the experience.

Being a dad of a baby in NICU is really tough. It’s tough to not be able to directly help your baby. It’s tough to watch your other half go through it all mentally and physically. It’s tough to try keep it all together. But whether you know it at the time or not, being there is helping. Being there means your daughter already knows you before she should even be born. Being there helps your other half cope. Being there is completely enough.