Father's Day 2025: Leaving hospital was just the start
‘Something’s coming!’ This was the phrase uttered by my wife as we sat in the delivery room at 24 weeks and 6 days of gestation. And yes, something, or rather someone, was coming... far too early.
Three hours earlier we had experienced a rather scary moment when my wife had been bleeding a lot. We called the maternity helpline and were told to come straight into the hospital for a check-up. I quickly packed a bag for my wife and just as we walked out of the door, she said ‘I feel a bit of a cramp’. By the time we got to the hospital, I had to wheel her to the labour ward, where she was examined and we were told that they couldn’t guarantee her cervix was closed. Shortly after, her waters broke and we were hastily rushed to the labour room.
I have never seen quite so many medical professionals in one room at the same time. Midwives, a crash team and others, all ready to support what I later found out to be termed a ‘neonatal emergency’. We were desperately praying that he wouldn’t come out. Texts were sent and prayers were prayed, but shortly after, out he arrived, weighing just 1lb 13oz (835g).
After being laid on his Mummy for a few seconds, he was rushed over to a crash table where the surrounding doctors fought for his life. A short while later, he was placed in an incubator and transferred to a Level 3 neonatal unit (the most intensive level of care) by a special ambulance.
Finding ways of working
Paternity leave at my workplace lasts two weeks, and we were too early to benefit from the Neonatal Care (Leave and Pay) Act (now in force as of April 2025). I realised very early on that this would not be sufficient to allow me to continue working and supporting my wife and child through our time on this neonatal journey.
My understanding at the time was that you should expect to remain in the unit until your due date, which was 3.5 months away. My understanding now is that this can sometimes be longer, and in some instances, much longer. As such, we decided that rather than working from home, I should work from hospital. This allowed my wife and I to commute together into the hospital in the morning, me to work during the day and both of us to be around and support our son during our long stay in hospital.
Play on the ward
On first coming to the unit, we expected to spend our time looking at our son, unable to interact or have any meaningful relationship with him. However, we quickly discovered there are many ways to play, even when in NICU. His first storytime, skin to skin and singing to him in his incubator are all examples of wonderfully special moments we had on the unit. Months later (still on the unit) we were able to dress him in his first clothes.
“In June 2024 we were discharged home, just in time for Father’s Day. We were so grateful for having our son home alive.”
Given how early our son was born we did not get the opportunity to attend our antenatal classes. One of the ‘advantages’ of being on the unit was being professionally trained in things such as how to change nappies by the nurses. This greatly helped in taking away my former apprehension in nappy changing, but there will not be another point in his life where I will be able to hold his legs still between my fingers.
Prayer Chains
Throughout our stay in hospital we continued to pray and accumulated quite the prayer lists. Faithfully noting down the problems that had been diagnosed by the doctors in each of daily ward rounds and messaging them out to our WhatsApp prayer list. I had the favourite question for the doctors of ‘what would you ideally like to see happen’, which then became my prayer target for the day. Now I want to be clear, without the work of the doctors and nurses our son would not be here today… But I feel we definitely saw many miraculous answers to prayer during our time in the unit.
Transfers, transfers, transfers
Time passed and our son grew. His support needs decreased and his breathing, which at first was managed by ventilation through intubation to his lungs, was then moved to noninvasive BIPAP (Bilevel positive airway pressure) ventilation, and then to high flow. He also moved from intravenous feeds to tube feeding direct to his stomach and then moved from intensive care to high dependency wards (the next level down in terms of support)
A week or two after reaching 1kg (2lb 3oz), we were transferred back to our local Level 2 hospital, where he was born.
However, a week after being transferred to our local hospital, we were transferred again, this time due to our son having difficulty breathing and needing to be ventilated again. As the doctors picked up signs on x-ray that his gut seemed to be inflamed, they were concerned that this might be Necrotizing enterocolitis (NEC), a particular concern in premature babies under 32 weeks’ gestation. As such, we were transferred to a London hospital where they had surgical support on hand should it be required.
As this was much further from our home, commuting to the hospital every day was not an option. As such, we were offered accommodation first in a nearby hotel, then the Ronald McDonald house nearby. While there, he was diagnosed as having Staphylococcus aureus (staph, a common hospital bug) and sepsis. He needed to be ventilated again and we had a quite intense Easter weekend. Easter Sunday was literally miracle turnaround day. We started to see signs of him getting better rather than getting worse. We were there for two months while he recovered from the infection.
Again we were transferred back to our registered Level 2 unit. By now, our son had passed his original due date. We spent a month there gradually reducing his level of support, learning how to breast and bottle feed, along with giving him his first ever bath.
We were moved to special care from high dependency and discussions around discharge commenced, including being run through a gauntlet of tests for our son and training for parents.
Life beyond the neonatal unit
In early June 2024 we were discharged home, just in time for Father’s Day. We were so grateful for having our son home alive, particularly as we are aware of so many that didn’t make it during our time in hospital. But whilst we were home, our son still required supplementary oxygen to support his breathing. We were able to enjoy some semblance of normality, but with the added complication of oxygen cylinders and cables along with regular visits from hospital outreach nurses.
In many ways, the journey home (while a huge challenge in itself) has only been the start of the journey. Having been born so early, our wonderful son is still extremely vulnerable. He is taking much longer to reach some developmental milestones than a baby born at full term, which provides certain logistical challenges when many baby items (such as highchairs, prams and car seats) assume that a baby develops specific motor skills by a certain age and size. We also have regular appointments with his hospital consultant and a community physiotherapist to manage.
We were initially discharged home on oxygen, which at first was daunting but quickly became manageable. We found many places to tuck the oxygen cylinders both around the house and under the pram whilst out. Though this did mean no candles on Daddy’s birthday cake (small sacrifice), it did mean that we were able to support our son at home. This has meant some wonderful family moments including National Trust visits and Birdworld, all whilst on oxygen.
Our son came completely off supplementary oxygen in November 2024, able to breathe by himself in room air for the first time since he was born.
However, since then we have been in and out of hospital with him, as when he gets a cold, it often affects his breathing and he requires supplementary oxygen and breathing support again. This can be quite isolating and is challenging to manage with regards to work and seeing other people due to the potential infection risk. We have now had three hospital re-admissions since originally being discharged, though thankfully none have been four and a half months like the first time.
Unfortunately our son is currently ill once again but we’re looking after him at home for now. If we can manage to celebrate Father’s Day quietly at home, rather than in the hospital, we will all be very happy.
With thanks to Andrew for sharing his son’s story.