Father’s Day 2024: Luca’s rollercoaster ride
Our 116-day NICU journey started on 20 April 2023 when, due to infection and my partner’s waters breaking, we were told our baby needed to be delivered by emergency c-section at just 25+1 weeks. I can still tangibly sense the fear and concern I felt for both my unborn baby and my partner Cerys alongside the feeling I needed to remain strong for both of them. The day was such a blur from that point. I remember being shown an information sheet explaining the various risks and possible outcomes of a baby born at 25 weeks – trying to read and take it all in was very hard. We were then taken to the theatre where the delivery would take place and met by the largest medical team I have ever seen. At 6:51pm our son Luca was born, weighing a mighty 1lb 10oz (740g)!
Shock, fear and trust
Luca was breathing on his own for the first 20-odd minutes but then had to be intubated and put on a ventilator. I remember being in utter shock at how small Luca was, feeling incredibly grateful that he was born and was OK and Cerys was also OK. I really had no idea what to expect next and what it all meant for Luca in that moment, and for his future. There was definitely a feeling of fear and helplessness but I made the decision to trust that the people looking after him would always do their best for Luca and to support us too.
During our first conversation with one of the NICU consultants we were told that the first 24 hours were critical, then the first three days and then the first week. With the passing of each of those critical milestones, Luca’s chances of survival improved dramatically – he was stable but still considered seriously ill.
We were told to prepare ourselves for a long stay in hospital. We were advised it would be a rollercoaster of a ride and that really is the best description of a NICU journey that I have heard – there are so many twists and turns and ups and downs that you have to navigate through.
Family juggling
We were lucky that at the John Radcliffe Hospital in Oxford there was a Ronald McDonald house onsite which meant we were able to stay within a couple of minutes’ walk from Luca but it also meant we were staying away from our other children. Again, we were lucky that our oldest children were in a position to look after our youngest children but we were going to be spending a lot of time away from them and this made me feel particularly guilty as I didn’t want them to feel abandoned.
Those first couple of days felt very surreal seeing our tiny little boy in this big (for him) plastic box. All the leads and tubes covering him and people constantly checking on him and running tests. I was absolutely terrified to pick him up. I was convinced I would hurt him and one of my biggest regrets was waiting till he was three days’ old to hold him. That first time I held Luca is something I will never forget and despite my hands shaking as I picked him up the staff made me feel totally safe in doing so.
The Work Dilemma
My next dilemma was what to do about work – I had the option for extended paternity leave but I decided that, as I could work from home, I would wait until Luca came home from hospital. This led me to working literally next to Luca’s incubator/cot every day and taking conference calls from all over the hospital. Despite having the option to be signed off due to the stress of everything going on, I felt obliged to keep working and that is something I regret – we were in a stressful enough situation as it was and I didn’t need to be adding work stress into the mix.
From spectator to Daddy
After a week or so we both felt like spectators so decided that we would take as active a role as possible in Luca’s care. We would change nappies through incubator doors (never easy), take Luca’s temperature and blood pressure for his obs checks, do aspirates and tube feeds etc. This gave me the opportunity to feel like a real part of Luca’s care, to be useful and it also helped me to bond with Luca.
Some of my fondest memories of his time in hospital are the late-night cuddles when I became adept at being able to take an aspirate, check the PH and then tube feed him all by myself while he was laying on my chest sleeping.
After about six weeks in the John Radcliffe we were transferred to Stoke Mandeville Hospital which was where Luca was due to be born. We also went from intensive care to high dependency. This brought its own set of challenges: firstly, there was no place to stay for us at Stoke Mandeville which meant we had to go home every night instead of being a short walk away. We also had to get used to not having a nurse solely assigned to Luca. We had to get used to a new unit, new staff and new rules.
None of that was easy and it was all very scary but as always the NHS NICU staff made the transition as easy as possible and we were soon part of the NICU family at Stoke.
Father’s Day in NICU
When I arrived to see Luca on Father’s Day last year, there were presents from him waiting for me on his incubator. I spent most of the day with him in the hospital and my daughters, Amanda, Liana and Gabi, came to visit their brother. It was a bittersweet experience – I went out for a meal with my three daughter and I wanted to spend time with them, but it also felt weird to celebrate Father’s Day without Luca being there with us. Being in NICU with a family is all about the juggling act.
Ready for home – but was I?
After 116 days, Luca had battled through ventilators, incubators, duoPAP, high-flow oxygen, multiple blood transfusions, infections and many other obstacles that were put in his path and was ready to go home! Wow, it was amazing news and an incredible feeling. We were so excited and ready to take our boy home but also had feelings of anxiety and fear – were we able to look after him at home on oxygen and a feeding tube? What if something goes wrong – will we know what to do? The answer was of course, yes we were, but it did bring a whole new set of challenges.
Having Luca at home was amazing but also challenging. I was trained on changing his NG feeding tube so we didn’t have to go back to hospital every time he decided to pull it out. Replacing it became so stressful though as I knew how much he hated it and would cry and scream. It is the worst thing I’ve ever had to do with any of my children and I felt so guilty every time I did it. Initially it was also very hard to take Luca out anywhere as we were so worried about infections and exposing Luca to anything that would send us back to hospital.
One year on
Now Luca is almost 14 months old and coming up to one year corrected, he is off oxygen and feeding without the NG tube. While he has had three re-admissions to hospital since we came home for bronchiolitis, we have been able to take Luca out a lot more and go to baby groups and events etc. Luca is doing amazingly well but we still have more challenges and bumps in the road to overcome. We are so grateful for all the support we have had so far from the various NHS teams who have supported and continue to support us.
Father’s Day this year will be very different as the whole family will be able to celebrate together. Luca is just recovering from a recent episode of bronchiolitis so we’ll probably keep it low key – maybe go out for lunch somewhere and for a nice walk (weather permitting). Then we’ll watch England play football in the Euros, but Luca will be probably be asleep by then!
My top tips
To anyone going through their own NICU journey, I would say:
It really is a rollercoaster so be prepared for ups and downs
Ask for help and recognise you can’t do it all on your own
Take the help when offered, no matter how hard that can sometimes be
Get involved with your baby’s care as much as is possible for you
Don’t be afraid to ask questions to those looking after your baby and let them know if you are not happy about something
It’s ok to be vulnerable, scared, worried, sad, to cry but it’s also ok to laugh and find moments of happiness and joy during your journey
Be kind to yourself and to each other.
With thanks to Philip for sharing Luca’s story.