“You can go through every emotion in a few hours” - Luke’s story

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Luke’s daughter Edie was born at 25 weeks and five days. For Father’s Day, Luke shares more about their journey and offers his advice to other parents with a baby in neonatal care.

Edie was born very unexpectedly on 13 September 2022 at 25+5 weeks, weighing only 420g. She was born in Stepping Hill Hospital in Stockport, and we recently had confirmation that she is the smallest baby ever born there to survive. These are the top line numbers and facts, but they do not tell the true story of how scary and life altering this moment was for my wife Laura and me.

Edie was born via emergency c-section to save both my wife and my baby’s life. Due to undiagnosed pre-eclampsia brought on by severe hyperemesis which then also led to HELLP syndrome, we were rushed into the hospital and then everything moved very quickly.

The amazing nurses, midwives, surgeons, doctors, anaesthetists and many other medical professionals did everything they could to help Laura and Edie and to try to avoid early delivery.

However, the situation became life threatening and so in the early hours of the morning we were told that they would be delivering Edie as soon as they could get the team together.

In a state of complete and utter shock, we welcomed Edie into the world at 13:01 on 13 September. It was the most incredible moment of my life watching this tiny baby kick around as she was born, but equally the start of the hardest journey we have ever faced.

Stepping Hill has an incredible medical team and the most amazing NICU, but they were not set up for a baby that small and a baby that had the medical and possible surgical requirements Edie may need.

Edie was transferred to Oldham Hospital but due to a perforated oesophagus and her tiny body she was transferred again to St Mary’s Hospital in Manchester where we would spend the next two and a half months.

Laura was recovering in Stepping Hill for two days and she was then transferred to St Mary’s maternity ward to continue her treatment alongside Edie.

When we arrived at St Mary’s, Bliss was there. We were given leaflets and pointed towards the Bliss website for information on everything from how we may be feeling, what to expect, medical jargon and so much more. This was incredibly useful for me. Laura was still in hospital in the early days and spent as much time as she could out of bed next to Edie’s incubator.

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Unfortunately, it was not always possible for me to be there through needing to be home and having to go back to work after two weeks but having the information available through Bliss allowed me to research and understand what was going on at the hospital as Laura updated me.

Throughout this time there were some incredible ups and downs. You can go through every emotion within a few hours. The incredible moments of holding her for the first time, feeding her via tube or seeing Laura spend time with her out of the incubator to the absolute worst moments - remembering when Edie suffered a pulmonary haemorrhage, or when her breathing tube dislodged and resulted in an alarm blaring through the entire NICU.

Every available member of the NICU team runs into the room and you as parents are left helpless at the back as they work. We had no choice but to place all our trust into the nurses and consultants that were taking care of Edie, but they also made that so easy to do. All of these are part of the journey.

All the staff, whose main priority was to care for Edie, were incredible with Laura and me. They took the time from their busy shifts in high pressure NICUs to listen to our feelings, answer our questions, be a shoulder to cry on and a person to hug. I cannot speak highly enough of all medical staff that not only contributed to Edie’s health but also our mental wellbeing. Their job was to save Edie but in doing so they saved us as parents too.

Throughout Edie’s time at both Stepping Hill and St Mary’s she went through a huge transformation. She grew, which in turn, helped her work her way down the breathing ladder. From starting to be completely intubated all the way down through BIPAP/CPAP and finally into Opti flow which is a very minimal amount of oxygen. She could regulate her own temperature, take feeds through bottles and even breastfeed.

Family integrated care was actively encouraged at both hospitals, and it meant the world to me and Laura to be able to take care of our baby when we’d lost so much of what we felt having a new baby should be.

Edie’s due date also correlated with her 100th day in NICU which means she came exactly 100 days early. The staff at Stepping Hill went to amazing lengths to make the day special and we had a big celebration. They decorated her incubator, made a huge sign and we had a little party.

We spent Christmas, New Year and Laura had her first birthday as a mum in Stepping Hill NICU - it was emotionally draining and far from how we’d expected things to go. However, we also felt incredibly lucky to be able to be with our girl during these special moments and grateful for how far she’d come. The staff there made a fuss of all special occasions.

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In total we spent 129 days in NICU. We got discharged and went home on 20 January 2023. Edie was still on oxygen when we left, and we had oxygen tanks brought into our house and portable ones to take her out with.

We had a rocky few weeks when we first got home due to Edie getting bronchiolitis so ended up back in hospital for a couple more weeks to monitor her O2 levels. I am so proud to say that Edie is doing amazingly and as of the start of June she has been off oxygen entirely and is progressing well.

Her strength and bravery from the day she was born has been nothing short of astonishing. She is the sweetest and funniest little nine-month-old, and we feel so thankful she’s ours. She is our miracle.

There is no right way to go through this journey, as no two are the same. The bits of advice I’ve learnt along the way that I think could help others are:

  • Ask questions. Nothing you can ask is stupid and it feels better to understand even if it is difficult to hear.

  • Rest and eat. You will forget, and you will push yourself harder than you should, but it is a marathon, not a sprint.

  • It isn’t fair but you are not alone. Speak to the people in the NICU, nurses, doctors, care staff and other parents.

  • Advocate for your baby. As much as the doctors and nurses are the professionals, you know your baby in ways they can’t. Your opinion is valid.

  • Write down and celebrate everything. Toe wiggles, eyes open, first feed! These moments will get you through the tougher ones.

  • Also utilise resources such as Bliss and reach out when you need to talk.

We get to spend three months longer with Edie than we ever thought we’d get the chance to do. We got to watch her grow in a way many people do not get to see with their children. It was the hardest thing we have ever had to do, and we aren’t completely out the other side yet… But we are happier than most with every horrible nappy, vomit, cry and night-time wake because of everything we have been through.

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