25 weeks and 3 days…
Trigger warning: This post includes my description with photos related to the premature birth of our baby girl and following recovery in hospital.
25 weeks and 3 days. That was the gestation that our baby girl Flora was born and will be forever etched on my mind. Our story didn’t start there though.
Adam the baby is coming. You have to come now. They are keeping me in.
That was the text I got from my wife Ieva at 22:52 on the 15th March after we had earlier dropped her off at Cramlington Hospital to check on some minor twinges she’d been feeling . At that point we had just gone into week 24, we weren’t expecting Flora to arrive until July.
I still wonder about my thinking, but the first thing I did was go on Google and search for “baby 24 weeks survival rate”. I felt a bit sick when I read that it was between 55–65%. Tears started instantly running down my face and for a few minutes, I didn’t know what to do.
Our world got completely turned upside down.
We were told that as far as the doctors could see, Ieva was fully dilated and that the baby could literally arrive at any time. Ieva would need to be moved to be close to the Neonatal Intensive Care Unit (NICU) in either Newcastle, Sunderland or Middlesbrough as soon as a bed became available.
We had a day having the types of conversations no parent ever wants to have. Mortality, severe disability, the impact of loss on our other children Zuzanna (5) and Lukas (2) (who were currently at home with my mum and sister)… we hadn’t even decided on a name at that point.
The doctors and nurses were incredible, but there were so many potential outcomes at that point, almost all our conversations and thoughts were around the worst-case scenario, despite trying to remain hopeful.
The following day, Ieva had a Blue Light transfer to Sunderland Royal and was admitted to the wards adjacent to their NICU.
Holding on.
When we arrived at Sunderland we were greeted by the intensive care cot (see photo in tweet below). It was an ominous, towering constant reminder of our situation, but also reminded us we were in the right place.
The consultants informed us based on a specialised scan that Ieva was not fully dilated. At 3cm, she was still effectively in labour, but at this point all they could tell us was that it could be a day, a week or in very rare circumstances many weeks before Flora (we had decided on the name by this point) would be born. For that whole period, it would be required for Ieva to be in hospital. Our attention had to turn to the kids at home as we started to think through all the scenarios.
It was also explained to us that every day Flora stayed put, would make a real difference to her chances of survival and her risk of severe disability. Just one week would mean potentially moving from 55% survival to almost 80%. If we got to 27 weeks, it would be 90%+. We needed some help…
The response we got from everyone on Twitter (and elsewhere!) was huge for us. So much positivity, so many people, including people who didn’t even know us providing their stories, their thoughts and prayers through one of the hardest times of our lives. That support would be steadfast for many weeks ahead and I must say a huge thank you to everyone who reached out. It’s hard to describe how important that support was to help prop us up emotionally.
Flora held out for a whole week, when on 22nd March Ieva’s water broke and almost exactly 24 hours later she was born naturally and as healthily as could be expected. The loud scream she let out as the team of midwives, doctors and nurses rallied around her tiny body was both exhilarating and comforting, generating tears of joy and relief in both me and my wife.
Having had two previous caesarean section births with our other children, Ieva had never expected to give birth naturally. The strength of my amazing wife in these circumstances is something that even writing this fills me with emotion, love and admiration. She was rushed off to the operating theatre in order to check that everything was ok. Flora was rushed into the NICU unit and I was left in what was now an empty room.
The enormity of what had just happened hit me hard.
I cried for a while, and after a release I called my family as I waited for further news. It was one of the longest hours of my life.
The Rollercoaster.
Both mother and baby were fine. Ieva had lost a lot of blood but was recovering well, Flora was put onto a ventilator to breath for her and was as well as could be expected in an incubator.
It was just over a week since this journey had begun, but it already felt like a lot longer. At 25 weeks and 3 days Flora was not fully developed and we were in no uncertain terms informed that there was a long journey ahead.
In the conversations we had with medical staff and others who had shared their premature baby experiences, the word that kept coming up was “rollercoaster” and we would learn over the next few weeks just how apt this description was. But for now we were just filled with hope and relief that she was alive, and that we could be close to her.
It was also the first time that Ieva had been able to go home and see Zuza and Lukas. Thanks to the incredible support from my mum and sister and a number of our friends, they had been well looked after, but after 8–9 days they were really missing their mother.
We had to learn how to split ourselves in four. We needed to be there for Flora, who was now living almost an hour-long drive away in Sunderland. We had to be there for Zuza and Lukas who were both trying to understand everything that was happening as best they could. We needed to be there for each other, our partnership as parents stronger than ever, and we needed to be there for ourselves — our mental health being pushed to the maximum and enhanced by the tiredness we would feel as days went by.
The care that Flora received (and all premature babies in NICU receive) was unlike anything we had experienced. 24/7 she had a nurse assigned to her that was constantly watching her monitors to tweak the various instruments to make sure that she was always getting what she needed to grow. Every three hours she would be given “cares” including changing her tiny nappy, mouth cares, changing tubes, taking her temperature and more. At least once a day she had her blood oxygen levels checked to check for any irregularities.
After the first few days in NICU we decided that based on the distance to Sunderland we would aim to be at the hospital four days out of seven and when we weren’t there, we would call into the unit for updates at least twice a day. Each call, each visit there would be something new. Detection of a virus, an increase in temperature, blood sample results, brain scans, a collapsed lung, heart scans… it was exhausting. Some days we would be buzzing off some good news, others sitting at rock bottom wondering if, or when she would be coming home to meet her big brother and sister.
Everything changed though, when after around 10 days, we were able to take Flora out of the incubator and give her cuddles. While there were cables and breathing support everywhere, the feeling of her skin against ours was so important and made a real difference. When your daughter is primarily being cared for by others there was nothing better than knowing we were able to develop the parental bond.
We were expecting to spend 6 weeks in the NICU before Flora could be transferred back up to Cramlington which would cut our visit travel down from an hour, to just 15 minutes. After a number of set backs and with steroids being required to help Flora breath, she was diagnosed with Chronic Lung Disease (CLD) coming up to 5 weeks old. While quite common in premature babies, this felt tough. We were told it would be at least two weeks before she would be transferred and that it was very likely that she would need to come home on oxygen.
The Transfer.
A few days later we were just getting used to the idea that this may be a longer stay that had been anticipated when we came to hospital to be told that Flora was making really good progress and it might actually be after the weekend that she could be transferred. It got to Saturday and we were due to visit but just before leaving we got a call from NICU.
“Don’t leave the house, we’ve just had confirmation that Flora will be transferred to Cramlington… today!”
A week earlier than we thought, and with Flora less than six weeks old, we were a big step closer to getting her home and we were so delighted to arrive in the Special Care Baby Unit (SCBU) in Cramlington.
It was a strange feeling as we didn’t even have time to say goodbye to most of the amazing staff at Sunderland many of whom we’d become very attached to — they had been so good to us. But we were made to feel very welcome at SCBU, and Flora had her own room!
The main aim of her time in Cramlington was to develop breast feeding and increase weight to the extent that she would be close to the size and development of a baby born at normal term. While there were still some risks, Flora was mostly stable at this point but it actually became some of the most difficult days for us. The adrenaline of fear and worry subsided into the patience required to go through the motions required to get her home.
There were some major milestones though, such as wearing her first baby grow, having her first breast feed, her first bottle, moving out of the incubator and ultimately, having her feeding tube removed. For the last 3–4 weeks Ieva pretty much moved into the hospital to establish feeding, while I looked after Lukas and Zuzanna at home.
I consider myself privileged and lucky to have an exceptional employer, Sunderland Software City, who provided us this flexibility, and enabled Flora and Ieva to develop the mother-daughter attachment that was so crucial in her coming home.
Coming Home.
It took around 5 weeks for Flora to get to a point where the team at SCBU were feeling she could come home. She was breast and bottle feeding every four hours and consistently putting on weight. With the all-consuming events of the last 10 weeks we were jolted into action for the reality that our little baby would actually be coming home. Last minute decorating, making sure we had all the equipment ready… the excitement was palpable.
For Flora to come home we needed to get Oxygen installed in the house. This was slightly daunting as two large tanks were delivered and a small, portable version so we could take Flora out.
On the 16th June, exactly 3 months to the day that Ieva was admitted into Sunderland Royal NICU, I went to the hospital with car seat at the ready and we checked Flora out.
It was an emotional day — Ieva had made such strong connections with the nurses at the ward in Cramlington, as they had with both Ieva and Flora. We were still three weeks from Flora’s due date, which would have felt early if it had been a more traditional birth. Her brother and sister had never even met her and so seeing her in Zuza’s arms was one of the most special moments in my life.
Looking Forward.
We are now two weeks on and have been able to settle somewhat. We have had bi-weekly visits from the Community Nurse team and weekly visits from the Health Visitor who are looking after her Oxygen and general health respectively. Earlier this week she was discharged from the eye department at the RVI which was one of the major potential areas of concern. We have to be a bit more careful than we were with our previous two, but otherwise she is on track to grow into a healthy, feisty toddler and beyond.
It has been the longest, most challenging few months that we have endured as a family and the more we reflect on it the more it drives home just how traumatic many moments were. But it has also brought us closer than ever, it’s given me time with Zuza and Lukas that few other events could have. Most importantly, it has brought us a tiny, beautiful, healthy little girl who we will cherish forever.
Right now our focus will be on our family. I start work again next week and we have a lot of time to make up together. However it is our intention to put together a fundraising page in the future, to raise money for the amazing teams of medical staff that keep premature babies alive. The care we have recieved from NICU at Sunderland and SCBU in Northumberland has been unbelievable. They have not just been consumate professionals providing the highest level of care, they have taken time to build relationships with Ieva and I, while showing so much love for our little girl. They are not just wonderful professionals, they are wonderful people.
I’m also keen to put more of our experiences into more words and pictures to support others who are going through a similar situation. Hearing from other premature parents was so powerful in supporting us through the last few months. While the purpose of this post is primarily to bring people we know up to date with everything that has happened, I do hope if you are reading this due to going through something similar, you will reach out if it would help to talk.
Myself and Ieva are so grateful to all those that have helped us over this time, from my sister Becky and my mum who took on so much of the childcare that allowed me to be at the hospital supporting Ieva. Both our families who provided so much support in so many ways. Our friends Jade and Olivia who helped so much by looking after Lukas each week. Our colleagues past and present who have been there for us. So many people supported us on school runs, or by providing cooked meals, gifts…
Every one of you has contibuted to giving Flora the very best start in life despite everything being against her. We will never forget it.
We also owe a massive thanks to everyone who has sent us messages of support and kept in contact throughout.
It feels like we have reached the end of a process, but that signals the beginning of a precious life — one which we will make the very most of, together as a family. I’ll be sure to share photos and updates on Flora on my Twitter feed as she keeps fighting and grows even stronger.
Much love and thanks.
