Rosie's Journey
On 27 February 2021, our second daughter, Rosie, was born by emergency c-section at 24 weeks and one day, weighing 1lb 5oz (595g). Lauren’s pregnancy had been fairly easy until six days earlier when she was rushed into hospital with severe preeclampsia, which later developed into HELLP (Hemolysis, Elevated Liver enzymes and Low Platelets) syndrome, causing her liver to start failing. I got the call on the Saturday to say, “This baby is coming out today!”, so I quickly arranged for my parents to look after our five year old daughter, Georgie, and made the 45 min journey to John Radcliffe hospital in Oxford.
I spent an intense 15 mins with Lauren before we were taken into theatre. Covid restrictions were in full force, and neither I nor Georgie had been able to see Lauren since she was whisked away in an ambulance, six days earlier.
Rosie, between two and four weeks old
Life in the NICU
Rosie and I made our way to the NICU for the start of her two month stay there. It was immediate action stations! At one point I counted 11 people around her incubator, stabilising her, intubating her and readying her for the difficulty of life outside the womb. I tried to take in as much information as possible and catch as many glimpses of my tiny little girl as I could without wanting to get in the way at all. All the while, keeping Lauren updated by text message. My lasting memory of those first few hours was how incredibly hard it looked for Rosie to breathe.
Lauren recovered well in hospital for a few days before coming home for an emotional reunion with Georgie! With the help of incredible family, friends and medical staff, we quickly adjusted to this new life. Juggling getting Georgie to school and back, daily one and a half hour round trips to the hospital, weekends staying onsite in the brilliant Ronald McDonald charity hotel, running my busy business from one of the hotel rooms, spending as much time sat next to Rosie’s incubator, talking to her and having as much contact with her as possible. Looking back on it all is overwhelming; but at the time it was a simple case of one day at a time.
Rosie recovering from her heart op, 5 weeks old
Rosie, one day old
A whole new world
I had zero experience and understanding of premature babies and so it was pretty shocking to see how quickly and vigorously the life support started once Rosie was born. The medical staff in theatre were great, and they called me over to see Rosie and to take pictures whilst a busy team surrounded her, covering her with probes and feeding breathing apparatus into her lungs. I don’t remember feeling worried or panicked at all because everyone seemed calm and confident. In hindsight, I honestly don’t think I recognised or acknowledged that what I was seeing was a real baby. I can’t really explain it. Something that looked so out of place outside of the womb and surrounded by people and machines just didn’t feel real to me. It’s stating the obvious, but she was TINY! She was a dark red colour, and her eyes couldn’t open yet. She couldn’t make any audible sounds and the medical staff were doing her breathing for her. I mean, it must be a rough ride for any baby coming into this world, but this was something else.
Clinically, for Rosie, things changed so quickly. Every bit of information from the consultants felt major and keeping up with the ups and downs of a baby with the odds stacked against her, felt manic. Every monitor alarm and test result felt potentially life-threatening; and they were, but the staff did such a great job of keeping everything feeling positive and ‘routine’ – it helped a lot.
Rosie endured a lot of traumatic experiences and procedures, and there were many major hurdles in those first few, critical weeks, of which her greatest was a trip to Southampton hospital to have an operation to close a valve in her heart which commonly remains open in premature babies (PDA). Her recovery from the operation was by no means smooth and provided some of the more harrowing moments we experienced, but after a few days, she started to make some progress in terms of weight gain and slight reductions in dependency on the ventilator. This was the breakthrough that, within a couple of weeks, resulted in her being discharged from the NICU in Oxford to the HDU, closer to home, in Stoke Mandeville.
Life After NICU
Rosie spent a further three and a half months with an incredible team at Stoke Mandeville, where she met lots of amazing nurses who she still visits even now. Clinically, her progress was slow, and she had many setbacks. She suffered infection after infection and her oxygen-dependency was worryingly high for a long time. It felt like she’d never be able to come out, but we, along with the nursing team, fought hard to be able to finally take her home mid-August. She came out of hospital with a 24/7 oxygen supply and a feeding tube. As I write this, she is 15 months old now and still has both, although the oxygen supply is only needed overnight now. I’d love to say that it has all been plain sailing since she came out, but of course, it hasn’t! There have been some scary moments with the oxygen and with infections and emergency trips back to hospital; and we will never get used to the trauma of having to replace her feeding tube after she pulls it out, but she has grown and developed well and in a couple of months from now, but for a few battle scars, you would never know she had been through and conquered the things she has.
Rosie is the absolute star of this story – a truly amazing example of strength and determination, we love her so much. And to everyone who has played their part in her story, thank you so much.
Rosie and Georgie meeting for the first time, five and a half months old
Advice for NICU parents
Here’s some condensed advice, based on our experience. We hope it helps.
Take one day at a time and consciously try to avoid overwhelm
Limit unproductive medical researching
Say yes to every bit of help people offer you (food, lifts, childcare etc.)
Make everything as normal as possible for any siblings
Take time to let off steam when you can
Make notes – the information from the medical staff comes thick and fast
Ask questions if you don’t understand
Take lots of photos and videos
Have as much contact with your baby as you can
Thanks to James for sharing Rosie’s story.