Eternally grateful to those on the rollercoaster with us. This letter is honest, but terrifying, and thankfully we have three happy endings.
Our journeys started 16, 14 and 12 years ago – we’ve never known elation like it, nor such fear.
Our first beautiful baby was born at 34 weeks, 3lb 6, a strange grey colour and needing immediate oxygen. She was rushed to the intensive care baby unit.The doctors and nurses brought me a photo and laughed about the difficulty of working around the incubator with a Dad glued to it, and grinning like the Cheshire cat – all good natured.
The next day, she rejoined me on the transitional care unit. She was so small and needed tube feeding. Over the next twelve days we watched her slowly grow stronger and I was so proud of our small but mighty baby. We had established bottle feeding and were preparing to take her home when a nurse noticed that her belly looked swollen.
Very quickly x-rays were organised, the paediatrician came in and we were told our baby was very poorly with NEC (Necrotising Enterocolitis). Within a couple of hours she was in intensive care and I was being asked about organising a baptism (we are Catholic). It was – and remains the worst day of our lives. The next three days were bleak, family and friends couldn’t comprehend that she was now in intensive care. My breast milk dried up and we were in despair. It was truly awful and felt unfair – nothing prepares you for seeing your baby so ill. I would have swapped places with her a hundred times over.
Slowly over the week we noticed – between tears – the love surrounding us. From our family and friends, the neonatologist who was distressed at struggling to get a longline in, the nurse who, when we were unable to hold her or be there, would stroke her head to comfort her. After three weeks she was moved into high dependency, as feeding was eventually re-established, and then to the home unit. At ten weeks old we finally brought our baby home – just shy of ten weeks old. Now, only 5ft and just shy of 17, she has smashed her GCSEs and is doing 4 A Levels, and is working towards her goal of becoming a child psychiatrist or paediatrician.
Things seemed to be going better the second time around. We were told at the 20 week scan my son had an enlarged kidney but the outlook was good. At 24 weeks my waters went. We had an intense 48 hours in hospital but thankfully the labour didn’t start. My blood pressure was so high that I was required to take blood pressure tablets (labetalol and nifedipine) and was put on antibiotics. Somehow we got to 30 weeks when our boy decided to make an appearance. It resulted in an emergency C-section. Both sets of apgar scores were poor but he was alive and a tough cookie. I’d had to mix feed my daughter as I didn’t produce enough milk. Terrified of our son getting NEC, we requested that he was fed donated breast milk before mine kicked in. I didn’t need to worry – I produced pints of milk from the get go.
We learned that there aren’t any shortcuts. For the first ten days, despite being on minimum handling (so zero cuddles) he lost weight daily. He also intermittently needed oxygen. Then he turned the corner and started putting on weight. I remember being amazed that 1 mil of milk could be delivered by machine so amazingly slowly that you never saw it happen. Establishing feeding was very difficult. He struggled to tolerate increases in volume. He also forgot to breathe – fairly often. We got used to seeing a nurse with him, urging him on to breathe. Thankfully his journey was straight forward just extremely slow. We had many bradycardia episodes. I broke only once, when a nurse thought his stomach looked swollen. I turned drip white and just remember running away before I fell down. When I returned, the nurse asked me about my extreme reaction. I shared the dark days of NEC and how I didn’t believe we’d be lucky a second time. I was shocked how the nurse cared for me and not just our son.
Thankfully it wasn’t NEC.
At ten weeks old, feeding firmly established, future kidney checks booked in and an hernia op to look forward to once he got a little bit heavier, we brought our boy home. He was slow to sit, slower to stand and didn’t walk until he was just over 18 months. He also couldn’t hear until grommets were fitted at 5 years old but he is 14, way taller than me, and healthy. I can’t believe how far he came – from my waters going at 24 weeks to 14 and glued to his Xbox. It’s hard to tell him off for not submitting his homework when I remember how small he used to be.
We were terrified when we found out we had an unexpected baby number three on the way. The GP promised me that my specialist would follow me closely. The midwives reminded me that every pregnancy is different. The specialist prescribed aspirin to thin the blood to help the flow through the placenta. Something Doppler’s in my previous pregnancies had shown was severely compromised.
I also felt guilty that I’d let this happen – putting another baby at risk. For me, this was a perfect pregnancy. Waters stayed intact until broken by my midwives. There was talk of inducing me at around 30 weeks due to preeclampsia but the baby was growing okay so I requested to continue. At 35 weeks we got to a crossroads and I had to be induced for her sake and mine. I gave birth to a whopping 4lb 6oz girl. I was also given her to hold straight after her birth. Totally bizarre and something my husband and I hadn’t done before. We must have cuddled her for a good five minutes before my husband grabbed her as I fainted. She was popped in an incubator and taken to be examined. Later I was moved to a side room and after a while she joined me. Very quickly she went from an incubator with a little oxygen, a cot with a heater, to a cot. Very quickly she went from tube feeds to bottles of EBM to home at ten days old and weighing 5lb. My other two were only 5lb at ten weeks. My daughter is taller than her older sister, has slight hearing problems and a hole in her ear drum that refuses to heal, but she also has a hilarious sense of humour and is great fun.
All three children are extremely close and we’re so grateful for the love and care the doctors and nurses gave them. It wasn’t just care they gave, it was love. A little bit of each doctor, nurse, health care assistant and cleaner went into our children’s care. So many people rooted for and dug deep for them. We will never be able to repay everyone for the love that we received. I hope our letter isn’t too distressing, but I didn’t want to whitewash the worst of times, as that’s when we felt most alone but actually had the most love and support. I still can’t watch programmes about premature babies – they all take me back to the day we were asked about baptism – but that doesn’t mean I don’t feel grateful and lucky. It’s tough with coronavirus and it’s tough working in neonatal care some days but families like ours, need you more than anything.
Thank you for the work that you do.