Last summer, during a relatively normal pregnancy with identical twin girls, I went into spontaneous labour at 27 weeks. Just over 4 hours later I’d given birth naturally to two living but dangerously tiny babies. The labour was scary - I had no concept of how big the girls were going to be or if they’d even look like babies - but to be honest, my main focus was just trying to cope with the contractions; not fully aware of the twelve other people in the room and the chaos going on around me.
The girls were whisked off for special care immediately after birth - wrapped in plastic with huddles of doctors round them. A couple of hours later John brought me photos of the girls - my first real look at them. Photos don’t really give you a sense of scale and when the incubators were wheeled to my bedside en route to the Neonatal Intensive Care Unit at Leeds General Infirmary, I realised how tiny and vulnerable they were. Vivienne came in first, just 1lb 13oz to her fragile body; head smaller than a tennis ball. When they left Harrogate General Hospital that morning and were transferred to Leeds, I thought that if anything were to happen at least I’d seen them.
So completely reliant on machinery, tubes and wires to keep them alive, all I could do was hope that they’d make it through each day. We were thrown into a completely new world not understanding the emotional roller coaster we were starting on or what ups and downs we’d face on the journey. One part of me was full of fear and worry while another part was the new mother of two beautiful daughters and feeling like I was the luckiest person in the world.
Those first few days of visiting intensive care were very upsetting. With so many beeps and alarms going off it was too stressful; I could only cope at their incubator-side for ten minutes at a time. John coped much better, giving himself focus by quizzing the doctors and trying to understand what all the drugs and machinery did. With time I was able to stay in the room longer, touch them through the portholes and with the nurses’ patient help learning what the flashing numbers and alarms meant. If the nurses were calm, I didn’t need to panic.
The thought of holding my daughters for the first time was terrifying. I was so scared that I would damage them. A charity for premature and special care babies called Bliss had given us a DVD to help explain some of the things we’d be going through. After going home and watching a clip which showed other parents holding their premature babies and learning of the benefits it gives to them, I gained the courage to do it. We were able to hold them for the first time a week after their birth.
First hold - Harriet
The next 3 months became a blur of emotional and physical exhaustion. Harriet would have good and bad days, Vivienne would have good and bad days and on those bad days it was hard to keep positive. By a bad day I mean when they had lots of bradycardias and apneas, watching the nurses press the emergency button and watching them ‘bag’ them, Harriet’s collapsed lung, waiting for brain scan results to see if the bleeding had got worse, tests to see if they’d caught infections, Vivienne’s open heart duct and possible heart op, restrictions on their milk intake when not coping too well, when they’d lost weight. The staff would remind us ‘three steps forward and two steps back’. So true. On those good, uneventful and weight-gaining days, I’d be so happy, sometimes too happy, but with practice I became better at teaching my mind how to take it one day at a time.
Looking back, I don't even know how we managed to keep going. Every day was manic. Some days we were so exhausted, we didn't even have the energy to hold them or to wash and change them. We'd just stare or rest on the hospital chairs and the nurses understood. The nurses would happily get on and wash, dress and tube feed them for us. Some days I was so tired that I had to stay at home in bed (about 10 days in total). I’d feel guilty about it but knew that John would be there with them.
I felt guilty about only seeing Asher in the mornings and just before bed. I figured that whatever we decided to do, I’d still feel guilty. We put a routine in place which meant that the same handful of people would be looking after him on the same afternoon each week. What a massive help that was. It had to be a set routine as I didn’t have the mental energy to work out different people on different days. We’d often come home and he’d ask us, ‘how are the girlies doing?’ It was so lovely. He’s coped remarkably well this past year, what a trooper.
Harriet came home on the 6th December, 2 days before her due date and 10 days before Vivienne came home. I was concerned about having one baby in hospital and one out of hospital but we knew that Harriet was ready. Having one baby in and one baby out was even more frantic. Initially I didn’t like the idea of them coming home at different times but the one positive was that I was able to learn all of Harriet’s medications and amounts before Vivienne came home - having to learn two sets of amounts at once seemed like too much. I looked after Harriet and Asher at home and John visited Vivienne in hospital. It meant that I was not able to visit Vivienne in hospital as much, which I found really difficult and when the day came to bring her home, I was too exhausted to go with John and pick her up. It was amazing having them both home. Our lives suddenly switched back to our usual family routines, it was the perfect Christmas present.
Home for the first time.
Harriet and Vivienne were admitted back into hospital in March for six weeks with severe bronchiolitis. The staff weren’t too surprised - premature babies are more susceptible to respiratory problems due to their small and underdeveloped airways. When Vivienne was having her really bad few days, they were the worst days of my life. After not coping on the ventilator, she had to go on an oscillator (I didn’t even know they existed), suffered a tension pneumothorax and twice needed adrenalin shots to get her heart back going. It was so difficult but we were strengthened by messages from family and friends who offered their love, thoughts, prayers and fasting. Whilst there, we met parents of other children who were in intensive care. Talking with and getting to know them was a real eye opener and a blessing. You realise that there are people who have children in and out of hospital all the time, with long term illnesses and while it doesn’t take your pain away or make your situation any less significant, it does help put things into perspective.
Out of intensive care and spending some time together (Apr).
It's been an absolute miracle to see my daughters grow from such a small weight. When I remember how tiny and fragile they both were, especially Vivienne - she looked so helpless. Now when I look at them, they are HUGE. They’ve come so far. When they were first discharged from hospital they were on two different milks, we had to give them several medications and most of them several times a day; erythromycin, ranitidine and carobel (all for their reflux), sytron (iron) and joulies phosphate (to help with their bones). With the nurses’ help we were able to get our heads around it all, learning the different amounts for Harriet and then for Vivienne. And now, at 14 months old, I’m pleased to say that they are not on any of it.
Of course, other peoples’ experiences of having premature children do not have such a happy ending and I realise that ours could have easily been very different. Many catch infections which can have long term effects, cerebral palsy, brain damage, bowel complications and those who do not make it through the fight. I cannot even begin to imagine or understand the feelings of losing a child.
I’m so grateful to all the staff who’ve looked after my girls. You were all amazing, I wish I could meet and hug you all. I’m grateful for charities like ‘The Sick Children’s Trust’ who housed us in Eckersley House, which is right opposite the hospital, for over a month, and to the charity Bliss who we knew were there if we needed you. To the parents that we met and chatted to during our time in hospital, you were the only ones we spoke to who knew what we were going through - you helped relieve the isolation. The outreach team that came out every few days to see how we were doing. You were brilliant - I had a phone number I could call at any time if I had any questions or needed anything. To family and friends who left meals on our doorstep, sent texts and cards of support - all so helpful - better to say something than nothing at all, it really helped get us through. If we didn’t get chance to reply or take you up on offers, it wasn’t anything personal, we genuinely had the help we needed and learned to be proactive and ask for it when we were really stuck.
So how’s life with a 3 year old and 14 month old twins? Chaos but amazing! Let’s just say that my back has had better days and Asher starting nursery two and a half days a week has certainly reduced my stress levels! I’d be lying if I wasn’t a little concerned about this winter with its colds and illnesses but we’ve all had our flu jabs, they take their daily multivitamins and Vivienne is now on a medication to help her lungs through the winter months. So if you’ve got a cold or chest infection - stay well away!
I sometimes wonder why I’ve had this experience - maybe I’ll never know. I’ve certainly learned a lot (medical wise), been reminded of what really matters in life and feel that John and I have grown closer as a result. I hope that I can have the opportunity of helping other parents in a similar situation, bringing relief and understanding. Of course, Harriet and Vivienne won’t remember any of this, but their first year of life will forever have an impact on mine.
