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Nicki, Henry and Archie's story

24 February 2017

We were quite shocked when we found out we were going to have twins. Although I was a little big for 12 weeks, it was still a surprise when the sonographer said, "There’s baby number 1… and there’s baby number 2…" However, once we were over the initial shock, we were really excited and got busy researching what to expect and what to buy.

We knew there was a risk of premature labour (although we obviously weren't expecting 23 weeks!), so we read up a bit on neonatal care and had planned to visit a neonatal unit. We were making sure we were really organised, and had also booked a twin-specific antenatal class through TAMBA. But you can't prepare for everything!

I went into labour on Boxing Day last year and on 27 December at 23 weeks gestation I gave birth to my twin boys, Henry and Archie, each weighing just 1lb 2oz. We had been told it would be a miracle if either baby survived, but at first they both did pretty well. The neonatal journey was difficult, but we both were strangely comforted by all the equipment. My husband and I are both quite technically minded and knew that it was all necessary to ensure the health of our babies. We were still amazed and hugely relieved that they had survived the birth after being told that that alone would be a miracle.

However, we were a little naïve in the beginning, thinking that the equipment and doctors could fix anything, and unfortunately we were wrong. Things took a turn for the worse on day two. Archie became very poorly and nothing could be done to save him. We had him blessed and said goodbye while holding him in our arms.

After losing Archie it really hit home just how vulnerable our babies were and from then on we were in a constant state of worry for Henry, not knowing what the next day, hour, or minute would hold for him. We’d not dare to think more than a few hours into the future as things could change so quickly. I spent every day at the unit and as much time as possible with Henry, and felt lost being anywhere but at the hospital. I expressed milk by his side so as to minimise any time away from him, and I used to hate ward rounds, as parents had to leave the rooms. We also hated leaving in the evenings; it was so hard to leave Henry every night.

With his brother watching over him, Henry fought on. He had three infections, was on morphine for a long time, steroids to help his lungs, had countless x-rays and twelve blood transfusions. Although the journey was a rollercoaster, and there were several backwards steps along the way, he gradually went from strength to strength. The first obstacle was a heart problem that thankfully quickly responded to medication; the next steps were coming off his ventilator, collapsed lungs, and fighting infections. He became very ill with sepsis towards the end of January, which brought back memories of losing Archie. Thankfully, Henry pulled through and continued to get stronger, and a few weeks later was able to be rid of the ventilator for good.

Three weeks after he was born, we were finally able to cuddle Henry for the first time. We each held him for 15 precious minutes, which were magical. Our next cuddles were not for another two weeks, but once he was off the ventilator they became more frequent.

Once Henry was more stable, we were able to hold Archie’s funeral on 23 March. Although it was a sad day, the service was just as we wanted. We both managed to stand up and speak, and the music and poem we had chosen were just perfect. Some of the nurses and consultants from the unit even came along, which was very touching.

Although the whole experience was difficult, there were lots of joyous moments during the time there: celebrating milestones (even Henry’s first poop was a moment of celebration!), seeing in the New Year by Henry’s side, receiving certificates for weight gain or improvements in breathing. We very much felt like part of a second family there as the staff were all genuinely interested in us and Henry, and they were there for all the ups and downs, offering shoulders to cry on and congratulatory hugs. So many nurses came to visit us while rooming-in to say goodbye, which was very touching.

Although I’d never want Henry or anyone else to go through the experience, we are both happy with the parents we have become as a result of our journey. We appreciate and celebrate everything he does (even if it is a cuddle at 2am!). He is doing very well. His health visitor and consultant are very happy with him. Fortunately, he has not had any eyesight or hearing problems and is still breastfed, between solids.

While in the unit, we enjoyed reading to Henry as this was the only 'normal' thing we were able to do that we would have done at home anyway. Reading a bedtime story became part of our routine, and I read during the day too. Another thing that helped was that the unit had stories from other parents on their walls. We read every one and they really helped to inspire hope.

That’s why, since bringing Henry home, I have written a couple of children’s books: one to share his story with him, and an adapted, generic one for other preemie parents to share with their children. Links can be found at: http://miraclebabies.co.uk/books/

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages

If you would like to share your story with Bliss, please email media@bliss.org.uk

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