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Matt's story

03 February 2017

We will always remember Monday 5 October 2015. As it was a twin pregnancy, we'd been for an additional scan at 24 weeks and all was fine. Sal started to feel uncomfortable over the weekend, but we expected more discomfort with twins than with our daughter, Isabelle.

On the night of 4 October it got too much, so we went to Russell Hall Hospital to be checked. Then Sal's waters broke. We started to panic when they said we needed to be transferred to a hospital with specialist care, as Sal was only 25 weeks gone. Before we could think, the ambulance had arrived, and off to Coventry it was. Sal still describes it as one of the most uncomfortable journeys, and I still go on about beating the ambulance despite a detour to Tesco for supplies and home to check on our daughter! At this point we had no idea what we would endure over the next eight weeks.

The only thing we could do was wait. Neither of us was good at that, but we tried to settle. The lovely staff got a mattress for me to lie on on the floor. It was around 6am and, after making a couple of calls to work and family, Sal started to get really uncomfortable. But before they had a chance to come into the room, Sam, all 1lb 12oz of him, was with us.

The next hour is a bit of a blur, but more than anything I remember thinking, "It'll be OK – they're here now". We'd already decided on the names Samuel and Harry, so decided the first born would be Sam. 45 minutes later, with over 20 doctors and nurses with us, Harry arrived, weighing 1lb 10oz. As I always say to people, that's around three quarters of a bag of sugar. Sal got to say a brief hello to Harry before both were whisked away to the NICU.

We finally got to visit them a few hours later. They were so small – in incubators, ventilated and covered in more wires and leads than we could comprehend. We couldn't hold them, we couldn't do a lot. Unless you've seen a prem baby, it's hard to explain how tiny they actually were. Photos don't do it justice. Their eyes were still fused shut and ears barely formed. The doctors and nurses were great those first few days as we slowly came to understand what lay ahead.

We got involved changing nappies, and Sal was a milk-expressing superstar, giving them both tiny amounts of liquid gold. Our daughter Isabelle met them on day one, although she didn't really understand what was going on as we settled in for what was going to be a long hospital stay. It was difficult commuting every day, but we wanted to keep some normality for Isabelle.

Over the first week more tests were done, and we started to understand the huge monitoring sheets. They must have been fed up of me asking about the latest blood gas results, but I needed something to hang on to. Early into week two we met a doctor, for what would become a daily meeting, as they had found a bleed on Sam's brain that needed to be monitored.

Their prematurity meant under-developed lungs, giving them chronic lung disease. Both also had an open valve on the heart (patent ductus arteriosus, or PDA). As drug treatment didn't close the PDA, we were told surgery could be needed. Worry doesn't describe it. Sal focused on expressing milk to help them both. I would try to understand and ask questions, but they just needed time. Our boys had been robbed of 15 weeks with their mummy.

Towards the end of week two, we were told the bleed on Sam's brain had grown and he would most likely develop cerebral palsy. They were struggling to keep his blood pressure under control and his breathing supported; the next 48 hours were critical. You can't really think or focus on anything, you need and want to be there but you also need to support Harry and Isabelle. She was great, drawing pictures for them. I felt I needed to do something practical. I started working out how we would need to convert the house in case Sam needed a wheelchair.

Sam got through those 48 hours. He was still critical, but fighting. Harry was fighting as well, still very small but now tolerating food. Sam was back on a drip, unable to tolerate even the smallest drops of breast milk. We left the hospital on Monday night talking about how we would give Sam the best life possible, and then got the call at about 3am to say Sam was struggling and we should go over, so we did. Sitting there with our daughter, those moments would turn out to be precious and what we remember now.

Sam kept fighting but at some point there was nothing more they could do. We had to make the awful, heart-breaking decision to switch off his life support machines. He passed away in our arms later that morning. The nurses were nothing short of incredible, giving us the opportunity to spend as much time as we needed with our little boy, taking photos for us while we cuddled him and gave him a bath.

One of the hardest things we had to do was walk back into the NICU the next morning and see another baby in Sam's incubator, next to Harry. The staff in these units are special people and they couldn't have been more supportive and understanding. You just don't know where to be – think about Sam, worry about Harry, be there for Isabelle. I started organising the funeral, thinking, "This is the only party we will get to throw for him".

Harry was slowly growing but still ventilated and struggling to move to a different ventilator (continuous positive airway pressure, or CPAP). Different treatments were discussed - steroids or heart surgery to close the PDA. Each day the situation changed: let's wait, let's operate, let's wait. Finally, the decision was made to operate and the surgery booked for late November. Two days before that, the consultant decided to give CPAP one more go – and this time it worked! The surgery was cancelled. On the day of his planned operation, he moved from intensive care to HDU instead. It finally felt like we were taking big steps forward. Three days later, we were transferred back to our local hospital, Russell's Hall in Dudley.

Despite eight weeks that I wouldn't wish on anyone, it was hard to leave. This had become our home, our support and our life. It was also the only place where Sam had lived. Harry continued to make slow and steady progress but there was concern the ventilation had given him an eye disease (ROP) and his vision could be affected. I have nothing but admiration for the eye doctor, for the way he checked, explained to us and dealt with the situation.

Laser surgery went well, except for one particularly stubborn area, so further surgery was done in early January. Harry had to be ventilated again for the surgery and it took him a few days to recover, where we re-lived those periods of wondering if he will ever be strong enough to support himself. The second surgery, he pulled out the ventilation tube within hours – he was getting stronger and wanted to come home. Christmas was difficult, missing Sam and needing to be there for Harry, but Isabelle was great – lighting up the ward in her Santa outfit.

After 107 days, Harry came home, complete with oxygen tanks. We're still at hospital a lot for various check-ups. We're expecting him to get fitted for glasses in the spring. With it being winter, he's had three doses of bronchiolitis in the last couple of months – one that needed a week in hospital after his lung partially collapsed. The worry continues, as it does for any child, but he is getting stronger and is our hero.

Our neonatal stay will not only be with us forever, it will define us. Throughout our time in hospital, friends, family and colleagues were great; with messages to keep us occupied; talking to the staff –getting to know them and their lives, as well as other families with their babies. Spending long hours there you get to know people quickly.

We are determined that Sam’s legacy will be support for others through such times. Sam has already motivated us and generous people to raise funds for specialist chairs for families at Coventry Hospital. Generous colleagues formed team #prematurerockstar, and we ran the Warwick Half Marathon, raising money that we donated to both hospitals that cared for our boys.

Sal feels like she has been robbed of pregnancy (Isabelle was also six weeks early) but is incredibly strong and resolute to do whatever is needed to support Harry. We go see 'Sam's Garden', as Isabelle calls his grave, a lot and Isabelle will draw him pictures. It breaks your heart when she talks about her brothers and talks about Sam as much as Harry at times. When you meet new people and they ask you if you have kids, do you say two, for an easier conversation… but I feel that's dis-respecting Sam… and if you say three you have to explain, and people feel awkward. It's still only a year, we released balloons for Sam on the anniversary of him passing with Isabelle and Harry – we will every year. They are both our #prematurerockstars.

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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