Without Chestnut House I would have felt very alone

William was born premature weighing the same as a bag of sugar. Read his story here

With his big brown eyes, discovering hands and beautiful smile you’d never believe what our baby William has been through.

William was born in January, but he was born very prematurely – he was 25 weeks old and weighed just 1lb. He was tiny. The smallest thing I have ever seen. We didn’t expect him to come so early, but had indications that he might when my waters broke that week at work. Luckily, after a scan at our local hospital in Peterborough, we were told it should be fine and that William would stay in a little longer. I managed to get home for two days but then the contractions started. Another quick scan revealed William was coming, and he was in a hurry. Once my waters broke, within four minutes William came into our lives.

But as soon as he arrived, there were problems. William was taken to the other side of the room – I didn’t even get to hold him.  I was trying to see what they were doing to him but couldn’t quite make it out. They told me he was being ventilated and were taking him to the Neonatal Intensive Care Unit (NICU) straight away.

That wasn’t all though. William needed even more help and we were told he had to be transferred to a specialist neonatal hospital, in Cambridge called The Rosie. He would be taken by ambulance in just a few hours.

I didn’t know what to think. Each minute felt like forever until the time came for him to go. Before he went, we managed to squeeze in a visit and I just balled my eyes out. There were so many tubes, wires and monitors covering my tiny baby and I felt a mixture of absolute love filled with fear.

It wasn’t until the following day that I was discharged, but during this time both hospitals were really good at keeping us updated with his condition. They rang to say he was stable and settled and we could see him when we arrived.

“Without Chestnut House over the next five weeks I would have felt very alone. James would come up as much as possible, but I needed people to talk to regularly. Having Chestnut House gave me that, there were other families living in the ‘Home from Home’ who were going through similar experiences.”

The Rosie Hospital was over 45 miles away from our home and we had nothing with us. And we didn’t know how long we’d be there. It would take an hour every day to just travel to be with him from our home, which was vital time we needed to spend with our son. I began to panic that I may need to leave my baby’s side when he needed us the most.

But before the reality of our worries kicked in, they were put to rest as we were told that there was a place we could stay, free ‘Home from Home’ accommodation run by a charity called The Sick Children’s Trust. Chestnut House was its name, and it was located at The Rosie Hospital, barely a minute from NICU where William was. We were told there was a key which had our names on it, and after seeing William and when we were ready, we could let ourselves in.

When we saw William at The Rosie we were shocked. His tiny body just wasn’t ready to do all the jobs it needed to. He was completely machine-dependent.

I just wanted to hold him, show him how much I loved him and tell him everything would be OK…But I couldn’t and it was heart breaking not being able to comfort my son.

Over the next ten days there were lots of ups and downs, lots of examinations, monitoring, and lots of waiting. But at ten days old, William and I had our first cuddle. I felt so lucky. It was such a good feeling to hold my baby. He needed to be kept warm so I popped him under my top and held him on my chest. Smelling him, touching him was euphoric. I’d waited all this time for this moment and it was perfect.

During this time both James and I were staying at Chestnut House, but after two weeks James had to go back to work. Without Chestnut House over the next five weeks I would have felt very alone. James would come up as much as possible, but I needed people to talk to regularly. Having Chestnut House gave me that, there were other families living in the ‘Home from Home’ who were going through similar experiences. They understood how I felt. Not only that, the house staff, Abi and Olena, were wonderful. They were there to talk to, and every day would ask about William’s progress. They’d talk to me and show me the stories on the wall of other families who had passed through the house and it’s amazing how those similarities help. They give you hope.

Over the next few weeks, William kept going back and forth with his progress. One minute he was doing really well, but then he’d take ten steps back. He was treated twice for the bowel disease NEC, he had a lumber puncture as they thought he had blood poisoning, and ended up having three blood transfusions.

You can’t imagine all these procedures being done on a baby that weighs less than a bag of sugar can you?

It was at times like these that Chestnut House was very important for us. We were literally just a few steps away so if I wanted to be there or needed to be there I could be.  I didn’t have to worry about him becoming ill suddenly and not being able to be with him, Chestnut House made it possible for me to be there and hold his hand throughout it all.

Because of his prematurity, Williams’s lungs were significantly under-developed and he was diagnosed with chronic lung disease. He used to just stop breathing and it was a horrible thing to see and it happened when he was about four weeks old when I was holding him. All of a sudden he became very floppy and very grey. The alarms from his monitors deafened my ears and he was taken off me and put on oxygen. At that moment they brought him back to life.

We had had a few cuddles up to then, but after that it made it very hard for me to hold him. I was too scared. What if it happened again? As the weeks past though, William did begin to improve. We spent seven weeks at The Rosie and in the last week, he became bigger and stronger and was taken off the ventilator. We left The Rosie and were sent back to Peterborough where he needed another blood transfusion, but again within a couple of weeks he was even stronger and we were eventually allowed to take him home – ten days after what was his due date in May.

Since we’ve had William home, there have been a few complications but the important thing is that we have him home. And despite the first few months of our family life being spent in hospital, we are now looking forward to celebrating William’s first Christmas and first birthday in January. We can’t wait as we absolutely love Christmas – and we know William will too. He deserves a very special one, as he is a very special boy who has pulled through some of the most horrendous illnesses.

Amy Boulton, William’s Mum

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