On the 16 March our beautiful twins were born 28 weeks and 3 days premature...

On the 16 March, my husband Adam and I became parents when our beautiful twins, Matthew and Nichole, were born at the Rosie Hospital in Cambridge. They arrived very early, 28 weeks and 3 days premature to be exact, so we were very surprised to meet them so soon. Matthew was born weighing two pounds six ounces and Nichole was a little smaller weighing just two pounds and four ounces. We were thrilled when they were born but they were both so tiny, it was really worrying too. We live in Essex which is about a 40 minute drive away from the Rosie Hospital. We had always planned to give birth at the Rosie Hospital even though it was further from home because it was a twin pregnancy and we were worried that there may be complications. My mum is a twin and was born very prematurely too, so given the family history I was slightly on edge. Giving birth at a higher level hospital just seemed the most reassuring and sensible thing to do. Understandably Matthew and Nichole were immediately rushed into the Neo-natal Intensive Care Unit (NICU) and luckily for the first three nights we were able to stay close to them in a room on the Lady Mary ward. This was so helpful, we were really worried about the twins; we didn’t want to leave their side and we certainly didn’t want to travel home and be a 40 minute drive away from them. Doctors told us that Matthew and Nichole would both be in hospital until they reached their due date, which was the 5th June, almost three months away. When we realised that we would need to stay at the hospital for the forthcoming weeks, nurses on the ward told us about Chestnut House, a ‘Home from Home’ provided by The Sick Children’s Trust. Alan, the house manager came up to the ward to meet us and told us that he had a room that we could stay in, so on Tuesday 19 March we moved into the house. We were so relieved - not only did we have somewhere to stay but we couldn’t have been closer to the twins if we had tried; it was only a lift ride away in the same building. We had our own bedroom and en-suite, a kitchen, lounge and laundry room. It was like a little home and it really did become our home for seven weeks. Our family and friends even loved it; as you would expect when we had Matthew and Nichole everyone was keen to come and meet them, so it was great that we could take them back to Chestnut House for a cup of tea in a calming environment as opposed to sitting in the hospital canteen. Matthew and Nichole were both jaundiced and they were put on ventilators. Apart from this we were told that they were doing well and they just needed to grow and become a bit stronger before they could come home with us. The nurses on the wards were lovely and always tried their best to keep Matthew and Nichole together; we didn’t want them ever to be apart as we knew that they were a comfort to each other and after all, they hadn’t been separated in a whole 28 weeks! However, Nichole was a bit behind Matthew; he just seemed to be a step ahead of her and she seemed to be playing catch up a little bit with him. One night when we were in bed in Chestnut House, the nurse called through to our phone in our bedroom (we had a direct line to the ward) and told us that Nichole, four weeks old at the time, had taken a turn for the worse and was showing signs of Sepsis, a severe infection. They also suspected that she may have Necrotizing Enterocolitis (NEC), a condition where the bowel undergoes necrosis, the death of tissue. We ran down to the ward and stayed the rest of the night by her bedside. We were so grateful to be staying in Chestnut House; if we had been at home or in a hotel, it would have taken us a lot longer to get to Nichole’s ward. Thankfully a couple of days later doctors told us that Nichole didn’t have NEC or Sepsis, which was brilliant news. However she still wasn’t progressing as well as Matthew and the doctors weren’t sure why this was, until after many tests she was diagnosed with a heart defect. Nichole was diagnosed with Tetralogy of Fallot (TOF), a serious congenital heart condition, which really frightened us. We were told that she would need heart surgery at Great Ormond Street Hospital (GOSH) and we just had to wait until she became a bit stronger to undergo the surgery. Our time at the Rosie Hospital can only be described as an up and down rollercoaster. We were happy some days and other days were filled with pure worry and anxiety that our little babies weren’t going to make it through. The worst days were those when Matthew was showing a lot of progression and Nichole was deteriorating, because we simply just didn’t know how to feel. We were happy on one hand but on the other we were terrified. We felt totally helpless; all we could do was sit on the ward with them and try our best to comfort them and be there. We met some good friends while staying in Chestnut House, all of whom were going through similar situations to ourselves and had poorly babies in the Rosie Hospital. The house was great for that aspect, as if we wanted to be sociable and take our minds off everything that was going on we could easily go to the kitchen or lounge and have a chat with someone. The house staff were amazing for this too, they just seemed to understand so quickly what mood we were in and they just knew what to say. But on the days when we didn’t feel like socialising and preferred to be on our own we could just go to our bedroom and shut the door. On 6th May, after spending seven weeks in intensive care, Matthew was discharged a month earlier than we thought he would be. That was great news, but we were also told that Nichole would have to stay in intensive care as she wasn’t well enough to come home. We were heartbroken; we didn’t want to separate Matthew from his sister and we also didn’t want to leave Nichole’s side. Even though Matthew was able to stay in Chestnut House with us if we wanted, we decided it was time to go home. The same day that we took Matthew home Nichole took a bad turn and aspirated some of her milk, something which we think was a sign that she wasn’t too happy to be separated from her brother, but soon after this we were told some good news. After a second echocardiogram, doctors discovered that Nichole didn’t actually have TOF but had a less complex heart condition. Nichole had three holes in her heart and we were told that these were due to three separate conditions; Ventricular Septal defect (a defect in the wall dividing the left and right ventricles of the heart), Atrial Septal defect (a defect in the septum between the left and right atriums of the heart) and also a valve that needed repairing. Even though this sounds absolutely terrifying, it was a lot better than what we had been told previously; much more common and straightforward to repair. Nichole was also suffering from chronic lung disease, but we hoped that once her heart was repaired less strain would be put on her lungs. Nichole still needed to have major heart surgery at GOSH, but we knew she was being taken to the best place and soon would be on the road to recovery. Alan, with whom we had stayed in contact, was so helpful and when we told him about Nichole’s condition and surgery, he told us that The Sick Children’s Trust also had ‘Home from Home’ accommodation at GOSH. He kindly rang Tina, the house manager at Guilford Street House to see if she had a room we could stay in. She did, and amazingly once again, we were welcomed with open arms into accommodation run by The Sick Children’s Trust. Adam, Matthew and I all stayed in Guilford Street House for ten days from the 24th June. It was fantastic as we could all be together as a family by Nichole’s side where she needed us. The house was lovely and again had all the facilities we could possibly want, just around the corner from the hospital. Nichole’s heart surgery went really well and she was transferred back to the Rosie Hospital for two weeks while she recovered. Once Nichole’s heart was treated, her lungs also began to recover. When her heart was struggling, her lungs were put under a lot of pressure too, so when her heart was fixed, her lungs recovered well too. Finally on the 17th July Nichole was able to come home with us and our amazing little family is now at home together. We have had such a difficult time over the last few months and The Sick Children’s Trust has been there for us every step of the way. We had never heard of the charity before. I think it is always the way; you never hear of these wonderful charities until you find yourself in need of their help. Looking back now on what we have been through we can’t imagine what we would have done without their help. Having the ‘Home from Home’ accommodation to stay in allowed us to spend every minute with Matthew and Nichole, from early in the morning to late in the evening, whilst giving us time to rest as well. We bonded with Matthew and Nichole as soon as they were born and this continued to strengthen because of the amount of time we spent with them. For this, we will never be able to thank The Sick Children’s Trust enough. We have kept in contact with both Alan and Tina and it was lovely to be able to go to Chestnut House’s first birthday party a couple of weeks ago, with Matthew and Nichole who are now five months old. It has been a long journey and visiting the house brought us back to where we started but this time with a very happy ending. Gemma Jarratt, Matthew and Nichole’s Mum

Beau was delivered weighing just 1lb 1oz, the equivalent to only half a bag of sugar...

The Sick Children’s Trust’s Chestnut House became our home for just over two months from February 2013, when our son Beau was born 14 weeks premature at the Rosie Hospital in Cambridge. We had never heard of the charity before, until we found ourselves in need of their help. On 3rd February 2013, at 26 weeks pregnant I started experiencing bad chest pains. My partner, Darren and I were really worried as I was already on medication for my placenta and we had previously had a stillbirth. As you can imagine we were on edge anyway throughout the pregnancy, even without any symptoms. We went straight to A&E at Southend Hospital, our local hospital in Essex. When I got there doctors found that I had high blood pressure, a high level of protein in my urine and also that my hands and feet were beginning to swell. They took a blood test that showed I had pre-eclampsia and also that my placenta had stopped working which meant the baby was very underweight. We were in shock; before this I’d had no problems with the pregnancy. It was all quite unexpected and felt so surreal. I was immediately transferred from Southend Hospital to the Rosie Hospital in Cambridge, as we were told I should be treated in a level three hospital. I panicked; being told that I had to go to a higher level hospital really scared me and I knew from this point onwards that my condition was serious. Once I was transferred, doctors told me that I would have to have an emergency C-section. As you can imagine, we were terrified. It was so early for our baby to be born and we were really frightened about what was going to happen. Three days later, on the 6th February 2013, Beau was delivered weighing just 1lb 1oz, the equivalent to only half a bag of sugar. He was the second smallest baby to be born in The Rosie Hospital. We were completely overwhelmed; we were excited to meet our baby boy but we were also filled with worry for him. He was so small and was rushed off by the nurses straight away. As Beau was so premature and small he had to stay in hospital in the Neo-natal Intensive Care Unit (NICU) and we were told that we were unable to stay on this ward with him. We live in Southend, Essex which is almost 70 miles from the hospital. The thought of being this far away from Beau was just unimaginable. Beau’s doctors told us that his condition could change at any moment and they had to take it hour by hour. The thought of something happening to Beau and us not being with him was so upsetting, we just couldn’t leave, and we would have slept on the hospital floor if we had to. So when a nurse told us about the ‘Home from Home’ accommodation The Sick Children’s Trust provides, we felt a weight being lifted off our shoulders. Alan, the house manager of Chestnut House, the charity’s ‘Home from Home’ at the Rosie Hospital, came up to Beau’s ward and met us. He told us that he could offer us a room, which would be free of charge for the whole of our stay, and led us straight to the house. It was brilliant; it was just below the NICU so whenever we went back to the house we were only a lift ride away from Beau. If we hadn’t had the house, we would have had to pay for a hotel or pay travel expenses back and forth from home, which we wouldn’t have been able to afford on top of the everyday payments we had to keep up with at home. If anything had happened to Beau during the night, it would have been awful having to travel to the hospital from home. Being able to stay in the house also gave peace of mind to our family; they knew that we were staying somewhere safe with a support network around us. It was lovely for them too, that when they came to visit Beau they could come and see where we were staying and have a cup of tea and a chat with us in a quiet environment away from the chaotic ward. Beau spent a total of four months in hospital and overcame many complications. Three of these months Beau spent in the Rosie Hospital before being transferred to Southend Hospital. During this time he suffered chronic lung disease and his left lung collapsed which led to him needing a ventilator for 35 days. He went through three lumbar punctures, 14 blood transfusions and was diagnosed with septicaemia. He also had a loss of blood flow to his left hand causing it to turn black. For a time we thought that he may lose his hand as a result, which was really traumatic for us as we knew it would be life changing for Beau. Fortunately doctors were able to save his hand, but he did lose two of his fingertips which although really upsetting was a lot better than what might have happened. He went through all of this and it seemed to be just one thing after another; it was difficult for us to watch him in such distress and so poorly, especially as he was really tiny. Aside from all the other complications, Beau also spent six weeks on continuous positive-air-pressure (CPAP), which used mild air pressure to keep his airway open. Doctors also discovered that he was suffering from Patent Ductus Arteriosus (PDA), a heart condition which occurs when the Ductus Arteriosus, the foetal blood vessel, fails to close after birth. As this remains open, there is an irregular blood transmission between the arteries in the heart. However, Beau’s duct closed itself in the end without treatment, which was great as we really didn’t want him to have to go through heart surgery as well as everything else; we didn’t know how much more he could handle. While in hospital Beau also took part in two research programs, one checking his brain for a week and the other measuring his blood sugar levels through a transmitter in his leg. The three months Beau was in the Rosie Hospital were heart breaking; every day presented a new challenge and we were so scared for him. It seemed like every time we started to relax, thinking Beau was one step closer to recovery, something else got in the way and a new diagnosis or treatment was necessary. Needless to say, in these circumstances Chestnut House became our sanctuary. It was such a positive place to be and after a really stressful day on the ward, walking through the house doors gave us a great sense of relief. Even the décor was relaxing; I could just go in to my bedroom, shut the door and let go in the quiet of my room. I had a direct line from the ward straight to my bedroom, so if anything was to happen to Beau when we weren’t there, we could be notified quickly and be with him in less than five minutes. There was also a lounge with a television which was a great distraction, and laundry facilities. Looking back now, I wonder how doing the laundry or watching TV could become so important, but while Beau was in hospital it was these things that kept me going. Doing the washing, cooking a home-made meal and watching a bit of TV gave Darren and I a sense of normality. Our world was turned upside down and continued to feel that way for the many weeks Beau was in hospital. Being able to carry out everyday tasks helped us to keep going. Sitting in the lounge or around the dining table in the house provided a great opportunity to talk to other families. Friends and family can only try to understand what you are going through, but the other families in the house just knew. It was like our own bubble; only we could understand what each other felt - the feeling of utter helplessness. Also hearing other people’s stories helped because the chances were we had experienced the same thing ourselves so we could pass on advice. Or perhaps you were going to experience something similar in the future, so it was good to know what to expect. Aside from the wonderful support we received from other families in the house, the staff in the house were fantastic. Alan was a God send and words cannot express how much he helped us during our time at the Rosie Hospital. He truly has a gift for reading people and situations; he was always there for us and always knew what to say, but he would also recognise when we wanted to be alone and didn’t want to talk. He ran the house beautifully and his caring and helpful attitude made us feel so at home. After spending a further month in Southend Hospital, finally on the 3rd June we were able to bring Beau home and we were thrilled. He is still on oxygen but is home with us, which is the most important thing. Beau wasn’t actually due until 16th May, so we are very lucky to have him home with us now. He has been through so much early on in his life but he has been so strong. I could be by Beau’s side every day because of The Sick Children’s Trust and Darren believes that this is why Beau came through his illness. I was able to bond with him and his doctors used to say that he reacted to my voice and touch in a positive way. For this I know I will never be able to thank the charity enough. If it wasn’t for The Sick Children’s Trust and the house staff, I am not sure how we would have got through this situation. We faced our worst nightmare and we will never forget the support and love shown by Alan and his team. Beau is now doing well and we hope to go back to Chestnut House soon and visit all the staff. Emma Avery, Beau’s Mum