Friday 26 April 2013

Every day is a step closer to taking our little boy home...

On 17th December 2012 our baby boy, Noah was born 15 weeks premature at The Rosie Hospital in Cambridge and was sent straight to the Neonatal Intensive Care Unit (NICU). His early birth was such a shock to my husband, Dan and I. It was even harder to cope with as we had been monitoring my pregnancy really closely to prevent this from happening, due to us losing our first baby at 24 weeks in November 2011. We met Alan, the house manager of Chestnut House, the day after Noah was born and he told us about the ‘Home from Home’ accommodation The Sick Children’s Trust provides. In one conversation all our worries about accommodation were solved; we were able to stay in Chestnut House free of charge while Noah was in hospital. The house is located within The Rosie Hospital and is only a two minute walk away from the ward, which meant that we were never too far away from Noah and could always be there for him when he needed us. We live in Bedford which is an hour’s drive away, so without Chestnut House we would only have been able to visit the hospital once a day. Apart from the distance this would have put between us and Noah, it would also have been really expensive to travel back and forth every day. The Sick Children’s Trust was amazing and provided exactly what we needed. Noah was really tiny when he was born due to his premature birth, weighing just 2lb. Aside from his tiny weight, we were also told that he had a pulmonary haemorrhage on his lungs and an open duct in his heart. If this wasn’t terrifying enough, the doctors also told us that there were some issues surrounding his brain. We were distraught and so worried; we just kept thinking that Noah was too tiny to have all these possible conditions. Noah was in The Rosie Hospital for two weeks and we were able to stay at Chestnut House every night, which was a God send. It enabled us to get some rest, shower and cook proper meals, all the while knowing that if anything happened we could be with Noah in a matter of minutes. When Noah did grow to become a little stronger we were transferred to Lister Hospital in Stevenage; this really raised our hopes and we thought Noah was getting better. But then he developed a severe case of Necrotizing Enterocolitis (NEC) and we were rushed back to The Rosie Hospital. For a second time on 28th January this year, we were lucky enough to be welcomed back into Chestnut House. Being at the house gave us time with our baby. Without this, we would have only been able to manage a daily visit and would have missed out on so much of Noah’s early life. If we had been in the position that many others find themselves in, being far away, we wouldn’t have had the special moments where we were able to connect with Noah. The close proximity of Chestnut House to Noah’s ward was really important for me too. Because of the C-section I had with Noah I was told to rest, so being only a minute’s walk from his bedside was perfect for me. I remember one night going upstairs to say goodnight to Noah and he was really crying, for the first time ever, as he was nil by mouth at the time. The nurse suggested I hold him and comfort him to get him settled. Almost as soon as he heard and smelled me, he calmed down and dropped off to sleep. I was able to experience this very special moment because I was staying in Chestnut House and was only two minutes away from him; if I had been at home I almost definitely would have missed this moment. The timing of Noah’s birth meant that we spent Christmas and New Year in the house which was hard, but being able to have dinner and laugh together with other families made it feel a little bit more festive, even though we were all going through a difficult time. It was such a support to have other families in the house that we could talk to. We were able to share our hopes, fears and dreams for our little ones. Chestnut House really brings together a community of ‘shared experience,’ and it is reassuring to know that others are going through a similar journey to you and to know you are not the only ones. Our family could also come and visit, which was really important to us especially over Christmas. They could all visit Noah and it was really lovely that they could have a coffee with us in a quiet environment away from the busyness of the hospital. It was these little things in the house that made such a difference to us. Also, having Wi-Fi in the house meant that we could go on the internet and for us this was a way of coping as we started a blog that we wrote on every night. It became a diary for us both and was so therapeutic. We cannot thank the staff at Chestnut House enough. Alan’s support and understanding during this difficult time is something that we wouldn’t trade for the world. He has such a wonderful way of making you laugh one minute but then to listen sensitively to the difficulties going on for you and your family in another. Noah is currently at Bedford Hospital. He is improving every day and although life has changed dramatically for us and it’s not exactly how we planned it, every day is a step closer to taking our little boy home. Chestnut House and the staff have definitely made our journey a lot easier to manage and we cannot thank The Sick Children’s Trust enough. Jen, Noah’s Mum

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