The Sick Children’s Trust’s Chestnut House supported my family when my son, Joseph was born 12 weeks premature on 5 October 2012 at the Rosie hospital in Cambridge.
As you can imagine, being so premature Joseph was so tiny and because of this he had lots of complications and he had to stay on the Neonatal Intensive Care Unit. From the moment he was born we were on tender hooks with him. He was all we could think about from day one.
When he was just four days old he was rushed for emergency surgery as he had a suspected perforated bowel. This turned to be three small holes in his bowels which that had to be cut and a stoma created. We were so worried as he couldn't breathe unaided and was on CPAP to assist his breathing. I kept thinking he was just so little, how could I help him?
For the first week of his life I stayed on the post natal ward at the hospital but after this I was fortunate enough to stay at Chestnut House, a ‘Home from Home’ provided by the charity The Sick Children’s Trust that provides free accommodation for families of sick babies at the hospital. This was a god send for us as it meant we could be there for Joseph day and night if needed and because the charity is on the hospitals grounds it’s just moments away from the ward which reassured us no end. And even though Joseph was too young to know we were there it was important for me to be there by his side as much as possible.
Chestnut House became my home for nearly a month. It was lovely having a place away from the ward I could retreat to and have lunch, read for a while if Joseph was sleeping and just 'take a breath'.
As I lived just over an hour away from the hospital in Suffolk but also due to my health (I've had a kidney transplant and a heart attack) the added stress of having to travel would of made me really poorly, so knowing I was right there with Joseph really did mean a lot to me and my health.
Unfortunately my partner couldn't stay with me at the house as he had to return to work, but when he did come to the hospital to visit it was really important that there was somewhere we could go and eat a normal cooked dinner instead of getting something from the canteen in the hospital. We’d try to relax a little and just be there for each other and this helped make us feel ‘normal’ again. My mum even stayed at the house with me on one occasion which was lovely just to have some company.
As there was a phone in my room with a direct line to the ward it was very reassuring to know that I could ring the ward from my room anytime of the day and also that the ward could contact me if they needed to. It was really helpful being with other families too as we could all support each other as we were all going through the same thing, to be able to talk to parents that know how you are feeling and not just emphasising with you.
Nearly seven weeks after Joseph was born he was transferred back to our local hospital in West Suffolk where he stayed for two weeks before being transferred back to the Rosie hospital to undergo surgery to reverse his stoma. I once again stayed at Chestnut House for just over a week and it was so reassuring to be in familiar surroundings again – it was almost like coming home.
Alan Booth the house manager was an incredible support to me, I feel we bonded well and just having a normal chat with him sometimes would just help to relax me.
Joseph is now a happy, healthy seven month old little boy and is thriving, he is catching up with his weight and we have just started to wean him, which is great fun. He has been discharged from Addenbrooke’s Hospital and now so we are just under our local hospital.
To be perfectly honest I hadn't heard of The Sick Children's Trust until I stayed in the house and it really is true to say that it’s one of those charities that you don’t really realise how important a role they play until you need them, and then you realise that you going through this experience without them would have been very different.
I don’t know how I will ever thank them for their support but I am currently organising a family fun day in aid of them to try and show them how much they mean to me and my family.
Kelly Hill, Joseph’s mum
Friday, 21 June 2013
My son Joseph was born 12 weeks premature on 5 October 2012...
The Sick Children’s Trust’s Chestnut House supported my family when my son, Joseph was born 12 weeks premature on 5 October 2012 at the Rosie hospital in Cambridge.
As you can imagine, being so premature Joseph was so tiny and because of this he had lots of complications and he had to stay on the Neonatal Intensive Care Unit. From the moment he was born we were on tender hooks with him. He was all we could think about from day one.
When he was just four days old he was rushed for emergency surgery as he had a suspected perforated bowel. This turned to be three small holes in his bowels which that had to be cut and a stoma created. We were so worried as he couldn't breathe unaided and was on CPAP to assist his breathing. I kept thinking he was just so little, how could I help him?
For the first week of his life I stayed on the post natal ward at the hospital but after this I was fortunate enough to stay at Chestnut House, a ‘Home from Home’ provided by the charity The Sick Children’s Trust that provides free accommodation for families of sick babies at the hospital. This was a god send for us as it meant we could be there for Joseph day and night if needed and because the charity is on the hospitals grounds it’s just moments away from the ward which reassured us no end. And even though Joseph was too young to know we were there it was important for me to be there by his side as much as possible.
Chestnut House became my home for nearly a month. It was lovely having a place away from the ward I could retreat to and have lunch, read for a while if Joseph was sleeping and just 'take a breath'.
As I lived just over an hour away from the hospital in Suffolk but also due to my health (I've had a kidney transplant and a heart attack) the added stress of having to travel would of made me really poorly, so knowing I was right there with Joseph really did mean a lot to me and my health.
Unfortunately my partner couldn't stay with me at the house as he had to return to work, but when he did come to the hospital to visit it was really important that there was somewhere we could go and eat a normal cooked dinner instead of getting something from the canteen in the hospital. We’d try to relax a little and just be there for each other and this helped make us feel ‘normal’ again. My mum even stayed at the house with me on one occasion which was lovely just to have some company.
As there was a phone in my room with a direct line to the ward it was very reassuring to know that I could ring the ward from my room anytime of the day and also that the ward could contact me if they needed to. It was really helpful being with other families too as we could all support each other as we were all going through the same thing, to be able to talk to parents that know how you are feeling and not just emphasising with you.
Nearly seven weeks after Joseph was born he was transferred back to our local hospital in West Suffolk where he stayed for two weeks before being transferred back to the Rosie hospital to undergo surgery to reverse his stoma. I once again stayed at Chestnut House for just over a week and it was so reassuring to be in familiar surroundings again – it was almost like coming home.
Alan Booth the house manager was an incredible support to me, I feel we bonded well and just having a normal chat with him sometimes would just help to relax me.
Joseph is now a happy, healthy seven month old little boy and is thriving, he is catching up with his weight and we have just started to wean him, which is great fun. He has been discharged from Addenbrooke’s Hospital and now so we are just under our local hospital.
To be perfectly honest I hadn't heard of The Sick Children's Trust until I stayed in the house and it really is true to say that it’s one of those charities that you don’t really realise how important a role they play until you need them, and then you realise that you going through this experience without them would have been very different.
I don’t know how I will ever thank them for their support but I am currently organising a family fun day in aid of them to try and show them how much they mean to me and my family.
Kelly Hill, Joseph’s mum
Friday, 7 June 2013
We had planned Rokie's arrival so differently, but for the weeks following his birth we spent every day in hospital...
Our son Rokie was born at Sheffields Children’s Hospital on the 15th October 2012 and for the next six weeks The Sick Children’s Trust’s Treetop House became our home. We had planned his arrival so differently, but for the weeks following his birth we spent every day in hospital by his bedside.
At eight weeks into my pregnancy I had a scan that revealed Rokie had a condition called Gastroshcisis, which meant that his bowel was protruding on to the outside of his body. Rokie’s condition was a shock to both my partner Arren and I and we were so concerned for him. The doctors told us that they would have to wait until he was born to treat the condition. I think throughout pregnancy you worry generally, but in my case the early diagnosis of Rokie’s condition made me constantly nervous and anxious about what would happen when my little boy was born.
Shortly after Rokie’s birth in October, doctors started to treat him for Gastroshcisis, by using the silo bag treatment. The treatment is started by sliding the intestine into a silo bag and then over the next few days the intestine is gently squeezed back into the abdomen. It is a slow process that takes place over many days but we were told that it was an effective way to treat Rokie’s condition, without him having surgery.
The nature of the treatment meant that each new day presented a different situation, there was a constant worry, wondering how it was going to go every day. There was no way that we were going to leave Rokie alone in hospital, especially when he was undergoing treatment that could alter his condition at any moment; which is why we were so relieved when the nurses on Rokie’s ward told us about Treetop House. We wanted to be by his side every step of the way and the ‘Home from Home’ run by The Sick Children’s Trust charity enabled us to do just that. Treetop House provided accommodation for Arren and I and also our other two children, Cayc aged three and Coby aged two. It took such a weight off our minds knowing that we could all stay together as a family and be close to Rokie. Without our room at the house our family would have been separated and Cayc and Coby wouldn’t have been able to get to know their new younger brother.
The silo bag treatment seemed to be going really well at first and the intestine had almost fully gone back into Rokie’s abdomen. However when I went down to see him on the sixth day of treatment, I knew there was something wrong. Rokie didn’t seem like himself and by the evening he became really unsettled and started to scream, which was really unlike him. Being able to stay just a lift ride away from Rokie in Treetop House meant that we could spend all our time with him and really get to know him and it was because of this I knew that there was something wrong and he wasn’t himself.
The doctors rushed to Rokie’s bedside and said that the silo bag wasn’t working as well as they had hoped. I can safely say that the day that followed was the longest of my life; Rokie had to have many different tests across the course of the day and we stayed with him all day and night. We were so worried what the outcome of the tests would be and what the results would mean for him. Rokie’s doctors told us that he would have to have surgery immediately to treat his condition. He was still so tiny, we couldn’t believe what our little boy was having to go through so early on in his life. We were terrified for him but we knew he was getting the best possible care he could and that he had to have this operation.
Having accommodation so close to the ward to go back to was invaluable; we were able to stay with Rokie all day and evening without worrying about travelling home, as we only had a two minute lift ride to Treetop House. The house really did become a ‘Home from Home’ for us, we felt so comfortable and the facilities were amazing. We could cook home-made meals, which was vital for us because the food available at the hospital would have cost a lot when added up over the weeks and it wasn’t the most nutritional food for a growing family either. There was also a playroom in the house which was great for the children. It meant we could relax and rest when we were at the house while they could happily play.
The staff in the house really made the lovely atmosphere we experienced. They were so caring and there was always a friendly face to greet us when we were going in and out. The majority of our time we spent on the ward with Rokie, so we didn’t speak to the staff too much, but it was lovely to know that they were there for us if we needed them and we always gave them updates on how Rokie was getting on.
Following Rokie’s first major surgery he had to have a few smaller operations but we are really happy to say that Rokie is now home. We still take him for check-ups every three months but he is doing really well and we are so pleased. The Sick Children’s Trust helped us when we needed them most. We will never forget the help they gave to us; we were facing such a difficult and stressful time and they enabled us to do this as a family by Rokie’s side.
Kim Parkin, Rokie’s Mum
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