Remembering Harley-Robert Kennedy.
Spende geschützt
Harley-Robert Kennedy was born at James cook on the 31st January - 16 weeks premature (24 weeks) weighing just 630g... Harley had his first gasp at exactly 1.47am for 1 minute before he struggled and was transferred straight to the neonatal for extra help to breathe. Missy’s waters had went at 21 weeks and with being born at 24 weeks it meant Harley went 3 weeks without the extra development needed to help him grow. Meaning not all of Harleys organs were developed.
In Harleys first 2 weeks, he had cuddles with both of his mammys, he had tasted milk and had his first feed, he’d pooed and he was doing amazing on his oxygen support, we spent just 2 hours everyday seeing our son and making those gorgeous memories that we’ll forever cherish. Everything felt like it was going in the right direction.
Week three we were told that Harley was very poorly. His urine output had faded off almost stopped if I’m brutally honest. Then we got the awful news we didn’t want to here... Harley had stopped weeing, indication kidney failure. Harley was placed on end of life, they said they’ve tried everything we can but we don’t know if he’s going to make it. He was blessed by the Church of England and for the first time in this awful rollercoaster our family got to meet him. The most heartbreaking part at that moment was thinking that was the first and last time our family would meet our little boy.
After 3 days Harley started weeing. However as he did... everything got worse. His belly started to swell causing his sats to drop and he struggled a lot more, he was put on the best ventilator the hospital had to offer, the oscillator. His lungs had clasped he was producing green bile and his potassium levels were off the scale, unfortunately we were told to expect the worst. After 5 days we were transferred to Newcastle RVI on the basic that they thought Harley needed surgery for NEC ‘Necrotizing entercolitis’ and he was finally well enough but They couldn’t guarantee he would make it as they weren’t sure if he would.
Harley over came so much and was finally transferred to Newcastle. We stayed one night before he was taking for surgery on his stomach. He had NEC and they decided a day team it was better to take Harley to surgery rather than try to treat it with medication. Our little boy had plenty of blood transfusions during his 1st surgery and lost 3-4 of his large bowel and his whole small intestine they also had to give him his first stoma. He survived surgery. The worst we could of wished for was getting the call he didn’t, they told us we could see him after he was ready.
Everything seemed like it was going great. His belly wasn’t getting any smaller, we didn’t think it was getting bigger though. 3 days later he was in for another surgery. They’d done another X-ray on Harleys stomach and found a ‘leak’ when they did the surgery they found that his bowel to tore causing fluid to leave the blood vessels. He was brought back to us with just his first stoma. He looks the exact same, so precious and small.
6 days later Saturday the 6th March . The exact same time 7pm. We were told he had various leaks and he needs immediate surgery. His belly had swollen like a balloon and he needed taken straight to surgery. If we didn’t send him was going to die.
He survived his last surgery surgery. This time they gave him another stoma, disconnected his hole bowel due to various leaks and brought the start of the bowel to the surface. This meant Harley didn’t have the time to digest food meaning he was swapped to permanent TPN, meaning he wouldn’t get all the nutrition he needed that milk gives, we were told it’d be months before Harley had a feed of milk.They didn’t know if he would survive 24 hours after the surgery as he has over 8 leaks and tears. His body was overfilling with liquid from his blood vessels and there’s nothing we could do about it. He’d already shown previously he wasn’t to good at recovering.
We got told on the 8th Harley had brain damage on both sides of his brain. They couldn’t tell us the extent but she told us there’s a possibility Harley might of never walked nor talk. There is the possibility Harley would of had learning difficulties. This was caused also due to trauma of the surgery’s (losing so much blood etc)
I got up one morning March 11th, we were staying in the flats to the hospital. I remember getting up to go say good morning and read him a book. When I got there I seen Harley and his face was two times bigger than the night before. They told us that this was normal and it should go in a few days. As Harley had so many surgery’s in such a short time.
Unfortunately for Harley he wasn’t showing signs of improvement he just wasn’t strong enough to recover. His body filled with oedema and our little boy decided it was getting a bit to much. Various occasions we were told they they didn’t think Harley would make it, due to everything that happened with him from the start we didn’t quiet believe it. He was showing us, he was having to be bagged and hand ventilated as sats and pulse were forever dropping, he was forever fighting.
Harley did 19 precious days after his surgery March 25th missy had done his morning cared and left him just after 5am. I went for his morning book at 9am and I was told his heart is no longer pumping the way it should. It was just flapping. He was put on adrenaline for extra time but the consultant and I’ll never forget those words said ‘we’re not helping him anymore we’re killing him’. Our little boy was telling us he was ready to take his ride to heaven. We had to hold our little boy and tell him he was going to be okay, even know we knew it wasn’t.
Harley-Robert Kennedy passed away on March 25th at 3:16pm in the arms of his mammys, at just 7 weeks and 4 days.
The last week or so has been hard for his mummies, and theve struggled with everything going on with there permission i have shared harley-roberts story and to help donate something to help them along there way in this awful time, anything donated no matter how small would be greatly appreciated
We would also like to thank everyone as a family for all your support for nicole and missy in this awful sad time..
Much love
In Harleys first 2 weeks, he had cuddles with both of his mammys, he had tasted milk and had his first feed, he’d pooed and he was doing amazing on his oxygen support, we spent just 2 hours everyday seeing our son and making those gorgeous memories that we’ll forever cherish. Everything felt like it was going in the right direction.
Week three we were told that Harley was very poorly. His urine output had faded off almost stopped if I’m brutally honest. Then we got the awful news we didn’t want to here... Harley had stopped weeing, indication kidney failure. Harley was placed on end of life, they said they’ve tried everything we can but we don’t know if he’s going to make it. He was blessed by the Church of England and for the first time in this awful rollercoaster our family got to meet him. The most heartbreaking part at that moment was thinking that was the first and last time our family would meet our little boy.
After 3 days Harley started weeing. However as he did... everything got worse. His belly started to swell causing his sats to drop and he struggled a lot more, he was put on the best ventilator the hospital had to offer, the oscillator. His lungs had clasped he was producing green bile and his potassium levels were off the scale, unfortunately we were told to expect the worst. After 5 days we were transferred to Newcastle RVI on the basic that they thought Harley needed surgery for NEC ‘Necrotizing entercolitis’ and he was finally well enough but They couldn’t guarantee he would make it as they weren’t sure if he would.
Harley over came so much and was finally transferred to Newcastle. We stayed one night before he was taking for surgery on his stomach. He had NEC and they decided a day team it was better to take Harley to surgery rather than try to treat it with medication. Our little boy had plenty of blood transfusions during his 1st surgery and lost 3-4 of his large bowel and his whole small intestine they also had to give him his first stoma. He survived surgery. The worst we could of wished for was getting the call he didn’t, they told us we could see him after he was ready.
Everything seemed like it was going great. His belly wasn’t getting any smaller, we didn’t think it was getting bigger though. 3 days later he was in for another surgery. They’d done another X-ray on Harleys stomach and found a ‘leak’ when they did the surgery they found that his bowel to tore causing fluid to leave the blood vessels. He was brought back to us with just his first stoma. He looks the exact same, so precious and small.
6 days later Saturday the 6th March . The exact same time 7pm. We were told he had various leaks and he needs immediate surgery. His belly had swollen like a balloon and he needed taken straight to surgery. If we didn’t send him was going to die.
He survived his last surgery surgery. This time they gave him another stoma, disconnected his hole bowel due to various leaks and brought the start of the bowel to the surface. This meant Harley didn’t have the time to digest food meaning he was swapped to permanent TPN, meaning he wouldn’t get all the nutrition he needed that milk gives, we were told it’d be months before Harley had a feed of milk.They didn’t know if he would survive 24 hours after the surgery as he has over 8 leaks and tears. His body was overfilling with liquid from his blood vessels and there’s nothing we could do about it. He’d already shown previously he wasn’t to good at recovering.
We got told on the 8th Harley had brain damage on both sides of his brain. They couldn’t tell us the extent but she told us there’s a possibility Harley might of never walked nor talk. There is the possibility Harley would of had learning difficulties. This was caused also due to trauma of the surgery’s (losing so much blood etc)
I got up one morning March 11th, we were staying in the flats to the hospital. I remember getting up to go say good morning and read him a book. When I got there I seen Harley and his face was two times bigger than the night before. They told us that this was normal and it should go in a few days. As Harley had so many surgery’s in such a short time.
Unfortunately for Harley he wasn’t showing signs of improvement he just wasn’t strong enough to recover. His body filled with oedema and our little boy decided it was getting a bit to much. Various occasions we were told they they didn’t think Harley would make it, due to everything that happened with him from the start we didn’t quiet believe it. He was showing us, he was having to be bagged and hand ventilated as sats and pulse were forever dropping, he was forever fighting.
Harley did 19 precious days after his surgery March 25th missy had done his morning cared and left him just after 5am. I went for his morning book at 9am and I was told his heart is no longer pumping the way it should. It was just flapping. He was put on adrenaline for extra time but the consultant and I’ll never forget those words said ‘we’re not helping him anymore we’re killing him’. Our little boy was telling us he was ready to take his ride to heaven. We had to hold our little boy and tell him he was going to be okay, even know we knew it wasn’t.
Harley-Robert Kennedy passed away on March 25th at 3:16pm in the arms of his mammys, at just 7 weeks and 4 days.
The last week or so has been hard for his mummies, and theve struggled with everything going on with there permission i have shared harley-roberts story and to help donate something to help them along there way in this awful time, anything donated no matter how small would be greatly appreciated
We would also like to thank everyone as a family for all your support for nicole and missy in this awful sad time..
Much love
Organisator und Spendenbegünstigter
Kayleigh Kennedy
Organisator
England
Nicole Kennedy
Spendenbegünstigte