Chantelle Gillhan
Evelyn Mae Gillham's Page
Fundraising for Ronald McDonald House
Story
The Ronald McDonald charity were kind enough to give us a room on hospital grounds free of charge so that we weren't too far from our little Jellybean.
The house costs £600,000 per year, £25 per room per day, to run. The charity relies solely on donations, they will appreciate every penny.
Evelyn has a complicated story starting from her 20 week scan.
I had low amniotic fluid which meant I was back and forth to the hospital for regular scans. Our consultant was amazing but couldn't put her finger on why my fluids were so low.
We went for one of our scans at 31weeks and Evelyn hadn't grown in 2 weeks. I had 2 lots of steroid injections and Evelyn was born by elective cesarean section on 15/05/14 at 15.55 weighing 1.2kg (2lb 10oz) at Warrington hospital.
Me and Dean were moved into recovery and we waited nearly an hour to find out what was going on with our little girl.
Our consultant came to tell us that Evelyn was born with some abnormalities. She had an imperforate anus, she was missing a finger on her right hand, her hands and feet were smaller than normal and her gums were abnormally shaped.
They told us she was going to be moved to Alder Hey Children's Hospital where they would be able to give her an operation to give her stoma's until she was old enough to have her bottom fixed. They transferred her at 2.20am at not even 12 hours old. I couldn't go with her because of my cesarean but Dean travelled up to meet them at the hospital.
In Evelyn's first 24 hours of life she was being tested for Edwards syndrome which came back clear.
She had an ultrasound of her heart finding a hole, an ultra sound on her tummy finding only one kidney, an ultrasound on her head which appeared normal and when trying to get her on a ventilator it was proving extremely difficult as she had a narrow airway.
At 2pm she under went her first major surgery to intubate her and give her stoma's, which meant creating holes in her abdomen and bringing her bowel to the surface, so that she was able to empty her bowels. She was in surgery until 10.30pm.
Whilst being intubated her right lung was punctured and they had to insert a drain into the side of her chest to get rid of the air that had collected in her chest cavity.
Finally, after her surgery, Me and Dean had a chance to meet our little girl properly. She was beautiful. Looked just like her dad. But she was heart breaking to look at. She was covered in bruises and plasters, wires and tubes. All I wanted to do was cuddle her and tell her everything was going to be okay. But I couldn't.
Saturday 17th May and the doctors did there 1st rounds. Renal team first, Evelyn's kidney wasn't working properly, they said it was working at 25% and unless it kick started itself she wouldn't make it past the weekend.
Next was a consultant. Evelyn's eyes weren't responding, her pupils weren't dilating which could mean brain damage. She would need an MRI scan to confirm this (On Sunday they started dilating). He also explained that Evelyn's airway was that small that the only way she would survive was if she was to have an operation but this kind of operation was hard on a 3kg baby (more than twice the size of Evelyn) they were going to have to do further tests on her airway to check the exact size and to see where they could go from here.
On Monday morning the renal team explained that Evelyn's kidney was starting to work, it was now working at around 40%.
She had an X-ray of her chest and it shown she could have her drain removed. Over the next week she received lots of different tests. Monday evening They took her down to surgery to do a bronchogram to check her airway. They also did an MRI scan of her head.
The MRI revealed she had a hamatoma. (Normal brain tissue in the wrong place) which was causing her problems with her sugar hormone, her stress hormone and her thyroid hormone. These problems were now being controlled by medication.
The bronchogram confirmed that her airway was small all the way down into her lungs, that she had a pig bronchus (abnormally shaped airway) and that her epiglottis was in two parts.
Evelyn's consultant explained to us that whilst doing the bronchogram she ended up with two more pneumothoraxen (punctured lungs) leading to two more chest drains. He also told us they needed to speak to Great Ormond Street to find out if there was anything they could do about her airway. We were devastated.
It was now all a waiting game.
On Friday 13th June we had a meeting with the consultants as they had information from Great Ormond Street and the news wasn't good.
Evelyn needed to be twice the size she was before they would consider operating but there were no guarantees it would work with her pig bronchus. Whilst they operated on her airway they would fix the hole in her heart and her chances were 50/50. They told us if she stayed on the ventilator it would take about 10 weeks for Evelyn to double her weight. But staying on a vent for that long increased her chances of getting chest infections and pneumonia, she already had enough to deal with but that wasn't all. To fix her epiglottis it would mean she could either talk and eat through a tube for the rest of her life or eat normal and never be able to talk.
Renal team had told us Evelyn would go into full kidney failure by the time she was 7 years old. If she stayed on the vent it would be half that! She could go on the transplant list but with her being so poorly she wouldn't be at the top. And she wouldn't be able to have dialysis because of her stoma's.
To fix her bum would be 3 major operations to make her fully continent. And the chance of surviving them all were not good.
Her hamatoma so far wasn't affecting the back part of her pituitary gland but if it started affecting it then there would be nothing they could do.
We were frozen to the spot.
Then continued to say if Evelyn survived the 10 weeks and doubled in size and we decided to go through with all 7 major operations she would be in hospital until she was at least 5 if she survived each individual operation.
It was awful.
Evelyn needed to survive off the vent. It was the only way.
Me and dean finally had cuddles with our baby girl on Monday the 16th June and her tube was taken out on Monday night. Our little princess grew her angel wings that night and went to live among the stars.
She was incredibly strong and survived past all the odds and we are extremely proud of her.
We are waiting for confirmation to find out if Evelyn had Pallister-Hall syndrome. Something that only 100 people in the world have ever been diagnosed with.
Evelyn was the most beautiful little girl and we will miss every inch of her for every single minute of every single day.
The money that we raise will give other families the opportunity to stay in the hospital grounds to stay close to their children where they belong. And it will all be in Evelyn's name.
Please help. Every penny counts.
The house costs £600,000 per year, £25 per room per day, to run. The charity relies solely on donations, they will appreciate every penny.
Evelyn has a complicated story starting from her 20 week scan.
I had low amniotic fluid which meant I was back and forth to the hospital for regular scans. Our consultant was amazing but couldn't put her finger on why my fluids were so low.
We went for one of our scans at 31weeks and Evelyn hadn't grown in 2 weeks. I had 2 lots of steroid injections and Evelyn was born by elective cesarean section on 15/05/14 at 15.55 weighing 1.2kg (2lb 10oz) at Warrington hospital.
Me and Dean were moved into recovery and we waited nearly an hour to find out what was going on with our little girl.
Our consultant came to tell us that Evelyn was born with some abnormalities. She had an imperforate anus, she was missing a finger on her right hand, her hands and feet were smaller than normal and her gums were abnormally shaped.
They told us she was going to be moved to Alder Hey Children's Hospital where they would be able to give her an operation to give her stoma's until she was old enough to have her bottom fixed. They transferred her at 2.20am at not even 12 hours old. I couldn't go with her because of my cesarean but Dean travelled up to meet them at the hospital.
In Evelyn's first 24 hours of life she was being tested for Edwards syndrome which came back clear.
She had an ultrasound of her heart finding a hole, an ultra sound on her tummy finding only one kidney, an ultrasound on her head which appeared normal and when trying to get her on a ventilator it was proving extremely difficult as she had a narrow airway.
At 2pm she under went her first major surgery to intubate her and give her stoma's, which meant creating holes in her abdomen and bringing her bowel to the surface, so that she was able to empty her bowels. She was in surgery until 10.30pm.
Whilst being intubated her right lung was punctured and they had to insert a drain into the side of her chest to get rid of the air that had collected in her chest cavity.
Finally, after her surgery, Me and Dean had a chance to meet our little girl properly. She was beautiful. Looked just like her dad. But she was heart breaking to look at. She was covered in bruises and plasters, wires and tubes. All I wanted to do was cuddle her and tell her everything was going to be okay. But I couldn't.
Saturday 17th May and the doctors did there 1st rounds. Renal team first, Evelyn's kidney wasn't working properly, they said it was working at 25% and unless it kick started itself she wouldn't make it past the weekend.
Next was a consultant. Evelyn's eyes weren't responding, her pupils weren't dilating which could mean brain damage. She would need an MRI scan to confirm this (On Sunday they started dilating). He also explained that Evelyn's airway was that small that the only way she would survive was if she was to have an operation but this kind of operation was hard on a 3kg baby (more than twice the size of Evelyn) they were going to have to do further tests on her airway to check the exact size and to see where they could go from here.
On Monday morning the renal team explained that Evelyn's kidney was starting to work, it was now working at around 40%.
She had an X-ray of her chest and it shown she could have her drain removed. Over the next week she received lots of different tests. Monday evening They took her down to surgery to do a bronchogram to check her airway. They also did an MRI scan of her head.
The MRI revealed she had a hamatoma. (Normal brain tissue in the wrong place) which was causing her problems with her sugar hormone, her stress hormone and her thyroid hormone. These problems were now being controlled by medication.
The bronchogram confirmed that her airway was small all the way down into her lungs, that she had a pig bronchus (abnormally shaped airway) and that her epiglottis was in two parts.
Evelyn's consultant explained to us that whilst doing the bronchogram she ended up with two more pneumothoraxen (punctured lungs) leading to two more chest drains. He also told us they needed to speak to Great Ormond Street to find out if there was anything they could do about her airway. We were devastated.
It was now all a waiting game.
On Friday 13th June we had a meeting with the consultants as they had information from Great Ormond Street and the news wasn't good.
Evelyn needed to be twice the size she was before they would consider operating but there were no guarantees it would work with her pig bronchus. Whilst they operated on her airway they would fix the hole in her heart and her chances were 50/50. They told us if she stayed on the ventilator it would take about 10 weeks for Evelyn to double her weight. But staying on a vent for that long increased her chances of getting chest infections and pneumonia, she already had enough to deal with but that wasn't all. To fix her epiglottis it would mean she could either talk and eat through a tube for the rest of her life or eat normal and never be able to talk.
Renal team had told us Evelyn would go into full kidney failure by the time she was 7 years old. If she stayed on the vent it would be half that! She could go on the transplant list but with her being so poorly she wouldn't be at the top. And she wouldn't be able to have dialysis because of her stoma's.
To fix her bum would be 3 major operations to make her fully continent. And the chance of surviving them all were not good.
Her hamatoma so far wasn't affecting the back part of her pituitary gland but if it started affecting it then there would be nothing they could do.
We were frozen to the spot.
Then continued to say if Evelyn survived the 10 weeks and doubled in size and we decided to go through with all 7 major operations she would be in hospital until she was at least 5 if she survived each individual operation.
It was awful.
Evelyn needed to survive off the vent. It was the only way.
Me and dean finally had cuddles with our baby girl on Monday the 16th June and her tube was taken out on Monday night. Our little princess grew her angel wings that night and went to live among the stars.
She was incredibly strong and survived past all the odds and we are extremely proud of her.
We are waiting for confirmation to find out if Evelyn had Pallister-Hall syndrome. Something that only 100 people in the world have ever been diagnosed with.
Evelyn was the most beautiful little girl and we will miss every inch of her for every single minute of every single day.
The money that we raise will give other families the opportunity to stay in the hospital grounds to stay close to their children where they belong. And it will all be in Evelyn's name.
Please help. Every penny counts.