April 19 2014 Latest news:
Friday, December 20, 2013
Born at 25 weeks, Skylar Primrose weighed only 1lb 11oz when she was born premature.
But after eight months of fighting for survival at the Norfolk and Norwich University Hospital’s neo natal intensive care unit (NNICU), Richard and Caroline Knight’s baby girl is coming home for Christmas.
Richard and Caroline, who live in South Walsham with their children Som, 10 and Summer, five, were expecting to welcome their third baby into the world on July 26.
But mid-way through Caroline’s pregnancy, the unimaginable happened.
The 37-year-old, who grew up in Norwich, went to the doctor when she thought her waters had broken early. It was initially thought to be nothing serious, but within days it was clear their baby was on the way.
After five days at Luton and Dunstable Hospital in Bedfordshire waiting for something to happen, a space was found at the Norfolk and Norwich University Hospital’s neo natal intensive care unit (NNICU).
There was several false starts, but on April 13 Skylar arrived and her long battle for survival began.
She weighed just 1lb and 11oz, barely more than a pint of milk.
Bringing her into the world was a risky procedure - Caroline’s life was also at risk, but both mum and baby pulled through.
From day one, doctors prepared the family for the worst.
“We were told that there was a 30 per cent of survival and of that 30 per cent, only a 10 per cent chance she would not have brain damage,” said 38-year-old Richard, an offshore worker who grew up in Great Yarmouth, attending Great Yarmouth High School.
“They said babies born earlier than 24 weeks were classed as a miscarriage so the longer I kept her in the better chance she had,” said Caroline.
Within minutes of being born, Skylar faced an uphill struggle.
She was put on a ventilator to keep her lungs inflated as doctors fought to keep oxygen pumping around her body.
She had wires “coming out of every vein and artery” and had to be fed with a sugar solution as she was simply too small to feed.
Caroline, whose other two children were born full term weighing 8lb and 10lbs, was almost reluctant to meet her baby at first.
“I think it was a bit of self-preservation - in case we lost her,” said Richard.
“I just couldn’t believe it was happening,” said Caroline.
“I thought I was dreaming. I was waiting for someone to pinch me and I’d wake up.”
“People say it’s like being on a roller coaster,” added Richard.
“What they don’t tell you is it’s actually like being on a roller coaster while being dragged backwards by your heels.”
The day after Skylar was born, Richard went home to explain what was happening to Som and Summer, who both attend Fairhaven CofE Primary School.
“We had to remember it was all alien to them as well,” he said.
“I told them she was so excited to come home she’d arrived early, but she wasn’t big enough yet so the hospital had put her in a plastic mum to help her grow.
“When they came to see her, the first thing Summer said was that she looked like a chicken.
“For me, that was amazing. She saw past all the tubes and machines, the wires and scary things. They were both just so happy to have a sister.”
Slowly, Skylar - whose name means eternal life, love, strength and beauty - continued to grow and develop. It has not been easy and over the past eight months she has needed five blood transfusions, had to battle viruses and infections, and needed steroids and vaccinations.
Only three weeks ago Skylar had to be revived after food became stuck in her throat and she stopped breathing.
“It is just one thing after another,” said Richard.
“There have been some really tough decisions, some very tough days.
“We knew the ventilator would cause damage to her lungs and cause Chronic Lung Disease but it was either that or not have her with us at all. It was the lesser of two evils.
“We just had to trust the doctors because they do this every day.
“That didn’t mean we weren’t asking questions all the time. If someone if going to inject your daughter, you want to know what’s in it so we were constantly trying to understand and process everything that was happening.”
In July, Skylar was booked to have an operation at Great Ormand Street Hospital in London. It was yet another risky procedure; this time to clamp shut a valve in her heart, a condition known as Patent ductus arteriosus (PDA).
Richard and Caroline were “frustrated” when a three day wait became three weeks, but the day before the surgery a scanned showed the valve was closing by itself and the operation was no longer needed.
A few months later, Skylar was strong enough to move to the children’s ward at the hospital and this week, she spent her first night at home.
All going well, she will be released from hospital on Monday – just in time for Christmas Day.
Caroline and Richard don’t feel “out of the woods” yet – Skylar has just caught a cold which means she is back on a ventilator and having to be partly fed via a tube again, but having their happy, smiling daughter at home in December 25 is a day they feared would not come.
“When she’s well, she is a really happy and content little baby,” said Caroline.
“When you see her smile, it just melts you.”
The family want to say a huge thank you to everyone who has helped so far, including Skylar’s grandparents and cousin Samuel Warner. The 11-year-old. who lives in Hemel Hempstead, raised more than £2,000 for his cousin and other premature babies with a 32-mile sponsored cycle ride.
Richard’s mum Dorothy said: “We would like to sincerely thanks all the staff at the Norfolk and Norwich University Hospital, the Neo Natal Intensive Care Unit (NNICU) and the Children’s ward for their nursing skills and dedication in caring for Skylar Primrose.
“It has been a long struggle for Skylar but she is certainly a little fighter.”