When we were transferred to Barnsley and our initial stay at Jessops, it was a huge deal. The nurses and families on the NICu at Sheffield we’re our family. We left them behind.
Everything was alien.
The ward, the policies, the equipment, even our cot was like stepping back in time compared to the state of the art world we lived in at Jessops.
Not much longer than we had settled in our stuff another mummy called Jodie came to say hello to mummy and daddy and introduce herself. She lived in the tiny cupboard room next door to our slightly bigger one (there were two of us) with her son Louie born at 28weeks.
As you can imagine Mummy and Daddy spent a lot of time there with us and mummy and Jodie became good friends looking out for us whilst mummy went to eat or home to sleep and vice verse with Louie.
Turned out they’d had similar experiences with hyperemysis gravadium (extreme sickness) throughout pregnancy spending time in hospital on a drip. They had both had a horrific time!
Days or weeks later we moved into the big room ‘departure lounge’ and shared. It was lovely. Mummy and Jodie spent hours, days, weeks sat watching us sleep, doing our cares, praying for miracles and keeping each other company, listening to each others fears and worries and wishing for brighter days.
One sunny day they were thinking of all of the new mummies enjoying the sunshine whilst we were still stuck in hospital and they made a plan….when we all break free, we are having a Park day together and we did! We planned for a Cornwall holiday too but we are a long while off that just yet with all of the medical challenges faced between us!
The park day was great, we have done it twice now, also with two other Mummy’s Charlotte and Bryony and their babies aviry and Louie 2 who also shared their precious time in special care with us!
Louie 1 was discharged first and went home, we will never forget it, Jodie had been admitted to hospital herself with exhaustion and Louie’s Dad Tom came with the car seat, and took him home, oxygen too! All by himself! It broke mummy and daddy’s heart! What a huge milestone to be missed, taking your little one home!
Except actually, if there is anything we have learnt and mummy and Jodie still share he same thoughts on this, yes it’s hard, missing out on things like this, that others take for granted but actually in our world, it’s about living our best life, our way! We celebrate the small things and we take nothing for granted!
Our friendship doesn’t survive on trivial things like birthday cards and presents and ‘catch ups’! We know we don’t even need to apologise for not getting in touch or not replying to text messages for months on end because we are all fighting every day for our families and we know we are always there!
We knew Louie had undiagnosed challenges, we all saw him fighting through every day, we knew he had cysts on his brain but it wasn’t until we knew his diagnosis that we knew the fight he had on his hands!
Read Louie’s Story…
LITTLE Louie Wood’s parents were told he would never reach certain milestones in his life after he was born with several serious health problems.
But the tot, who is now two, has already defied doctors by rolling over and sitting up. He wears leg splints and gaiters and has a special walking frame.
His parents Jodie Morgan and Tom Wood, of Greenside, Mapplewell, now want to raise £120,000 for surgery in America to help his muscles, which is not available on the NHS, specialist equipment and home adaptations.
Louie was born prematurely at 28 weeks and has quadriplegic spastic cerebral palsy, severe periventricular leukomalacia (a type of brain injury), chronic lung disease, global development delay and nystagmus – involuntary movement of the eyes.
During pregnancy Jodie, 31, suffered from hyperemesis gravidarum, a condition which causes severe nausea, vomiting, weight loss and dehydration. It was this condition from which the Duchess of Cambridge suffered in her pregnancies.
But Jodie is also diabetic and takes insulin, which means she must eat.
Jodie also had the condition during her first pregnancy with son Jake, seven, but he does not have any health problems.
At 13 weeks’ pregnant with Louie, Jodie was admitted to Barnsley Hospital and put on a drip. At 20 weeks, her kidneys started to fail and at 26 weeks there were problems with the placenta.
She was transferred to a hospital in Cheshire where she gave birth to Louie at 28 weeks via emergency Caesarean section.
She said: “They didn’t even have time to put me to sleep, they just needed to get him out. I knew I had done well to get him to 28 weeks, but I knew he was very poorly and that there was going to be risks.
“It was a scary time but I was so unwell. I felt relief that I was going to be better but for the wrong reasons. It was catch 22.
“He didn’t cry for about four minutes because he wasn’t breathing. It was the longest four minutes ever for me. They whisked him straight off. He weighed two pounds.”
Louie spent four months in three different hospitals before being allowed home on 24-hour oxygen.
But after a couple of weeks at home Jodie and Tom noticed something wasn’t right, and that Louie just didn’t seem happy. They were told it was reflux, but took Louie to Sheffield Children’s Hospital for a second opinion, and were given the devastating news that he had multiple brain cysts. The neurologist said Louie was likely to have cerebral palsy but he would have to wait until he was two for an MRI scan as his brain was still developing.
The couple were told he wouldn’t be able to walk or crawl, roll, sit up or hold his head up.
Jodie said: “Louie is such as strong little boy. I just thought ‘I’m not giving up on him’. We went home and I did physiotherapy with him and read to him. In June last year I got him to roll over by himself. It was amazing. And in January it was Tom’s birthday and I got him sitting unaided.
“It just shows that not giving up was the right thing to do.
“Louie’s got his own personality, he’s very cheeky and his smile is so sweet.”
Jodie said Louie’s medical problems will get worse as he gets older. The family is now raising money for the surgery in America. They are also fundraising for specialist equipment such as seats to help him sit up in trollies and in restaurant high chairs and for adaptations to their house, such as a wet room.
You can donate HERE