By Kaelah's Side
Imagine spending the first 16 months of your child's life in hospital, while their twin is healthy at home.
Mum, Lauren shares the painful reality of caring for a seriously-ill child and highlights the importance of your donations for Glasgow Children's Hospital Charity in making their journey that little bit easier.
Kaelah's diagnosis
Kaelah was diagnosed with CDH (Congenital Diaphragmatic Hernia) when I was around 15 weeks pregnant. At this stage, she was given a poor prognosis, with an estimated lung volume of 14-19%.
This was extremely difficult for us as a family as Kaelah's twin sister Kallie was perfectly healthy.
Kaelah spent the first 10 days of her life on ECMO and had life-saving surgery at two days old to move her organs out of her chest cavity
and repair her diaphragm.
At 3 months old, Kaelah had a tracheostomy placed and had already had multiple major surgeries by this point, including heart surgery and feeding tubes surgically placed. She's been through the wars but we're so proud of how far she has come.
The hardest part
The hardest part about Kaelah being in hospital, besides leaving her every night, was the uncertainty. Not knowing whether she would be better or worse when we returned the next day was tough.
When Kaelah was really ill, you'd sometimes feel like you had taken one step forward and two steps back. It was the nurses who got us through the difficult days - always providing a listening ear and helping in any way they could.
Now it's Kaelah who gets us through the hard times. We're often told by the nurses that Kaelah is their 'tonic'. She's the happiest little girl.
A full team effort
Kaelah has multiple specialists across the hospital involved with her care and they're all heroes in our eyes. From the nurses, doctors and surgeons, to the occupational therapists and physiotherapists - we owe them everything for all they have done and continue to do for Kaelah.
We will never be able to express our gratitude for Kaelah's hospital heroes and they will hold
a special place in our hearts forever!
Memories that last a lifetime
We have benefited from many of the charity-funded projects during Kaelah's hospital journey.
I remember the Little Inky Feet project being mentioned when Kaelah was first born, but I was terrified to touch her at the time. The project allows families to take little footprints of their baby and get them made into special momentos if they wish.
Kaelah and Kallie's Dad celebrated his birthday four days after they were born. While we didn't feel ready to do Little Inky Feet, we arrived to a card made by one of the lovely nurses, using Kaelah's footprints. It made our day and encouraged us to try it out for ourselves when we felt ready.
We have done Little Inky Feet a few times with both of the girls and love the idea as it helps you
to feel closer to your babies.
Our first walk as a family
In July 2021, we got to take Kaelah outside the hospital for the first time while on a ventilator thanks to the MoVE project. This day was so special to us as Kallie and Kaelah were reunited after 2 months apart.
We'd been longing for the day we would be able to take both girls outside to enjoy the sunshine and the PICU doctors, nurses and physios made it possible for us.
Promoting recovery through play
The Play Team, supported by Glasgow Children's Hospital Charity, have been great with Kaelah, particularly by providing messy play opportunities.
Kaelah is tube fed so it can take a while for her to come round to the idea of messy play involving food. The team have persevered and encouraged her.
She now loves it.
Marking milestones and making us giggle
The vCreate service played a massive part in Kaelah's NICU and PICU journeys. It's a secure video messaging platform between families and the medical teams.
From the very first photo of Kaelah on ECMO with her little 'sunglasses' on, to her 3am 'parties' and the pictures of her peacefully asleep - we loved them all.
It was so special waking up to new photos or videos during the night or in the morning. vCreate gave us the reassurance that she was settled and the feeling that we were never missing any of the little things.
Heading for home
All going well, we hope to be heading home soon with our little girl. We can't wait for Kaelah and Kallie to have the opportunity to grow and develop an even more special bond as twins, outwith the hospital environment.
As a Mum who has been through it all, I feel its so important that people support Glasgow's Children's Hospital Charity. The funded projects really do make a huge difference.
Although we've endured some of the most heartbreaking and devastating days of our lives within the hospital, we've also been able to make some precious family memories.
Thank you for helping to make that possible.
