"Kylan is a really, really happy baby. He’s started to roll over and he’s smiling and goo-ing and gaa-ing now. It’s hard to imagine that only a few a months ago he couldn’t even cry or open his eyes.
Kylan was delivered by emergency C-section at only 27 weeks, 4 days due to Intrauterine Growth Restriction. He was tiny, weighing less than a bag of sugar at 650 grams. The first few weeks were such a blur but I will never forget how tiny and frail he was. His skin was so thin that I could see every vein in his little body; his entire hand so small that it barely covered my baby finger nail.
At the maternity hospital, it was the small milestones that really kept us going, as we sat by Kylan’s incubator day after day, watching him fight to stay alive. The small things really meant the world to us; his eyes opening for the very first time, the feeling of joy when his tiny hand curled around my finger and getting to actually change my baby for the very first time. By the time he was nine weeks old he could finally breathe on his own and his feeding tube was removed.
But despite Kylan making so much progress he wasn’t yet at a safe place where we could actually bring him home. He has apnea of prematurity so sometimes his brain forgets to signal to his lungs to breathe. He also refluxes his milk, which can block his airway and cause further trouble with his breathing. He would turn blue and stop breathing at least 3-4 times a day. It was terrifying!
Our Crumlin journey began from here. I remember following the ambulance in the car and thinking, ‘I just want to be able to go home.’ It was very scary and emotional but looking back we were blessed to be able to get to CHI at Crumlin as soon as we did. I remember from the moment we arrived the staff were so warm and welcoming. The receptionist let us know there was a parent’s room where we could make coffee and tea and I just felt really calm then. I remember refurbishments were going on whilst we were on Nazareth Ward and I was delighted when I was given a brand-new, really comfy sleeping chair.
We’re forever grateful to everyone at CHI at Crumlin; they all work so hard and are just all lovely. The nurses and doctors on the ward were absolutely amazing to deal with. After only a few days in Crumlin, Kylan was started on medication. I think it was nearly two weeks before he had another episode, it was such a milestone- he wasn’t turning blue anymore- it was absolutely amazing!
We are forever grateful to the amazing people who donate and raise money to help children like Kylan. Before I became a mam, I never fully understood the impact that fundraising has on the hospital and the difference that the support makes to the children and their families. These sick babies need the world to help them and it’s so comforting to know that there are so many kind people out there doing exactly that.
On the 1st December 2020 at four-and-a-half months old, we finally brought our baby home to begin the next chapter of our lives together. We couldn’t believe we had finally made it! Kylan is still receiving oxygen support at night to help his lungs and keep him stable and his feeding continues to be an uphill battle but things will come right for us. He will also need further check-ups and ongoing care because he was born so prematurely but he has come so far and he is learning and getting stronger every day. “ - Sarah, Kylan’s mam