‘What I Wish I’d Known…’ Daisy’s story

Daisy's mum Kirsty has shared the things she wished she'd known for World Prematurity Day

World Prematurity Day takes place on Sunday 17 November and is a global movement by organisations across the world to raise awareness of premature birth and the impact it can have on families.We are joining the charity Bliss to ask families what they wish they’d known about having a premature baby to help others going through a similar experience. We talk to Kirsty Pyke, Daisy’s mum, who was supported by The Sick Children’s Trust in one of its ‘Homes from Home’, Chestnut House, when Daisy was born at 27 weeks.

“I wish I’d known more about the unexpected.”

Daisy was born at 27 weeks on Wednesday 2 January 2019, weighing 630 grams. I briefly caught a glimpse of her before she was rushed away from me. I knew Daisy was going to be premature, though I never expected her to be so early and tiny. I just thought she’d be a small baby, she’d be in NICU until she was 5lb and then I’d be able to bring her home. Nothing prepared me for actually having a premature baby or the tests, wires and emotions of not being able to touch, smell, hold and bond with this tiny human that I created. I wish I had known more about all the things I was going to go through and been prepared for all the machines and tests she was going to have, the expected and unexpected.

“I wish I’d known someone who had been through it before.”

Talking to another parent who had been through a preemie’s journey would have been a huge help beforehand. Throughout the six months Daisy was in hospital, the friendships I made and families I spoke too really helped me to deal with all the different treatments, tests and tribulations that we went through. It made such a difference speaking to someone who was in a similar position, and a lot of that is down to The Sick Children’s Trust which gave me a place to stay at its Chestnut House. Chestnut House is a ‘Home from Home’ run by The Sick Children’s Trust just below NICU, and I met so many other mums as I popped downstairs to grab something to eat or hop in the shower. No baby is the same, neither is their journey but just knowing someone else had been there and either come through the other side or was going through it too helped. I could ask questions and in simple terms find out about the treatment and how their baby reacted. When Daisy had renal failure and I was told there was nothing more they could do for her, being able to chat to someone who had received similar news just helped somehow. You are part of a big family at Chestnut House, you’re all rooting for each other but comforting each other when you’re in tears.

“I wish I’d known that the impossible hug wouldn’t last forever.”

Six months in hospital was a lot longer than I expected. As a parent of a preemie baby, you feel like you miss out on so much. I didn’t have my first cuddle until Daisy was 12 days old… the next wasn’t until the end of February, seven weeks later. All you can do is put your finger through their incubator to touch them – it’s the impossible hug. I didn’t get to sleep in a room with Daisy either, not until she was six months old. Most new mums have their baby in a cot next to them – I missed out on that experience. So when I finally got the chance to sleep on a bed next to her, I did. I was awake all night watching her.

“I wish I’d known that sleepless nights are just a part of the journey.”

You try your best to rest, but when you’ve received a phone call at midnight to say your child has taken a turn for the worst it can be hard to sleep at night. At Chestnut House luckily I was able to jump straight out of bed and be by my daughter’s side which was a godsend, or if I could sleep I was never far away from my bed. Every parent should be able to be that close to their baby when they’re in hospital. I came to rely on the support of The Sick Children’s Trust not just in terms of the proximity to my daughter, but for the amount of emotional support it gave me. There was always a friendly ear to listen from the staff, but I also built incredible friendships with other parents staying at Chestnut House. On the many sleepless nights you experience as a preemie parent, through worry and exhaustion, I would take comfort in other families’ stories which were on the walls at Chestnut House, their success gave me hope.

“I wish I’d known it’s all about taking one step at a time.”

I found the best way to overcome every hurdle was to just take one thing at a time, one step at a time and one day at a time. Daisy seemed to go through everything a preemie baby could, and if I tackled it all at once it would’ve been overwhelming.

Daisy is now nine months old and hitting her milestones. She’s attending regular therapy sessions and also goes to sensory classes to help with her sight and hearing. I’m really proud of how far she’s come.

Over the months I was in hospital with Daisy, some of the nights were long and exhausting. I would sit there and read the leaflets on the table at Chestnut and Acorn Houses – realising how the charity relies entirely on voluntary donations to support families like mine. I decided to ask friends and family to donate to the charity, rather than buy Daisy things and altogether we have raised nearly £2,000.

I knew a little something about The Sick Children’s Trust and its ‘Homes from Home’ as my mother’s friend volunteers there, but I didn’t really know what to expect if I’m honest. If I had known beforehand how lovely the places were and just how much of a second home it would become – I would’ve been telling everyone about it, as I’m doing now.

We give families with a seriously ill child in hospital a comfortable place to stay and a friendly ear to listen in one of our ten ‘Homes from Home’. Providing families with somewhere to stay together just minutes from the hospital means that they can be by their sick child’s side and have one less thing to worry about.

To give a family with a premature baby in hospital a place to stay in one of The Sick Children’s Trust’s ‘Homes from Home’, donate £30 today by visiting sickchildrenstrust.org.

To follow Daisy’s journey, click here.

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