Message from Katie and Luke- Dotty’s mummy and daddy 🫶

We’ll be running the London Landmarks Half Marathon together to raise money for Bliss as they help families just like us, who are going through hell after their babies are born premature and poorly.

It’s hard to keep this brief as our journey has been a living nightmare. Some would say parents experiences of NICU’s are a rollercoaster of highs and lows, but we never really had any ‘highs’. More just levels, lows, and even lowers. It was more a game of snakes and ladders. Each minute you did not know if you’d be back at the start again.

So lets start from the beginning?

Our baby girl Dotty arrived 17 weeks early - 23+1 weeks gestation. Dotty wasn’t due until the 14th November 2025 but she decided she wanted to be a summer baby and was born on the 19th July 2025. Dotty weighed 515g, that’s 1lb 1oz in old money, or the weight of a small bag of sugar. Dotty’s journey was not be simple. We can only describe it was hell on earth- just torture. She’s battled so much in her short life. Far more than many adults.

Having a preterm isn’t just a ‘small baby’. They don’t just ‘grow’ in incubators like they would in the womb. They aren’t ready to be in the world yet. These babies suffer so much, their tiny bodies are pricked, probed and pulled about. They look fully formed on the outside but their insides are small, undeveloped and immature, and that’s where the problems start.

After an extremely challenging few hours getting Dotty stable, she was immediately transferred to Hull Royal Infirmary for specialist care. They are the best in saving the lives of dinky extreme preterm babies like Dotty. She received the best care and wouldn’t be here today without them. After 5 weeks Dotty was then transferred to Queens Medical Centre as further medical complexities were discovered.

Dotty had suffered from an Interventrular Haemorrhage resulting in Hydrocephalus, as well as Retinopathy of Prematurity, Anemia, Metabolic Bone Disease, Chronic Lung Disease, to name a few. All this meant multiple medical interventions. To date she has had 7 surgeries, 9 blood transfusions, countless cannulas and tonnes of medication. Dotty is still on home oxygen to help with her chronic lung disease, takes supplements for Anemia and Immunity and has a central line inserted in her chest in case of future re-admissions (we have already had two due to hydrocephalus related problems, one being over Christmas and New year).

As we have mentioned having a preterm isn’t simple. So much is taken away from you. We didn’t get to go pram shopping, or paint a nursery, or have a baby shower. We didn’t get to be excited. We lost a whole trimester of pregnancy. We didn’t get the amazing moment of announcing our new arrival or feel the joy when someone said ‘congratulations’.

Part of having a preterm is grief.

We weren’t even able to hold Dotty for days. Our first cuddle was at 9 days old but it wasn’t the gorgeous magical moment you wish for. It took four people to safely take Dotty out the incubator and onto our chests. We were then taped into position and couldn’t move for hours as the transfer itself was extremely traumatic for her.

At many moments in the NICU, life seemed very dark and our lights were only getting dimmer. Horrific meetings to discuss potential ‘comfort care’, discussions over quality of life, and days and days of endless crying…

But after 152 days in hospital all together (that’s right none of us went home until this day). Dotty has now been thriving at home for the past few months. She’s a 10lb 5oz milk monster, and gives the best smiles.

Sadly, as a family we are all still suffering the effects of having a preterm baby and a lengthly NICU stay. At the time we cut ourselves off the world, simply to try and protect our little bubble. We didn’t want to let people in as we didn’t want it to be true, we didn’t want this to be our lives. But now we want to celebrate our miracle baby. We want to give her the best life!

Our journey through parenthood did not get the normal start and everything we have been through has moulded how we parent now. We look forward to seeing her in the middle of the night, we are relieved to hear her cry, and love the poo explosions, because all these things seemed impossible a few months ago. We are just grateful she is here.

Thank you for reading our story, please share to raise money to help others families like us.

And finally remember… if you’re going through hell, for goodness just keep going!