When baby Toby was born at 26 weeks, writing a diary helped his dad Adam get through the 142 days they spent in neonatal care. Toby was born at 26 weeks’ gestation, 14 weeks earlier than expected, weighing only 1 lb 11 oz - less than a loaf of bread.
Here’s Toby’s story and the family’s advice for other parents going through a similar situation.
Pregnacare is proud to support the services of Bliss, the charity for babies born premature or sick, and their families.
Toby was born at Liverpool Women’s Hospital at just 26 weeks’ gestation, 14 weeks earlier than expected. He weighed only 1 lb 11 oz, less than a loaf of bread.
I still remember the disbelief when we were told he would be delivered. My wife, Gemma, had developed severe pre-eclampsia, and the doctors told us there was no choice but to deliver him immediately to save them both.
When I first saw him, I could not believe how small he was. His skin was translucent, his ribs no longer than a battery. He looked otherworldly, almost too fragile for this world. I wanted to feel joy, but mostly I felt fear. I was terrified to let myself love him in case I lost him. It took weeks before I could finally say the words “I love you” out loud.
Toby spent 142 days in hospital. During that time, he faced many serious health challenges, including brain bleeds, pneumonia, sepsis, four lumbar punctures and eleven blood transfusions. He was resuscitated three times His lungs nearly failed due to severe inflammation, and at one point he was transferred to Alder Hey Children’s Hospital for life-saving surgery.. Every day felt like a constant balancing act between hope and fear.
One of the hardest parts was leaving him there. Walking out of the hospital without your baby goes against every instinct you have as a parent. It felt unnatural and, at times, almost impossible to process, leaving him in the care of others, no matter how incredible they were. The nights were especially hard. We missed him deeply, lying awake and wondering how he was, worrying about what challenge he might be facing next.
Through it all, the nurses and doctors became our lifeline. They were there in the terrifying moments when alarms sounded and we froze, unsure what to do. They were there in the quiet hours too, giving our son the love and care we so desperately wanted to give ourselves. They gently guided us, answered our questions, and helped us find our feet as parents in a world we had never expected to be part of. The nurses became our teachers, our counsellors and, at times, our family. Their calmness and compassion held us together when everything else felt like it was falling apart.
Early on, I began keeping a diary, not because I intended to write a book but because I needed to make sense of it all. Each day, I wrote down the numbers, the updates and the emotions that came with them. I wrote about watching his tiny chest rise and fall, and about the guilt I carried for not being able to protect him.
Writing became my way of coping. It gave me somewhere to put the fear and uncertainty. When Toby finally came home, I kept going. Over time, that diary became Dear Toby – The Diary of a Preemie Parent. It is raw and honest, written by a parent who lived it, felt it, and watched it all unfold from the side of an incubator. It shares the fear, the hope and the love that carry you through life in neonatal care. I wanted it to be something real, something parents could hold onto when everything else feels uncertain, and a reminder that even in the darkest days, there can still be laughter and light.
Today, Toby is eight years old and thriving. He is strong, funny, determined and endlessly curious. He loves climbing and anything that involves adventure. If you met him now, you would never guess what he went through in those first months.
He has a younger sister, Ruby, who was born at 29 weeks and absolutely adores him, and he is the most loving big brother.
My advice to other families going through neonatal care comes from lived experience. You are not alone. You may feel powerless, but you are still your baby’s parent, and your presence matters more than you can imagine. Sit beside the incubator. Talk to your baby. Connect with the parents around you, as they are living the same fears and hopes. Ask the questions, even the ones that scare you. Take care of yourself too.
Neonatal life asks you to be patient in ways you never expected. Progress can feel slow, and some days will feel like nothing has changed at all. But as the nurses would often remind us, a slow day is a grow day. Those quiet, steady moments matter more than you realise.
Learn to trust the staff and build relationships with them. They want your baby to thrive just as much as you do, and that shared goal can be a huge source of comfort.
Every journey is different. Some babies face fewer challenges, others more. Try not to compare your story to anyone else’s. Instead, celebrate the small wins: one gram gained, one less alarm, one good blood gas. Those moments become everything.
For me, Bliss represents the community I wish I had known more about at the time. It is a source of information, comfort and solidarity for parents suddenly thrown into a world of monitors, medical terms and uncertainty. Bliss shines a light on neonatal care and the families living through it. They give parents a voice, advocate for better care, and provide reassurance that whatever you are feeling is normal.
I hope our story brings comfort to other families and shines a light on the people who make survival stories like Toby’s possible. I will always be proud to be his dad, and forever grateful to the nurses, doctors and organisations like Bliss who helped him live the life he has today.
The trained volunteers at Bliss are on hand to help you and are there to support families whose little ones need neonatal care, no matter the reason for their stay, or how long they are there for.
Support can be given in person or remotely, via the Bliss email and virtual support services.
‘I really appreciate the signposting towards extra help and resources. I have booked a session with one of your Bliss Champions for next week. I really can’t thank you enough for the support and work you do for parents. Just knowing there are people out there who are going through a similar journey has always made a real difference on how I feel.’ Mum to baby born at 33 weeks
Bliss say: ‘Vitabiotics Pregnacare have supported Bliss since 2013 and their support helps us to provide our email support service, bringing information and support to thousands of families every year.’
Please get in touch at hello@bliss.org.uk for support and information via email or video call. More information is available here.
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