“A real turning point for me was when I was visited by a Bliss volunteer.” – Janie’s Story #NICUAwarenessMonth

On 27th March 2025 at 29+3 weeks, weighing only 2lbs5oz, we met our little girl, Izzy.

It all happened so quickly, we barely had time to process what was going on. I’d gone into hospital with pains under my ribs, along with other pre-eclampsia symptoms, and my blood pressure was 190/104. Within minutes we were on the delivery suite, and I remember laughing nervously with my partner, saying, “But I’m only 29 weeks!”

A growth scan had shown that baby was measuring on the 0.6th centile, so doctors explained I’d probably be delivering within the week. Two neonatal nurses came in to talk us through what the NICU would involve, and while I was so grateful for their reassurance, it suddenly all felt very real and very scary. Especially as the cardiologist told us she needed to stay in full term.

We were transferred to another hospital, and at 4am a surgeon woke me to say my baby needed to be delivered to save both of our lives. It’s a conversation no parent expects to have in the middle of the night, and I felt both terrified and numb at the same time.

The team were amazing throughout, and the relief of hearing she had arrived safely was overwhelming. But she was taken straight to NICU, and the wait before I could see her felt excruciating.

When I finally got to her side, about six hours later, the neonatal staff were wonderful. They explained how everything worked, what all the wires and monitors meant, and treated Izzy as the tiny but mighty fighter she already was. Their kindness and calm gave us both strength in those first surreal days of becoming NICU parents.

Being in the neonatal unit was a real rollercoaster for my mental health and well-being, as well as my partners. On one hand, we felt reassured knowing my baby was in the safest place possible, cared for by experts we could trust. That gave us comfort, especially in the early days.

At the same time, I was surprised by how quickly I adjusted to NICU life. The machines, the routines, and the waiting became part of my daily reality. Every small step forward — a tiny weight gain, a tube being removed, or even just a few extra minutes of skin-to-skin — felt enormous and gave me hope. 

But the journey was far from steady. Some days I could accept it as our ‘new normal’, while on others I was overwhelmed with sadness and couldn’t stop crying at the unfairness of it all. Alongside that came guilt. Guilt for struggling, guilt for wishing things were different, and guilt when I saw other babies who were even more unwell than mine. The cycle of emotions was exhausting.

A real turning point for me was when I was visited by a Bliss volunteer. Having someone who truly understood what life in neonatal care felt like made such a difference. They listened without judgement and reassured me that my feelings were normal. That support, alongside my family, helped me feel less isolated. Knowing there were people and resources I could lean on gave me strength and reminded me I wasn’t alone, even on the hardest days.

One of the toughest parts for me was the separation when my baby was transferred to St Thomas’ in London due to a serious cardiac prognosis. For four long days, I remained in Essex, unable to be by their side. Those hours felt endless, filled with worry and longing, and highlighted how powerless I felt in that moment.

The neonatal unit itself was overwhelming in unexpected ways. The constant beeps, alarms, and activity created a background of noise that made it hard to find moments of peace. At the same time, I was still recovering physically, but felt compelled to push through every day, just to ‘be there’ for my baby...even when I was exhausted or emotionally spent. 

Certain moments stick vividly in my mind: Watching for the echocardiogram, bracing myself for news I wasn’t sure I could handle. Waiting for that scan was a raw mix of hope and fear.

And then there were the bittersweet moments of seeing other babies leave the unit or move to different wards. While I felt so happy for those parents, each goodbye underscored how much I wished we could be home, too. The routines, the round-the-clock care, the endless waiting and paperwork, created a sense of monotony that made time stretch on even when every day felt the same.

I had heard of Bliss before, but it was a friend who signposted me to their support that made me go onto the website. Knowing that someone else had been through this too,  someone who truly understood the challenges of neonatal care, was incredibly reassuring. It reminded me that us that we weren’t alone, and that there were people and resources I could turn to during such a difficult and uncertain time.

Bliss made me feel heard and supported, and reminded me that I wasn’t alone. The day the volunteer came was when I was at my lowest. Izzy had just had a blood transfusion and caught an infection. After a month in the NICU, I felt like I couldn’t catch a break. Having someone there at that exact moment, who truly understood what I was going through, made an enormous difference. I would wholeheartedly recommend Bliss support to any parent in neonatal care. 

I would say to other parents in a similar situation to be kind to yourself. There will be days when you feel strong and days when it all feels too much and that’s completely normal. Allow yourself to feel whatever emotions come up, whether it’s worry, sadness, or even guilt. Talk to friends, family, or support networks like Bliss so you don’t have to go through it alone. Leaning on people who understand can make a huge difference, even in the smallest moments, and remind you that you’re not alone on this journey.

Izzy is doing amazingly well now! She’s now 5 months old (2 months, 3 weeks corrected) and putting on weight beautifully. Her heart condition, which once felt so frightening, seems to be improving on its own. While we may still need a procedure in the future, it’s such a relief to see her thriving and so much better than the original prognosis. Looking back at our time in the NICU, it’s incredible to see how far we’ve come...every day with her feels like a little victory and a reminder of the strength and resilience we discovered along the way.