Jenna’s Story

One of the Spoons volunteers, came to speak to my husband just after our little boy had been transferred (unexpectedly) to St Mary’s after his birth at another hospital. It was the first person he spoke to and he was really grateful for a listening ear at an extremely frightening time.

Spoons allowed us the opportunity to feel connected to our little boy at key moments of his journey, through the milestone cards. Those milestones seem insignificant to someone that hasn’t experienced NICU care, but to a NICU parent they are huge.

The volunteers provided a sensitive, positive listening ear when we wanted to talk – having volunteers with a lived experience of NICU means they can make unique connections with the parents which is incredibly special.

If I was to share some of the challenges of the experience, I’d say that having your baby in NICU sends you into a kind-of grieving process. Very quickly you begin to grieve the moments you have missed – skin to skin at birth, an opportunity to see or hold your baby, the golden hour, the first minutes, hours, days of their lives. It’s wonderful to be positive but try to understand that positivity can sometimes be toxic – sometimes NICU parents need you to sit with them in their grief.

Allow NICU families to talk about what has happened, even if you’ve heard the story before – it’s a way of us processing what has happened and desensitising ourselves.

Let NICU families know you’re thinking about them, but don’t expect a response. NICU is all-consuming and you often feel totally exhausted just from sitting at your babies bedside, especially when you are recovering from birth.

The most welcome messages were those letting us know they were thinking of us but without a requirement to reply.

The advice I’d like to share with other parents is – ask every question you think of. There’s nothing worse than sitting there worrying and wondering and the doctors and nurses will always answer any questions, no matter how silly you think they may be. 

Take as many pictures and videos as you can – it is incredible to look back on and see how far your baby has come. It was also useful to us processing things later down the line, you quickly forget how many days they were ventilated, on CPAP etc, and it’s a good way of piecing together the story.