Lily

Emily and Dan had their first child, Lily, right in the middle of the pandemic. They spent four precious weeks with her before she passed away. Emily tells us how incredible the St Michael’s Neonatal Intensive Care Unit (NICU) staff were when she and Dan were going through the most difficult period of their lives.

“Lily was born in June 2020 during the Coronavirus lockdown. She was just 22 weeks old; a ‘micro preemie’. In fact, if she had been born just 12 hours earlier, she’d have been so early that she wouldn’t have survived the birth. But our little fighter hung on. 

We spent two weeks in Southmead NICU in North Bristol before we discovered Lily had a perforated bowel, which meant she had a hole in her intestine or colon. Because of this, we were moved to St Michael’s NICU for surgery and special care. She spent the next two weeks – the rest of her life – in the unit. 

Our first two nights there, we stayed in the Butterfly Room, which was a private room on the unit where we could be with Lily, away from the stress of the ward. It was decorated by Cots for Tots with soft furnishings like a bedroom and it was nice to have the escape. After that, we were given a room in Cots for Tots House. 

Cots for Tots House gave us a chance for some respite, peace and normality. It let us get away from the unit and be somewhere else, somewhere that felt safe – which, in the middle of lockdown when you couldn’t go anywhere, was vital for us. Our parents were several hours away, and we didn’t have anyone here, so we appreciated having that. 

The bag of items we received from Cots for Tots when we entered the unit contained things we used every day we were there. I filled the ‘Your NICU Journey’ diary up and it gave me the chance to record and remember every little moment with Lily. The Miniboos and muslins were amazing, and Miley, Lily’s little sister, now has some of them. 

Kristy Dunk, one of the ward sisters, is so important to us. She was the one who made us realise that Lily was coming to the end of her life and helped us prepare for it. She was the one who guided us through it. She helped Dan change his first-ever nappy – which was Lily’s last nappy. She helped us take foot and handprints. I couldn’t ever dress Lily because she was so poorly and was attached to so many wires, but Kristy got me some clothing so I could dress her at least once.

She sat us down with Dr Anoo Jain, who took incredible care of us. He gave us much more time with Lily than I’d anticipated we would have during the pandemic. He allowed our parents to come in so they could sit down with me and Dan when we made the unbelievably difficult decision about Lily’s end-of-life care. 

To Anoo, I’m so grateful. He let us go back and visit Lily the day after she’d passed away in my arms. He gave us that extra time with Lily that we’ll always be grateful for. 

Because of the lockdown, we couldn’t have our family around us, so the unit staff became our family. They were the ones supporting us, holding my hand, Dan’s hand. They stepped in and held us up when we couldn’t, and I don’t know what we’d have done without them. 

We felt very, very lucky that we were in St Michael’s NICU. We wouldn’t have wanted Lily to be cared for anywhere else. 

We created ‘Lily’s Legacy’ where we fundraise for the charities that helped us during this time and to create a legacy for Lily so she’s never forgotten.

Your contribution will help so many people. From the staff, whose jobs are so incredibly hard, to the babies and their families who need life-saving care, support, somewhere to eat and sleep in peace. And if you can give someone that gift – well, we can’t think of a better use for money than that.  

You’ll be helping us create Lily’s Legacy – a way for her to live on in every little life this money changes.”