Lily’s Story

Lily’s Story

Gestation: 28 Weeks and 4 Days
On Unit: 9th May – 4th August 2022

Emily, Lily’s mam, kindly shares her story with us. 

Lily was born on the 9th May 2022 at 28 weeks and 4 days weighing only 620g (1lbs and 6oz). She was intubated at birth and was taken to red area. She did so so well in the first few days, she got the breathing tube out later that day. Then being on CPAP for only a couple of days. Even though her breathing and lungs seemed to be okay it was definitely not a straightforward journey. She started to have feed at 4 days old but that was quickly stopped because she got a very big and shiny belly so she needed to have antibiotics, she didn’t have anymore food for a few days to let her belly rest.

Lily started to pick up well after this and slowly started to but weight on. But at around 4 weeks old she got another bowel infection and this time had to go 7 days without food and 7 days on antibiotics. Thankfully she picked up and we were back onto the journey of trying to get weight onto her. We finally hit the kilo club at 4 weeks old. With the help of the feeding team I finally got her to breastfeed and she just took off from there. And after 87 days we finally got to take her home weighing 1.8kg. Finally, she got to meet all of her family.

We cannot thank all of the staff enough for everything they do – They saved our little girl! Obviously it was hard not being able to have family come and meet her but the staff were so supportive and kind of became our family for the 3 months we were on the unit.

How did Tiny Lives impact your time on the unit?

Tiny lives were amazing, when we arrived onto the unit, we got our tiny lives family pack which was amazing and really helped, it had loads of little treats for us. The vCreate was the best thing for me I loved getting the pictures and videos on a night time when I could not stay with my baby I loved it so so much – it was my favourite part of the night. The Miniboos were so amazing to have, it meant I could smell my baby when at home and felt like I had that connection to her even though I wasn’t with her. We also loved the crafts that were provided, they were so much fun to do and a great distraction on those really really hard days!


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