This page was initially set up by a friend of ours to support us to stay near our little boy who was born prematurely.

After 6 years of trying to have a baby, various operations and medications we decided to try IVF. We were lucky enough for it to be successful first time and although elated we were terrified so we didn’t tell our friends until we had our 20 week scan and got the all clear.

We gathered our friends and family for a gender reveal and found out we were having a boy, & so the shopping began!

About a week later I started bleeding and went to East Surrey Hospital where initially I was sent home only to return the following day. They found my cervix had begun to open and that I would need an emergency operation. My cervix was 4cm dilated, 4 of the highly skilled surgeons stitched it closed (which was a task as the normally don’t operate above 3cms). The operation was very risky and I had to be kept awake in case my waters ruptured and I had to deliver the baby there and then. I was told I would remain on bed rest for the rest of my pregnancy, given that I was only 21 weeks that was a very long time.

After a few days I felt a gush and was told my pregnancy was over and I’d have to deliver our baby but as he was not 24 weeks he wouldn’t be viable so we would have to prepare to say goodbye. James and I had some time to come to term with this news but once in the delivery suite we found out my waters hadn’t gone and my pregnancy was to continue. We had this happen a few times and the staff at East Surrey were amazingly supportive through such a traumatic and draining experience.

At 23 weeks we were transferred by blue light to St Peter’s hospital in Chertsey as they have a Neonatal Intensive Care Unit (NICU) that can care for babies from 23 weeks. I was closely monitored by the lovely midwives and midwife assistants until I got to 24 weeks and 3 days when our boy made an appearance into this world.

James slept on the floor next to my hospital bed for 4 weeks, we were exhausted but that is when the really tough time began.

We named our boy Leo James (LJ) Frost and he stole everyone’s hearts from the moment he entered this world. Born so early he was a good weight at 838grams but his organs were still underdeveloped. He was cared for by the angels in the NICU who did everything they could to help Leo. He fought the hardest battle but contracted an infection that led to various complications which led us to having to make the decision to turn off his ventilator.

We barely slept for 8 days, grabbing hours here and there when Leo was stable enough but it was the best 8 days we ever had. 2 nights before Leo passed all of his stats dropped and while the doctors worked on him James comfort held him and talked to him for if he stopped Leo’s condition became worse. The nurses told us that Leo was soothed by the sounds of our voices as he recognised them from when he was inside my tummy so we started reading all of the books in the NICU.

The night Leo passed away we read to him all night and when we took him off the ventilator we read him ‘goodnight bear’ as he went to sleep.

The money we raised that we were going to use to stay near Leo we would like to put towards a project that will fund books for the NICU about a brave lion called Leo that we will write in his memory. If we can continue to raise money we will donate to the NICU Joey Fund to help them give other babies like Leo every chance possible at life.

We couldn’t be any more grateful for the help, guidance and care that has been provided to us by the midwives, nurses, consultants and all supporting staff. We know Leo had the best chance at life and without all of these people we would never have got a chance to meet him and to learn about his personality and how much character he had even at 8 days old. When the baby next to Leo was crying he would cover his ears up as he didn’t like the noise, he hated his feet being tucked into his joey pouch and he loved to pull on his cables and hold his ventilator tube.

His memory lives on, the bravest little lion that fought battles harder than most of us do in a life time <3

Leo James Frost

5th February 2018 -- 13th February 2018

'We're in pain now so he doesn't have to be'

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