Leo's Story …Leo had other ideas and he made his very early entrance in to the world at just 29 weeks, weighing a respectable 1365g… I used to sit and watch him, while the parents around me held their babies and I’d cry at the unfairness of it all. I felt desperate over these 10 days to get him closer to home, to a hospital that would accommodate him in an isolation room so that I could hold him, comfort him and cuddle him better. I was on a family holiday in the Algarve with my husband and our two sons, Jake (8) and Dominic (4) when my waters broke at 26 weeks. I was taken in to Faro hospital where I spent 3 weeks on bed rest, waiting and wondering and above all hoping that my baby would stay put and make it to a respectable gestation, 34 weeks was bandied around as a ‘good’ week to be born, I was hoping for much longer, but Leo had other ideas and he made his very early entrance in to the world at just 29 weeks, weighing a respectable 1365g. I was very unwell during Leo’s birth and put under general anesthetic, I missed his birth and it was 4 days later that I met him for the first time and had a very long awaited cuddle. When Leo was 5 days old we were met in the corridor by a doctor who told us that Leo was critically ill, he had contracted a serious infection and the doctor prepared us for the worst. I was devastated, I became quite detached initially, I’d sit and watch him, but not being able to help him and seeing him so unwell really broke my heart. My husband and I had conversations that no parents should ever have to have, we looked in to some very dark places over that time, perhaps one of the worst was taking our other two children in to meet Leo, to say hello and goodbye all at the same time. Together we shed many many tears. After a very long 2 weeks and against all the odds, Leo slowly started to get better, his sheer determination and the amazing work of staff on the unit had got him through and I started to believe that I would eventually get to take Leo home. Although I felt hugely relieved, I also held on to a lot of fear regarding what the future held for Leo and the rest of our family. Leo has lesions on his brain, a condition called PVL. He also had a brain abscess that required surgery before he flew home to England, all of these factors meant we didn’t know how he would be affected as he grew, whether he’d walk, talk, feed himself or even be able to smile at us. Leo spent a total of 5 weeks in Intensive care in Faro, during that time we went through all the emotions you can go through, we felt joy at having a 3rd son, elated that he had been born and seemed to be doing well, we went through the normal process of choosing a name for him and had the normal disagreements that go with that. Our return to England, on an air ambulance for myself and Leo and the closest we will ever get to flying in a private jet, did not signify the end of our journey. Leo was transferred from Faro to Lewisham, we spent the next 10 days doing the 3 hour round trip to see Leo, logistically, these days were some of the hardest. Our other children were back at school, our time was stretched, Jake and Dominic were not allowed on to the unit, which is common during the winter months because of the risk of infection to other babies on the unit. But worst of all, because of the infection Leo had contracted in Portugal, he had to remain isolated, in Lewisham this meant I was not allowed to take him out of his incubator. I used to sit and watch him, while the parents around me held their babies and I’d cry at the unfairness of it all. I felt desperate over these 10 days to get him closer to home, to a hospital that would accommodate him in an isolation room so that I could hold him, comfort him and cuddle him better. He was finally transferred to a hospital about 15 minutes away from our home where he stayed in an isolation room for 5 more weeks. My children and family and friends were allowed to visit him for the first time, I could come and go more easily, my husband could visit him after work and it was such a relief to be able to be together more. He finally came home 2 days before he was due, having spent 11 weeks in hospital. It was a baptism of fire bringing Leo home, the support network of the hospital and the security blanket of the nurses disappears and you 5ealize you are now in charge of taking care of this fragile little baby, a baby in our case that was still requiring care in the form of 19 doses of medication a day, he was discharged with an apnea monitor, this would alert us if he stopped breathing, thankfully we only ever had false alarms and it took for my mother in law to stand on his apnea monitor lead and break it a few months later for us to finally get rid of it, we should have much earlier but it’s difficult to let these things go. By some miracle, Leo has grown in to a healthy, able, amazing, funny, feisty, determined and very cute little boy with no apparent problems, but the experience of having a premature baby and living through everything that goes with that has been life changing for us all.

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