Thanks for taking the time to visit my JustGiving page.

For my birthday this year, I'm asking for donations to Bobath Children’s Therapy Centre Wales. The Centre provides specialist physiotherapy, occupational therapy and speech and language therapy to children all over Wales who have cerebral palsy or a neurological disability. The centre in Cardiff accepted our little Eddie on their Early Intervention Scheme and will work with him to help him start moving until he’s 2.5 years old. Our Eddie was born very prematurely and has had a very rough start to his life. Please help us raise money for this charity that can help him develop, grow healthy and live a normal life. Below you can read our story, how we got here and how our little Eddie is an absolute miracle.

Finding that pink line on the pregnancy test was a complete surprise for me. It was unplanned, unexpected and to be honest, couldn’t have been more badly timed. Looking back now, the pregnancy itself didn’t get any easier. When people say that pregnant women have this kind of bloom around them, for me it was more of a gloom. I was sick, tired, couldn’t sleep or eat properly, and on top of that serious problems in the relationship and a very stressful job. Not ideal!

When I was 23 weeks pregnant I started showing a tiny bit, although I still looked like I had a bit more for lunch than normal rather than being pregnant. For the coming weekend my partner Ben and I were planning to go to Snowdonia. That didn’t go as planned. Instead, I woke up on Thursday that week and was bleeding a bit. I googled the symptoms and then walked to work as usual, because Google said it can happen. My colleagues persuaded me to call my midwife and then called me a taxi to go to the hospital. I didn’t take my pregnancy notes, I literally thought I would be back at work in a few hours. Instead, after the examination, a doctor sat me down and told me “don’t panic but you’re in labour”. Well, you can imagine I started panicking. At only 23+5 days pregnant.

The following few hours I went from crying, being petrified, calling my parents, wanting to leave the hospital because the doctors were obviously wrong, to being scared that Ben wouldn’t even show up. If I ever thought before that I wasn’t ready, I definitely wasn’t ready for this. I was transferred onto a delivery suite immediately and got a midwife assigned to me. Within a few hours I was given lots of painkillers and other medication to try to stop the labour, as well as steroids for the little one. Ben arrived with a few friends and I basically cried through it.

Many doctors talked to us after that, explained what little chances there were, what were the possible outcomes, and told me I needed to keep the baby (until that point the sex wasn’t confirmed) inside until at least 24 weeks. The people, nurses, doctors, midwifes, and everybody involved were absolutely amazing. Contractions started slowly but surely and by Saturday morning I was praying for whatever to happen to stop this. At that point, we knew it was going to happen that day and I had never felt less ready. I felt like I needed years to prepare for whatever was coming. I needed my parents, who were thousands of miles away. I wanted as much medication to kill the pain as possible, however I couldn’t get any because it was too risky. Another hard thing was deciding about the unborn baby’s life, just in case. Deciding whether we wanted for the doctors to do everything possible to keep the baby alive or to let nature do what was meant to be. We agreed to give it a try but not to push the little one if he didn’t want to stay with us. I had never felt so lonely in my life. We had been waiting until late evening for my water to break, but once it did the rest happened very quickly.

Eddie was born on Saturday, 12^th of May 2018 at 24 weeks of gestation, weighing only 640g (1.4 lbs), breach, but despite all that decided to fight his first big fight for life. Doctors asked us if we wanted to see him, I’m not sure if Ben did, but I was so exhausted that the only thing I wanted was to sleep. Eddie went straight into an incubator and got transferred to the neonatal unit. I got morphine and thought I would rest, but hallucinations and sickness followed. In the early morning hours we were woken up to be transferred to a normal room and after a couple more hours of sleep a nurse came to ask if I wanted to start expressing milk. Honestly? That was the last thing I wanted. I didn’t even want to see my baby. The first journey to the neonatal unit was horrifying, all I wanted was to go home and forget about everything that had happened. Eddie was at the far end, where the sickest babies were, and he was also the smallest one at the unit. When we first saw him, he looked like a little alien without any body fat, with see-through skin, red in colour. I felt awful for not feeling the supposedly instant maternal love.

NICU became the place where I spent most of my time and yet the place I hated most. The dim blue lights, the beeping machines, the hushed tones of doctors and nurses, medical language I didn’t understand despite being fluent in English, everything sterile… On top of the early arrival, Eddie had a large haemorrhage on his brain on both sides and was fully incubated. It was a miracle he survived. That day was the beginning of his long journey. I rushed to get home to sleep in my bed and asked to be discharged the same day. The whole thing felt surreal. For the first few days Eddie was doing amazingly well, but then he got sick very quickly. We were scared to be called in every minute of every day. I felt constantly on edge and unable to relax. I would lie in bed clutching my phone, petrified whenever it rang in case it was bad news. Multiple complications, multiple “you should say your goodbyes now”. Every day was a nightmare with so much stress and fear. Expressing milk every three hours became a very hated chore, especially since Eddie couldn’t receive any milk because of so many complications.

Two days passed and it felt like a week, every day dragged so much. A couple of weeks after Eddie was born we were called at night and spent a day and a half on the unit nonstop as everything was pretty bad; even Ben burst into tears once. Eddie proved the doctors wrong and despite all odds he kept fighting and got better again. I had my first skin to skin cuddle with Eddie with about 6 nurses around just to make sure Eddie was ok. I felt like I couldn’t even move or touch my baby. However, I  slowly became familiar with the nurses. Their guidance was great and we could have been involved as much or as little as we wanted, or that is at least what they said. Over the time Ben slowly stopped paying Eddie frequent visits, everything seemed to be much more difficult and the mental health of both of us was slowly hitting bottom. I felt so much pressure; I am the mother, I was the one who always had to come and visit. A few times we planned a trip somewhere and some nurses encouraged me to have a bit of a normal life, but on return to the hospital some nurses couldn’t not mention that I hadn’t visited Eddie for a day. I felt like they judged me and wondered how I could possibly dare not to show up for a few hours.

Most days I felt a strong urge to either curl up in a ball or run away and not have to face life as it was. I felt like jumping out of the window. I don’t think I would have done it, but I felt lost, lonely and distraught. I went through days when I hated even the thought of going to the hospital and days when I couldn’t be anywhere else because it was the only place where I felt safe. I needed Ben but he wasn’t able to be there for me. None of my friends understood (and I don’t blame them) but I felt like I was abandoned. I lived for my job and felt like it was taken from me. Everything was falling apart.  Anybody who tried to be there for me was just not good enough. I felt helpless and hopeless. I kept expressing milk and in the first weeks I did so well that even nurses told me I had to store it at home as they had no space left. That quickly changed, because mental health clearly affects everything. SCIPS, a charity that is based in the hospital offered me private counselling, probably because I cried most of the time, not only when Eddie was not well, but even when he was getting better. I started attending weekly sessions and it took a good 6 months for me to realise that this was not my fault. The idea that every woman has a pregnancy that is 9 months long is just an ideal situation, but what happened to us can happen to anybody.

Eddie was slowly getting better and once he was off any help with breathing, it was just a waiting game until he was ready to go home. I gave up on breastfeeding as the pressure of it and the slow decrease of my milk supply was bringing me down even more. Another hard thing on the unit was seeing all the babies come and go. Nurses told me to talk to other parents many times, and I did, I made a few friends, but most of the time I was jealous of their babies’ progress or the support they had around them… Most of the people I met through NICU always come back and look for a reason to drop in and say hi, but the journey through NICU is the one thing I would very much like to forget about. However, I am and will always be so grateful for all doctors and nurses that helped Eddie to fight for his life.

Eddie got discharged on the 12^th of September, exactly 4 months after he was born. Ben and I roomed in for the last night, I don’t think we even exchanged one single word that night, now I know that Ben had never been that scared in his life, and I was too. Unfortunately for me, I was the one who had to be ok and strong. It was just expected of me. We were actually lucky, as Eddie didn’t need any oxygen help at home or a feeding tube, and yet it didn’t feel great.

The first few months at home were definitely not a piece of cake, but I guess it never is for any new parents. I can’t say we didn’t go through anything abnormal (apart from using a lot of syringes and medicine every day), just a lot of crying and the usual things that come with a ‘newborn’ baby. I had to take Eddie back to the hospital three times, twice for a bad episode of bronchiolitis (when once his lung partially collapsed) and once for a hernia operation. Apart from that, our Eddie has grown to be a very happy little boy and I’ve grown to love him more than anything in the world. So did Ben, despite all that’s happened. Our relationship didn’t survive, we failed as a couple, but not as parents,  Eddie gave us the strength to realise that even when things aren’t going as planned, we can survive.

Eddie’s now 15 months old. He would have been 1 year old on the 1^st of September 2019 if he was born on his due date and weighs an amazing 10 kg! He doesn’t roll over much (even though he can do it), he can’t sit up by himself, he doesn’t crawl and is behind with most of the normal milestones. I stopped taking Eddie to baby groups because I couldn’t cope with other children developing normally and felt like I wanted to give Eddie as much as I could to be able to give him a normal life. After contacting Bliss, an international charity for sick and premature babies and Bobath Centre for children with cerebral palsy, Eddie has been admitted onto the Early Intervention Scheme in Bobath Centre Wales and had his first assessment with a senior physiotherapist in August. We will have more sessions to go to and an intensive block every 4 months. It will be a lot of hard work and exercise and we are praying that Eddie will be able to have a normal life one day.

Eli, Eddie's mum