Natalie and I were so excited when she fell pregnant. We were financially secure, both had good jobs and a nice home to raise a family. We had deliberately waited until everything was in place to have a baby. Just like most expectant parents we spent the next 9 months excitedly wondering if it would be a boy or a girl. We were buying bottles and sterilising kits. Milk prep machines and all the other equipment you need for a new born. In the early days we presumed we would be staying at our first family home so decorated the nursery ready to welcome our newborn. We would walk the dogs discussing names and for some reason girls names came easy and boys less so. We always wanted to know the sex prior to arrival, we like to be organised. As soon as we found out it was going to be a boy we were over the moon.... but we didn't have a name! We love our sport and our relationship has been built around sport. We were happy for any sex of child but a boy just seemed to fit our lives. The name George was decided soon after and as the due date drew ever closer we would set up next to me cribs and other equipment in the house and would jokingly say hello George and talk as if our soon to be child was lay there. The day of the birth Natalie collapsed and lay unconscious on the floor. 999 was called and off she went, blue lighted to the hospital. We didn't know at the time but she had suffered a double rupture of the uterus with one rupture being a blood vessel. A few hours later she's lay in recovery having delivered George via emergency c-section. "George has been born in poor condition" I am told and Natalie will be out of theatre shortly. Within hours George was transferred to Wolverhampton hospital for cooling therapy, whilst Natalie remained at Telford. I had a decision to make, go with George or stay with my wife. Talk about hobsons choice. They remained separated for the following days, I was the liaison officer. Mum was unable to see her son and I was scared to bond with him incase he didn't make it. I felt incredible guilt. I was able to see him but mum couldn't. Mum and son were in hospital for a prolonged period of time. Mum was discharged first but still recovering. We visited George daily. During the following days we learned how to gravity feed him through his ng tube, neonatal first aid and how to manage his siezures. Eventually George was discharged. As far as we were concerned he would live a full life in terms of years but would have complex needs due to the severity of his brain injury...HIE grade 3. We got George home in time for my birthday and Christmas. Wow! We were so happy. We grew more confident feeding him through his tube. 3 hourly to begin with. A full feed and cares took just over a hour leaving us little time in between. 1st time parents getting to terms with a new baby with complex needs, mummy still recovering and less than 2 hours between feeds. It was a recipe for disaster. We battled on though. George required aspirating before a feed. (Drawing fluid through his ng tube and checking ph levels to ensure its in his stomach and not his lungs) A stressful thing to do and not always easily achieved. 3am was the favourite time for a difficult aspirate. Not ideal when your so fatigued you can hardly keep your eyes open. We got by and always managed to feed him, ensuring that he never pulled his ng tube out as that would require a trip to the Princess royal hospital to be replaced. As the days went on we wondered why George cried so much and was so stiff. He was so upset during nappy changes that it would make us cry to see him in such distress. Clothes changes were equally bad and baths were impossible. Soon came the hope house hospice referral. Following a visit from our support worker George was expedited in. They couldnt believe how uncomfortable he was and how we had managed. From reading Dr google we thought we were dealing with colic..... oh no! The hospice couldn't believe how we were coping and truth is we weren't. We were dead on our feet and merely surviving. 2 weeks of symptom management at the hospice meant we had George in a better place and as much has been done as possible to keep him comfortable without specialist input. What a special place the hospice is and on the first visit we are given a full tour. What a fantastic place! The staff are like angels and the parents are cared for almost as well as the children. It provides us a safe space where we can relax with no prejudice surrounded by people who understand. We had dreams of standing on the sideline of a football pitch or rugby pitch watching George playing and definitely not spending time at a children's hospice. We knew George would have additional needs and our hope was that he could speak, drink and eat as it was apparent early on that he would likely be unable to walk. Soon after his discharge from the neonatal unit we learned it was unlikely he would be saying mummy or daddy as he grew. We were also realising that the dream of spending his 21st birthday and my 60th birthday in Munich sharing a drink at octoberfest was to be exactly that.... a dream. Next came the opthalmology appointment. "I think George is blind and can only differentiate light and dark" a teary walk home followed. What more can we take was the question. George is now as comfortable as he can be. He doesn't tolerate formula and is in pain daily. He cries unconsolably for hours on end due to cerebal irritation and suffers from siezures. We are so glad that he is here and once he's had specialist support we hope he can live a more comfortable life. We are hoping for a peg to be fitted which allows him to be fed direct into his stomach. Life is extremely difficult for us but more difficult for George. It breaks our hearts to see our baby boy in pain and feel hopeless as parents when we can't console him. There have been very few nights since George has been home where we have gone to bed as a family. Usually one of us is sat up through the night trying aimlessly to console him..... and this is where I am now (he's asleep on me now so I'm to scared to move, in fear of disturbing him.) We have found it difficult going public with this as we are such a private family, but our hope and aspirations are that no family goes through the same. We know that is unlikely but if we can raise awareness and stop even one family from experiencing similar we will have achieved. We are going to keep George's gofundme open allowing donations at any time as his equipment is expensive. £500 for a seat to support him when feeding. £750 for a play mat which supports him in various positions. £3500 for a specialist bed. Non of which will cost anywhere near that to produce. We are also having to sacrifice the downstairs office and utility.... the 2 main features we wanted when buying the house. These will be converted into a bedroom and wetroom with reinforced ceiling for a hoist system. As stated on my previous update. We will be starting a Facebook page dedicated to George. We will post updates of his progress whenever we can (bearing in mind he's a difficult baby to manage) We feel its important to offer you the opportunity to see where your money is spent and how it helps us.
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