Chapter One of Book

Chapter One – The Beginning

Yesterday I was so angry, I was so cross, yesterday was a good day to start this memoire....... but I waited and I am glad I did. Today is a good day, today is a day with meaningful cuddles from Amber, Amber the little girl that inspired this journey. You may wonder about what happened yesterday I am sure I will tell the tale later on, lets put it this way, with all the shit we are dealing with, the fights we have to battle with the authorities for equipment etc, you never think you are going to have to battle closer to home and that people that you think are likely to help you, let you down in a major big way.

Well I am Carol-Anne, aged 37, just I might add, and mum to Nathan 12, Cameron 11 and Little Amber, our special child aged 4. I am married to Adrian, my second husband, but my soul mate, and the love of my life beyond doubt. He had been married before but without children. We married in Las Vegas 8 years ago in the little white wedding chapel. I wouldn’t say that Adrian took to fatherhood like a duck to water but got there in the end, but when faced with the old chop and having a child of our own, luckily he saw sense, and before long we were expecting our first child together. I wouldn’t say that it was an easy pregnancy compared to the boys because it wasn’t, and from day one there was something in the back of my mind telling me all was not right, not least the fact as 28 weeks and feeling pretty grotty I was admitted to hospital where not only did they discover that my baby was Pink (a girl) but was likely to be big, I also had excess fluid around the baby which is called Polyhydraminous. Being diagnosed with polyhydraminous at 28 weeks gestation was what I now know the beginning of the journey, a journey that at times has been unbearable, but a journey that I had to follow so that I would become the person I am today, not perfect, but different from what I once was.
Amber was born on the 22nd April 2005 by elective caesarean, this was because the sonographer couldn’t estimate her weight, only to say beyond ten pound, and having already had my first child that had got stuck coming out (shoulder dystotia) I wasnt going down that route again. Well Amber was big, but only 9lb 12ouzes slightly smaller than Nathan my other bug bubba, but she was long, at 55cm, and to be honest not all was well from day one. She was very floppy and soon after birth used to make a deep gulping noise, but as I never saw her do it, I put it down to just one of those things! She was beautiful, huge, and pink, just gorgeous, I know every mum says that there baby’s are the best they have ever seen, I am remember say it about my two boys too. She was a BIG bubba, and very very lovely.

We stayed in the hossie for around 4 days which is the norm after a caesarean, and fairly soon, there were doubts in my mind that something wasn’t quite right, I think the first was the fact that she would sleep 23 hours a day, was very sleepy, she dropped alot of weight, didn’t feed well, we spent an absolute fortune on bottles and teats trying to find something that she could tolerate, the health visitors were rubbish, she couldn’t tolerate the milk either with colic at 3 weeks that was so horrendous that we sought the services of a Cranial Osteopath, which did seem to help with also the change of the formula to Soya, and although she didn’t have the runny poo on Soya, the daily ounzes intake didn’t increase at all so the weight gain was slow very slow. I remember too my eldest brother coming round to visit, telling me about these morbid thoughts he had been having, he had been working away and it had all gotten to him. I remember distinctly sitting there with him with my beautiful Amber on my chest, all floppy telling him that it is “normal” to have such thoughts, and that I had had visions of me carrying a little white coffin! And I still think about that conversation, it was the conversation that I realised that there was something wrong with my little girl. Not long after, one morning, Adrian was working from home and I was in the usual position with Amber a child that was at this time pretty nocturnal!!! In bed, she was 12 weeks, and her arms and legs raised and lowered very slowly and rhythmically, that was the day, the day that she had her first clinical seizures, the day that when I took her to the doctors, my twin sister, the practice nurse was on duty, the day that the doctor that attended, was the doctor that had told my mum some 33 years previous that there was no way that she was having twins!, but he was the doctor that said, I am sorry there is nothing we can do for you here, you need to get her to the hospital as soon as possible. This wasn’t going to be the last time that I would hear those words “there is nothing we can do for you here!” The doctor that thought I wouldn’t share the moment of conception with another being, my lovely twin Catherine, was infact at this point in time right, there was nothing he could have done.