19Jan08 - Looking Back 04 & 05

I have posted a link in the sidebar to a second video slideshow which covers from the time Lucy came home in July 2004 to the end of 2005.
You can also watch it by clicking here "Lucy May - The First 18 Months". Looking back it is hard remembering exactly how difficult life was during this time. There were so many changes and so many difficult situations that we had to get used to. In a lot of ways it was the most forgettable time of my life. The shock of Lucy's arrival and the aftermath of hospitalisation took a long time to come to terms with. Even harder was coming home and trying to establish some kind of normality in all our lives. I lost all sense of future and could only look forward as far as the next day because I just did not know what to expect or what to hope for. There were so many unanswerable questions; what was Lucy going to be like when she gets older; just how severe will her disabilities be; will she ever respond in any way; will she see; how long will she live; will she be able to eat normally; etc, etc. We are a little wiser now and I am glad we are passed all of that. Of course all is still not certain but we are now better equipped for the life we have been given. The funny thing is that when I was choosing the photos and putting the slide show together I had a completely different memory of that time with Lucy which took me by surprise. I was expecting it to be quite emotional and for it to conjure up all sorts of negative thoughts. As I began to play it back, I started to realise that it was not all doom and gloom, there is actually a lot of good to look back on. The main thing that hit me was just how much Lucy developed and grew. Just looking at how long her hair is at the end of the video says it all. The video also reminded me that there were happy memories that have been hidden by my own negativity. The first time I watched the whole video from start to finish I will admit that my eyes were a little wet but not because it made me sad, it made me proud to see my little girl grow up and happy that I could watch and enjoy remembering, that although it was unpleasant at times there were also a lot of good times too. I asked my Mother to watch the video and give me her opinion. She said that the yes she did cry and it was emotional but in an uplifting way and that is exactly how I feel about it. Every time I watch it now it gives me a lovely warm feeling. It is easy to concentrate on all the negatives and also easy to forget the good, but it is the good memories that I want to keep like this photo of Lucy which is one of my favorites.

11Dec07 - Holly May

I have started reading a book called, "Different Dads", which was recommended to me by "Contact a Family" and it has been comforting to find that I am not so different after all. The book is a series of accounts written by fathers whose children have a wide variety of complications. From the few accounts I have read so far there is a common theme which is so familiar to me. For each account I have read, I have thought, "It could be me writing that!". Each starts with the confusion and despair of being thrown into an unexpected situation. The accounts of the moment of realisation immediately after birth have been especially difficult to read. It has brought back vivid memories of those first hours. Your child is born and nothing is as it is supposed to be. You immediately know that something is not right. When Lucy was born my first thought was, "OK no problem the midwife will pat her on the back, clear her lungs, she will cough and then start crying". Seconds later I knew that I was wrong. My next thought was, "Oh no she's dead, they are going to try and bring her round but its no use, she is already dead!". At the same time I am telling Dawn, "Everything is OK, the baby is fine", knowing how ridiculous it sounds. I couldn't tell Dawn what I really thought, not after the hell she had just been through but I knew she was already thinking it as well. Lucy was not breathing but the midwife still asked me if I wanted to cut the cord. Why did she do that? I watched them carry Lucy's lifeless body to the corner of the room where they started bagging her (They place a mask over the mouth and manually squeeze the bag to try and get air into the lungs). This was obviously having no affect. All the while Dawn was asking what what going on because from where she lay she could see nothing. I kept telling her it was fine and that everything was going to be OK. She said to me,"She's dead isn't she?". I knew I had to keep saying that she wasn't but I didn't believe it. The Pediatrician arrived and tried to use the oxygen mask that was in the corner of the room but it didn't work so Lucy was rushed out of the room to the neonatal unit. We were just left in the room with a midwife who tried to say that it would be OK and then left us. We were both thinking the worst. We asked a few times what was happening but nobody could tell us. Our newborn baby had been taken from us and we didn't know whether she was alive or dead and nobody could tell us what was happening. After what seemed like an eternity somebody came and said that we could go and see her. The relief to know that she was still alive was enormous and at that moment I found myself being optimistic that it had just been a complication and now Lucy would be fine and everything was going to be OK. I should say that at this point Lucy was going to be Holly May and we hadn't really named her yet. When we got to the neonatal unit Lucy was still lifeless but alive. This is a photo taken only a few hours after she was born.We didn't know the implications of what had just happened, we just knew that our new baby girl was alive. We introduced ourselves to her and decided that we had better give her a name in case she didn't pull through. We didn't want her hospital tag not to have a name on it. I don't know why but we changed our minds at the last minute and called her Lucy May and not Holly May. Lucy is such a pretty name and it has always suited her. Lucy is definitely the right name for her and I am so glad now that we changed our minds. We had decided on Holly May as a name after we found out that our baby was going to be a girl and there had never been any real question that it was going to be anything else but when she was born she was just not a Holly. For a long time after and still now sometimes I think about Holly. Holly was the little girl that didn't come to us. She was the little girl that we lost. Lucy came to us and I love her to bits and now I wouldn't be without her but the baby I dreamt about and prepared for when Dawn was pregnant was Holly. I can't help feeling that I lost Holly when Lucy was born and I think it took me longer to accept Lucy because I was grieving for that other little girl. In a small way I probably always will. I loved her but I never got to know her. I pictured her taking her first steps and saying her first words. I imagined her wedding and I thought about meeting her children for the first time. I see her now in all the little three year olds that I meet or see running around the supermarket. I wonder what she would have been like now and I feel cheated that I never got to find out. I feel she was cheated in that she never got to be part of our family and Joshua was cheated because he never got to do all the things he was looking forward to do with her. I have even thought about having a funeral for Holly May, planting a tree, making a small memorial or just something to signify that she is lost to me so that I can move on. These feelings are not without guilt. Every time these thoughts creep into my head I am wracked with guilt about Lucy. I should not see her as unexpected or different and I know that really I don't. I like to think of Lucy as our surprise gift. It is true that I didn't expect to have a daughter like Lucy and if I had expected it I probably would have been filled with dread. What Lucy has given us is something completely new and wonderful. We have had to acclimatise to our new environment but what we have found is that it is becoming a really nice place to be. Lucy shines like the brightest star on all our lives and continues to teach us that everything is not quite as it seems. Just because things are different doesn't mean that they are bad. I look back on the last three and a half years and feel really proud of everything she has achieved and also of everything Lucy has given us. I have a wonderful daughter in Lucy and I wouldn't change her for anything. Holly May will always be a memory of a life I used to have and I won't forget her. I will probably always selfishly miss doing all the normal things I planned to do with her but I like my new life and I love that Lucy is part of it. Lucy May has brought us so much more than I ever expected and she has given us a new and wonderful life. She has taught us to appreciate everything so much more. Every good experience is magnified several times and I no longer take for granted that what I expect is always the best outcome.

21Nov07 - Welcome Home Dad

I have been away from home for a long three days working in Holland and have really missed the children. Its funny, sometimes you are quite happy to get a break but as soon as you are away you miss it and want to be back.

In the early days it was a relief to escape from all the mess and I didn’t really want to be at home. It took such a long time to really get to know Lucy and at first it didn’t feel like I had another child. It was all give, give, give and it seemed like she was never going to give anything back. In fact the whole thing was hopeless. Trying every day to get some glimmer of a response, something that I could work on, some way of Lucy showing me that she knew I was there or something that would say to me, “Don’t give up, it’s not all as bad as you think”. For so long, I believed that Lucy would never know that I was her father or even know that she was part of our family. As I got to know Lucy and she developed she slowly started to respond with noises and movements that I learnt to recognise. When this happened it changed my whole outlook but something Lucy’s consultant said still played heavily on my mind. When Lucy was about 8 weeks old, I had asked the consultant what Lucy’s life expectancy was likely to be. She explained that children with Lucy’s complex problems were much more susceptible to all sorts of nasty things that I can’t really remember, particularly chest infections, and had gone on to state that Lucy may not live past 3 years old. I can remember not dwelling this too much at the time but afterwards and for the following three years I thought about it a lot. I could not look beyond her third birthday and in a way I wanted to skip this period of my life. I often pictured what her funeral would be like and how I would feel visiting her tiny little grave. I wondered how all of us would cope and how we would ever be able to move on. Sometimes it made me feel incredibly sad and other times I will be honest it was more a feeling of relief. I guess relief because everything seemed so futile, Lucy’s life was such a struggle to begin with and I just could not see past this 3 year brick wall. Of course thinking this way brought with it intense feelings of guilt because nobody should think this way about their own children. However Lucy grew stronger and stronger and it became clear to me that she was going to be healthy. I knew I shouldn’t put a limit on her life with us but the 3 year thing was still a mental barrier for me. I always half expected her to get sick and worried whenever she was that it would progress into something she would not be able to overcome. I suppose because I knew I couldn’t fix it, I retreated from the whole situation and found comfort in escaping from it. It was a horrible way to feel and I wish now that I had made more of that time. Lucy has proved everyone wrong many times over and I see her now as such a strong, happy little girl and I would not change her one bit. Her third birthday was a huge moment for me and when it came it brought an overwhelming sense of relief. I said a big thank you prayer and began to look forward to her next one. The future will bring whatever it brings with no limits or preconceptions. I will still worry like any parent would but I am just glad to be past that 3 year hurdle.

Now when I am away I really miss not being around to see those little smiles and half giggles that she gives me. I know now that she definitely knows who her father is and we have got such a very special relationship, which I never expected to have. I sneaked into her bedroom at about 22:30 when I got home because I knew she was still awake. As soon as I spoke to her she moved her arms and I could tell she was listening. I gave her a little kiss and she gave me the biggest smiles. My heart melted and I had to get her out and have a big cuddle. It will certainly go down in my memory as one of the best welcomes I have ever had. Standing there in the dark, with Lucy in my arms, I knew it was good to be home.

08Nov07 - LGI Revisited

We returned to Leeds General Infirmary today for the first time since 11th July 2004 when Lucy was transferred back to Dewsbury Hospital. Lucy had an appointment with an Orthopaedic specialist to check on developments with her hips. Dawn felt it first but walking towards the hospital entrance was uncomfortable for both of us. We had done this day after day after day with Lucy lying unconscious and seriously ill in the childrens intensive care unit. It was like travelling back in time, the same long empty, impersonal corridors, the same hospital smells and sounds. I thought of the children upstairs and their parents just starting their journey into the unknown. As we passed the MRI unit I thought of waiting for Lucy's results and then being told in the "quiet room" that our daughter had cerebral palsy, was quadriplegic, had severe developmental problems and probably would never walk or talk.

By the time we had found our way to the childrens' outpatients clinic we were both feeling a bit low and then we were met by a room packed full of very well looking children and parents waiting for their appointments. We both looked at each other and thought the same thing, "Oh no, this is just what we need!". After scanning the room I discovered we were not the only non-mainstream family and once we found a quiet corner to sit in it was actually fine. We didn't have to wait too long before they sent us off to get Lucy's hips x-rayed. Probably due to her high muscle tone, Lucy's hips have gradually come away from their sockets and are now permanently dislocated. The x-ray was to check how this had developed in the last year as some of Lucy's physiotherapists were concerned that she may be suffering some discomfort. Lucy was very good for the x-ray and the radiologist managed to get the shot first time.The x-ray really just confirmed what we already knew, that both hips are out and the hip sockets have not formed correctly as a result. The Orthopaedic specialist we saw was a man called Peter Templeton. I would not normally put someones name here but he was absolutely brilliant. He treated us with a sensitivity that I have not experienced before from consultants and specialists in his position and he showed real compassion in the way he offered information and advice. We had already come to our own decision that the only reason to put Lucy through major surgery would be if she was sufferring pain in her hips or became difficult to deal with if she stiffened up too much. He agreed with us explaining that to reconstruct both sockets and reconnect the hips would involve two lots of major surgery and the benefit would not really be worth it. Firstly it is very unlikely that Lucy will walk and secondly the hips would probably just work their way out again. So we left it that he will review her in eighteen months and we will only think about surgery if Lucy starts to experience a lot of discomfort and pain.

After it was all over I was very glad to get back in the car and drive away with Lucy in the car. I didn't have to leave her behind today and it felt great.

28Oct07 - The First Weeks Again

The video I made (Lucy May - The First Weeks) has stirred up a lot of emotion for us and also for our close friends and family for whom the memory of Lucy's introduction to the world is still painful.
It was not really my intention to do this but I did want to record those weeks for other people to see that despite the horrrendous reality of being in that situation, life does go on. We are three years on now and a lot has changed, Lucy has many challenges but she is healthy and it is easy to forget that we experienced some small miracles during that time.

I remember when Lucy was struggling but stable in the neonatal unit at Dewsbury Hospital. I arrived one morning, the day of Joshua's sixth birthday party and when I saw Dawn I realised immediately that something was wrong. Paramedics from Leeds General Infirmary were there to transfer another baby to their specialist intensive care unit but instead they were going to take Lucy. Lucy's abdomen had become very red and swollen and one of the senior nurses had suspected that it may be Necorotising Enterocolitis (NEC). NEC is a gastrointestinal disease that mostly affects premature babies and involves infection and inflammation that causes destruction of the bowel. It is quite rare affecting only about 1% to 5% of neonatal admissions. Lucy was only a couple of weeks early and what caused it is uncertain but most likely it was damage to Lucy's bowel caused by oxygen starvation at birth. I will be forever grateful to Gill the nurse that had the conviction to insist that Lucy's case was serious enough to warrant immediate transfer to Leeds. The miracle was not only the timing of the paramedics being there just at the right time but the fact that had Lucy not got the bed at Leeds General Infirmary that day then she would not have got one at all. It was not the only time but her life was saved that day. It was the start of a very worrying time as NEC is an extremely serious disease and posed a very real threat to Lucy's life for some time after. Thanks to Leeds General Infirmary and the amazing people on the neonatal intensive care unit, Lucy survived and has no lasting bowel problems. If you watch the video again you will see the pictures of Lucy on a ventilator with her stomach red and swollen.

So although the video is sad and it is so unfair that it happened to my little girl, it reminds me that it is not just me and my little girl. This is happening every day, 24 hours a day, 365 days a year. Before I experienced it I had never spent a single second thinking about all the parents and relatives sitting in ICU units, all around the world, their own worlds being turned upside down. Now I think about it a lot and when I do it takes me right back to those first weeks and I feel for all those innocent people thrown into this awful situation just at the moment that should be the happiest of their lives. People say that you are chosen or that you are special. We are not special because we have Lucy and we were not chosen to be her parents but we are special because we coped and we continue to cope. The mother in the "Away with the fairies" from www.cafamily.org.uk video put it very well when she said "I don't want to be special, I just want to be ordinary".

26Oct07 - Now and Then

I have recently been copying and updating photos onto our new computer and in the process have had to re-look at the photos we took from May to August 2004 of Lucy's first weeks. It surprised me how much they still affect us both. I had deliberately not looked at them for at least 2 years and seeing them again just brought it all back. All the false hope, anguish, worry, fear and despair. All the machines, nurses, doctors, consultants and alien medical language that we learnt to understand. The hassle of constantly travelling from home to the hospital, never having time to eat or talk. The feeling of helplessness, knowing that whatever was going to happen was completely out of our control. Shocked faces of visitors and the sounds of other parents weeping and sometimes nurses crying when a child in their care had died. The noise of your own footsteps on the long walk to the intensive care ward and wondering what you will find when you get there. Wires, tubes, syringes, beeping machines 24 hours a day and blood stains on the tiny cot sheets. Lucy's feet like tiny pin cushions from the daily blood tests and her cries of pain when we helped to hold her while they did it. All of these memories are still as fresh as if it was yesterday. It is easy to forget or overlook the significance of the start of Lucy's life and the profound impact it had on our lives and those of our close family. It was an awful period in our lives which will be with us forever. Some of the feelings, the fears and worries, for Lucy and for ourselves have not changed since then. As soon as we were out of hospital, suddenly everything was considered to be back to normal. Baby back home, life back to normal, phew that was a close one! Nothing normal has happened since and I can't see that normal is a word that can ever be used to describe the life we have now. I can't help resenting or feeling jealous of people who have normal children, in and out of hospital in a few days. They still complain of the hardship and the life changes just like we did when we had Joshua but my sympathy has gone and I just want to shout at them and tell them that they don't know how lucky they are. I know this is wrong and unfair, it is just how I feel. I made a short video which helps me to remember how close we came to losing Lucy, what we all went through and how lucky we should feel that she is with us at all. You can watch the video by following the link on the right in the sidebar or click here Lucy May - The First Weeks.

"Lucky Lucy" was great today, in a really good mood and happy. We all went out for a pub meal and I fed Lucy while we were there. She was so exhuasted that she fell asleep on my knee and stayed that way.

She has come such a long way from her unfortunate start in life. I sometimes wonder if we have moved on as far as she has.

25Sep07 - Long Distance

I am out of touch today, haven't seen or heard how today went. It is times like these when I wish life could be just a little simpler. A nice easy 9 to 5 job, play with the kids, bathtime, bedtime, white picket fences etc, etc. Pie and sky comes to mind. I know Lucy and particularly Josh cope very well with our upside down life. We try to maintain some kind of routine and have always known how important it is. Lucy from the first day she came home has had the same routine that Josh had at the same age, a regular bath time, Dad/Mum time and bed time. Although it can be a bind at times, especially after a hard day, it is very special and I do miss it when I am away. I am sure it is no different for anybody with small children. With Josh we only had to put up with a few days/a couple of weeks before he realised what bedtime was. With Lucy it took so much longer. For months her body clock was the complete opposite to ours. I can remember being at the end of my tether one night when it was my turn to go without sleep. It was around midnight and Lucy had been crying non stop since going to bed. I had tried cuddling her, singing to her, walking round the house, lights on, lights off and nothing had worked. So I tried the old trick of putting her in the car to drive her around until she fell asleep. She was only 3 or 4 months old. I drove and drove and she cried and cried. Eventually after driving around for about 45 minutes I found myself in Huddersfield. Lucy had not stopped crying and she had cried so much that she had made herself sick. I stopped the car, got out and burst into tears. At the time I could not see an end to it, all normality had disappeared and the future was not somewhere I wanted to go. We were still trying to come to terms with the previous few weeks and the torment seemed endless. I sat on the kerb for a while until I felt stupid and then cleaned Lucy up and drove home. She never did stop crying. But, and I think it is a big but, together Dawn and I stuck with the routine. We spent long nights for some months after that listening to Lucy cry. We didn't want to treat her any differently to the way we treated Josh even though we worried that she would always be different. Eventually there were some nights when she cried herself to sleep and over time they became more frequent. Now Lucy knows when her bedtime is. She doesn't always agree and quite often complains just like any 3 year old would. In fact it makes me smile listening to her sometimes because she has learnt a few different cries. The best one is when she is crying just to get you to go and see her. It starts as a whimper and gradually gets louder and louder the more she thinks she is being ignored. As soon as you open her bedroom door or she hears you coming the crying stops. Quite often she will then talk to you in her own way either to let you know how unhappy she is or to say "I am bored, I can't go to sleep and I just want some company". She is such a character and I am sure she gets it from her brother. I missed bed time tonight. Dawn had to sort them both out so I hope they didn't cause too much mischief. I guess those early months were just something we had to get through but I wouldn't change it. Lucy has given us the strength to deal with most things that life throws at us and we now have a completely different outlook. I know I can speak for Dawn as well, we really appreciate what we have now and wouldn't turn the clocks back for anything.

15Sep07 - Memories

I have just been talking to a friend who doesn't know Lucy. He asked me what was wrong with her and we got talking about why Lucy is like she is. Looking back on those first days and weeks of Lucy's life is not something that I do too often but in a way I guess I should try to keep it fresh in my mind because it helps to put things into perspective. Lucy's birth is a blur of panic, emotion and a profound feeling of helplessness, and that will never change. The weeks that followed I would not wish on my worst enemies. What I remember most was a surreal feeling of existing in a completely alien world where there was no normality and you were told things on a daily basis that in any other situation would reduce you to an emotional wreck but somehow you just adjust. You accept bad...no terrible news as if you found out that your plane has been delayed for half an hour. You council family and friends who are not able to comprehend the seriousness of the situation with an air of calmness that is totally inappropriate. We became so used to receiving bad news that for a while it became a way of life. We accepted everything as long as we knew that Lucy wasn't going to die. At the first meeting we had with the consultant just a day or two after she was born we were told that Lucy would have some developmental problems but they put her in the"mild" category which meant she might have some physical difficulty with movement/coordination but she should be able to live a relatively normal life. How little did we know then. This in itself was hard to take because every parent wants to have a perfect child and can not bare to think of anything going wrong. We accepted this, because after all the trauma we had just been through it did not seem such a bad outcome. Of course we were upset and cried but we were strong and accepted it and looked forward to getting our little girl home. That was just the start. After a few days things got infinitely worse. As a result of the oxygen starvation that Lucy suffered (although the cause is disputed) she developed a bowel condition called Necrotizing Enterocolitis. The intestinal tissues becomes damaged due to lack of oxygen or blood flow. When feeding starts the bacteria from the food damages the tissue further and holes can develop in the intestine. This is an extremely serious, life threatening condition. So from having already come to terms with a less than perfect baby, fits, ventilators, birth trauma and the knowing looks of the neonatal staff, we suddenly, overnight had a much more serious situation on our hands. Lucy was transferred to the specialist ICU unit at Leeds Genereral Infirmary (on the day of Joshua's 7th birthday party which we missed) in an ambulance, lights, siren, everything. Lucy was a week old. In the end we stayed at Leeds General Infirmary (LGI) for weeks. It all seems like a blur now but at the time we lived ICU, doctors, consultants, neurologists, paediatricians day in day out. We watched monitors, helped with daily blood samples (Lucy's feet were like pin cushions) and all the time got regular updates of Lucy's progress or lack of it. Her abdomen was swollen and red with the infection. She was on a ventilator and a cocktail of drugs to keep her sedated. We regularly had to draw bright green bile from her stomach (some of her first cuddly toys have still got bile stains on them). The strange thing was how quickly we adapted to this totally alien environment. We just turned up every day, sat with Lucy, did what we could to help and conveyed what we could to our friends and family. I guess we always watered it down to make it easier for them to accept. On more tham one occassion people who came to visit were moved to tears by the shock of being introduced to a place that thankfully most people never have to experience. Lucy was heavily sedated, on a ventilator, had tubes all over the place and looked extremely ill. It must have been quite a shock to see such a small baby like that for the first time. We comforted them and helped them to understand what was going on but still for some it was too much to handle. There must be some kind of survival instinct that gave us the strength to detach from reality so that we could have the strength to cope during those unfortunate first weeks. I remember thinking I don't care about all this as long as I get to take her home. By the time she started having scans and the reality of Lucy's future outlook became apparent we had already been through so much that we had already accepted that life for us was going to be very different. So when we were finally told that Lucy was severely handicapped, all four limbs would be affected, she would never walk, her eyesight was likely to be impaired, it was unlikely she would talk, she had epilepsy, our feelings and emotions had been numbed to the point that it was not a massive shock. We knew at that point that she was out of danger, she was going to live and in the not too distant future we would be able to take her home. I don't know if we dealt with it in the right way but we had never had to deal with anything like this before. Maybe we we ignored our real feelings and emotions or maybe we didn't have a choice. Looking back now it doesn't seem real but I know there are people who at this moment are in that world, living the same things we were and I really feel for them. We were only one family of many but we were among the lucky ones. Not all the families we shared the ICU unit with got to take their children home.