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".