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.