Bailey's Story
posted on 12/01/2008
As Bailey's second birthday approached I sat down one evening and wrote Bailey's story. I had hoped it would help me sort out all the mixture of emotions that were going round in my head. I don't write as well as Nigel, but this is Bailey's story in my words.
Nigel and I were (and still are) in the process of adopting my niece Courtney who we've had since she was 9 months old, when I discovered I was pregnant. We were so excited about having another baby and Courtney was thrilled at the thought of having a baby brother or sister. She was six at the time and couldn't wait.
My pregnancy went well and the only problem was that I had protein in my urine but it had been there from the beginning.
When I was 26 weeks I was involved in a car accident. Thankfully no one was hurt but my mum and Nigel wanted me to go to the hospital and be checked over, 'just to be on the safe side'. When I got there they asked for a sample which they said had protein in it but I explained it always had. They done my bp and said it was a bit high, which I thought was hardly surprising having just been in an accident.They decided to do a scan and said that there was no fluid around the baby. I hadn't lost any so it was a bit confusing. They said they thought that the baby was a bit small too and they would like me to come back the next day for a more detailed scan with my consultant. I went home thinking that it was a lot of fuss and I would drink plenty of water and everything would be fine!
We went back the next day and the consultant came to do the scan. She asked a nurse to help her with the settings as she wasn't used to this type of scanner. When she done the scan she told me that the baby had lost almost all the fluid and was about 3 weeks behind in growth. She said that 'the wee baby isn't very happy in there' and should be delivered sooner rather than later. I remember thinking that the wee baby should just get used to it because we're not all happy all of the time. I think it was partly shock and partly because she's made it sound like it was having a wee huff. As she was talking, my worst fear was that they would want me to come in to the hospital for rest until about 36 weeks. She told me that I would have to be transferred to another hospital with more specialist care. I asked if that meant I'd have to go there when it was time and she just looked at me with a small smile and said that I would be going now by ambulance. I remember telling her that she couldn't keep me in as the next day was new years eve and they didn't keep you in hospital at new year when there was nothing wrong with you, and I felt fine. She just took my hand and then it started to click. I asked her when she said sooner rather than later what she meant and she said probably within the next couple of days. She told me to wait and see because the R.V.H would know better than them when they had done some tests. I reasoned that she didn't even know how to work the machine so she was probably wrong and I'd be home by evening.
The ambulance came and I was instructed to lie on my left hand side to give the baby the best chance. Another lot of fuss for no reason! When we got to the R.V.H I was taken for a detailed scan and a doppler test. When it was over they said that the baby was very small and the cord had deteriorated so badly it was at the worst level possible. It was working so badly that it was actually taking goodness from the baby at times. If the baby was left in there it would have 24/48 hours to live. That's where reality kicked in and I knew I didn't want to have a baby that I would see and touch and then it would die. I told them I'd like to go home and wait for it to die natuarally. The doctor explained that I had pre eclampsia and that if I went home it was only a matter of time until I would die too. I remember saying that that was fine but I didn't want to get to know a baby and then lose it. Poor Nigel was beside himself but I was determined. A doctor from the N.I.C.U came to see me and told me that all things taken into account they could probably give the baby a 40% chance of surviving with 'major abnormalities'. It was then that I thought that the odds were quite good and agreed to have the baby. It was decided to try and keep me until the next morning until I could get some steroids for the baby's lungs. It was the longest night and I wanted to run away but the next morning they took me for a ceserean. They said when the baby was born they'd look at his colour and breathing etc and score him. I told them if it looked like it wouldn't make it then I didn't want to see it.
At 12.42 on the 31st December 05, I was told that I had a little boy, Bailey. There was no cry as he was too tiny but I immediately started to turn around to try and catch a glimpse of him. I forgot my own rules! I could see him in the corner but he looked like a little kitten. Bailey was 500g (1lb 1oz) but had scored 7 out of 10 in his initial checks. We dared to have hope.
Bailey gave us good days and bad days. When he was 5 days old he developed meningitis and ecoli. I looked at him and wondered how a baby who was the same weight as a half a bag of sugar could possibly beat those two things together. One of those was enough to kill an adult, but two? And here was Bailey with a head the size of a big plum, looking up at us and determined to fight. Bailey fought hard and beat both infections. He then developed another that only one of the consultants had ever heard of. He beat that too. We were beginning to see that Bailey was a fighter and believed he could fight anything. Bailey caught another infection. This time it was N.E.C an infection of the bowel. I have to say that by this time I thought he was invincible and could fight anything.
Bailey deteriorated to the point where they came to us and asked us to turn his machines off but we wouldn't hear of it. Our son was a fighter and he would fight this. Two days later we went home for a few hours sleep and when we went the next morning Nigel went to speak to the doctor to tell them not to talk to me about machines being turned off. When he came back he told me that Bailey had deteriorated a lot over night and the doctors had said he was going into multi organ failure. His tissues were breaking down and as a result he had lost two of his 4 drips and they couldn't be replaced. They had said that there was a chance that either his stomach would burst open or his heart would rupture. I thought they were trying to pressure us again because they needed the bed so I went to see my son. Nothing could have prepared me for what I saw.
I took one look at Bailey and I let out a cry. I had to be helped from the room. Bailey had swollen to about three times his size and truly did look like he was going to burst. His skin had turned yellow and there were areas that had started to turn black. I could see why they were losing the drips and knew in a matter of time his other two would fail and he'd die without the morphine. Nigel and I realised that we had to let him go. If it was left to Bailey, we had no doubt that his stubbornness and determination would be his downfall. He wasn't going to let go. We talked about it and knew it had to be soon, we didn't know how long the drips would last and it was Courtney's birthday the following day. We didn't want her growing up never able to enjoy her birthday. We called for family and friends to come and meet Bailey and to say goodbye.
Courtney spent the day with Bailey holding his hand and talking to him. Bailey was dreadfully ill but spent the whole day looking at us. I begged him to close his eyes, but he was determined to see everyone. I didn't want him to look at me that day. It was too hard. I asked for 5 minutes alone with him and sang him Jesus loves me and told him how sorry I was that I couldn't help him. I asked him to close his eyes and told him he'd done enough and it was time to let go. He didn't listen though, he had people to meet.
That evening we began to notice that Bailey was flinching and the nurse said the morphine wasn't working very well. He wanted to squeeze our fingers too which he had never done. He hated being touched. As soon as I saw him in pain I knew it was time. I asked Nigel to send everyone away and as soon as everyone left they disconnected his machines. Bailey only lived for a few minutes but he lay in our arms and looked up at us. A look that will haunt me forever. I am so scared that he thought we were giving up on him. The day before his funeral a friend wrote a poem that began 'A little angel whispered, Bailey it's time to go' We didn't see an angel that night and we didn't hear the whisper but Bailey heard the call and at 9.50 he closed his eyes and took a little breath before going home. Our loss was Heaven's gain.
I didn't want to hold Bailey, I could see by his colour that he was gone. I don't remember much about leaving the hospital, I remember hearing a loud cry and then realizing it was me. I didn't want to make a scene as I knew there were parents in the unit that needed to be strong for their babies but I couldn't stand and the sobs shook my whole body. I was helped to the car and that night we left the hospital two very broken people.
Bailey had a post mortem, I had to know we had done the right thing. His entire intestines were gone. He had a piece the size of a baby finger nail. I thought that this would make it easier to live with but it doesn't.
We are very proud of Bailey and the fight he showed. We truly are proud to be called his parents. He'll be in our hearts....Always!