My boy Jamie

Jamie was born at 12.30pm on Monday, 9th July. He looked so strong and healthy when we was first here. His Apgars were 9 at 1 minute and 10 at 5 minutes, he cried healthily and the paediatrician was amazed Jamie looked so well. He did have an osoephagheal atresia and the surgeons operated that night. At 2am the surgeons told us the operation had not been a success, they were not able to sew together the two pieces of tube as the stitches kept coming apart. They would try again in 8 weeks time and Jamie was to stay in ITU for that time.
The heart scan was the next day which didn't look good, Jamie's heart was deteriorating and he needed to be transferred to the Freeman that night. I think I knew then that he was going to die, he just seemed so small and so poorly and I knew we would need some kind of miracle.
As my boy was prepared for transfer, he was sedated but he was still awake, looking at us quite happily from inside his incubator.
By midnight he was settled and stable at the Freeman. Another scan was done and the consultant made some better measurements. He believed Jamie's heart wasn't as bad as initially thought, that the left side would grow to match the right but they needed to fix an artery which was too narrow and which they needed to do within a couple of days to keep Jamie alive.
Atleast this gave us a little hope.
On Wednesday we saw Jamie for a little while, he was fast asleep because of the drugs so we came home to see the girls, who we hadn't seen since we rushed out of the house on Monday morning when I was in labour. I so needed their cuddles.
We took the girls to see Jamie. Lucy didn't really undertstand but Alice was pleased to meet her brother and she asked lots of great questions about all the equipment Jamie was attached to. She kissed him and stroked his arm and his fantastic head of hair.
That afternoon me and Gary spent some really precious time with Jamie, thanks to Kaye the amazing nurse looking after Jamie. We sat and talked to him, we washed his face, made sure his dry mouth had some moisture and we washed his beautiful hair. That time was so precious.

We arrived back at the hospital early the next morning to spend some time with him before surgery and I am so so glad we did this. Again it was such precious time and it will stay with us forever. Again we talked to him and kissed him and stroked his hair. While at The Freeman Jamie had been asleep but on Thursday morning he woke up, he had a look about, he stared at his mummy and daddy and blew some bubbles. He had very ticklish feet and, at one point, it looked like he smiled - obviously it wasn't a real smile but atleast he can remember him looking happy. Shortly after that the anaesthetists were there to prep Jamie for theatre so we said our goodbyes, we kissed our boy, told him we loved him and that we would see him later.

Surgery was only supposed to last for a couple of hours, but it turned into the longest day of our lives. We had a call in the afternoon to say that Jamie had been put onto heart bypass as he wasn't coping well with surgery. We couldn't cope after this and spent the afternoon crying and worrying for our boy. By 6 o'clock we had a call to say that it wasn't looking good and we needed to prepare ourselves for Jamie dying. We headed to the hospital to be told that Jamie was still fighting but he was bleeding heavily and other internal organs had now been damaged.
The surgeon didn't want to give up and wanted to get Jamie onto life support. I didn't understand why at the time, I just kept saying that I thought it was better to let him go. Kaye understood what we were saying. Looking back now I think they were trying to do this for us, so we could see our boy alive one last time. Eventually - probably after about 2 hours - Kaye came back in and asked us if we wanted to surgical team to stop. We did. We wanted Jamie to be in peace now.
The surgeon came in and said they had all tried everything to keep Jamie alive but his body just wasn't strong enough to do. Again he said that when he was stitching, Jamie's organs just couldn't hold together which has left us thinking there was something else the matter with Jamie that was mcuh more serious than we ever thought. He did managed to make the repairs to Jamie's heart but it was tougher than he expected because he couldn't stitch the tissue and when they tried to get Jamie off by-pass Jamie's body just couldn't cope and that was when he started to bleed a great deal and other organs became damaged.
It probably sounds strange but it was a relief to find out that Jamie had gone that night - his pain was over and he was now at peace. Our hearts were breaking but Jamie couldn't continue and he fought as long as he could.
We asked whether we wanted to see him alive one last time but we didn't want to see him on the operating table we wanted to remember him awake that morning. Kaye wrapped Jamie up for us and and we sat with his for a while, we got to have our cuddles - I hadn't held him since he was born and I had been longing for cuddles all week - and more kisses and time to say our goodbyes and our love yous. The rest of the night is a blur, I can't remember leaving the hospital, getting home, going to bed.

I do remember going for a walk with Gary on the beach at about 5am. It was a beautiful calm morning, the sea sounded perfect lapping onto the beach, the sun was just coming up and it was so quiet. We held onto each other and cried on the beach to try to come to terms with what happened.

We headed over to see the girls at about 7. Lucy didn't understand but Alice was so upset, it really shocked us as to how much she cried but she is an emotional creature and atleast she could express her grief and ask questions rather than hold it all in. She seems quite confused and angry now, she doesn't understand how a baby can die and she seems to want to blame someone, which is all probably very normal. Over the last couple of days she has made some inappropriate comments as well, as if she needs to invoke a reaction from us and others about Jamie and our sadness. Again I think this is probably healthy for her to try to understand what has happened and to try to understand our grief.
We were going to leave the girls at Lambley for the weekend but after Graham and Joyce took the girls out for the afternoon on Friday to give us a chance to rest, all we did was follow each other about the house, lost and crying so we decided to being the girls home, to try to get back some normality. we decided that they needed to see us crying and it was healthy to do so. I'm glad to have them home as they are a great distraction.

I love and miss my boy Jamie so much and I so so so wish he was here healthy and happy with the family who love him but he was so poorly and I get some comfort from that - he died for a reason, not by accident or neglect or by something mysterious, his body was jst too fragile to live.

Annie has helped me cope by saying that Jamie was determined to meet his family and I get a great deal of comfort from that. Jamie was so poorly that I'm sure he could have died while I was pregnant, the consultants in fetal medicine were always surprised as to how well he was doing. I got to give birth to a beautiful baby and we got to spend some very precious time with him before he died. we have to be grateful for that. It is still so early in our grief but hopefully we can continue to take some comfort from this and to concentrate on and enjoy our girls and make their life a happy and fun one.

I always wanted 3 children and nowI have 3 children, but one of them is now an angel who is at peace. Alice has asked us whether we will have another baby but despite however much we desire another baby, it wouldn't be Jamie and he can't be replaced and me and Gary can't go through this again. It was been an emotional pregnancy and the last week has, at times, felt like being in hell. I couldn't do it again.
I don't regret any of it for a second though, I loved being pregnant with Jamie, he made me happy and I feel blessed to have had him, even for such a short time. He was so beautiful and he was a fighter, he battled as long as he could and we will always be grateful for that.

At time when I was pregnant I questioned whether I was happy knowing our baby was ill but now I am so glad I did know. I think the shock at his illness and death would have been too much to bear. If we had thought we had a healthy baby who then died within days, it would have been too much. Jamie's death is incredibly hard to cope with and we have a very long way to go to come to terms with it but I think we were both prepared to some extent, we knew he was poorly and we knew there was a huge chance he might not make it. We filled ourselves with hope - we had to - and dreamed he would make it but in the end he was too poorly and we both feel it was better for him to have gone now, rather than face longterm serious ill health, attached to drips and machines for months and months.

I feel angry that I couldn't make a healthy baby, that I have somehow let Jamie down. In my heart I know that isn't true but my grief is making me question everything. I miss my little boy so much but I have the comfort of having Alice and Lucy and I can only hope that this pain eases eventually because our boy is never coming back and we have to remember those special precious times of his movements in my tummy and being with him when he was alive.