3 weeks ago

It's 6.30am on Monday July 30 and 3 weeks ago my waters had just broke and I was in a panic about getting to the hospital before I had my baby in front of the girls. Three weeks ago I was so excited because I was going to meet my baby and I was so full of hope that our baby could cope with everything because I didn't want to believe that he could be as ill as we thought.
It's three weeks ago since I met my little boy. I was already in love with him but meeting him was the most amazing thing. It is three weeks since I saw his face and saw myself. It is three weeks since I had three children.
Today we are collecting our son's ashes and I just don't think I can bear it.

Looking at Jamie's picture last night, I lost it. I so need my baby to hold, why don't I have my baby to hold. I held Jamie a lot after he had died but when he was alive I was only able to hold him for a few seconds after he was born. For the rest of his life he was in an incubator attached to tubes and wires. We still had some precious and special moments with Jamie but I miss him so much it hurts and my arms feel so empty.

Feeling very sad

Ever since Jamie's cremation I have cried alot. I think I cried all day on Thursday - everything from quiet sobs to loud uncontrollable sreams. I cried in the park with the girls yesterday, too many little babies. I even cried quietly in the sandpit. A baby was crawling towards me and I sat frozen in fear that it was going to touch me but it was rescused by his mum just as it reached my feet. I can't cope with babies at the moment, too much of a reminder of what I have lost.

Since Jamie died two weeks ago, Thursday was the most desperate I have felt for my boy. I wanted to hold him and have him back so much. I feel so so so angry that our baby was taken away from us. we are good people, we help other people, we don't deserve this, we don't deserve to have our baby taken away from us.
I love my boy so much and he was such an amazing and strong baby.
On Thursday I felt like I was losing my mind. I was planning another pregnancy - which I know I can never have because of the increased risk of another heart defect and my age means a higher chance of a chromosome problem. We can't go through another high risk pregnancy with the possibility of a poorly baby, it wouldn't be fair on us, the girls or the baby.
I was even thinking that we could adopt or even buy a baby - crazy idea but I felt so desperate to fill the emptiness.

I feel so angry because a year ago I longed for a third child and when I became pregnant I was so happy, I felt complete. The third child longed for had just been part of my imagination but now he has a face, a body, a name and a smell to remember and I have to imagine what could have been the rest of his life. I guess that makes me lucky, I have those things to remember, to cherish, I had my third pregnancy, I had my beloved third child.
But I feel so angry because I want my boy but I can never have him back now and I really don't know how I am going to cope with not having him for the rest of my life. At some point this has to get easier but for now forever seems like a very long time.

This week

we decided to take the girls to Lambley for a few days, we wanted them near us but we were so tired andupset it wasn't fair on them and they had the best time so it was a good decision, even though we missed them ALOT.
On Tuesday we went to see our boy again. The original plan had been to see him in the Chapel of Rest at the hospital at 7pm but the funeral directors needed to collect him in the afternoon to get him ready for his cremation. So we made our way to Go As You Please at 3pm.
We are new to all this and we really weren't prepared for see our beautiful little boy in his tiny white coffin. It really did look so small. We spent quite a while talking to Jamie and crying for him and for us. I had thought I would be able to hold Jamie again but he looked so peaceful in his coffin. It probably wouldn't have been a good idea to try to cuddle him either, his head was perfect but his body was decaying and it felt better to leave him where he looked like he was asleep.
When we were having to think about Jamie's funeral we said we didn't want to see him in his coffin but I think it was good that we did because it made it very real. Had Jamie been in a Moses Basket again I would have been distraught because he looked like he was fast asleep. Even though he was in his coffin, I was still willing him to wake up.
In his coffin we placed some things to keep him company and a copy of The Hungry Caterpillar.
We gave him lots of kisses and then it was time to go. We decided that we wanted to put the lid onto his coffin, again I think this was the right thing for us to do to try and achieve closure, reality. The plaque on his coffin read Baby Jamie Smith.


On Wednesday Jamie was cremated at 9.30am. On the way to the crematorium I heard a song on the radio which seems to fit and I'll always remember it as Jamie's song now. Not my usual choice of song - You'll Be In My Heart by Phil Collins - but it is from the Tarzan film, which I have watched with my girls and would have watched with my boy, had he lived.
We didn't want to go into the chapel but we saw Jamie's coffin, with his sunflower, being carried into the crematorium and we stood outside, crying and clinging to each other while Jamie's cremation took place.

Some crematoriums are unable to save ashes from small babies but the Bereavement Officer at The Freeman said that this crematorium has never let her down yet and it hasn't let us down either. We have some ashes, so now we can plan our final goodbye to Jamie at the end of the pier in Tynemouth.

Donations to the hospital

Many people have said they would like to make a donation to the hospital, which we will also be doing. If you would like to make a donation to honour Jamie you can send a cheque (made payable to Children's Heart Unit Fund) to:
The Children's Heart Unit Fund, The Freeman Hospital, Freeman Rd, High Heaton,
Newcastle upon Tyne, NE7 7DN.
If you state that the donation is in honour of Jamie Smith, who died on July 12th aged 3 days old, to buy equipment for the Paediatric Intensive Care Unit, the charity will ensure that the unit gets the money.

xx

tidying up

We've had a big clear out today. Anna arrived at lunchtime to take the girls for the afternoon so we decided to take lots of things to the charity shop and to the tip. All the things we were keeping for our baby - the baby toys have gone, we said an emotional goodbye to the rocking pony, which was much loved by our girls when they were very little, all their small clothes have gone (which would have gone anyway because they are all pink and girly), the small ball pool, the potty, the trike.
The cot is going to the charity shop tomorrow and we are taking the pram and car seat to the children's ward tomorrow night.
The drawers are still full of newborn baby clothes and Jamie's hospital bag is still full of clothes and nappies - I think it will be a long time before I can part with those.

And I wonder why I haven't stopped crying today. Another emotional week.

and life goes on...

Things haven't changed, everything seems to be back to normal, which is both comforting and heartbreaking.
We get up and make our tea and coffee and breakfast for the girls and now its summer we plan our day. Our girls are a blessing, they are perfect in a normal, hyperactive, driving us bonkers kind of way but sometimes when I look at them and I cuddle them I feel sad for what I have lost and for what I can never have with my boy, he will forever be a newborn baby and I can only imagine the rest.

It all seems too soon. I never imagined that I would be with the girls at the start of the summer holidays, I had prepared myself for being in hospital with Jamie for weeks/months and juggling time with the girls who would be with nanna and grandad. I really never thought Jamie would be gone so soon, or at all, I hoped he wasn't as poorly as the doctors suspected but he was much more seriously ill that anyone thought. Alice wishes she had a magic wand so she could go back in time and make Jamie alive and healthy. And so do I.

A new baby was crying in town yesterday and I cried. Such a new life, such basic needs and parents oblivious to the precious gift they have been given.
My baby was so wanted, I desperately wanted a third child, not just a baby to feed, to hold and fall in love with. I wanted a child to nurture, to watch him grow, play and develop, to play with his sisters, to make friends, to give us joy, to wind us all up, to make us laugh, to make us cry, to hold and to fall in love with.

I had my third baby, I fell in love with him, I kissed him, I held his hand, I stroked his head, I felt his soft curly hair, I felt his chest as he breathed, I tickled his feet, I saw his eyes smile at us.
But all I want to do is scream and cry because why was my baby taken away from me, why did our baby have to die.

we have survived the first week

Jamie died at 10.35pm on Thursday, July 12th - one week ago.
I miss my boy so much, I feel empty and I feel like I have lost a limb. All I have done is cry today because I wish it was so different, I wish he had been born healthy and strong and he was here with us now but I can't ever have him back, he is gone forever and I have to remember the precious times with him as positively as I can.
Grief is a strange thing. I've never experienced it before. It highs highs and lows. I am so proud of my little boy, he was so beautiful, he was so strong and he was such a fighter. I am glad we met him and I am so glad he hung on long enough to meet his mummy and daddy. During my positive moments I feel that he came when he did to meet us, it has been so much more of a positive experience because we met him, had he died inside me I am sure it would have been much more traumatic. During my bad days, I question whether I did anything wrong and would he have survived surgery had he been bigger and born later - I had no say in this of course but I guess I will always have questions.
We are also experiencing plenty of up times - thanks to the girls and to each other - but I wonder whether we are exhausting ourselves by keeping busy and are we going to crash at some point. Only time will tell. But we are determined that our family will be stronger because of Jamie - we will value the girls and each other much more, there has to be a reason for all of this.

Jamie is due to be cremated next Wednesday. We have chosen not to have a service as we can't cope with 'performing' in public and we certainly can't cope with seeing a tiny coffin. Jamie's ashes will be returned to us and we will have our own goodbye with the girls by scattering his ashes and throwing sunflowers from the pier in Tynemouth at sunrise. I'm sure many people would have attended a service, to show their support for us, but Jamie was so little and we need to keep this to ourselves.

And now I need to cuddle my husband.

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.