An emotional pregnancy diary

I was blogging before blogging was as popular as it is today –  it was my lifeline when my third pregnancy became an emotional rollercoaster. This is an emotional pregnancy diary, it is raw because I needed to pour everything out on to the page to stay sane but it might be a worthwhile read for any parent who is expecting a poorly baby, for any parent who is on that medical rollercoaster, for any parent who has to cling to hope that their baby will be ok.

 

 

April 2007

Under a cloud

We went for our 20 week scan 3 weeks ago and, ever since, it has been fairly hard to keep positive about my pregnancy. The sonographer had trouble finding the baby’s stomach. For my second scan the sonographer thought she saw it filling up but it wasn’t there for my 3rd scan, which was last Monday. We were then informed that we were being referred to Fetal Medicine at the RVI. I think I cried for 2 days, horrible uncontrollable, hysterical crying – so scared for my baby, so scared for the effect all of this could have on my family.
After spending the afternoon at Fetal Medicine on Wednesday, I was scanned 3 times. Dr Sturgiss did find the stomach but he said it was smaller than he would expect at 23 weeks. But he did say that it could turn out to be absolutely nothing, especially as at the moment I don’t have any extra amniotic fluid. He did also remind us that it could be a sign of Downs.
I felt so positive after the scans as Dr Stugiss is an amazing consultant – calm, honest and caring – he didn’t tell us what to do, he is happy to be led by us. He didn’t use words like should, must, will. Instead he gave us choice and information. I’m heading back there in 3 weeks to be scanned again. It looks like I’ll be closely monitored until the baby is born now and I’ll probably have baby at the RVI, which I’m fine about.
Thursday was a low day. I found it hard to be positive about the situation – I felt guilty for wanting a 3rd baby when it could have a huge impact on the kids, I was panicking about having a sick or disabled child and I think I decided that a termination would be the only thing I could do as I have 1 week left to have one. But when I spoke to Gary about it he reminded me that it is what I want and that I would be making a decision to end the pain I am feeling in now and that I would have to live with the pain of having a termination for the rest of my life. He also reminded me that we don’t actually know if anything is wrong with our baby, the doctors just can’t confirm that everything is right. So I feel more positive now, although I imagine it will be a constant rollercoaster of emotions, and I’m concentrating on thinking positively until my next scan and enjoying my baby’s kicks until I have to re-evaluate. Hopefully this will never happen!

one for sorrow?

Now I’m not superstitous, although my mother is so I’ve been raised listening to lots of crap about black cats, cracks on the pavement, etc, etc. On Thursday and on Friday I say one magpie and not just flying about, on each occasion the bird just sat on a wall and waited for me to pass and there was no other magpie in sight. Is this bad luck, did the birds just sense my sorrow or am I just going completely mad? I fear it’s the latter but then that’s been happening for a long, long time!

Last week was a particularly crap week. On Wednesday we went back to see Dr Sturgiss. I had my scan and baby was in an awkward position – again – so couldn’t see the stomach properly and the left side of the heart is smaller than the right. Cue loads of tears from me, thoughts that my baby is going to die, no sleep and lots of stress. We went back on Thursday to see a heart specialist. I was scanned again, this time by Dr Moran and also in the room was a Paeds consultant and a docotor from the Freeman, where they do transplants!! I did hear the Paeds duy say that he couldn’t really see a problem and when we saw Dr Moran afterwards he confirmed that they couldn’t really see a problem with the heart. Yes the left is slightly smaller but marginally so, and the heart was working normally. He wants me to go back this week for a final scan to check the heart in an attempt to completely rule out a problem with the heart as they couldn’t see one of the valves on Thursday. I will have this scan but then no more, unless I am worried about anything. I really need to feel positive about the rest of my pregnancy and about the chance of my baby being ok and having regularly scans is making me stressed. I started having panic attacks last week – which would have been awful but I know how to control them through my breathing. I feel like I’m quite calm on the outside but on the inside of my head is The Scream and it’s running up and down desperate for help.

Baby is very active today – which is lovely. I need to cling to the hope that he or she is going to be fine cause if I lose that I don’t think I’ll be able to stay positive in July when I need all my strength for the birth and for coping with a new baby, who may be poorly. And the doctors can’t actually tell us whether there is anything wrong with our baby, they just can’t confirm that everything is all right.

definitely for sorrow

Our baby has a serious heart defect which is life-threatening. We’re devastated. Finding it hard to cling to any hope at the moment. All I wanted was another child and now I have all this pain which is so hard to cope with. Someone please knock me out and wake me up when it is all over cause this is just too hard.

a little hope

I feel like I can have a little bit if hope again. The amnio results are back in as normal, which is such a relief as I really did expect an chromosome problem after the gloom of the last few weeks. My beautiful strong baby does not have a life-threatening chromosome problem. I made it through the weekend by being the kids, they really are the best distraction, but by last night I was tense, stressed and very emotional and it really hit me that we might not get a baby to bring home. I’ve spent most of the day in tears, expecting the worse from the results but Edwards and Patau syndrome has now been ruled out.We know just have to hope that this baby is strong enough to cope with the heart defect and pray it doesn’t get any worse so it is strong enough to cope with surgery when it is born.

I feel drained and very tired. I can’t help feeling that interventions such as scans just add to the stress in pregnancy and I would have been happily enjoying my pregnancy at this point had I not had any scans. As it is I feel very drained and our long journey has barely started. Me & Gary need to make sure we make time for each other to listen and support each other and just to be together, otherwise this is just going to be too hard.

I’m absolutely amazed by the support from people and I feel happy that the kids will be kept entertained and looked after should we need to be in hospital for any length of time, and hopefully they can get through this relatively unscathed!

This is the hardest thing I have had to face in my life but I am still eternally grateful to my 2 beautiful children and my amazing husband for keeping me going. I am determined to take it one step at a time and accept that there are going to be more lows on the way but, hopefully, we’ll make it through the other end.


May 2007

regrets, I don’t do these as a rule but…

I can’t help thinking that if I didn’t desire another baby so much I wouldn’t be feeling all this pain right now. I would be being a mother to my gorgeous girls, planning weekends away with my husband and working on building up my business, which has now ground to a halt.
BUT then my baby kicks and I feel so happy to have him/her – it was a very much wanted baby and I need to give it all the chances I can to be healthy. I don’t regret this pregnancy at all, I have been very happy, even with all the anguish over the last 2 months. It is only since last Thursday that I have been feeling so very low, and I’m not in control of that. I can’t shift it.I play with my girls, I cuddle my girls, I kiss my girls and I feel lucky and happy that I have them but I also feel so sad that I really might not get the chance to do all of that with this baby, this baby may never know how much we love it and how much we wanted it and it may never know its amazing sisters and that fills me with so much unbelievable sadness.

If someone could take away this pain that is stripping me of any hope, if someone can make me feel numb please do it now because this is just too hard and I really don’t know how much of this I can cope with. I want to sleep for 2 months, I want to hold my children and never let go, I dont ever want to feel this pain again. Actually I want to zoom forward in time by 2 years when the pain and anguish will be over and I can get on with my life with my family. I want to look at my husband and not see the pain in his eyes. I want my baby to live.

My pregnancy

I’m huuuge, I have a lovely big bump which I love and I realised today that it is big and I definitely feel pregnant now!!
In all probability this will be my last pregnancy and I wanted to write more about it but, due to all the anxiety about the baby, the joy of this pregnancy has been overlooked. So I want to write this for my baby.

Thank you for being there, thank you for being made. My desire for another child was very strong, I don’t know where the desire cam from but it was there and I know I wanted a chance to have another child, to add to the 2 amazing children I already have. You were conceived after 3 months of trying and I was so so so happy. I suspected I was pregnant when, on the walk home from school with the girls, the exhaust fumes were so strong and I remembered that from being pregnant with the girls. I tested the next morning, and the next and the next…

Apart from the concerns about you, this pregnancy has been so easy physically. I haven’t been particularly tired, I haven’t had headaches or mood swings – in fact I’ve felt really calm and happy. I felt and was sick until about 19 weeks – lots of retching and rushing for a loo or a bin. In the end the girls found it very funny to watch mummy be sick down a drain on the school run or using the bin in the living room because I couldn’t make it to the loo.

I felt you moving early, flutterings from 11 weeks and kicks when I put my hand on my tummy from about 20 weeks. Now I’m in 29th week and I love your movements and kicks. You have hated most of the scans and kicked ferociously at the sonographers and consultants when they pressed on my tummy. I love it when you wriggle, when I can feel you legs stretching out.
This week has been the best, I can feel your head near my pubic bone like a ball moving around. I had despeately wanted to feel that again and it has made me so happy. I feel great, I have a fair bit of energy, my back and pelvis doesn’t hurt (I am mobile!!!!) and I feel content knowing you are there growing inside me.

Despite all the anxiety, stress and tears, you have made me so very happy and that is why I don’t regret making you. You may not be here yet but you have added something to my life that wasn’t there before. I have learnt so much about myself, I am more patient with the girls and I feel much much closer to Gary.

I have to believe you can survive because you were made with love, you are loved and I have so much to thank you for.

Beautiful baby

We had another scan yesterday – baby growing well, very active, heart doesn’t appear to be any worse – and we saw baby’s face. So so amazing, we could make out its little features and it looks so much like our girls. Gary thinks baby is a girl. I said we could ask but he wants to wait. Patience is not my strongest virtue but I guess I can wait a few more weeks to find out if I have made a girl or a boy.
I feel quite positive about it all at the moment, although desperately hoping that our hopes don’t get smashed at the next scan. I asked about the birth and, at this stage, there is no reason not to have a vaginal birth, especially as I have already had 2 straightforward births. Atleast I can feel normal again – afterall I am having a physically good pregnancy, now I can prepare for the birth the way I would normally do. It will be so different being in hospital that I need to get my head round it but I know I can do it. I just need to talk to the consultants about my labour not being treated as high risk as I would like to be as active as possible and I’d love to use water again. I can’t really imagine doing it without being in water. As long as baby stays well and I don’t go into labour before 37 weeks, I will aim to treat labour as normal as possible – it’s only after the birth that baby needs to be closely monitored and tested.
We’ve got a few weeks to go yet though, so we need to hope and pray that the heart doesn’t get any worse and that we have a chance of a healthy baby. But for now, I am concentrating on staying calm and stress-free, planning alice’s party and preparing for the birth of my baby.

more good news…

we’ve had the final results back from the amnio 3 weeks ago – all clear. I know we agreed to the amnio, and at the time it was something we wanted done because of the diagnosis of the heart problem but I really do feel like we’ve been through the medical mill. My hope and dream at the moment is that when the baby is born they find no atresia and only a minor heart problem, as at this stage the doctors admit they can’t really say how serious the heart condition – it could be very serious or it could be remain stable and be fixed over time. I may be deluding myself with this but I have to believe that I will be bringing my baby home.

The best I can do at the moment is try to relax as much as possible, stay as stress-free and rested as I can to give my baby the best chance it has of being able to grow big and strong. I feel sad that I’m no longer working but I know it’s for the best and I have to do everything I can to benefit my baby.

Now I just have to plan for a birth in hospital. It is unlikely I’ll be able to use the pool and I’m pretty sure they will want me to have CEFM which means I can’t use a TENS machine but I hope to be able to get answers to these questions in the next few weeks so I can prepare properly for the birth

Alice: mum, you know how you have a big belly cause you have a baby growing in there
Me: yeeeeees
Alice: but why is your bum getting bigger as well
Me: speechlessand here was me thinking I hadn’t put on much weight with this baby – I’m obviously in complete denial

I’m still in a pretty shitty mood. Actually I think I’m a bit depressed, I have very little patience (just ask the kids, Gary, the cat…) and all I really want to do is hide in my bedroom and watch crappy TV until this is all over. This, of course, I can’t do – I have 2 children and a husband to look after and spend time with. All of this is not helped by the fact that I am so so tired, I wake in the morning as tired as I was the night before and the house always needs tidying, it’s like the Forth bridge, there is always somethign to tidy. And if I leave the house I have to speak to people and pretend that everything is ok, when is really really isn’t. I endure jokes about the size of my bump (which I adore but I wish everyone would stop going on about and let me enjoy it) and questions about whether I am ok ( I am usually very British in my response and say that I am fine when infact I cry everyday and the rest of the time feel so completely numb it scares me).
Yes I am definitely not my usual happy self.And I’ve been thinking about postponing all return visits to the hospital for a month. Obviously I will go back if I feel that I have started to get loads of extra fluid but, until that happens, I think I need to stay out of the hospital. I want to try to enjoy the last few weeks of my pregnancy and not worry that it is all going wrong. I want to try to connect more with my baby and trust my instincts, rather than trusting the medical theories and scans. Gary is a little worried about this but I won’t do anything to put my baby in any more danger, I just need to connect with my baby, stay as positive and stress free as I can and get my head round the birth, which needs to take place in hospital. I’ll call the hospital later this week and take it from there.

Hopefully I can shake this very shitty mood by next week, which is half term and get out and about with my girls. And I need to get my eyesbrows waxed, better do it quick incase that is my key to a good mood!

Something that has been on my mind as well is whether I can do all of this again. If my baby doesnt make it, do I want to try again for a third child, or will I accept that I have had my third child but he or she died. This has been the most fantastic pregnancy (apart from the emotional stress) I feel good, I am mobile (when I thought I might be on crutches by now) and I would have been able to continue as normal, if it wasn’t for the emotional stress. I need to celebrate it, take loads of pictures of my bump and write more about my pregnancy, my baby.
But could I do it all again? I don’t think I could. If this has the worst outcome, I think I have to celebrate my baby but focus my energy on my family – on my girls and on my husband and continue to make a good life for us. My girls mean so much to me that I think I could move on and focus on having ‘bigger’ children and not miss the baby stuff so much. we will get through this but, at the moment, the tunnel seems so long and dark it is hard to imagine an end.


June 2007

another week another scan

I was so dreading this scan, i really didn’t want to go at all and as a consequence got myself all stressed out and had the headache from hell for 2 days before hand. But I am so glad we did go. It looks like the heart is still stable, baby is growing and is very active and we had a lovely scan. The Dr pointed out that our baby has hair, which was amazing and we got to look at the baby’s face again – what a beautiful little thing it is. I have more fluid but it is still within the boundaries of normal and, as my tummy is still soft, the Dr was happy and didn’t want to reduce the fluid. So we are back in another fortnight to check fluid levels again but to see Dr Moran again to have a closer look at the heart.It was another good hospital trip and I cam away feeling very positive and quite happy. I just hope and hope and hope that this amazing baby can cope with all of this and fight, fight, fight. We are still clinging to the hope that the stomach problem dosn’t exist and that the heart problem isn’t as bad as they think.

And my bump truly is enormous – I look like I am ready to have the baby tomorrow, let alone 6-8 weeks time.
So my aim now is to stay as calm and positive as I can – for everyone’s sanity and to encourage my baby to grow well – and to get organised for Alice and Gary’s birthdays.
And we’re seeing Sister Walsh from the Freeman tomorrow to find out more about the heart unit and what we can expect from the care there. The one piece of silver lining about all of this is that the Freeman is about 15 minutes away so toing and froing from there is very do-able. Some families are hours apart and the mums don’t get to see their older children from weeks. I’m so lucky that I won’t have that because that would make all of this just so much harder and i just don’t think i could cope. I have no idea what July and August holds for us yet but I know it won’t be easy, it just has to be as nice as possible for the girls and we’ll just have to make it up as we go along.

For the first time in this pregnancy I feel real regret and I feel selfish for wanting another child, not for the pain me and Gary are feeling – we’re adults and we’ll deal with it somehow – but for the girls and for this amazing baby, kicking away inside me now. How much pain will my baby have to endure on the long journey to fix his or her heart? It has such a long and hard fight ahead, I truly hope it is up for the battle.

some days…

I feel like I could cope if my baby dies. Our life won’t be empty, we’ll have each other and we’ll have our two amazing girls to keep us busy and happy. People lose babies everyday, of course I’ll cope.

But on other days I wonder how I’ll cope, how will I manage to get up every day, how will I manage to look at my friend’s babies and not think of what I have lost and I worry that I will spend the rest of my life mourning for the baby I lost.

I’m in my 34th week (how did that happen?!!)

I love my enormous bump – it’s big and round and beautiful ( as well as uncomfy sometimes as well but I won’t dwell on that!)
I love the way my belly is lop-sided, as you favour the left side.
I love the way you stretch out, so I can feel your arms and legs and your bump rolling about at the top of my bump
I love the way I can feel your head turning against my pubic bone
I love the way my belly goes hard as it gets ready for regular Braxton Hicks and then labour.

Being heavily pregnant is tiring and, at times, not very comfortable and I can’t walk too far because I get so tired and uncomfortable but I am loving it. I never thought I would experience this again and I feel very blessed that I am pregnant again, that I have had the chance to bind with my third child, to feel him or her grow inside me and to wonder whether I have a son or a daughter.

My biggest fear when thinking about trying for a third baby was whether we were tempting fate after havign 2 healthy children. I decided then that I don’t shy away from things because of fear of because they might be hard or challenging. I think I underestimated that and I feel incredible guilt over what the girls and the baby may experience over the next few weeks and months BUT I love this baby and, yes, it has been incredibly emotional but I feel blessed, I have been on a journey, I have made another beloved child and I have been so very very happy.

I cried in Mothercare today, among the small socks and sleepsuits

being on the medical rollercoaster

It’s a strange thing, seeing consultants every 2 weeks to try to work out how seriously ill your baby is. There’s lots of guesswork and words like if, possible and may, while we – the parents – are left to analyse all of this and cope with the question – is our baby going to die?
Sine we were referred to Fetal Medicine at 22 weeks we have been told our baby’s heart is fine, then it wasn’t fine, we were told our baby could have a serious chromosome problem which would mean it wouldn’t live – so we had an amnio and baby got the all clear – we were told out baby wouldn’t grow very well – so far it is doing brilliantly and its estimated weight is almost 5lbs at 34 weeks. We were also told I would probably have too much amniotic fluid because of the potential stomach problem. In the last 2 scans my amniotic fluid has been high but still normal and I think this is just how I make my babies, this pregnancy is no different. This week my fluid level has actually gone down, but not down as much as they would expect whicih leaves me wanting to scream BUT IT’S GONE DOWN!! Surely if I had a serious fluid problem the level would be increasing not going DOWN????????

With each scan, since they told us about the heart problem about 2 months ago we have been waiting for the left side of the heart to deteriorate but it hasn’t. The consultants were pleased this week to see that the left side of the heart is doing well.

I’m not criticising any of the consultants with any of this rant – they are fantastic and they are just doing their job but, at times, it has been so hard. To the consultants we are just another couple with a potential poorly baby, they do their scans, make their comments but we are left to cope with the reality of our situation.

As I’m 35 weeks now the consultants agree that they can’t really tell us anymore – although I’m sure we will have more scans before the birth – and that I need to focus on the birth because the true diagnosis of the baby’s condition can’t be given until he or she is here. So we’re back at he hospital next week to talk through the birth, what happens afterwards regarding testing the baby and how do we keep some control and understanding of everything.

Induction at 39 weeks has been suggested which I will not be having. I’m confident that my body can do this by itself, I’ve never had any problems before and I’ve never reached 40 weeks before. And I don’t understand why the need to induce when the baby needs to be as big as possible to cope with surgery. The conversation involved lots of ifs, possiblys and mays so, in my eyes, it’s open to discussion!

note to self…

…when I get broody again (as I inevitably will) remember how hard it is at the end, especially when I have other children to look after!! I have the most beautiful big baby belly but I am soooo uncomfortable now, it hurts if I walk for too long, I can’t get comfy at night, I have constant heartburn, I can’t bend over, I’m short-tempered and all I want to do is sleeeeeeeeppppp. I think I can safely say this will be my last pregnancy, it’s been a great adventure but the last couple of weeks have been so hard and I think I’m too old to do this again.
And there ends my positive advert for pregnancy.

cardiac unit

We visited the cardiac unit at the Freeman on Monday. I am very glad we went but it was so upsetting seeing babies and young children hooked up to different monitors and tubes and knowing that my baby could be one of them in a few weeks time.

The Children’s Ward is small, the baby bay has about 4 cots with comfy chairs for parents to be with their baby. Parents are encouraged to do normal things with their babies – hold, cuddle, play and feed which is a relief. There are also different bays where parents can stay overnight and it looks like babies can stay in their with parents if they are not too poorly. When we find out the true health status of our baby we can find out more about co-sleeping and breastfeeding.
The staff seem very good and human.

The intensive care unit wasn’t as scary as I thought it would be – it is bright and open plan so you can see all the children in there. It is very noisy with lots of staff – each child has its own nurse – and machines buzzing and alarming all the time. We spoke to the head of the the ward, who was lovely, and she said that she encourages parents to take breaks, to sleep, to eat and to see their older children because there will always be someone with the baby and parents get too exhausted to cope. I guess we’ll find out in a few short weeks how well we will cope with all of this. Hopefully our baby will be strong enough to go straight to the children’s ward rather than intensive care. It looks like one of us will be there at night and, depending on whether I can breastfeed, it will probably be me most of the time so hopefully we can develop a routine of seeing the kids during the day and evening.
It seems so strange to write about a future only a few weeks away and not know what I am going to be doing, or capable of doing. The highlight of visiting the unit was seeing how busy it is, we are not on our own, there are plenty of other parents going through the same, or worse, than us and it has reinforced what the cardiac team are capable of doing everyday. It all comes doen to whether our precious baby has the strength to cope with the battle it faces.

I’m 36 weeks tomorrow and I really don’t think I will have to worry about being induced at any point. I’m starting to get lots of ‘twinges’ – backache and braxton hicks. Hopefully it means baby is coming in a couple of weeks – no sooner please, I have 2 birthdays to do!
It definitely feels like my body is getting ready for birth – which is exciting and terrifying at the same time. But it is helping me to think that my body can do this again, it will remember what to do and it doesn’t matter whether I am in hospital.

July 2007

Jamie 014

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.

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.

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.

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.

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.

This week

we decided to take the girls to Lambley for a few days, we wanted them near us but we were so tired and upset 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.

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.

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

Jamie’s ashes

Jamie’s ashes are in a tiny urn inside a sunflower vase. The first night we bought them home I cuddled them all night – and I did that on a few other nights as well – or they sat next to my bed. I couldn’t take the urn out of its little box because the sight of the small urn upset me but a week or so ago I took the urn out of its box and looking at it didnt make me cry.

Tomorrow morning at sunrise we plan on going to the end of the pier in Tynemouth to scatter Jamie’s ashes. It feels right to do it now. I had thought I would hold onto Jamie’s ashes for a while longer because it is him and I wanted him in his house with his family but I’ve reached a point now where I can accept that its not really him, he has gone but he will be in our memories and in our hearts forever. I needed to have his ashes at home but I don’t think I can start to get better until we have scattered his ashes and I think Alice might need to do it as well.

We never bought Jamie home, when he was alive or after he had died, so it gave me a sense of peace to bring his ashes home but we need to set his ashes free now.

I wrote the blog for two more years, if you want to read more you can find it here
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Janine Rudin | Birth & Baby
About Janine 560 Articles
I am an antenatal teacher, doula, baby massage instructor, postnatal educator, life coach, writer, mum, wife, friend and, sometimes, just me. As an experienced and qualified practitioner, I specialise in pregnancy, birth and early parenting - my aim is to listen, inform, support and reassure when needed. I have worked with parents since 2002 and I set up Birth, Baby & Family in 2011 to provide good information, a different perspective and links to the best products and services for families. I set up the Birth, Baby & Family Centre in 2014 to provide a welcoming, friendly and supportive space for parents across Tyneside.

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