Thursday, June 28, 2007

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.

Wednesday, June 27, 2007

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.
Feel a strange mix of numbness and upset this week. I found out last night that a couple on my last course lost their baby after their homebirth. Marcelle popped round last night as they are friends of hers. Apparently the baby was born safe and well but after a little while developed breathing difficulties and died. I'm left wondering whether the baby had health problems and may have died anyway. I feel devastated for this couple as it is so cruel to have a baby taken away like that. I feel very very mixed up about it as I can't help comparing it to my own situation. Maybe their baby had a heart problem that only became life threatening after the birth. It has made me feel very fortunate that I know about my baby's heart problems, that I know there is a risk that it may die, although I pray and hope that this won't happen.

A very selfish part of me feels like maybe my baby stands a chance, their baby has died and mine can't die as well - surely? I know this isn't true and life doesn't work like that but it doesn't stop me from hoping that my baby will make it. All of this has reminded me how fragile life is and how death is an inevitable part of life, even for babies - some babies are just not meant to live, their time with us is brief.

Thursday, June 21, 2007

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.

Monday, June 18, 2007

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!


Wednesday, June 13, 2007

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

Monday, June 11, 2007

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.

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.

Tuesday, June 05, 2007

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.

Monday, June 04, 2007

Never thought I would have anything in common with Ulrika

I want to keep this to refer to, so I know I am not on my own. I've also been reading India Knight's blog about her daughter who has had to have major heart surgery. It doesn't make very pleasant reading but it is a reality I will soon have to face so it is a comfort to know about other parents who have faced the challenges of a baby having heart surgery and it can help me work towards some preparation of what to expect in hospital.

Bo and Ulrika Jonsson
My darling daughter Bo has just turned two and a half and with every glance that I throw her, without exception, I count my blessings and my luck. She invariably throws me back an awkward look filled with questions such as ‘Why are you looking at me? Or, why do you keep staring at me?’. And the truth is, I cannot stop staring at her, because it wasn’t that long ago when I thought there wouldn’t actually be a little Bo in my life.
Questions and answers The experience of having a child with a serious heart defect has been enlightening but it has also changed me profoundly. To be told at my 20 week scan that my baby had an abnormal heart was a shock. To be told after my subsequent referral that there was a chromosomal defect, which meant ‘the foetus’ would not even be ‘compatible with life’, was without doubt the greatest shock I have ever had. Grandparents had died, even my own father, but this news came out of a clear blue sky, like a twister whipping up everything in its path and throwing it back down again with an unbeatable force. Never for one moment, in the midst of all the havoc it caused, did I think ‘Why me?’. What I did think was ‘How can this be possible, when my baby has been kicking away so happily inside me?’. I simply couldn’t understand.
My body and mind switched to auto-pilot and I went about my business like a zombie, surrounded by health professionals who continued to refer to my baby as ‘the foetus’. There seemed to be a sense of urgency about the whole case and I was hurried to consider a CVS to eliminate the chromosomal link. My ‘foetus’, I was told had its hands ‘in flexion’ and its knees where knocking together. Terminology such as ‘Edward’s Syndrome’ and ‘Triosome 18’ hung heavy in an air of fear. I felt shunned and disassociated.
It was a long two-week wait for the results of the test. Unbearable. For me and all my family – and what to tell my darling, healthy six year old who waited so eagerly for mummy’s swollen tummy to become something a little more interesting? Finally the news came. My baby had no chromosomal defect – she, and yes, it was definitely a she, ONLY had a heart defect.
What now? I was going to have a baby with a broken heart. A child who would require surgery, medicine, hospital visits, a limited life and God knows what else? Was I destined now to become a woman who would campaign tirelessly for undernourished charities and would never know normal life ever again? Would I be spending my life locked indoors for fear of taking my child out? Would we never again know holidays? Laughter? Fun and creativity? Would I be locked in depression and fear forever? My fears were real and overwhelming. And there appeared to be no answers.
And then came my first ray of light. It came in the form of my referral to Guy’s Hospital’s and its gentle, personable Dr Guerleen Sharland. The second ray of light was her colleague Dr Shak Qureshi. Despite the fact that what they brought me was further complicated information it felt like stepping into a warm house after having been left standing outside in the cold for a long, long time. On hand was a counsellor who made me feel it was ok to cry and my baby was finally referred to as a ‘baby’. I felt I had come home at last.
Despite the complicated procedures they were forced to relay to me, there was optimism in their voices and kind smiles offering reassurance, but no guarantees. And that is how I ended up at Guy’s. That was just under three years ago now.
Bo has had two surgeries there (one open heart) all under the careful hand of the brilliant David Anderson and she still requires a third. It’s been a long old schlep. She’s had infections in her scar, bronchilitis, sickness and diahorrea etc, etc over these past couple of years. I have battled with my fear of her and her condition; my fear of me; my fear of others; my fear of the future and my fear of the present. But somehow I’ve been lifted. Lifted by the people around me. Most of whom I do not even know.
Before too long I received letters from members of the public who themselves were fellow mums of cardiac babies – parents and grandparents, sisters, brothers or people who had no cardiac babies but just bundles of empathy. Each and every letter made me weep with hope and sometimes with the sadness of the stories. And some letters I have yet to reply to. Then, with every hospital visit I noticed there were other parents singing the same nursery rhymes as me at their children’s bedside pre- or post-surgery. Parents and relations I had never known, but with whom I would be intrinsically linked forever, because we somehow shared the same story. I met kind nurses who understood; doctors who would listen, but were sometimes not too great at taking blood samples; and consultants who went about their business kindly as if it was just another day at the office.
I saw how cardiac defects crossed all boundaries. The posh people in the corner were no different from those who could barely afford the fare into hospital. We would all sit together by our children’s side in between dashing back to the fantastic Ronald McDonald’s house for a few hours kip. We never needed any introduction. Sometimes no words at all - an incredible understanding and sympathy and comfort passed between us. And then upon my returns from hospital, there on my door mat shone another ray of light. The ‘ECHO’. I read story after story after story. Some were outrageously similar to mine and I would stand in my kitchen and nod, or weep or smile.
So this is life. Not the life I anticipated and feared 3 years ago. But a life full of love and support; joy and laughter. I deal with Bo’s heart condition in my head on a daily basis. Sometimes when she is particularly perky it is hard to imagine she will ever need further surgery – but I know, of course, that day will come. I fear it tremendously, but have learnt to enjoy the moments I have with her and I’ve learnt something I never thought I would – to treat her like a normal child.
My Bo and our future She has such spirit. She’s stubborn, wilful, a madam, fussy, temperamental and at the best of times she thinks she’s the Queen of England. We tip-toe around her for fear of annoying her, but not for fear of breaking her. I admire her fight and spirit. I feel she will need it throughout her life and particularly during the periods she will spend in hospital. When she has a temperature, as recently as last week, I panic more than I would with my son. My head goes in a spin and I picture horrendous consequences and then I have to give myself a good slap and remember that my worrying will do her no good. I have been blessed with two wonderful children. One healthy and one not so. Both bring me fantastic qualities and I wouldn’t want to change my time with either of them at all. The possibility of a termination with Bo was unthinkable and I’m glad. It’s been unbearably hard at times. At times I have wanted to give up. But then I’m forced to go on for her sake and her brother’s and for the sake of all the other people who have gone on going on.
A third child? I don’t know. I’m supposed to stand a 1 in 50 chance of having another cardiac baby. My pregnancy with Bo was thoroughly miserable. It was punctuated by scans, test and intervention. I hated it - there was so little joy. And whilst something inside me tells me I couldn’t do it all over again – there is something inside me which tells me that perhaps next time it wouldn’t be as bad. Maybe next time things could go right. Maybe something inside me would like me to see if I can do it the right way this time. Although, I have had minor protestations from my son, on whom the Bo experience made a significant impression. He says: “Mum, I think you’re great with two kids”. So who knows? Ulrika Jonsson

Sunday, June 03, 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.