support thread for women who have chosen to terminate

[busierbee]

Hello
Busier Bee here - I felt that before I went to bed I wanted to open up officially a new place for weary travellers of those on the road that we have chosen to rest our heads, muse, sob, moan and support each other.
Also the kind, compassionate souls who have not been there but who offer their support and lend an ear and pass a gentle word.
We have chosen to be here and we are here and we are not alone.
Thank you so much all of you -for I personally do not know where I would have been in the last few weeks without you all.
Night - sleep well
kisses and thoughts
BB xx

P.S. Forgot mine on a very regular basis too.

Yes - think we could quite easily all obsess about the amount of alcohol we consume! Quite easily indeed.
God the thing is I just need something to hold onto - to help me try and try again. I do not care really if it is a load of old hokum or hogwash.
I just need some whys and wherefores. Made up by scientists to get a PHd? (this is what my Used to Be Lovely Man said tonight - when I have spent most of the day in a cloud of folic acid obsession).If I decided to try again and did not try the 5mg of FA and then had a Ds pregnancy; can you imagine the self loathing?
Am getting all cross again after my day of feeling more hopeful. I guess this is the journey- hopeful, hopes dashed, anger.
The cycle goes on.
Am off to bath for a cry

Oh Bee.

Bee, no harm in trying it anyway. You do whatever you need. And even if it doesn't help medically, sometimes just thinking you are doing something concrete to help, makes one feel more 'in charge' of things that otherwise seem so out of control. I felt this about reflexology and getting pregnant. I'm sure it helped, but maybe in a placebo way where I thought, 'oh, this will help,' and then relaxed.
So, get it and take it.
xxx

Bee

The rollercoaster feels like it's never going to stop doesn't it......

Let me know what your GP says about 5mg FA, as I said my poo pooed the idea.

Hope your bath relaxed you slightly

..and always rememeber a GP is not a specialist. Unless the knowledge is general they wouldn't/couldn't know it.

Maybe anyone with a consultant could ask them their opinion? An email or conversation with them would be good. A fetal medicine bod would know.

Marj - your poo pooed the idea - what an articulate poo you have.
Bath did not happen in end - got distracted and tears sucked back in.Thank you Lins.
GP will not have a clue -even consultants do not seem to know about it much from my experience. I will be Mrs Popeye.
Finally off to bath - the rollercoaster continues as you say Marjie.

LOL, sometimes the brain needs to catch up with the touch typing....

Hi All
Folic acid - I think I took it from beginning of cycle with all my pregnancies - possibly a bit hapharzadly till had a positive... but spurred on by all this chat will dig it out of the cupboard again tomorrow and add it to the drug cocktail I am consuming at the mo!
Becaroo - thanks for your +vity re the trying again after all the heartache - for me it really is sth that just won't go away so we will start trying again and soon I hope - just need to wait for this infection to go away... MInd you had hoped for a month of guilt free glasses of wine before starting again... ho hum - I think will just have to see how the mood takes us in this next cycle...
And JJF - I can only reiterate what bbee said - it must be agonising... Everyone is so loving and caring and supportive here - I really hope we can all celebrate with you with good news soon... but if it's not, we'll be here to catch your fall as much as an internet forum can... Bbee mentioned our situation - a v rare genetic problem with a guestimate of 1 in 10 chance of happening again.. we are determined to keep trying for a sibling for DS - we may have to make that painful decision again - simpler for us though as it is a lethal condition... But here you find a place where reasons for termination aren't judged - everyone has their own reasons for making their decision which are particular to them and their family... I v much hope it is a decision you don't have to make, but there are lots of people here who understand the pain if you do... and it can be so hard to talk about it in RL...
Back to other pregnancy risks someone I know has her babies privately in London, and her v highly regarded consultant says the only food to really avoid in pregnancy is mould ripened cheese. Everything else in moderation is fine... Everywhere you look there is a different theory... I'm like Linspins - hot baths and hot water bottles are my fears...
Bbee - am with you on the having something to focus on - I find it keeps me a bit grounded... last time for me it was counselling and acupuncture and chinese herbs. Next time who knows...
I had reflexology with DS and it was wonderful - she could magic my back pain away, and it was such bliss to just lie there for 45 minutes having a good chat. I would consider it again next time, but almost can't bear having to relay my story to someone else and hearing the pity and concern in their voice...
Bed time... Night all - I so wish I was better at going to bed earlier!
xx

went out last night and had a truly great time, horribly hungover today, not fun with a 2 year old, but it was worth it.

Must make pact to do this more often, sitting about at home feeling sorry for self isn't good for the soul.

Duvet day today, perfect day for it too, horrible and grey, so no guilt at staying in.

Perfect.

Hope all well today, am in agreement with you all on needing something to cling to. I'm clinging to the folic acid thing too.

Bxx

This thread sure moves on quickly! Thank you so so much for being so welcoming and compassionate. I am not on the internet as often as I would like (only 3 or 4 times a week) so have been finding it hard sometimes to keep up with threads, but I really feel the support and understanding a forum like this can provide is unique and very much needed.

SAMR your post rings so true. We have a 1 in 4 chance of having another baby with CF, so it is fairly substantial, though I'm trying to focus on the 75% chance of all being fine. Sadly I know of another woman who was trying for a sibling for their LO with CF and found out after the CVS that her baby was also affected, and she had to follow through the plan they had made like us, and it was so utterly devastating for her. In a way I feel like this is our last shot as I'm not sure I would face the emotional turmoil again but I also realise the longing for another child will probably not go away until we have another in our arms- just like so many of you- so we will face what challenges may come and the moral quandry it puts us in.

A friend had her third baby this morning and I have found myself in tears- partly relief that all is fine for them but also the longing that we could have a pregnancy full of hope and not tainted by the agonising wait for antenatal test results etc. But I realise so many of us do face these awful situations, and we find a way through.

Bbee really hope you are ok. The extra folic acid supplementation from what I've read does offer some sound evidence of reducing trisomies (I'm a biologist by training, though now a marine biologist of sorts, and the research does look good- although still at fairly early stages. To make it into peer reviewed publications the research goes through considerable scrutiny so you can be assured what is presented is true)- I always feel it offers some comfort to be trying somethnig different to what was done in previous pregnancies, so I would say go for it- it certainly can't do any harm.

Justa- will CAT you as just paid my CAT fees! The tiredness is a killer, I am useless from about 3pm onwards!

Sending much love to you all

argh justa I can't seem to click on the mail sign on your name line- keeps saying internet explorer cannot display this page- can you CAT me? Hope you are feeling ok this morning x

Hello people,

Welcome to JumpingJellyFish and big waves to you if you are out there lurking. I hope the time between now and the cvs isn't too hard, come here if it is and we will help yo get there. We are here whatever the result of the cvs.

Justa - have just read your post on nothing . What you say makes sense to me.
Life ebbs and flows and seems to have a pattern - and yet in a blink there is a revolution and the ebb and flow shifts and your pattern is replaced. Bam.
And then another blink, and the patern changes again. One of these days a blink will hit me and I will be gone. To heaven, or hell, or to another place with a pattern I have never seen before. 'It' matters to me hugely, and yet to the entire cosmos, I am a very small blink indeed.

Here on this thread the ebb and flow of life is unpredictable, disjointed, and the blinks have hit us hard. I am waiting waiting waiting and trying to be patient, for the ebb and flow to settle. For you all to have some time of predictable pattern as, the heartbreak aside, these times are exhausting.

Dh has the most disgusting case of tonsilitis I have ever seen ever. I didn't know a mouth could look like that. YAK! Doesn't get sick pay either - just when we need holiday spends. Bugger.

Hi JJF. Sorry I took ages to write and post and cross posted.

Hi FioFio- thank you for your post- I remember you from the CF thread a while ago. I am very lucky that DH & I agree completely on this, I think it would be incredibly hard otherwise. Your poor parents- and you too.

They can indeed do pre-implantation genetic diagnosis (PGD) through IVF now, however it is not available over here (I'm in Northern Ireland) and we are not entitled to any funding as our eldest does not have CF so we have had our "quota" of one healthy child. Plus as I have had severe pre-eclampsia in my first pregnancy and IVF would possibly increase likelihood of that in an IVF pregnancy I was advised this option is not really right for us. One doctor surprised me greatly by saying in his opinion selection of embryos through PGD is no different to him, morally, to selection at 12 weeks of pregnancy (not sure I agree at all, but that was his opinion- certainly now as a woman facing a 25% chance of termination at 13/14 weeks pregnant I don't feel emotionally that it's at all the same). I wish PGD/IVF was an option for us, but the CVS route is the only one. Reading on CF forums a lot of the adults with CF have strong views that babies should not be brought into the world with CF when parents know they are carriers- even with the potential optimism of gene therapy giving hope for partial cures in the next decade. And due to risks of cross-infection I just can't do that to DD. But I loathe this situation and if we weren't so sure to our core that we want another child I would happily settle with our 2 existing DCs.

Thank you tree for your welcome. The support will be much needed either way, and it is so good to have somewhere to go through this- thank you.

Hi all, not been on for a few days, dh off work this week and still recovering from my mums party. We got a group photo of the 22 of us in the garden and the chairs got left outside so here's me dragging in dining room chairs at 11pm!! Been taking it easy this week and enjoying the sunshine.

Welcome JJF, you have found the right place and it sounds like you have a good secure family so lots of support there too. I am wishing the best for you at the CVS.

Well I just got back from a nurse appointment to get another swab done as had picked up a slight infection from 'all that' but had course of ABs and she said everything looks fine. Just had a normal period and cycle back on track so..... nothing to stop us going for a baby.....

... but don't know if its the right thing. I've got over the termination fairly well, because I've had it much easier than everyone here. The fact the baby wasn't planned and we didn't have hopes and dreams dashed. But there is a part of me that wants to make it all 'right' again, I need a slap though, I can't replace that baby.

Anyway I expect I probably am too old.

I am really hoping for some good news here soon we need it!

Just quick hello to everyone else, ds2 is burbling away and I can't concentrate. He has invented a new word 'plip-plops' yes you guessed it 'flip-flops'

xxxx

Just turned the page in my diary to see if i have anything on next week, to see that I had my 20 week scan booked for monday at 3.30.

Feel sad, but somewhat removed. A bit like I'm looking at someone elses diary. Seems SO long ago since I was pregnant.

Mr Bezzy told me yesterday, that he doesn't want any more kids and he's happy with the one we've got, but that we'll probably try again, because I won't rest until we do.

Nice. He didn't get why I found this upsetting.

B x

anybody still use the ARC website? Although I've never posted, I keep an eye on the posts and don't seem to have seen any familiar names for a while.

I don't use the ARC website at the moment but did quite a bit around the time we lost Daisy. But I find here a more 'immediate' place to be. But I do read the digests. xx

Bezzy - for you. Maybe when you feel a bit stronger after seeing that diary entry, you might ask him to explain more what he means and where he is coming from.

Hi linspins

to be honest Tree, I don't think he knows what he wants either. He's hurt by the whole episode, but won't admit it.

bezzyk - it must be hard in a very different way for the boys. Such a strain on you a relationship I imagine [the straightforward pregnancy I had was, so a complicated one must be something else].
He is lucky to have an insightful woman who can see how his mind works that's all I can say. Maybe give him time - or wine, and get him talking? Maybe others will have more tips on man-handling . Still though, not easy for you. Big hugs from me. x

BB - did you see your doctor about the increased Folic Acid dose? If so, what did they say?