September 2018 #2: testing and symptom-analysing

[Secondsop]

New thread. Will attempt to post link in old thread!

So we've just got the genetic results with the probability of this baby having the same condition that my daughter died from. One in 20. Feels really high. We won't know until 20 weeks either. Feel sick

Oh goodness @iamloading. That must be a dreadful feeling. Do you have other support/resources available? Eg I’ve heard good things about ARC (you may of course know all about them).

Poor you iamloading that sounds very difficult for you. I have heard good things about ARC too. Good luck with everything.
Pleased to hear there are some other 'elderly' 😉 ladies on here! And secondsop the same age! 😊 Are you a singer too?
Is anyone else due 29th September?
I am but will most likely have an elective c section a week or so before then.

Thanks both. ARC are lovely but unfortunately due to my daughters condition being so rare I know way more about it now than they do! The last study conducted on the risks of reoccurrence in subsequent pregnancies was done in 1988, and that's the stats the hospital have given me. Not exactly up to date research!!

@iamloading can't imagine how worried you must be feeling! I really hope that this baby doesn't end up with it for you xx

I've woken up second day now with no sickness. It's really stressing me out now. Not once have I felt funny through the night and that's when I've been the worst so far! Boobs are still hurting which is reassuring me slightly as they were the first to go with the miscarriage I had at this stage before. I just feel a bit negative about it all today now

Iamloading imagine if they said the chances of her having it were 19/20, you’d b absolutely convinced she was going to have it. Weellllllll, it’s actully 19/20 that she doesn’t so hopefully that might reassure you just a tiny bit xx

@iamloading it sounds like such a stressful time for you but I echo the thoughts about it being 19/20 chance of not being affected.

I'm currently sat at the doctors feeling rotten sick and dizzy. My husband has forced me to come. I'm still not keeping anything in and now sat behind someone who I'm assuming has a drink problem given all I can smell is booze. The lovely receptionist has given me a bowl just in case.

Yep you are all right, and I'm trying to think rationally about it. On the other side though I know if any of our downs tests etc came back at 1:20 we would be freaking out (understandably!)
@Namechangedtoscream that sounds awful, could you step outside to get some fresh air and just get them to call you in when they are ready?

That must be so worrying Iamloading. Is there a prenatal test to determine?

No unfortunately not. It can be picked up at the 20 week scan but not before. Also even if the 20 week scan is ok it can still develop at any point after that. Someone joined the group I'm on the other day and their baby developed it at 35 weeks and they lost the baby at 38 weeks. Bloody terrifying. It's called ventriculomegaly

iamloading sorry you can't get any definite answers, once the baby arrives does the chance of developing it stop?

I've properly got the kids sickness thing now. Dd is all better and back at school, but I'm suffering. The school run was hell, had to bring along a bag for life just incase I couldn't keep it in.

Praying my mum will pick her up, while I sip flat lemonade all day. NameChanged I'm glad you're seeing the gp, if I felt like this daily I don't know how I would survive. You're doing amazing, hg is a serious condition and it's fine to need help with it.

Sorry I'm struggling to keep up a bit, but there's scans today isn't there? Good luck at the scans!!!

Iamloading a friend of mine lost her daughter to this condition and then went on to have a healthy son. I remember her saying that just because she'd had one baby with this condition she wouldn't be of higher risk of having another. This was 8 years ago though so perhaps things have moved on since then and there are more advanced screening tests available now.
Is there a national expert in the NHS somewhere you could go and see? Another friend who has a very rare heart condition found an nhs consultant by looking on the internet and was able to be referred to the national expert in London even though she was over 100 miles away. Worth a try perhaps?
Wishing you all the best.

That's great to hear @smilingelizabeth - fingers crossed the same happens for me. I'm fortunate that I have seen the expert, but as it's not genetic there is literally nothing more anyone can do than cross their fingers and hope! I'll be having scans every 4 weeks though, and baby out at 37 weeks. It seems to be mainly something that develops in utero so roll on August!

Gosh @iamloading I had no idea these sorts of conditions existed and how frightening it is that there isn't a definitive time by which it could appear. I can only imagine how scary pregnancy must feel.

I'm still very much in a state of constant stress. I'm still nauseous and brushing my teeth is a deeply unpleasant event but I'm sure my boobs aren't as sore today. If I'm going to miscarry I just want it to happen now rather than me find out in several weeks time. It's torture.

I think I'll go to the EPU on Monday. I don't want to have my booking in appointment and start the ante-natal care if I'm not pregnant anymore.

Oh kirinm, it’s so hard. Can you get a private scan Monday if EPU can’t see you for whatever reason?

@MonaTheMoaner I don't think I want to go private. I'd only have to go to the nhs afterwards anyway and I feel like having to go through the process twice would be too stressful.

@kirinm can you not call Epu now and ask to be seen today?

@iamloading I'm sorry to hear you're going through all of this . I hope you're getting lots of support.

Oh @kirinm, I really hope you get to see someone soon

@Namechangedtoscream no, I'm at work and my job isn't the kind of job where they're happy for me to just leave. Plus I know that if I do miscarry, I'll need a lot of time off so best to be as up to date as possible.

My anxiety is starting to get the better of me but I think I need to allow myself the weekend to see if I'm overanalysing everything.

I'm sorry @Iamloading it must be so stressful.

@kirinm I hope you get to see someone soon.

Has everybody told their closest family and friends yet? Or when do you plan to?

Its my best friends birthday drinks next weekend and i could get away with the driving excuse as we live in different towns. But then I'd quite like to tell her. We havent told parents yet and I feel a bit bad about telling friends before family

kirin don't you wish like home dopplers, you could get home ultrasounds? Or a portable ultrasound van. So you could call up and they'd come to work during your break. Or pop round your house in the evening.

salz I haven't told anyone, but a mum friend I had to cancel a playdate last minute with, because the gp needed to see me. If you want to tell her go for it. You don't have to tell your parents first.

@CuppaSarah I did buy a Doppler last time but it arrived after I miscarried and I threw it away straight away. I think it would probably cause more angst at this stage anyway.

Eurgh today was the first day when I properly feel exhausted. Didn't help with a v late night at work and my personal trainer session this morning but feeling very off today 😥 quick question - hot water bottles on the tummy yay or nay? I presume not as it's too hot!

Hi ladies had my EPU appointment this morning I'm pleased to say all is fine. I'm actually a week behind what we thought was our due date. So 7+6 due 8th Sept (this could change again at 12 week).

How's the rest of you doing???? Thinking about you all.....it's so tough going xx