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Support Group for Hi Risk NT Results #40


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#26 PeanutButterTurtle

Posted 23 August 2012 - 10:26 PM

Melby - that must be horrible, being in limbo and not knowing what's going to happen with appointments etc :-( Please try not to stress out too much! Has the hospital sent the letter yet?

Apples - I am so sorry to hear that sad.gif Good luck for tomorrow, hope it all goes well. If it were me, I'd still tell people, but I suppose it depends on what you'd do if the tests showed a positive result.

AFM, it's nearly time for the counsellor and amnio. I'm starting to freak out a bit, more because of the thought of anaethetic in my belly, yeouch! I'm finding it very hard to get excited about the pregnancy now because of this risk looming over our heads, I'm assuming that's normal?

#27 Apples

Posted 24 August 2012 - 11:11 PM

I had the scan and CVS today... the scan pretty much confirmed that there is definitely a lot of fluid around the baby, not just at the neck.  The CVS was very uncomfortable... she said it would feel like a scratch... she lied!  I've been a bit achy afterward and trying to take it easy.  
I will get the FISH results on Monday...
I don't want to tell anyone yet because for us, from what we have been told... there is a very high chance that this preganancy will miscarry.  I guess Monday will tell us more, if not, in two weeks time.

Edited by Apples, 24 August 2012 - 11:12 PM.


#28 Apples

Posted 26 August 2012 - 12:38 PM

Hi,
sorry I seem to just be talking about me...
last night was maybe one of the worst of my life....
it was my sisters engagement party...
first we had someone ask us if we were planning on having any more kids - I was so unprepared for that question I just fumbled something out, like, maybe, not sure... then she asked DH and got a similar response - she must have thought we were so strange.

But then the night was almost over and my sisters fiance made an announcement... they are expecting their first baby... due in March (when I am due).
I couldn't believe it.  My mum and dad (who know about us) asked if we knew... we had no idea! She is 12 weeks too, so I'd say we both concieved around the same time.

This would normally be such a happy time, but me and DH just had to get out of there and go for a walk.  I woke up early this morning as usual for the toilet and couldn't stop thinking about it.  I was just lying there in tears and eventually gave up on the idea of sleep and jumped in the shower, still in tears.  

I am so tired today... and trying to keep busy.  I so desperately want a miracle to happen...
xxx

#29 PeanutButterTurtle

Posted 26 August 2012 - 10:30 PM

That must have been so hard for you sad.gif  bbighug.gif I cried for nearly 24 hours straight when we first got our risk results, I honestly think it's the best and healthiest thing to do, rather than trying to suppress it.

I have everything crossed that you get the news you are hoping for tomorrow!



#30 zackcat

Posted 27 August 2012 - 01:31 PM

Hi Ladies

Hope you don't mind me popping my thoughts/questions in this thread....it seemed like a lot of us are going through the same thing.

I'm booked in tomorrow for a CVS and have spent the last few days stressing about it. I have a problem with needles and generally would take valium to help get through it, but that's not really an option atm......

I've got a call in to my GP to ask her if I can take some tomorrow as I am making myself so sick with fear. As if I needed something to add to my general nausea!  

I'm having it at a large ultrasound clinic so I'm praying they will be used to doing these and offer numbing cream or even an injection.

I guess the only good thing about all my stressing is I am not that worried about the results.....just need to get the actual procedure over with first!

I'm 43 and  12w 3d pregnant with my first baby, so my GP suggested the CVS as our first option as I'm so high risk.

I guess I'm just looking for reassurance from anyone whose had one? And any coping strategies to use during the procedure?

Thanks for listening to my ramble!

Edited by zackcat, 27 August 2012 - 01:32 PM.


#31 wallofdodo

Posted 27 August 2012 - 01:51 PM

Apples I hope you have had your result by now, and it was good.

Zackcat, no real coping strategies from me, except to say expect to be stressed and anxious and allow yourself to feel those things.

As for the proceedure, the CVS is over pretty quickly. i have had one done privately and one done at RWH, and while i don't remember the private one at all (owing to circumstances) the one I had recently, and yes it was uncomfortable, I had anesthetic, but I found something in the room to focus on, and did that. As soon as it was over I was like a different person.


Good luck

#32 melbymelby

Posted 28 August 2012 - 10:50 AM

Apples, how did your test go? are you're results in yet? i hope you have had some good news
I completely understand how you feel about your sisters announcement of a baby as well. my sister in law is also due around the same time, and of course everything is going perfectly for her. So i'm constantly having her baby things shoved in my face, and believe me there's been a lot in the last 2 weeks..."we got a new car for the baby".. "its a boy".. "here's an invitation to my baby show which isn't for FOUR months but i just must give them out on the same day you are waiting for test results to know if your baby will survive... grrr. a little sensitivity wouldn't go astray.. sorry, rant over..

i had my CVS yesterday finally at the womens, the lady thinks she will have my results by the end of today. so im absolutely freaking out. scan wasnt perfect, they think there was a small hole next to the umbilical cord, which can be a sign of trisomy 18 or a problem of its own. im so worried.

Zackcat, good luck with your test. I was very anxious yesterday for mine. the test itself didnt hurt all that much, i didnt even feel the local they put in, and the other needle was a bit uncomfortable but not unbearable. i just held my husbands hand and closed my eyes until it was over. it didnt take long at all, one the needle was in maybe 2 minutes? it wasnt as bad as i thought it would be, you will be fine too.

I hope everyone else is going well too

#33 Apples

Posted 28 August 2012 - 11:21 AM

Hi girls,
thanks for your thoughts and support.
I got my results, finally, at about 4:30 yesterday afternoon.  I'd taken the day off work coz I just didn't want that call while I was there... me and hubby took a long bushwalk and had lunch at a little cafe sitting outside in the sun. It was really nice.  
The FISH results were inconclusive but are pointing to Turners Syndrome.  (Its a girl).  
So now we have to wait til early next week for the full results.  The bad news is also that the swelling looked worse on Friday's scan from the Wednesday scan. sad.gif
I've been doing some research, and looks like we have about 2-3% chance of survivial... trying to be hopeful but realistic at the same time...
I'm telling my manager this afternoon, so at least she will know if anything happens.
I'm also thinking of telling my sister... I asked a few questions via email to suss out exactly when she is due and whether she had the NT scan. She said her dr adviced against it, so I'm trying to talk her into it without giving anything away... and she said she might drop round tonight to show me the picture from her scan... hmm I think i could cope with that but DH probably not... He told me last night that he just feels numb.  I'm kind of feeling like I had my big cry and now I'm just dealing with whatever is thrown at us...

Good luck with your results MelbyMelby.  Did you see Sue? She is the lady who we saw for genetic counselling and who called me yesterday.  

Zackcat: Good luck with your test.  You know I didn't even think about closing my eyes! I wish I did.  I focused on the smoke detector, but could still see a little of what they were doing out the corner of my eye.  I had anesthetic, and it is over pretty quickly.  I'm normally not a good needle person either, but can cope as long as I don't look.



#34 melbymelby

Posted 28 August 2012 - 11:30 AM

Well fingers and toes crossed for you apples, will be thinking of you. it's a shame you have to wait even longer to find out sad.gif
Yes we had Sue too, she was so lovely. So i'm waiting on her call today.. around 4:30 she told me. i came to work but now i wish i didn't.
Good luck with whatever you decide to do with your sister, we have told a few people of our problems, so it's not such a big secret for us.

#35 zackcat

Posted 28 August 2012 - 04:38 PM

Oh Apples I am so wishing you get some good news. You poor thing it must all be so stressful for you and made even more so with your sisters pregnancy. I know it’s tough, but try to find some nice things to do for yourself and maybe now isn’t the time to see you sister as she will be so excited about what’s going on with her? Try not to google too much either…..it can seriously do you head in!

Keeping my fingers crossed for you to get good news today melbymelby…..waiting for the call is hard. Until you get the FISH results, try not to worry. Easier said than done I know…….. And seriously? Baby shower invites from your SIL already? That’s crazy!  

So after working myself into a complete state yesterday my GP said I could take valium if I needed it, so I did take some this morning. Along with maxalon after my morning vomit……The CVS wasn’t as bad as I had feared. The Dr doing it was awesome and spent so much time talking through things with us. The local hardly hurt and the actual sampling took about a minute and just felt weird and a bit painful. No more painful than getting a bikini wax really.

She said she’ll have my primary age related results tomorrow and the other ones in about 2 weeks time. I was quite shocked that she said my risk of downs at 13 weeks is 1 in 12 {I got re-dated to 13w 1d}.  
Oh well, I’ll try and not worry about things until tomorrow. Feeling a bit sore and miserable this afternoon, but no bleeding so far.

Stay strong ladies.


#36 melbymelby

Posted 29 August 2012 - 04:38 AM

Well we got the news we were dreading, our baby does have trisomy 18. We are the 1 in 57. I can't believe it.

I wish everyone all the best with your results

#37 Apples

Posted 29 August 2012 - 08:15 AM

sad.gif sorry to hear that MelbyMelby sad.gif


#38 zackcat

Posted 29 August 2012 - 09:06 AM

Oh Melbymelby I am so sad to read your news. I wish there were some words I could say to make you feel better.

Please stay in touch if you need any support.

#39 Apples

Posted 29 August 2012 - 10:08 AM

Good luck for your results today Zackcat.  You did really well to get through the CVS since you were so stressed about it.

I told my manager at work yesterday.  She was really lovely and supportive.  An opportunity has come up for us to stay in a holiday house in Batemans Bay next week... so we may be going on a holiday next week.  Will be good to get away and relax... but then we would be getting the results while on holiday... and if anything happens I'm not going to be close to the womens hospital... I'm sure they have a hospital up that way, but you know... I kind of feel like they already know my history etc at the womens...

anyway I've just put the request in, so will wait and see if we get it.

I'm heading to my sister's this morning too... I want to tell  her before she goes to her OB so she can make a decision around having the NT scan.

#40 Apples

Posted 30 August 2012 - 09:45 AM

How did you go Zackcat?  

I told my sister yesterday so she has now decided to do the NT scan.

And the holiday is booked... I'm glad to have something else to think about and get excited about original.gif
But it does mean I need to tell another couple of people at work so they know whey I am suddenly going on leave! But the more people I tell the easier it seems to get... I just need to jump in quickly with the I'm pregnant BUT... before they jump in with congratulations...

How are you feeling Melbymelby?

#41 zackcat

Posted 30 August 2012 - 09:56 AM

Morning Apples - glad to report the initial tests came back all clear so rule out the major high risk syndromes for my age. It's a good feeling, but it's mixed emotions knowing other women on here didn't get the same results as me. It must be so devastating for them.

Good on you for talking to your sister - how did she take it all? I'm pleased she's going to get the NT now. And great news about the holiday! It sounds like just what you need.

I'm a bit weird about telling people....we've told about a dozen or so friends/family but there is really no excuse now for not telling people. I'm a bit of a control freak and I know soon that as more and more people find out I lose control of who I choose to tell. I also need to stop crying every time I tell someone!


#42 Apples

Posted 30 August 2012 - 11:45 AM

That is great news Zackcat! I'm happy for you original.gif
Unfortunately not everyone can get positive news... but I think it would be too depressing if we only heard about the bad news cases.  We need to give a little bit of hope to people who are unfortunately joining this little support group.
I hope your full results come back all clear too.

My sister was great.  she was shocked, especially to know how close our due dates are, and is wishing us all the best.  Its kind of hard because nobody has heard of turner syndrome before so I have to explain as best I can (which is just based on my google searches!).

I've probably got 2 more people at work I will tell this week... and these are people who I figure will be able to support me if things don't go well, or they would need to know either way (whether things turn out well or not).

#43 jdmum1

Posted 30 August 2012 - 02:38 PM

Just thought i would quickly check in. I posted a while back. We declined the amnio/cvs...i am now 25 weeks and kinda wishing we had got it done. I think although things are showing good so far its still not 100% conclusive a definite yes or no to Downs syndrome or not (our risk was 1:115 based on my bloods).

My 20wk scan bub looked good all looked ok, nasal bone and heart fine. 24wk scan last week...still looking good rechecked heart but its fine. And checked growth bub is measuring bigger. They said that they will monitor growth of bubs as one of my bloods that was way higher then it should have been from the 12wk scan can apparently indicate a placenta issue...but so far bub is measuring well.

Thinking of everyone else going through this i know its a big roller coaster.

#44 zackcat

Posted 31 August 2012 - 11:45 AM

apples - try not to stress while away and just enjoy being somewhere beautiful. Walks on the beach will be perfect for you. And I'm sure if you need to go to hospital for any reason you will be looked after no matter where you are.

Hi jdmum1 - It is such a rollercoaster isn't it? Must be good practice for when we actually become parents! The scans you've had so far sound pretty positive, so lets hope things stay that way.


Edited by zackcat, 31 August 2012 - 11:46 AM.


#45 mamamaree

Posted 03 September 2012 - 03:04 PM

Hi Ladies,
            Im sad to see some more names in here and read some sad news sad.gif
Hugest hugs to everyone.

I had my amnio done today....what a relief...ive been living this hell for 2 weeks and its such a relief to finally have the amnio done.

It did not hurt at all, and was done without anesthetic.
It was all over and done with very quickly.

Partner and I have been taking it easy this afternoon and have had a bit of a cry together...we cant change the results, what will be will be.

Fingers crossed for good news for us this week when they come back.

We are prepared for the next step if the news is not favourable....i can handle things better if i know what comes next and what to expect.

#46 PeanutButterTurtle

Posted 04 September 2012 - 02:52 PM

Just a quick check-in for me! Had the amnio last Monday, and while it wasn't painful, it wasn't the most pleasant thing in the world. The needle going through the skin I didn't feel at all, but my uterus cramped up around the needle which was a bit uncomfortable, and I could feel the pressure change with the fluid being drawn out. Our hospital doesn't offer the FISH results, so still a week to go before we find out. I have a feeling it's going to be a positive result, but only time will tell now! It was nice to see little Yoda again though, with the hiccups and all.

I caught up with a friend the other day (she doesn't know about the high risk, we've told very few people), and somehow we got onto Downs and other genetic conditions, and it really put a dampener on my night. She was very adamant about a few things and it was very upsetting, given the position we're in at the moment. I've been quite down ever since, just goes to show how fragile I still am underneath the brave face!

Melby - Hope you're OK.

Apples - I'm so sorry to hear your news sad.gif Hopefully you're enjoying your holiday, and the full results bring better news for you!

Zackcat - glad to hear your results were clear!

#47 mamamaree

Posted 05 September 2012 - 01:19 PM

Hello Ladies.
Got our results back today and all is fine. So a False alarm.
We got told the sex also.
I wish everyone a speedy result through this torturous time.
xxxxx

#48 Apples

Posted 07 September 2012 - 02:04 PM

Mamamaree: that is great news original.gif

Midstudentcatie: I know how you feel about talking with people and certain topics come up that the other party don't know have deeper meaning for you... at work some people were talking about one of the big managers at work whose wife had died and he took a week off and was back at work.  there were arguments about how he needs to get back to work since he is being paid so much, and I'm saying that he wouldn't be able to concentrate anyway and should be able to take as long as he needs...

Rollercoaster is definitely how I feel like right now...
We got a call while we were away with the next lot of results... which said that the baby doesn't have Turner Syndrome... which is good news... but they don't know exactly what is wrong... there is still something about missing x chromosomes... but they need to study some more between now and Monday when we will go back to the hospital.
so we are back at the starting spot again it seems, just when I was getting used to the idea of Turner Syndrome and had studied up on it...
they are going to be looking for cases similar to ours to try and determine what it would mean when the baby is born.  Sounds like it is an unusual case.

The holiday was lovely though, and yes lots of long walks on the beach.  The weather was beautiful, couldn't have asked for better!


#49 Cyaira

Posted 07 September 2012 - 09:00 PM

Hi all,

Really disappointed to be joining this group. sad.gif
Had my NT scan yesterday and got my results back today. We got 1/296 for downs syndrome but 1/4000?? or so for the other trisomies.

I know it's not that high, in the scheme of things, although I am 24, so it's high for 24. Everything was normal except for PAPP-A... nt fold 1.7mm, nasal bone present, heart ok and 160BPM, stomach in the right place, HCG MoM 1.2 which I think is fine.

But my PAPP-A is really very low, 0.27 MoM.

Haven't talked to my OB yet. We're thinking of not doing a CVS but doing an amnio if the OB recommends it. I was thinking, possibly, PAPP-A could indicate placental problems. May be related to bleeding I had early on, not sure. My gut feeling is that the baby has no chromosomal problems...

Does anyone here know anything about normal results except really low PAPP-A?? Sorry if this is the wrong place to ask sad.gif

#50 MrsBobby

Posted 08 September 2012 - 11:25 AM

Hi everyone,
we have had our NT scan results come back a few days ago. 1:175 risk of DS, the others very low risk. Obviously been devasted after seeing our baby happily swimming around and waving at us and being 29 i didn't think we would have to worry too much. But then got called into the office and told instead of our backgroud risk of 1:706 we had a 1:175 risk due to NT measurement of 2.2 at 12w3d and PAPP-A of 0.43... All still within the normal range but a bit close to the high and low ends of the scale...  Had an appointment with our OB on Thursday and he basically told us not to worry too much. I was worried about my low PAPP-A score as well, he said it's no where low enough to be worried. We are having our amnio booked for 26/9, bit nervous but trying to stay positive. Reading here has helped me a lot and calmed me down heaps ( as well as talking to my OB!!! So can only recommend doing that!).
I am really sorry to hear about people whose results don't turn out the way we all hope for and my thoughts go out to all of you!

Cyaira, sorry to hear you are in the same boat as us, talk to your OB about the low PAPP-A, he will be able to tell you if there might be concerns. I think with a low PAPP-A it's more the third trimester where they will monitor you very close IF there is anyhing to be worried about. From what I read here most people with a low PAPP-A go on to have a very healhy baby so try not to worry too much (hard I know!).




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