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Not good news - do not read if hormonal

85 replies

charleymouse · 25/11/2006 18:43

Hi Ladies
Thanks for all your kind words on the "do you ever thread" I didn't want to post on there and spoil it for eveyone. I had my nuchal scan last night and discovered that twin 1 has a nuchal score of 3.8 and a risk of some form of chromosone problem of 1/3, he/she also has an exomphalos (hernia where his bowel & liver are outside his abdominal cavity).
Twin 2 has nuchal of 2.4 and appears visually okay at the moment and Downs risk of 1/ 204 and other trisonomy risk of 1/768.
I am going to see a consultant next week and hopefully T1 will only have this hernia which should be operable after birth. Obviously there may be other things as well but I am clinging to the 70% chance that they might not have chromosone problems.
Trying to be positive but may not be around much over next few days as have lots of people to see and things to get my head round. I am at my local EPU on Monday, seeing my midwife Tuesday/Wednesday and hopefully a consultant on Thursday.
I have to sit tight until 15 weeks to wait for an amniocentesis to check them both out. I have already been offered a termination of one or both babies but also advised to have an amnio to see if one is going to be viable. My best case at the moment is one healthy baby and one baby which will need an op after birth. Worst case is the poorly baby doesn't make it takes the healthy one with it.
Sorry if I spoil Saturday night just needed to get this off my chest.

OP posts:
Are your children’s vaccines up to date?
piximon · 27/11/2006 11:08

charleymouse you are in my thoughts.

Kelly1978 · 27/11/2006 11:52

charleymouse so sorry to hear about the scan results, your head must be spinning trying to take all that in. Please do post ont he other thread too, it is there for support.
Will be thinking of you and sending you lots of positive vibes and prayers for you all and hope this week brings you some mroe positive news.

Creena · 27/11/2006 13:09

Charleymouse - just wanted to say how sorry I am to hear your news. We are all thinking of you on the May 07 thread and send you our love and hugs. Please don't ever feel that you can't post on the May 07 thread - we will all be there to offer you our support and provide virtual listening ears.

Piffle · 27/11/2006 13:16

Could not read and not post.
wishing you all the luck for a great outcome from your amnio for both twins Charley mouse

xxxxxxxxxxxxx

speedymama · 27/11/2006 14:23

Charleymouse, I just found this and I'm sending you lots of hugs as well as best wishes. Try to stay positive and we are all thinking of you.

redkennedy · 27/11/2006 15:58

Charleymouse darling, thinking of you and wishing and hoping for the best for you and your DH and your darling little precious ones. Much much (albeit virtual) love and hugs and shoulders to cry on and ears to moan at. Hugs and kisses pxxx

charleymouse · 28/11/2006 23:54

Hi Ladies, thanks for all your messages and good wishes, did manage to get on yesterday and type a nice explanatory message which I then proceeded to lose by hitting the back button on the mouse (never even knew it was there before). Have seen my midwife today and hopefully we should end up with a baby at the end of all this, 2 will be a bonus. Seeing consultant on Thursday at QMC in Nottingham.
Cheers.

OP posts:
Kelly1978 · 29/11/2006 16:00

good luck with thursday charleymouse, I;ve been thinking about you. thanks for updating.

lapinrose · 29/11/2006 16:47

Good luck on Thursday Charleymouse x

frumpygrumpy · 29/11/2006 18:37

keep us posted honey, hoping for a good day for you x.

lupins71 · 30/11/2006 08:40

Just popped in to wish you luck for today charleymouse, hope it goes ok (((((charleymouse))))

Lisa xx

MarsLady · 30/11/2006 08:41

Praying for you babe! Hope all goes better than you expect today.

saggarmakersbottomknocker · 30/11/2006 08:43

Hope it goes well today charleymouse.

piximon · 30/11/2006 08:50

Good luck today charleymouse, I'll be thinking of you.

Frenchsmallfry · 30/11/2006 11:15

Best of Luck today charleymouse. xxx

MarsLady · 30/11/2006 21:39

How did it go today babe? Been thinking of you a lot!

Piffle · 30/11/2006 21:43

another here watching out for you and hoping for good news for you xx

saggarmakersbottomknocker · 30/11/2006 21:45

Me too. HOpe everything is OK.

morningpaper · 30/11/2006 21:47

me too charleymouse xxx

Marina · 30/11/2006 21:49

Hope your appointment was as positive as possible charleymouse

charleymouse · 01/12/2006 08:52

Morning Ladies
I saw the consultant and a fellow and sonographer and a MW at QMC yesterday. The good news is T1 and T2 are actually measuring the same size. At the private scan T1 (with probs) was a lot smaller - it hasn't caught up just was not measured quite right. This is good as everyone we have seen has said it is not a good sign that 1 is so much smaller than the other, it looked the exomphalos was causing growth problems, which we now know it is not.
We have an amnio booked for the 18 December and should have the preliminary results back within 2/3 days. Not sure how I am going to manage to rest the week before Christmas with a 2 year old running around .
If all is well with the chromosones then we are on to have a detailed heart scan as this condition may be linked to heart defects.
All we can do know is sit and wait, we have discussed all the options and different scenarios we just need to have information which we can not get until the babies get to a certain size/age. We have been offered a good peadiatric surgeon and heart surgeon if that is what we need so feeling relatively positive after yesterday.
We had a great day on Wednesday as well, obviously we had told all the family our news but told them life has to carry on as normal for DD1 so we had a birthday tea with chocolate cake and candles and she had a great time. She was so good and took it in turns to play with everyones gifts so everyone felt pleased with what they had bought for her, definitley PMM all day.
She is so perceptive though on Tuesday as she was playing I was just sat crying and she came up and gave me such a big hug and said "so sorry Mummy, Mummy sad" I will have to get a grip and only lose it when she is not around.
Thank you so much for your support, it really helps.

OP posts:
saggarmakersbottomknocker · 01/12/2006 09:08

Charley - glad you've had some good news about the babies size at least.

If it happens that you need some support around the heart stuff please mail me jaxp63 at hotmail dot com. Dd has heart problems and although we didn't get a prenatal dx I can put you in touch with mums who have gone through that.

Will be thinking of you over the next few weeks.

dhw · 01/12/2006 09:18

thinking of you - and keeping everything crossed for a happy outcome.

take care
x

lapinrose · 01/12/2006 09:35

Nice to get some good news charleymouse, fingers crossed for the other results too xx

Overrunnerbean · 01/12/2006 10:06

Charlee, glad that you have had better news, at least the size difference is not an issue anymore. HOping that things continue to look more positive for you