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  • "Clarabel77" started this thread

Posts: 510

Reg: Nov 3rd 2014

Location: Scotland

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Saturday, March 7th 2015, 6:45pm

TTTS? Anybody have any experience/knowledge?

I've looked up loads of stuff online but just wondered if anybody out there had any experience of twin to twin transfusion syndrome. I'm 19+2 and my pregnancy seems to have had lots of problems and I have been closely monitored for past few weeks because they were concerned about one of the twins being smaller. Yesterday my scan showed a lot of fluid inside me, but one of the girls had very little fluid around her whereas the other one had too much. It has progressed very quickly to stage 2 ttts. I have to go into hospital on Monday for a laser procedure and might have to go down to Birmingham woman's hospital if it can't be done in Glasgow, which also freaks me out. I've been told I could lose one or both of the girls. I've read so much online and I'm well aware of the risks but just wondered if anyone had any experience of this, We are both trying to be strong but are utterly shattered by all of this . x
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

Rico

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Location: Manchester

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OFSTED is over!!! We're good, good, good! :)

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Saturday, March 7th 2015, 9:17pm

Awww, sorry Hun, I've no experience but didn't want to read and run! Just wishing you loads of luck, prayers coming your way for the times ahead xx :hugs:

Google can be awful! Just listen to your consultants, good luck x sending you a rainbow of hope x :rainbow:

My Diary

1 IVF/ICSI failed to fertilise May 10 :bawl:
2: IVF/ICSI October10 (BFN) :sniff:
3: IVF/ICSI Feb 11 - OMG a very cautious :BFP: :bawl: Another little soul lost M/C 7 weeks :bawl:
4: Full fresh ICSI/SSR/IVF Feb 12 xfingers :BFN: :tear:
5: :goodnews: IM Barcelona for DE Oct/Nov 13 - :BFP: :heart: seen many times :loony:
Our miracle is here bab22 30/6/14 :thumbsup2:

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Clarabel77 (07.03.2015)

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Sunday, March 8th 2015, 5:37pm

Hello


So sorry to hear your news. It must be so stressful. I don't have any experience of this, but just wanted to wish you well.

Like others have said, stay away from Google. That's not to say you shouldn't get different opinions, but it is so hard to find information online that can help you make any kind of decision about things.

As for going to Birmingham, I would focus on the fact that this may well be the best place for this procedure.

Wishing you well and hoping all turns out okay

Love jenny x
One beautiful boy born in 2010 but multiple attempts for a sibling very sadly had to stop.

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Clarabel77 (08.03.2015)

  • "Clarabel77" started this thread

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Sunday, March 8th 2015, 6:34pm

I have stopped looking up about it because there is no point. Birmingham is supposed to be a centre of excellence so if I do need to go hopefully they will be in good hands, it's just a thought having to make the journey and add time on to what is already precious time to save the girls, but it's all out of our hands now.
Thanks Jenny. Xx
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

    United Kingdom

Posts: 3,648

Reg: Jul 2nd 2009

Location: Suffolk

Children: Beautiful Jessica Mae x Holly and Elliot!

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Sunday, March 8th 2015, 8:22pm

I met a number of families along my journey who suffered with similar complications and had to undergo similar laser surgery. I obviously cannot comment as our issues were different but I have a lot of positive stories. It must be really quite stressful I'm sure but please try not to worry x
3 X ICSI
Jessica Mae Duffety born sleeping on 9 January 2011 (21+2) - TS and HLHS
Holly and Elliot Duffety born on 16 October 2011 (25+6)
Natural Surprise - Matthew Evan Duffety born sleeping on 11 October 2013 (15+5)

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Clarabel77 (08.03.2015)

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Sunday, March 8th 2015, 9:01pm

Hi Clare, I obviously don't have any experience of this but just wanted to say I'm sorry you're having to go through this extra stress. It sounds like you are being very well looked after so I'm sure everything will be fine. Like the others have said, if you have to go to Birmingham it will be worth it if that is where you and your girls will get the best care. All the very best and let us know how you get on xx
Ashastar

IVF June 2014 :BFN: :tear:
FET Nov 2014 :BFP: smile2

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Clarabel77 (08.03.2015)

  • "Clarabel77" started this thread

Posts: 510

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Location: Scotland

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7

Sunday, March 8th 2015, 10:59pm

Thank you both. It helps to know that you have came across families who have had positive outcomes Hayley, there is so much written about the negatives. xx
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

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Monday, March 9th 2015, 7:29am

Hi Clare, if you look back through the multiples thread I'm sure there was someone else in your situation who ended up having the same treatment in London, and both of her babies were fine. I'll see if I can find it for you. I can't imagine how scary this must be for you. Wishing you and your babies all the best. X
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

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Monday, March 9th 2015, 7:40am

Hi again, it was wannabemum82, just wondered if you tried to pm her she may get back to you. I know when I get a message I receive an email, so hopefully even if she isn't browsing she would see she has a message. Just a thought. I know if I was in your shoes I would want to speak to someone who's been through it too. It sounds like you are in good hands and that everyone's keeping a close eye on you. I'm so sorry you are having to go through this. This journey really is a never ending roller coaster ride. Try to stay positive. I'll keep everything crossed for you and your family X
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

This post has been edited 1 times, last edit by "smihel" (Mar 9th 2015, 7:43am)


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Clarabel77 (09.03.2015)

  • "Clarabel77" started this thread

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Monday, March 9th 2015, 9:54pm

Thanks Smihel, I will maybe try and find the lady your speaking about. I had the procedure done this morning and it went as well as it could have done, was a long wait to find out how it had gone as had to wait hours for a scan which was horrendous. Hoping to get home tomorrow, then just need to keep fingers crossed as we know we are not out the woods yet. Thanks a lot xx
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

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Monday, March 9th 2015, 10:17pm

Hi Clare, I'm keeping everything crossed for you. I can imagine that time must have slowed down for you whilst waiting for your scan, I am hoping it was ok once you had it. Take care and rest up, I'm sure DH and your family will be running around looking after you. Have a safe journey home tomorrow and I'm thinking of you all. Sending big hugs and wishing you all the best. X x x
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

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Tuesday, March 10th 2015, 1:23pm

What an awful experience. Try to take it easy now. Everything crossed for good news.
xxx
One beautiful boy born in 2010 but multiple attempts for a sibling very sadly had to stop.

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Clarabel77 (10.03.2015)

  • "Clarabel77" started this thread

Posts: 510

Reg: Nov 3rd 2014

Location: Scotland

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13

Tuesday, March 10th 2015, 9:04pm

Thanks ladies, I'm home now and everything went as well as could have hoped for. Both girls seem to be doing well at the moment, and fingers crossed it will stay that way. To stay on bed rest until next appointment on Friday xx
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

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Reg: Oct 17th 2009

Location: Inverness

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Tuesday, March 10th 2015, 9:31pm

Clare, that's great news. And as you say long may it continue. Good luck with your bed rest, I hope you have plenty of films and books to keep you occupied. I'll keep everything crossed that it's good news on Friday too. Take care x x
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

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Tuesday, March 10th 2015, 9:40pm

Glad to hear everything is ok Clare. Have been thinking about you. Take it easy and fingers crossed all will be well on Friday x
Ashastar

IVF June 2014 :BFN: :tear:
FET Nov 2014 :BFP: smile2

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Thursday, March 12th 2015, 11:03pm

Hope everything's still going ok with you and your girls. I will be thinking of you tomorrow and wish you all the best for your check up. Still keeping everything crossed for you all. X
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

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Clarabel77 (13.03.2015)

  • "Clarabel77" started this thread

Posts: 510

Reg: Nov 3rd 2014

Location: Scotland

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17

Friday, March 13th 2015, 6:02pm

Thanks Smihel, I appreciate that. Both girls are still doing well and they are really pleased with how things have gone after the procedure. They both had good heart beats and all the fluid seems to have evened out. I feel really lucky. Thanks for checking in on me xx
Ttc 7 yrs
Immune issues.
3 iui BFN.
IVF Nov 14 BFP :give_heart: :give_heart: It's TWINS!

2 beautiful girls arrived 8/6/2015, 7 weeks early but perfect. Kayla Grace 4lb1 and Sophia Faith 4lb 3.


Clare

blowkiss

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Reg: Mar 20th 2013

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Friday, March 13th 2015, 6:22pm

Excellent news Clare! Glad to hear everything is well xx
Ashastar

IVF June 2014 :BFN: :tear:
FET Nov 2014 :BFP: smile2

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Friday, March 13th 2015, 8:02pm

That's fantastic news! I'm so pleased for you all. Fingers crossed you have a more relaxed time till you girls arrive. Take care x
TTC 8yrs
3 early mc
ICSI x 3 BFN
ICSI no 4 march/April :BFP:
1 [zx076] seen 7 wks.
bab21

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Friday, March 13th 2015, 8:37pm

So pleased for you
xxx
One beautiful boy born in 2010 but multiple attempts for a sibling very sadly had to stop.

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