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TTTS Australia Inc. MessageBoard
This messageboard is to provide compassion and support to Australian families affected by TTTS !
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| Viewing Page 1 of 1 (Total Posts: 4) |
| Author | Comment |
Kate
Oct 8, 05 - 5:02 PM |
TTTS
I was told at 20 weeks I had TTTS, then the roller coaster began. We chose to do the laser surgery but had to wait for there to be no fluid left in donor. I was admitted to hospital at 22 weeks as the fluid level for recipient was becomeing large very fast, I had daily ultra sounds to monitor this by week 23 I had 3.25lt of fluid taken from recipient and an ultra sound showed the valve from the heart to liver was pumping the wrong way (Tuesday), so the next day we were on a plane to sydney (Royal Hospital for Women) on the Thursday I had the laser surgery done and another 3LT of fluid taken (6.25LT all up)(23 Weeks) on the friday I had an ultra sound to see how the babies were they were both still alive and fine, i was discharged from hospital that day and back home on the monday. I have a 14 month old so its been hard for him as after the surgery for the first week I was unable to pick him up, after that week past I was able to live a normal life and have a normal pregnancy, I had weekly ultra sounds , which showed things had started to improve, it looked like the TTTS had gone, the valve in the recipient had started to pump the right way the fluid levels were normal and there size was good and equal, ultra sounds then went to fortnightly, which i found so hard as I relyed on them so much, things were improving so well that my next ultra sound is in 3 weeks I am now 30 weeks going on 31 and Im amazed I have got this far I am booked in for a c section on the 29 November 05 I would be 38 weeks then it would be fantasic if I could get there, so fingers crossed that everything works out for us. All my love to everyone that is suffering TTTS I would not wish this upon anyone |
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Carissa Cook
Oct 24th, 2005 - 3:58 PM |
Re: TTTS
I am sorry to hear about your TTTS. I am a mother to twin boy's who our Miracles to us. They suffered from TTTS and were born at 32.5 weeks. They are now three. I just wanted to wish you all the best, and let you know I will be keeping you and your family in my prayers. If you wish to contact me please feel free to do so. All the best!!! |
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Dale
Nov 3rd, 2005 - 10:50 AM |
Re: TTTS
Hi Kate, it was really good to meet you today  if you couldn't tell, it really REALLY helped malissa out, she was thrilled to be able to have a chat person to person with someone that has successfully gone through the same operation that she is likely to be having in a week or two. anyways, keep us posted on your progress and we'll do likewise. best of luck to you in the coming weeks 
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Kate
Nov 20th, 2006 - 1:17 PM |
Re: TTTS
Well just over 1 year has passed since I had my girls, I thought I would up date you all on how the end of the pregnancy went. Well I made it to 35 weeks and 5 days when my waters broke, I went in for a c section 13.11.06 and had Abbey Tayla at 6.20am 2590g and Bonnie Margaret 6.21am 2668g, when they bought me my beautiful girls I new something was wrong, it took the genitics 3 days to tell us what was wrong, our girls were born with Treacher Collins syndrome, which has nothing at all to do with twin2twin syndrome, it is a 1 in 10,000 chance just like twin2twin syndrome, so if it worked the other way we would of won the lotto twice, I will give you a brief description on treacher collins syndrome, it is something that runs in your family or a gein that has gone wrong, so for us it was a gein that went wrong. What it is the girls skull of the face is not formed propbley, there cheak bones, bones under there eyes, jaw is all not developed, they have no eye lashes on the bottom, and there ears and ear canels are not developed, Bonnie had to be rushed to royal childres hospital straight away as her jaw was that small she could not breath, she did not come home till 4 months of age, abbey came home 2 1/2 months then also had to go to RCH to have jaw destration. This syndrome was not picked up in any of our ultra sounds, so I was defently shocked, and fell in a heap for quite some time, after everything we went through with TTTS I had to ask why us???? The girls have just had there 1st birthday and are doing well, they have just started cralling. They are constantly at the RCH having operations, appointments and sleep studies, I have foster parents that are looking after my girls at the moment as I am still strugling with everything I have been delt, I see my beautiful girls everyweek and love them so much.I have a new email address khermonashe@iprimus.com.au |
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