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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: 7) |
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Dale
Oct 30, 05 - 9:08 PM |
Just found out this week...
When Malissa and me found out we were going to be parents, it was a bit of a suprise. took a couple of weeks, but we did get used to the idea and actually started to really like it. a couple of weeks further on and we found out we are in for double trouble, malissa keeps blaming me because this will be the 4th genereation in a row on my side of the family with twins. anyways, wednesday was a normal day at first, i got up and made malissa brekky then jumped in the shower to get ready for work. when i got out of the shower i heard her calling out to me and just figured she needed some TP or something. i walked out towards the other bathroom and found her on the floor unable to move because of some pain. i got her dressed somehow and picked her up and put her in the car (she couldn't walk) so i could get her over to the hospital. 5 minutes down the road she passed out on me so i pulled over and caled an ambulance. they got her on some morphine farily soon after getting to the hospital so she got a little sleep and settled down while waiting for an ultrasound. by the time we were able to have the ultrasound, malissa's pain had setled down so we were in good spirits again. then when the ultrasound came along, we found out that they were both alive and that they are BOYS which we were both ecstatic about. a couple of minutes later, the doctor noticed that one twin was a little smaller and had barely any fluid in its sac. she went off to get a specialist and he had a quick look and told us that we'd have to come in the next day for a good look and some appointments with other specialists. this is when we first heard of TTTS :( now it appears to be in fairly early stages and the twins are very close in size still, but it is a HUGE worry for us at the moment. we just got used to the idea of having kids and we are now looking forward to it more than anything else in the world and this basically feels like having your stomach ripped out on you or something. we know about all of the options, and i've read though this site (great stuff by the way, i cant thank the makers enough for providing this resource) but i'm just wondering if anyone could maybe give us an opinion or point of view on the laser surgery? Monash Hospital in Vic has only just had the equipment set up for this surgery and if we were to go down that road, we would be the first in vic to have it done. i have the utmost respect for all of the hospital staff there and in particular, the specialists, but i'd really like a bit more info on this surgery in particular, other peoples experiences. lets face it, a % quoted by a doctor doesn't really tell you much about what the parents go through. and another thing i've been dicussing with malissa is the possibility of opting to do this before things progress any further. any opinions on this would be great too. we've both read about how bad this can end up getting for the kids and we are VERY keen to try and prevent it from progressing while the symptoms are relatively low. any thoughts on this would be very much appreciated. i wont waffle on any more, already written enough i think. thanks very much for any replies and thanks even more for making this site available :) |
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Kate
Nov 1st, 2005 - 7:40 PM |
Re: Just found out this week...
Hi Dale my name Kate, I found out when I was 19 weeks preg that there was a problem, I got sent to Monash Hospital in Vic where I found out I had TTTS at 20 weeks, you have probably read my story so far on the message board. Once they found out that the TTTS had got worse we were able to have the laser surgery done but it was not done in VIC so my doctor from monash who I must say is fantastic Dr. Andrew Edwards, called Dr. Danny Challis in Sydney RWH, who does the procedure, he was unable to come to monash so my husband and I flew to sydney, our doctor Dr. Andrew Edwards also flew to sydney to watch the procedure, we were told of all the ups and downs, we decided to go ahead with it, we wanted to give these babies the best chance, I got put to sleep during the procudure and it went for around 2 hrs, they do a tiney little cut and laser the vesels that are causing the problem, I had the laser surgery done at 23 weeks, I am now 34 weeks, I had ultra sounds twice a week for two weeks after the laser surgery then went to fornightly ultra sounds, after a week of the laser surgery everything became better, I have had no problems since, there hearts are still beating and there weights are the same, I have not regreted any decision we have made. And I must say you are in good hands at Monash Hospital they are all fantastic and understanding. All my love to you and Melissa, please contact me any time you are both in my thoughts |
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Dale
Nov 2nd, 2005 - 10:07 AM |
Re: Just found out this week...
thats great stuff kate, pretty much exactly what we want to hear  i dont think i could be happier hearing how well it has worked for you, give us hope that is kind of hard to find at the moment.We've seen Dr Edwards too and yeah, he is fantastic. he's given us his mobile number and has told us to call any time so that along with the way he deals with us (lets face it, it cant be easy telling us there is a problem like this) he's left us both holding him in VERY high regard  we've just been down at the hospital this morning, apparently there is a lady there who is 20 weeks aswell with TTTS and she almost looks like a full term pregnancy apparently  we've got to be grateful for small mercies i guess, it could be much worse than it currently is. anyways, thanks for the reply, i look forward to hearing how well this all turns out for you
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Dale
Jan 17th, 2006 - 3:21 PM |
Re: Just found out this week...
well, they went to 30 weeks and came out as healthy as could possibly be expected i think. if anyone is curious, my personal website has updates from before we found out about TTTS to today, a few days after Matthew Leon and Mitchell Peter were born. http://home.exetel.com.au/coconuts basically, the doctors were about to go ahead with the laser surgery, but decided to hold off for a day or two on the off chance that the readings were inconsistant. well, the off chance was what happened and the kids straightened themselves out! bloodflow and fluid levels all improved over the coming weeks and although it never fixed itself completely, it was more than enough to lift us out of the dumps. we were still doing twice a week ultrasounds when matthew decided that he wanted to come and say hi. mitchell wasn't so keen but when one comes out, so does the other. Matthew was born at 5:02am 12/01 at 1539g and Mitchell was born at 5:04am at 1229g. both are pretty much the same length, matthew just has a bit more meat to him. anyways, big thanks to EVERYONE that has given us well wishes and help with coping, we would have had a completely different attitude to it all if not for you. |
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Dale
Sep 1st, 2006 - 7:47 AM |
Re: Just found out this week...
i'm updating this because my website has changed, its now www.99coconuts.com the boys are now 8 months old and healthy as can be. little mitch is still quite a bit smaller than his brother matt, but absolutely no health or development issues whatsoever
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Malissa
Feb 7th, 2007 - 9:08 AM |
Re: Just found out this week...
Hi Everyone, Quick update of Matty & Mitch, we celebrated there first birthday the other week and everything is going really well, Matthew is crawling and Mitchell is nearly walking and they both love talking (even if it is just baby talk). Thanks to everyone for your support. Cheers Malissa & Dale |
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Malissa
Feb 9th, 2008 - 9:35 PM |
Re: Just found out this week...
Well the boys have just turned 2 They are doing fantastic, but I still cry about what we went through with the TTTS but I am so glad that we have our beautiful boys. |
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