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Stage 1 TTTS

(12 Posts)
Zee1978 Mon 16-Dec-13 20:41:30

I dont know if anyone can help me. I am 22 weeks pregnant with twins, at our scan on Thursday (21 +5) I was diagnosed with Stage 1 TTTS, which only happened during the previous 2 weeks as the scan prior to this one all was fine. Small Baby is wrapped in a much smaller sac than "greedy baby", but at that scan both bladders were seen. I was told that I would probably need to go to Kings in London for laser ablation surgery Tuesday or Thursday of this week and to go home and come back on Monday (today). I believe they already contacted Kings College Hospital to advise of the situation and let them know I would probably be there this week. I had another scan today and blood flows were apparantly okay, but the bladder of Small baby was harder to see. The lady scanning said that its not good that the bladder is harder to see this time, and that there is definitely TTTS. She said she was going to speak to her boss and the surgeon at Kings College as she felt we would need to have this surgery. About 10 minutes later she came back and said they werent referring me, and that I had to go back to the hospital for an ultra sound every day to be monitored. When questioned she said sometimes things dont get any worse ..... but the bladder was already hard to see so I am assuming things have got worse over the last 4 days!! She also mentioned something about sometimes the baby progress declines / reverses, so I assume they just stop developing? I have read everywhere that time is of the essence and over the 4 days since the last scan found TTTS I have found comfort in the fact that I am only Stage 1 so this has been caught early and can be treated early .... and now after this scan today confirmed it is TTTS and due to bladder appearance HAS got worse, I really dont understand why they arent referring me for any kind of treatment. I know some people get to stage 3 and have had laser ablation surgery and things have been fine, but I am really finding it hard to understand why my baby/babies is/are clearly in trouble and my hospital wont send me to Kings for help sad I am so worried now after this scan as like I say everywhere says time is of the essence and I am being made to wait and wait and wait while my babies are in danger sad Does anyone have any advice?

MrsMinkBernardLundy Mon 16-Dec-13 20:44:51

Sorry zee no direct experience though i do have dts. just popped in to hand hold.

So you are due another scan tomorrow?

Zee1978 Mon 16-Dec-13 20:48:40

Yeah another ultrasound tomorrow at 12.30.

MrsMinkBernardLundy Mon 16-Dec-13 20:57:45

At least you can hold on to knowing that tomorrow things will either be the same in which case there is more time, or if there is a change they will see that and presumably do something.

Hoping it goes well tomorrow. fingers crossed for you.

Zee1978 Mon 16-Dec-13 20:59:24

Yeah I see people talking about protein shakes a lot too. I eat very little meat, and wouldnt know where to start in finding protein shakes :/ Plus I am not eating properly at the moment with all the stress and the worry and thats stressing and worrying me more so I feel sick all the time and dont eat properly ... feel in a viscious cycle at the moment. And maybe feel a little bit of a drama queen too sad

MrsMinkBernardLundy Mon 16-Dec-13 21:08:08

Protein shakes - well that at least I can help with. you can get them in a lot of gyms, fitness shops but you also get them on the fitness aisle at Tesco. Look for whey protein powder. comes in big tubs you make it up into shakes. they aren't even that bad.

Although, that said i have nite personally heard them recommended and i have both idea if they gave e.g. too much vitamin A. someone else May know. mw?

Do you take dairy? Lots of milk and eggs woukdn't also be good for you. nice boied egg or a big glass of milk with a biscuit maybe. it is hard to eat when stressed but twins take a lot out if you and they need a lot.

Protein shakes can make you feel very satiated though. you might need to consciously eat as well as take them but if they are recommended, try Tesco.

MrsMinkBernardLundy Mon 16-Dec-13 21:09:06

Not both idea idea ^ ^ no idea. sorry on phone.

Zee1978 Mon 16-Dec-13 21:22:29

I rarely eat eggs, and only really have milk with cereal and in tea (decaf). The hospital when I asked said there wasnt really anything I could do, so they didnt mention it, it only seems to be an American suggestion.

santachristmas Tue 17-Dec-13 13:06:38

Hi Zee, I had successful laser ablation at Kings, we were stage IV and it was diagnosed with surgery on the same day.

I really would push for your hospital to refer you - which hospital are you under at the moment?

I did a lot of reading at the time, the advice re protein shakes is American and relates from what I remember more to the kind of 'treatment' advised before the ablation surgery was invented. I'm pretty sure it can't do you any harm though.

Keep track of your symptoms, if you notice a sudden change in your bump - size, hardness, shiny skin and breathlessness things are probably progressing and you need to push to be seen asap.

Hope things went well today.

Oh, and you are definitely NOT being a drama queen!

Zee1978 Tue 17-Dec-13 19:32:10

Im with Medway Maritime in Kent. I had another ultrasound today with the actual consultant and came away feeling a million times better than I did yesterday. The lady yesterday who done the scan I think was slightly more doom and gloom and negative than she should have been. The consultant today was brilliant. He explained that they are waiting for the time when the surgery will be most effective, they are not leaving the problem for any other reason. He said that he is happy that the scans on Thursday, Monday and Today show little to no signs of getting worse and he can still see the bladder enough not to push for surgery yet. I actually think maybe the amniotic fluid around the greedy baby may have reduced a little as I feel very much less bloated and uncomfortable today than I have done in a while. He is still pretty sure that I will need the surgery but not until things actually decline. I guess its better for babies for my body to keep doing what its doing without intervention than risk early surgery. I actually asked the consultant today if we were at a point of panic and he said no definitely not. I could have actually hugged this guy today lol. I am pretty sure that I can trust this consultant. I have had him watching my notes and popping in during scans to see me throughout, and reading the notes today they have monitored me really well. The lady yesterday was just ultra negative and threw me into a panic, today has been a much better day. I dont even have to have an ultra sound tomorrow and they said I would need one every day smile So back on Thursday morning for another check up. Thanks for all the support ladies I cant tell you how much I have appreciated it last night and today smile

MrsMinkBernardLundy Tue 17-Dec-13 23:42:53

Great news to hear that you are being well looked after.
try to take it easy and look after yourself too.
Leaving it as long as possible does sound like good sense.

MrsMinkBernardLundy Tue 17-Dec-13 23:46:49

Just reread my earlier post it should have said milk and eggs are good for you. but uf you don't fancy them you don't fancy them. but the main think is just to keep eating little and often if eating a lot makes you queasy (i felt sick for weeks with my two...then spently two months eating cake blush)

Best wishes

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