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Just been diagnosed with TTTS

(111 Posts)
SmellySphinx Thu 11-Oct-18 01:20:23

Hello x

I have twin boys, I'm 22+3 weeks and earlier today I was diagnosed with TTTS I don't know what stage but the notes I have don't make for good reading. One twin is surrounded by too much fluid and the other twin is 'adhered to the uterine wall' and bladder wasn't seen. I have had no signs or symptoms other then one side of my belly appeared a little larger and I mean a little bit, but it didn't appear to be all the time. Also pretty much as soon as I got 21 weeks, I was feeling quite a lot of pressure in my lower abdomen and under my rib. All pretty normal for pregnancy and especially twins I would have thought.

I already knew about ttts as of course as soon as I found out I was having mo/di twins I did all the reading (Googling) I could possibly do...well, you do don't you!

Everything was going excellently until I had my 22 week scan earlier today and the sonographer went quiet after she saw the heartbeats and didn't say much except for the fact there was more fluid around one baby (the donor) and that was pretty much it. I saw the consultant, a different consultant, each time I've seen a consultant it's never the same one. This is the 4th time and is actually the consultant I should have been seeing all along really...she explained it all and we had to go home and sit and wait for a call back as they were trying to sort an appointment for me at Birmingham Queens.

I was so distracted I booked the wrong date for the hotel which tried to charge a £65 cancellation fee hmm which my husband luckily got them to cancel for nothing and we ended up in a different hotel.

So, one bus-train-taxi-takeaway later I'm sat in this 'lovely' hotel. Thankfully the people next door only had very noisy fun once so I don't have to listen to that all night long. My husband and toddler are asleep and well, I can't although I know I need to soon.

Appointment is at 10am tomorrow and I'm trying not to worry too much, I've just been googling medical papers and ttts stories which are a mixed bag of course.

I don't know why I've written it all out, I'm just so apprehensive...and tired :|

Maraki12 Thu 02-May-19 13:55:24

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

PeakTransedAgain Tue 12-Feb-19 19:47:53

Sphinx I have just read your update. I remember you writing about your family during your pregnancy and being one of many people sending you & your babies strength thanks

I hope your have lots of support thanks

loopylou1984 Sun 10-Feb-19 21:05:01

I'm so sorry for your loss.

Very glad to hear your survivor is doing well though. I can't imagine being in your position, you sound incredibly strong.

mummyhaschangedhername Sat 26-Jan-19 16:28:03

So sorry, but equally congratulations. What a awful place to be in,with the joys of a new baby and the heart loss of losing one. Glad he's doing well. How are you doing?

springchicken123 Sat 26-Jan-19 00:34:32

So sorry for your loss OP thanks I've just read your thread from start to finish and what a journey shock glad your surviving twin is doing well. All the best going forward x

cushioncuddle Sat 26-Jan-19 00:14:07

I'm so sorry about your little one. It's wonderful news about your surviving twin. Your strength is incredible thanks

Yearofthemum Sat 26-Jan-19 00:08:56

That must have been extremely tough for you to deal with. I'm glad your surviving twin is doing so well, though.

SmellySphinx Fri 25-Jan-19 23:54:01

Hello everyone following this thread! I'm sorry I didn't continue it but it's been such a long and exhausting journey that hasn't ended yet, I have thought about updating but never actually gotten around to it.

I will go into detail at some point although I think it would be far easier to do so using an online blog type thingy rather than here.

I had the c section at 28+3 both boys were born alive but sadly our smaller twin passed away at 5 days old. I can't really say any more without going on and on and on other than it was fucking awful but not as bad as your imagination would lead you to believe.

You just cope with whatever is thrown at you. Even though when you talk about it, it is just the worst thing that can just live with it.

Our surviving twin is 38 weeks on Sunday and doing well.

That's the very, very short version of our story xx

mummyhaschangedhername Sun 25-Nov-18 12:48:52

Hope all is well op.

babysharkah Wed 21-Nov-18 07:51:52

Hope everything's ok smelly! X

loopylou1984 Tue 20-Nov-18 19:21:56

Hope everything's okay. X

loopylou1984 Tue 20-Nov-18 10:22:45

Thinking of you today xx

comradelouise Mon 19-Nov-18 21:41:23

Good luck for today/tomorrow Smelly!

Been off having a bit of my own pregnancy drama, so sorry that this is a bit out of date now, but I was thinking, the teacher was probably just trying to be helpful suggesting your daughter stay in the school in the spirit of offering you some free babysitting? But totally agree that's not what's right for her!

And also just to say that you might know this already but just in case you don't... if you give birth in one hospital that doesn't mean the new arrivals need to stay there. My daughter was born in Woolwich because King's (my local hospital) didn't have a spare cot in the NICU. So we had a 2 hour bus journey each way every day, and so we requested to move back to King's as soon as they had space, which they did for us after 10 days.

SmellySphinx Mon 19-Nov-18 14:14:23

Oh and thank you to everyone wishing us well, I have read your replies sorry if it seems I'm being ignorant xx

SmellySphinx Mon 19-Nov-18 14:12:57

You know those people who have the incredible misfortune to get struck by lightening more than once in a lifetime? I can relate to them right now!! hmm

SmellySphinx Mon 19-Nov-18 14:09:25


I've got a cold now, literally TODAY it decides to start.

SmellySphinx Mon 19-Nov-18 04:32:00

Plan is still the same Sammy xx

Booking at St Marys late afternoon then the fun starts.

Magnesium drip for 4 hours, chat with the anesthetist, starved at 10:30. That time isn't set in stone, as far as I'm aware from then on it's wait and see time as to when they're going to perform the c-section for Tuesday and where it will be in relation to cot availability.

When I got home yesterday afternoon I was a little on edge as the babies movements, notably twin 1s, were softer and not as vigorous. It was anemic baby who was worrying me the most as the deepest fluid pocket was noted as 1.7mm (oligohydramnios -very low fluid). I had to weigh this up with a sensible head as twin 1s fluid wasn't noted as polyhydramnios. Their levels have fluctuated and 2's decreasing BUT twin 2's levels have gone up and down at different scans... I spent a good few hours trying different positions and drank water regularly to stay hydrated and hopefully to up the fluid level. Not hugely proven to change things but it could help and won't do any harm...

I suspected that he had changed position as they've done regularly and that was causing the softer movements, plus anterior placenta. I kept checking the heart rates because I know what's normal for them both. 1 is 130-135 and 2 is around 140+.

I decided not to go back for more monitoring as I noted enough soft/hard movements to keep me satisfied it was nothing more than different positions.

Obviously I have to say that if anyone else happens to read this experiencing the same issues that none of this was recommended to me, it's what I chose to do considering previous experiences and I had already had a scan and been monitered. They were moving, hearts beating etc...all individual to me and my circumstances. Plus I am booking in tomorrow anyway.

I just woke up randomly at 3:30 and here I am lol, babies are wriggling.

If I become concerned again later on this morning I won't hesitate to go back to my local hospital for more monitoring, best to keep an eye on things.

Oh washing machine is years old and has been good to us. It was already here when we moved in and Landlord said use it but if it buggers up or leaks then we're responsible for it. I had already bought a replacement catch for the door years ago when that snapped so it's done its job grin Could have picked a better bloody time to break though!!!! No matter, at this point I'm not sodding bothered in the grand scheme. We'll have to use a laundrette if things get desperate and whack a cheap new one on the credit card.

mummyhaschangedhername Sun 18-Nov-18 20:17:29

So sorry you are going through this. Wishing you all the best OP.

loopylou1984 Sun 18-Nov-18 19:59:51

So what is the plan now?

And sorry about the washing machine too.... just what you need.

RainbowsArePretty Sun 18-Nov-18 13:52:37

You sound so strong thanks

ellesbellesxxx Sun 18-Nov-18 13:50:51

Just been reading your journey so far and I am
Keeping everything x for the coming weeks. My twins are fraternal so obviously we haven’t personally experienced any of this, all I know is from TAMBA publications and their site.
Wishing you lots of luck xxx

SmellySphinx Sun 18-Nov-18 13:35:04

Bairy* even smile

SmellySphinx Sun 18-Nov-18 13:31:02

Haha thank you BigHairyHollocks!!

I don't know about bravery, I'm just going with the flow. There is literally nothing else to do 'cept go into melt down, that is not an option xx grin

SmellySphinx Sun 18-Nov-18 13:27:48

Take THAT washing machine.

Bastard angrygrin

SmellySphinx Sun 18-Nov-18 13:20:06

Just got back from the scan, again lol! The mca readings were slightly lower but the TTTS is back again, anemic babys fluid is reducing. I had ecg monitoring and those readings were fine eventually anyway, they were wriggling around so much it was very difficult to keep contact!
They said I could go back to the hospital later on for extra monitoring if I wish to.

Oh and the washing machine door hinges have just bent, snapped and fallen off LOL!!!! I don't even care anymore.

Bloody hell universe, want to throw anything else at me!?!?

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