Just been diagnosed with TTTS

[SmellySphinx]

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 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 :|

I was halfway through then got distracted (typical me!) I will read the rest of the thread later on, thank you for posting it all makes a difference xxx

I had a surprise call this morning to say my appointment for an MRI has been made for tomorrow...I have to go to a funeral which I only found out about last night!! So it's been moved to 14th this month.

Hope the funeral goes as well as these things can

Thank you xx

I'm currently in Birmingham again, went to hospital with reduced movements last night, luckily my consultant was on shift! She scanned me and saw T2 has Hydrops, was transferred here this morning, now waiting for blood transfusion on anemic baby at 1pm. Sorry I've had my 1st lot of sedatives so bit carefree with the spelling haha. Haven't slept all night!

The feral medicine teams are amazing. Stay strong for those babies.

Fetal *

feral you had me worried there for a mo xxx

I hope it has gone okay

Oh goodness you've got it all going on haven't you. Thinking of you and hope all ok.

Oh god you must be exhausted. Hope the sedatives help you relax at least, and you've had some rest now. Let us know how the transfusion went xx

Woken up for my bp check, forgot where I was haha

The operation was very quick, I got upset right before again 🙄 had to hurry up and calm down sharpish in order to keep still! It was all the medication, I'd been really good so far not crying or getting upset, just getting on with it. Once I started to relax it all tried to come out 😶

Babies seem Ok, taking their time to get going poor little things. I had a Doppler last night just to check the heartbeats and all was fine, they're waking up now a little too as I write xx

Thank you everybody xxx 🙌

Glad to hear it went well. You did so well to not cry before then. Waiting for my laser was the worst day of my life, I still can't think of the day without breaking down.

One step at a time, strong mummy and strong babies.

Up and down with sleeping, running out of clothes to wear, I've cleaned the room loads of times (please say it's not just me who does this lol )

Waiting for a scan since 1pm. Proper getting cabin fever now, can't leave the room in case I miss the Dr coming around which would be typical!! There is bog all to do!!!!

Husband probably trekking down tomorrow on the train whilst the older ones are at school.

God damn it I wish I could be transferred back to my hospital, they don't tend to look after babies younger than 28 weeks (27 on Sunday) so if something were to happen I'd be back here again. Plus I'm not sure if I have to stay here anyway for another transfusion as it's likely to only last a week.

Ugggggggggghhhhhhh!!!!
I know I'm in the best place but needing to vent. Lots.

Oh and the only pyjamas I have with me are my husband's with a ladder and a small hole in the crotch lol

I'm holding on to not cry yet, if I think about it I'll start, I'm refusing! In was crying on and off before during and after the laser, it's impossible not to (((hugs))) xx

Had the follow up scan and the Hydrops fluid levels around twin 2 are going down, quite rapidly actually! Still around the belly and scalp but there is quite a difference xxx they're starting to move around more often now which is a good sign and a relief!!

You cleaned the hospital room?
No - I never did that!

I'm so glad things seem to be going in the right direction.

Yeah I did hahaha I was so bored! There was residue from a sticker on the cupboard, cleaned that off, left over blue tac on the wall- picked that off, cleaned smudge marks off the window and mirror! I know I'm a right saddo but there really is nothing else to do lol

I meant husband coming on *Monday not tomorrow

Hi! How are you doing? I've been thinking about you and the babies

I have no experience of what you are going through, just read your thread on Active. However I just wanted to say you sound amazing & I hope your babies keep getting stronger

Well I guess I only had a cubicle on a ward rather than a room so I only had a curtain or my bed to clean!

Hope you're okay

How are you doing @SmellySphinx?

Gosh I'm sorry I meant to update but it slipped my mind so many times!

The basic lowdown is...Had scans, dopplers, ccgs (omg those machines are so annoying!) Scan showed on Tuesday that the fluid around anemic baby disappeared completely. I finally got to come home Tuesday lunch time which I was mega relieved about! We went to the MRI appointment yesterday at St Marys with all my hospital bags packed as Dr K advised that I should be admitted for daily monitoring and thrice weekly scans. Once I had a scan there it showed that the taps is starting to reverse again and baby 2 is becoming anemic also there are signs that there is still an element of the ttts as fluid levels are started to become uneven. They didn't do an MRI. I'm too far gone for another transfusion and quite frankly it's just too risky. All the drs who have dealt with me so far have never dealt with a taps case!! I have been monitored appropriately though.

I'm due to be admitted for prep on Monday and C section Tuesday. The only problem being availability of cots for babies, it's all very dependent on the situation on the day. If there are none I will have to be transferred to either Oldham or Bolton, I really hope there are spaces!!

I'm going to request an extra scan tomorrow at my local hospital as the only two people who can perform the mca dopplers are on shift Fridays. Although it hasn't been recommended or anything after knowing how quickly things progress I think it's necessary, if anything then it's to stop me worrying myself into the ground!

I've been checking the heartbeats myself with a doppler, I know how controversial this is at the moment but I've had enough of them to know what I'm doing and I've used it throughout, not obsessively of course. I've always sought out help anyway. If I didn't have the doppler it would have been even more stressful so it'd helped me.

To be honest I've actually been quite stable, if I start melting down and crying everywhere it just won't help anyone. So calm, calm, calm and panic when I absolutely can't help it is my mantra!

Now I'm not saying I'm NOT scared, apprehensive, stressed tired..or anything! but as far as I'm concerned, scared is walking down my street, not down the garden path and is yet to knock on my door lol xx

I'd just like to say thank you to everyone following the story, I wish I was a little more articulate about it all but I talk (a LOT) and I have to update family and friends throughout haha it gets a little exhausting but it really, really helps.

I appreciate anyones input massively.

Here's to hoping things go well

I'm glad you're getting monitored well. How many weeks will you be on Thursday when you have the section?

I know the stress of cot spaces.

I was called the night before my section to say they had no spaces so might not do it. I was so worried as my consultant had told me that at this point they were safer out than in and I couldn't understand how they could leave them.
In the end my donor decided things for me as the blood flow to her was severely restricted and the doctor said 'I'll ring round the other hospitals'
I completely lost it at this point as I knew I wouldn't be able to drive after the section and also knew they would discharge me long before the babies. I think my deranged crying scared him because he had a word with neonatal and they let us use the side room that is usually for hospital transfers.

I'll be 28+2 on Tuesday
The doc at St Marys (who was absolutely fantastic) said the difference between 26 weeks and 28 is quite vast so although still very premature, it's all beneficial of course we got this far.

Oh Sammy I cannot even imagine, that is my worst nightmare and what I am dreading! We have good ish links and a train station down the road more or less but the further and further we have to go, the more stressful it will be. Neither of us drive and although we have had a couple of offers of lifts from people we know, we'd be on their schedule as to when we could ask and I don't like that feeling at all.

Being told
"we can't"
"We won't"
"Not possible"

Those are the words I do not want to hear because then I will break down. I hate the hopeless feeling! As long as I hear a "but we can" afterwards I think I'll be fine.

I feel awful wishing for space if there is none because you're possibly wishing away someone elses chance at saving or having their babies saved if that makes sense...everything is conflicted, feelings etc

We're planning on having all the children with us at whichever hospital we end up at. There is literally nobody available to watch them and if they go to school will be alone at home for some time. I'm confortable with an hour or two but not much longer. My eldest in high school can watch her 7 year old sister for a while competently however I really don't want them on their own especially when I'm having an operation and won't know where before hand.

The headteacher tried to suggest we take the 7 year old into school and she could stay at the after school club until 6. The less I say about that opinion right now the better. Raging doesn't even come close. It's for 1 day!!! She's barely had any time off school.