Hope and Twin To Twin Transfusion Syndrome (TTTS)

Are you hopeless when you are less hopeful when you have more reason for hope? I'm feeling that as time goes on I'm somehow becoming less optimistic.

The TTTS rollercoaster has reached it's first major milestone, the 24 week mark. I'm still not happy, I still want more. 24 weeks is a green bar , viability they call it, that I'd gazed longingly at just a few weeks back. However, the realisation that the green bar has no axis for quality of life has hit hard. At 24 weeks, the low but progressively  improving survival rates are accompanied by painfully high odds of severe and permanent disability.


A few weeks back (it feels like a few months ago) I wrote about our rescue team of clinicians that I could see at the 24 week mark on the rollercoaster. The team in the distance with their fingers crossed are now shadowing us closely and are clearly the experts I'd hoped for. However, I can't help but notice the ground where we'd derail for even the next 4 weeks is heavily covered in immediately unforgiving sharp rocks and long term pain inducing nuclear radiation. You are either in for some immediate pain or some long term pain.........or with twins, maybe both.

24 weeks is a better place than we've ever been but I think I felt better 2 days after laser surgery at 18 weeks. It doesn't make sense but I guess that is the nature of ups and downs. The constant good news about the boys health doesn't seem to be dragging me up anymore as the fear of slowly increasing fluid levels and uncertainty about what number of weeks we'll come to a sudden jolting stop a wins the power struggle.

My wife has just gone to bed with some very mild pains. Mild pains that she had last week that were simply ligament stretching. Pains that she didn't have last night when we went in to hospital and her amniotic fluid pockets had marginally increased. Mild pain that will still be enough to ensure I don't get a good night's sleep tonight.

We're going back in to hospital tomorrow.

Whats the funniest part about having a high risk pregancy?

"What's the funniest part of having a high risk pregnancy?" is a question you are unlikely to ever get asked unless you have really insensitive people around you..............really insensitive (I'm sorry for you). I think the only appropriate way to ask this question is when you can ask it of yourself.

With all the unease and tension during a high risk pregnancy there are bound to be a few moments when your emotions see saw and give you a break by making something slightly amusing absolutely hilarious to you when you accidentally encounter it. To put it in perspective, we're at 23 weeks tomorrow. If my wife went in to labour and the doctors were able to delay our boys would have a chance, but it would be a very minute one. We NEED another 5 weeks but only time will tell if we get it. It's a different sort of tension to our unexpected surgery at 18 weeks and it might seem crazy but it feels just as tough.

So what's funny about the amniotic fluid drain that my wife was rushed in to have 10 days ago. Well, when the doctor was doing the scan of the dire situation he said that if this was my wife's first pregnancy her body might not have held up however her cervix was "rock solid and hadn't budged".
A few hours later when we were in the ward after she'd been given morphine to allow 900ml of fluid to be drained she comes out with

"The doctor said my cervix was rock solid, ROCK SOLID. Yay Cervix! You're my favourite body part of the day!". 

In my mind, I could see a advertising sponsorship "Today's pregnancy saving moment was brought to you by The Cervix, keeping you rock solid when you're pregnancy isn't!" and I lost it. OK, so maybe you had to be there, heck I was there and there's only a half smile on my face as I relive the moment. At the time it was like I'd just watched Dave Chappelle's "I'm Rick James Bitch!" skit for the first time. I think the key was the timing, we'd just gone through another unexpected "must be done today" procedure and the timing of that statement clearly indicated the end of that little saga.

Another funny moment came as a result of my 12yo daughter wanting to know a lot more about the pregnancy. I told her she could ask anything and I would answer truthfully but I wouldn't necessarily give her all the detail. She asked plenty of questions over the next hour and I was comfortable with answering all of them. THEN...........the next evening she had another one that required a forewarning

"Dad, I realise this is a really personal question so like last night you don't have to answer if you don't want to."

I braced for a tough one.

"Do you prefer it when you see people getting hurt in slow motion or in regular speed? You know, slow motion like when you can see their face slowly crinkle after they get hit."

She'd just seen a slow-mo replay on the cricket on TV that triggered the question. It was obviously too personal for me as I couldn't talk for the next minute.

And yes, I am worried that my daughter has already decided that Dad likes watching people get hurt, it was just a matter of preference!

The Vines: Spaceship is my TTTS: The Musical

I've become a bit obsessed with a song by an Australian band, The Vines. Much like the ups and downs of a high risk pregnancy, The Vines enjoyed dizzying highs of making the cover of "The Rolling Stone" to the lows of the band capitulating and cancelling tours at short notice. They've had their successes along the way and I've loved their music including their grungy rockers and their soft melodic tunes. As an idea of how much their songs relax me, 2 of the 3 songs played before my wife came down the aisle were by The Vines.

Spaceship from their Vision Valley album was always a nice melodic song to me but it has never resonated with me like it is now. The song just seems to scream the emotions that I'm feeling so well.  I've become a bit compulsive with it and I'm at times finding myself looping it repetitively in the car on the commute to and from work. I have no idea what Craig Nicholls, the lead singer, was trying to convey. I'm sure it wasn't to capture the journey of a high risk pregnancy but I don't really care at the moment as it's giving me the meaning that I need.

At around 6 minutes, the song feels like it goes on forever and is somewhat of a divergence from most of their songs that often check in at the 2-3 minute mark. It say's "I am here and I'm going to take some time to get through". This coupled with some of the agonising slow drawn out single notes heading in a downward progression feels like that pain of getting slowly hit with one setback after another. A feeling that I see myself slipping in and out of constantly during this high risk pregnancy. Last Thursday, my wife had to have another unexpected amniotic fluid drain. She was discharged Friday and we were back at hospital at 6am Saturday as she was suffering abdominal pains. She came back home on Monday and that uneasiness of what setback might today bring has been lingering.

The song also hits you with a guitar solo that feels like a transition from slow despair in to a pent up  frustration released as a rage. I think a high risk pregnancy is tough enough on individuals and, whilst family support is priceless, it's also tough to see your family experiencing the same pain. It's incredibly tough at the end of the day to hear your wife say "I hope my babies don't die". It's tough when you find yourself planning to buy a people mover for your expanding family whilst making the logical decision not to buy it just yet, just in case. You feel like a logical but heartless bastard. I think it's human to get angry, to release something back to say "This isn't cool, I'm not OK with it, I'm angry". There just isn't an obvious recipient for the message.

The final solo has to me a more of uplifting feel. It feels like a celebration after the slow periods of despair infused with transitions in to an anger. Like there is a happy ending to it all. Like I will get my dream of holding my healthy twin boys in my arms.

The Vines, to the best of my knowledge, never put together any form of video clip so I've developed one in my mind. Maybe this is a form of therapy that I need but I feel happy making the familiar repetition. I think if I had any kind of video skills I think I'd be attempting to make a video clip as a kind of healing process.

The video would be weaved with common themes of light and darkness as well as time moving both quickly and slowly. The central theme would be a father desperately trying to keep 2 candles alight. A job that is like a long slow vigil as well as a frantic rescue. The ongoing struggle is highlighted by time shifts of forest transitioning from natural beauty in daylight to an uncomfortable darkness overnight. There would be ultrasound videos weaved in. I've played this over and over in my mind so many times that the themes go in to great detail that I think I could write a script and would be disappointed at how much I'd have to remove due to the song only being 6 minutes long.

Psychologists probably have some complicated name or theory for what I'm doing. I think at the most basic form its a visualisation. I think it's working well for me due to the painful honesty about it. The 6 minute song is dominated with a stressful, unhappy outlook. However the journey littered with constant setbacks can have a happy ending. A journey that my wife and I can look back on some day and be happy of what we achieved and grateful of the loving support we had around us to achieve it.

22 weeks and 2 days today, still in no hope land but getting painfully close to the incredible lift in survival rates experienced 24-28 weeks in to a pregnancy.

Dear TTTS, Thanks to you I feel like I'm achieving very little in my life. Regards Pete

At the moment, outside of supporting my family, I feel like I'm achieving very little in my life.

So here we are at 21 weeks, 4 days and 20 hours. Not that I'm starting to focus on gestation or anything! We are still only a small way in to the pregnancy and yet my wife has already had an operation that included Laser Ablation (laser treatment of the blood vessels between the twins), Septostomy (tearing of the dividing membrane between the twins) and amniotic fluid reduction. She has since needed another amniotic fluid reduction just 2 days ago, 3 weeks after her initial surgery.

This morning she woke up, at 5:45am, uncomfortable again and feeling nauseous. Within 30 minutes she was vomiting, Nanna had arrived to babysit and we were returning to hospital after being discharged yesterday. Halfway through the 20 minute drive she told me she felt a tightening in her belly. We got in and went straight to the Mother and Foetal Assessment Unit (MFAU) where she was physically ill again. Just 2 days after fluid reduction things were again looking bad.

She was given some nausea medication by the doctor until our treating doctor arrived. The twins have decided to move in to a horizontal position across my wife's belly which accounts for the discomfort. Whilst all our focus had been on how the pregnancy was causing my wife's symptoms it appears it had little to do with it. Gastro appears the to be culprit as I experienced some of its joys this afternoon. She has had to stay in overnight, my 12yo daughter is having a sleepover and with my 2yo daughter asleep the house feels empty again.

Today my planned productive day was dominated by the hospital trip/admission, looking after our 2yo daughter followed by housework and food shopping.

At the moment, outside of supporting my family, I feel like I'm achieving very little in my life.
At the moment, outside of supporting my family, I feel that there is little worth achieving.

The day a toddler saved her little TTTS brothers

Get ready for a very raw post. This all started just after midday and I've just gotten home at 8pm. I'm tired and this will be a pretty basic sequence of events. We got through a bit of a hairpin turn today but that's it for the rollercoaster analogies.

My 2yo daughter might have quite possibly saved the lives of her little brothers today.

Around 1pm today, my wife called me at work as our 2yo daughter, Lilli, had been calling out for "Daddy". We engaged in the typical deep but somewhat one sided conversation that is the staple of toddlers at her age "Hi Daddy...... Hi.........Hi Daaa.....dy........ Buh Bye.....Bye". Afterwards, my wife mentioned that she'd been experiencing some abdominal pain. She was going to call the hospital if it didn't subside by the time she'd eater her lunch.

Being the man in charge, I demanded that she call the hospital immediately. 10 minutes later she had fallen in to line and was calling me back to let me know that the doctors wanted her to go in to hospital. I hurriedly left work and made the 30 minute trip to the hospital to meet her. In the Mother and Fetal Assessment Unit (MFAU) she then hit me with the news that she hadn't felt the boys moving that morning.

A scan revealed the small build up of amniotic fluid seen at our scan 6 days ago had drastically bulged to a dangerous size equivalent to what had prompted laser surgery 3 weeks ago.

From there things happened quickly. Drugs were administered, wife and babies went groggy and by 4pm a needle and tube were inserted in her belly. An hour later she was headed to a ward with just under a litre less fluid in her belly.

Maybe, just maybe, a 2yo saved her unborn little brothers today. The doctors said that my wife was lucky that her body stood up to the excess fluid and if this was her first pregnancy it probably wouldn't have. If we had waited for our weekly scan tomorrow it may have been too late.

My boys have now made it to 21 weeks and 2 days inside their mummy prison. Hopefully the gates are locked tight for a while yet.

PS In regards to my demands and the wife falling in to line. After she hung up from our conversation she considered my request, ate her lunch and then called the hospital as she'd always planned to do :)

The TTTS rollercoaster slows, Problems ahead

The TTTS rollercoaster has been kind over the past few weeks. My wife had an operation that successfully saved our twins and we are now approaching 21 weeks. The 3 scans since her operation at 18 weeks & 3 days have been largely positive. The latest scan showed healthy boys and a slightly larger build up of amniotic fluid (but within the normal range) for our larger twin, Max.

And yet, compared to tumultuous times, I've found myself pretty depressed this weekend. Back in 2013, our twins were misdiagnosed as MonoChorionic MonoAmniotic (MoMo) twins. MoMo twins share one amniotic sac which is highly dangerous as their cords can become entangled. I think Pete from 2013 would struggle to relate to me today. He would say Mate, we're in the early months of our pregnancy worrying about high risk MoMo twins. You are 21 weeks in to your pregnancy, have MoDi twins and just got through a high risk operation completely unscathed. I would do anything to swap places with you. 

And Pete from 2013 is right. Back then I would have taken my situation today in a heartbeat and been incredibly thankful for it. So why am I feeling this way?

The metaphorical TTTS rollercoaster isn't the quick and short lived rollercoaster from the real world. I don't think we are built for such long term fluctuations in emotions and adrenaline. We are not built for rollercoasters that stretch past the horizon.

I've briefly stepped out of crisis mode and the "What's my job?" creed is still relevant but not all encompassing. The roller coaster has slowed and as I've sat back and relaxed I've spotted a rescue team off in the distance. Who knows how long they've been there but day by day I can see them getting closer. They want me to depart in an orderly fashion at the end of the line but they are preparing for a derailment. They're simply too far away if we were to derail now. The team looks professional, highly skilled and are backed by impressive technology but I can't help but notice they've each got their fingers crossed. Luck will play a massive part.

Back to the real world.............sort of. I've dreamt I'm with my boys at the waters edge of a place close to my heart. My boys are healthy and I'm holding one in each arm. They are too small to risk bathing them in the very cold waters of the river but I have trickled some water on them to connect them to the place. I am smiling, there is a hint of tears in my eyes. My tiny boys  are oblivious to the significance of the occasion but we are all healthy and happy. I WANT THIS SO BAD! and I'm so scared that I won't get it.

I can now feel my boys moving in my wife's belly, things aren't just on a screen any more and I'm hurting. I'm hurting because I've realised that, regardless of this pregnancy's outcome, these will be my last children and my only boys. This pregnancy will be a blessing for the rest of my life or a painful memory......triggered frequently by what are seemingly innocuous activities to others like seeing kids in a double pram

The next few months will have a big impact on my life but all I can do is hold on and cross my fingers.