Giving up what you've barely had

Tonight was devastating.

Our family has been sick for the past week. Fortunately, the two that can least afford to get sick are the only ones to not have. The milk that my wife is expressing still needs to make it in to the hospital though. So at the moment, it's my job to make the drive in at night to drop off the milk.

I dropped off the milk and didn't see them at all as I was afraid to go near them whilst I was sick. That was the right thing to do. I don't regret it at all. But getting back in the car I felt horrible. It felt devestating.

I've only held my boys once since they were born almost a month ago. Very rarely have I been there when the opportunity has arisen. They are now at their strongest and weigh just over 2 kilograms each. There will be more and more opportunities to hold thme now that they are out of their incubators, off their IVs and hopefully soon off their CPAPs.

My boys will be a month old in another week and I still feel like I don't know them. I almost feel like they are not mine at times. They don't seem that different to any of the other babies in NICU. They have a little name tag that is there that has the first names that we have given them and my wifes maiden name (we didn't get her patient file updated). I want them home with me but thank god they aren't given the germs in the house at the moment.

I think of myself as a pretty laid back and logical guy and it takes a fair bit to rattle me.  Logically, I know in another week I'll be healthy again and will be able to go in and see them. Logically, I know they are in a much better place than being at home at the moment. Emotionally, I am devestated

How do you help someone through a high risk pregnancy?

We often look at the darkest points in our life and think how they could have been different. Imagine if someone had have told me this or shown me that, how I would have dealt with that situation differently. So if I had the opportunity to go back and help me out when I was really struggling with our high risk pregnancy at around 20 weeks who would I send? And what would they show me? I've been thinking about this and I can honestly say I don't know.

Probably the most common thing you hear from other people is "I have a friend of a friend that had a complicated pregnancy (that has nothing to do with your situation) and blah blah blah...". I probably sound like an unthankful bastard reeling off that last line. Don't get me wrong, it's really nice that people care enough to want to try and find ways to reassure you and that might help some people but it didn't really do much for me. I know that for that story there are plenty of other sad stories told and even more sad stories that mothers and fathers out there never tell. So in essence, references to past positive events didn't help me.

However, I can tell you that references to negative situations definitely don't help. Why you would pass those on to someone is beyond me. "Lets hope that blah blah blah isn't the case because then you'd be screwed" was said to me word for word minus the blah blah blah part. Some people are inconsiderate and then there are others that I guess simply don't know how to deal with certain situations.

So what would I do if I knew someone was going through a high risk pregnancy? I think if I knew them well enough I'd take them out for a beer or a coffee. I wouldn't talk about the topic that is probably the only think they can't stop talking about in their heads....unless they brought it up of course. I would take them to a movie where a distraction might take their mind off things for a while. And I think most importantly if I didn't think they were talking to anyone I would try and plan the seed that it might be a good idea. On top of that I would offer to take whatever responsibilities off them (eg kids) so that they could do those things for themselves.

One of the best things I did along the way was to make it along to a social basketball run on a weekend. For the better part of a few hours my mind "worried" about inconsequential things like which pass to make, when to shoot and who to defend. These problems demand your attention, you have to immediately react. Whilst you want to make the right decisions, ultimately if they go wrong they are not important. If you play any sport socially and think what just happened matters any more than having another crack at the next play then you and I probably wouldn't play well on the same team :)

In summary, I think there are simple acts of kindness you can do for people. I think anything that can take their minds of things is a good thing. The irony is that I'm sure people gave me the advice along the way to "try and think of other things" but it's just so hard to do. I think at best you distract someone temporarily with some kind of external stimulus (ie a basketball, a chinese burn maybe) but that's about as far as the distraction can go.

30 weeks along, its time to depart

I'm sitting in a birthing suite, my boys have made it just past 30 weeks....just. It's time to depart.

TTTS Rollercoaster: An April Fool thinks things are looking safe

Ever ridden on a roller coaster in the dark? Or some sort of action packed water slide in the dark? At the moment, I feel like that's where we are. We're moving slowly and I can't quite work out if there is a gentle meandering pace to the finish line or there are some sudden twists and turns around the corner. I know one thing, my white knuckles have gradually released a bit over the past few weeks. I wouldn't say they match the rest of my skin but they have definitely "pinkened" up a bit.

I've asked our doctors about survival chances at different points along this journey and they have been cagey about it for obvious reasons. Parents in this situation are worried and want certainty in what is an incredibly volatile situation. But recently when I asked about survival one of our doctors let his guard down and the answer was "If they were born tomorrow they would make it". Is that a safe thing to say? Of course not and he quickly added that there are no guarantees and that they would make it provided nothing suddenly went wrong. I understand that opens him up to a "but you said..." conversation if my boys didn't make it but I heard the message that I wanted whilst being realistic (at the moment) to understand how life works. I understand there are no guarantees and I'll be devastated if my boys "beat the odds" now and don't make it but to hear our doctor talk like that felt incredible.

Tomorrow we'll be at 29 weeks which also happens to be April Fools day. I joked to my wife about announcing "Welcome Beavis and Butthead in to the world" or some equally embarrassing names. She quickly pointed out that it wouldn't be funny to make people think our boys had been born at 29 weeks as that was far too early. I completely agree but it's funny that I no longer see that as drastically too early. I've read the stories on different premmie ages "Lil Aussie Prems" website and I know there are still plenty of complications prior to 30 weeks. But at 29 weeks tomorrow with the support of modern day medicine we've reached something of a safer point.

The ground beneath the roller coaster is now covered in soft grass which would no doubt hurt but only temporarily. There is still the occasional rough patch that we could hit but there are a couple of bouncy castles too!

My wife now fits in to her 38 week belly cast from our youngest daughter which means her body is likely to go in to labour sooner rather than later BUT I'm feeling incredibly positive as the days sneak by.

28 weeks and 6 days today.

How big is your biggest issue?

How big is the biggest issue in your life right now? It's funny how we always have big issues, if we don't we find small issues our big issues. The previous big issues in my life would have been laughable at this point in time.

So, how big are your "big" issues right now? It's a question most of us in our happy 1st world countries rarely ask ourselves. When we talk about our problems it includes 1st world catastrophies such as "My hot water stopped working", " I had to wait 10 minutes for my coffee this morning" or "My baby woke me up 3 times last night". I'm no different, I've had my fair share of first world problems and can relate to others. Have you ever chimed in at the end of someone recalling a relatively small problem with "It's the worst when that happens"? I've noticed that I do and I'm making a conscious effort to stop.

What's the biggest issue in my life today?  I want my unborn boys to live. I've never had to worry about my children in this way before and now it is dominating every minute of my day. Most of the time the thoughts are positive. 27 weeks is good, right? Well it's better than anything less. These positives thoughts are also partnered with worries. Are my boys going to make it? If they do, are they going to be healthy? How am I going to cope with the addition of twins to the family? Am I going to find time to do the things I enjoy like catching up with friends or playing basketball? Are each of these questions progressively less of an issue?

I'll never forget the night that as we went to bed my wife said "I hope my babies don't die". I'll never forget the nervous wait outside the theatre room as she had a surgery at 18 weeks and 3 days when our medical team had previously told us they prefer to not operate until at least 19 weeks. And I both hope and fear I'll never forget watching my boys being whisked away in to the Neonatal Intensive Care Unit (NICU).

I'm a guy that frequently forgets the date, heck some days I even forget what day it is! Yet every single day for the past 3 months I can tell you the day without hesitation. It's the first thing my brain thinks about in the morning and is in the forefront of my thinking until I go to bed.

Today is 27 weeks and 5 days.

Big issues are happening like this every day but fortunately they don't happen every day in each of our lives.

Where there is smoke (and pregnancy) there is fire!

EVERYTHING the doctors have asked my wife to do, I've watched her to do without any hesitation. Today I was paranoid about her driving our car for the first time in months as she'd previously been not able to due to morning sickness and then the impacts of TTTS. In the past she'd driven to the shops and then felt too ill to drive back home. I was uncomfortable about this happening again. She was excited to be catching up with a friend for lunch but just for me she found another way to do this that didn't involve her driving. She could see my concern for her to catch up for lunch was smaller than my concern for her and my boys well being. Was my fear rational? Probably not but she still put our boys first.

Our trips to hospital recently have been relatively positive and there is much to be happy about but there is one thing that makes me incredibly angry during every trip. As we head to the hospital entrance there are always 2 or more pregnant women puffing away on cigarettes. These women have a right to choose, it's a free country, right? Who am I to judge? Well, right now I'm an optimistic father going back and forth to a hospital for HIGH RISK pregnancy and watching my wife do EVERYTHING she can to give my boys the best chance possible.

I'm a reasonably liberal guy and I believe that adults have the right to make their own decisions if they don't impact others. Heck, if someone chooses to smoke knowing the consequences then that is their life. It's not my right to take a cigarette away from them any more than it's my right to force a non-smoker to have a cigarette.

So why do I see this issue differently? Well it absolutely pains me to think that these poor developing people may never make it out of the womb due to a conscious choice by their mother. Have you ever heard anyone say "Gee, I wish my mum smoked whilst she was pregnant with me"? These children are simply not getting a fair chance. Even if they do make it, is a pregnant woman that puts her need to smoke ahead of her child's need to survive going to change her priorities once her child is born? Maybe but I'd dare guess that in many cases they would not. We live in a world where we try to preach equality and it pains me to see these kids not getting an equal chance.

Ever heard anyone advocating child abuse? No, I think it's a "wrong vs right" scenario that is obvious to most of us. In Australia, we now have laws against smoking in cars with children. Government has stepped in and said that parents no longer have the right to choose to smoke when it negatively impacts children around them. If government doesn't draw the line, who should? Well, I hope that in the future more and more pregnant mothers draw it themselves for the benefit of their kids.

My boys have been incubating (smoke free) for 27 weeks and 1 day today. What can we do to convince all mothers to create this environment for their unborn children?

The TTTS Rollercoaster: A smoother patch

We reach 25 weeks tomorrow. The slow grind towards meaningful dates has quickly been replaced by weeks of incredible momentum. 25 weeks, whilst being far too early is the start of a golden passage in which the chances of survival start low dramatically increase whilst the chances of complications/disabilities start high and dramatically decrease. So if our boys are born any time soon they'll be fine, right? No, I'm not kidding myself, if our boys were born tomorrow or even in the next fortnight things will be bleak. But for the moment, every day is gold, every week is even better.

We had another scan on Friday. It started with the usual pee check and weight check. My wife had lost weight and in my mind I positively thought "that's because the boys have been stealing all the goods". She then said "I hope my weight loss hasn't impacted their growth" and I immediately followed her down the negative road. Until the scan revealed that the boys had grown according to the normal growth curve and and their amniotic fluid had not increased, very positive signs indeed. All my wife has to do is gain some weight so we've got some anti-diet foods to supplement the healthy array of diet foods. Cream and cheese are going on a lot of meals.

At the baby-saving surgery my wife had at 18 and a half weeks the specialist informed us that after having the surgery, pregnancies do not normally last more than 10 weeks. That is just 3 and a half weeks away now but for some reason I am optimistic that we'll be in the small percentage that goes beyond 10 weeks. I'm hoping for a slightly late birthday present which means my boys will arrive in late April which is around the 32 week mark. It's unlikely but that's what the optimist in me sees. Heck, even the pessimist is sure we're reaching 28 weeks.

So with that sort of optimism what are my problems at the moment? Well, I feel somewhat detached from my wife at times. In between looking after girls, commuting to work, working a 40 hour week and doing housework there is little time to relax with her. And when we do there is little she can do with me and our conversation always gravitates to the pregnancy and its uncertainty. I live with my wife, I see her every day and yet I miss her. In my mind, things will be better once the twins arrive even though I know we will be even busier. It's a temporary pain though and one that I'd like to endure for as long as possible as it means my boys are getting a better and better chance of leading normal lives.

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.

Dealing with Twin to Twin Transfusion Syndrome (TTTS) is a lot like a horde of zombies!

My earliest struggles with TTTS, and the struggles that I think would be faced with most high risk pregnancies, was dealing with ongoing anxiety. At times there appeared to be little to do but think. And for me, the thinking and questions in my head normally led to negative places. Why did the doctor pause before he said blah? I read an internet story that said blah, is that what will happen to us? What could be happening between this scan and the next one? Why is this happening to us? What's the meaning of this? I told myself that worrying wouldn't help but I couldn't help but worry.

Then I realised that dealing with TTTS is a lot like dealing with a contagious disease outbreak whilst fighting off hordes of zombies. Make sense? OK, then let me explain.

In a recent episode of "The Walking Dead" (a fictional, zombie apocalyptic TV series) two sisters talked about their Dad's teachings in regards to crisis. He essentially told them that during a crisis "You don't get to be upset, you've got a job to do and you deal with it." I'm not saying that as husbands or fathers we become robots and we don't get to feel things. But when crisis hits I'm finding strength in making sure my previous fear inspired questions are being replaced by "What's my job?".

Just over a week ago we were told that we had to have a very risky operation within hours or we would likely lose our twins

1. Blood tests were needed but I don't know the first thing about analysing blood. Not my job.
2. The likelihood of a positive outcome wasn't great but I don't get much of a say in fate. Not my job.
3. The surgery was incredibly difficult, only ~10 people in Australia can perform it. DEFINITELY not my job.

So I got to thinking about what was my job.

Who is going to lighten the mood with a deck of playing cards after the serious conversations were over? That's my job.
Who is going to hold my wife's hand? Gee, I hope she picks me for that one. That's my job.
Who was going to fetch her a cold drink? Ok, so there is a nurse that could do that but is she able to be bedside waiting for the request? No, so that's my job.
Who is going to communicate the news to family afterwards? That's my job.
Who is going to manage post-surgery family visits so that my wife still gets plenty of rest? That's my job.
And finally, who is going to find themselves crying a few joyful tears in an empty ward room after receiving positive news about the surgery? I was surprised but apparently that was my job too.

I've found that simple question of "What's my job?" has given me a great deal of comfort. Questions like "Why is this happening?" have been largely (but not completely) replaced with questions that I can actually answer. How is my wife feeling today? What can I do to reassure and help her? What can I do to support her? Have we booked babysitters for our next appointment? Are the kids still getting enough time from me and 1 on 1 time with their mother?

Finally, sometimes the answer to "What's my job?" needs to be to find time to look after ourselves.  On the weekend, my job was to organise babysitters whilst I went to play basketball for a few hours with my mates. At the time, I briefly thought "With all that is going on, I don't really need to play basketball?". But I went, I relaxed and I felt refreshed and ready to once again take my seat on the TTTS rollercoaster.

Get on the TTTS Rollercoaster, You don't have a choice!

Friday was a tough, rollercoaster ride.

Last Wednesday night, I took my wife to hospital as she was stressed that she had felt less movement. The ultrasound showed healthy babies but that their TTTS had progressed and the big guy (we're calling Max for the moment) was now in a much bigger sac of fluid. My wife was admitted, monitored closely and our planned assessment for Friday was kept in place.

Friday morning's ultrasound identified further progression and she was immediately scheduled for laser ablation surgery and a reduction of amniotic fluid. The babies were healthy but Max's amniotic sac had grown so big it was at risk of rupturing. The risk of losing one or even both of our boys was high. A flip of a coin, heads he lives for the moment, tails you lose him forever. Flip another tail and you lose them both. I'm thankful that the only other option, to do nothing, would have given my boys no chance. There was no difficult decision to make that I might have spent the rest of my life over-analysing.

The day was a rollercoaster like I've never experienced. I got up to our 2yo daughter at 6am and looked after her until grandma arrived to babysit. With my rollercoaster ticket in hand I drove in to the hospital. I was feeling anxious all morning but when the doctor said surgery was required it momentarily disappeared. Surgery at 18 weeks and 4 days is not good news. They don't even want to consider it before 19 weeks and obviously intervention is preferably avoided altogether. However, I was surprised to find my worry suddenly vanish. My attitude was this is happening, how do I help my wife get ready for this roller coaster? By the way, in case you're still catching up, the rollercoaster is a metaphor, don't ever actually strap your heavily pregnant wife in to a rollercoaster!)

However, as I sat in the waiting room it was evident that I was on a different ride to my wife. I had no idea what hers was doing but mine was slowly creeping to the apex. There was the same tension. There was a lust to just get things moving.  There was fear of what was about to come. Am I ever going to get over this peak? 90 minutes of creeping later, the surgeon came out and time stood still. I didn't know whether I wanted life to be on pause, fast-forward or rewind at that point but the surgeon started talking so it appeared Play was the only option.

Surgery went to plan and your wife and the twins are OK. Your wife is in recovery and should be back up in the ward in around 30 minutes. 

I was surprised I was able to carry a conversation and still ask the questions I had. A minute later the rollercoaster G-forces were pulling me in to euphoria. If there was a "loop the loop" option in that elevator I was taking it, and when we came to a stop, I was buying another 10 tickets as I watched the people anxiously waiting in the queues for their first time.

I got back to the ward and waited, I couldn't wait in the room I had to pace outside the service lifts where my wife would come back from. Minutes passed, 30, then 40, then 45....... "Why isn't she back yet?" I thought as the roller coaster crept back up the rails. Eventually, the lift doors opened and there she was groggy but smiling. This rollercoaster never stops, it just occasionally leaves lets you sit in smoother part for a while.

As I sat in the room aware that the first 48 hours after surgery are the most risky, it was evident that I was still strapped in. To be continued...