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...