Monday, May 5, 2014

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

Sunday, April 20, 2014

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.

Friday, April 11, 2014

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.

Monday, March 31, 2014

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.

Sunday, March 23, 2014

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.

Wednesday, March 19, 2014

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?

Monday, March 3, 2014

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.