Its an Enigma

It dawned on me today that its true. Being in the wrong place at the wrong time really does make a difference (and all this time I though it was simply enough to be in the right place but at the wrong time...).

Dealing with another high-risk pregnancy brings with it stark reminders of what our last high-risk pregnancy was all about. It also forces you to relive many of the aspects surrounding the entire pregnancy. And in the end, it got me to thinking, if we just switched around the issues, we would have had at least one healthy baby out of it all.

You see, the twin pregnancy had the complication of pPROM (the ruptured membrane). That rupture obviously jeopardized the entire pregnancy because of the increased risk of infection (which in the end is what triggered labour). With CDH, the baby is exceptionally healthy until he/she needs to breath on their own - thus, its quite common for these pregnancies to go right till term.

Thus, if we switch things up a bit here's what our situation would be:

Healthy Baby Boy (HBB)

pPROM'd Baby Boy (PBB)

CDH Baby Girl (CBG)

Option 1

Twin - HBB & CBG (would have delivered at term, for twins anyway, and we would have had a HBB (healthy baby boy) and NICU time for the CDH Baby Girl (CGB) with 50% survival. 1 survivour (possibly 2 - still to be determined).

Singleton - pPROM baby with infection causing early loss - 0 survivour

OR Option 2

Twin - CBG & PBB (both babies suffering some sort of complication with the pPROM baby causing early labour/delivery - 0 survivors

Singleton - one healthy baby. 1 survivour

Its morbid and senseless thinking I know. I can't change it and I can't rationalize the why's behind it. Like a Rubik Cube I just keep turning this impossible puzzle over and over trying to make sense of how it’s supposed to click into place knowing my superbly normal human abilities simply aren't enough to get the job done with any type of satisfaction.

Instead, the only chance of success is to pull all the little stickers off and re-attach in the completed format (hoping no one will notice that I cheated and that my patchwork is enough in the end).

God – I thought we had a deal

Ok, so maybe I made a deal with you and it wasn’t fair to say “if you agree don’t say anything”. Still, COME ON!!! When will you stop collecting so many little angels up there?!?! AND, I wish you'd stop trying to collect so many from us!!

I know we’re not alone. Many others have faced losses (hardships) far beyond what any one person should ever have to face. Then there are those who suffer different types of suffering. It doesn’t seem fair does it?

Trying to make sense of it all is enough to leave one certifiable.

Still, I came to my own rationalization (whether right or not) it allowed me to make my peace with God and to accept that he’s not testing me, he’s not punishing me and he doesn’t have a plan. It just is what it is.

I’ve come to accept that God doesn’t choose one person to be blessed by something wonderful only to choose one person to suffer pain. He just lets life happen (the good and bad) and at the end, we can only hope he’s there waiting for us to reminisce about the good times and wipe all the tears caused by the bad.

Miracles – don’t even get me started on miracles!!! If some believe they happen and it makes them feel better (even if those miracles don’t happen to them) then so be it. For me, I choose to believe they don’t exist (besides how many true miracles are there? Really. The definition of a miracle is something that defies all explanation and for the most part, things can be explained, no matter how small the odds are).

And besides, what makes Bob over there so freaken special that he gets one and I don’t?? Ok, so maybe I’m not the pillar of prayer and sinlessness but I do know many ‘good’ people who seriously needed a miracle (or two) and were left high and dry whereas Bob, despite all his partying, drinking and cursing probably wasn’t the most deserving of the Lotto Max $45 Mil.

Praying – much to my mother’s dismay I stopped praying a long time ago (just over 3 years ago to be exact – coincidence?? I think not). Essentially, after my enlightenment of God and the expectations I should (and would now) have of him, it just didn’t seem fair to pray. Afterall, asking for things (even those things with altruistic purposes) are still requests for him to ‘bless’ you – implying that others, somewhere else are less blessed. What gives me the right to ask to be blessed over someone else?

Some may say “You don’t ask God to bless you; you simply thank him for what you do have”. Well, let’s look at what I have. I have my health, I have my daughter, I have my husband, I have my house, vehicles, food on the table, heat and (most) of my bills paid. Yes, it’s wonderful isn’t it. But if I thank God for it, it implies that I’ve been blessed with something and because I know others out there don’t have as much as I have, that implies that I’m more deserving of those thing then they are – and I don’t believe that I am. I believe it is incredibly unfair that there are so many who starve, who are homeless, who don’t have their health or loved ones surrounding them. What makes me so bloody special that I deserve so much and they don’t? Why should I thank God for treating others so unfairly?? After all, isn’t it better serving to God to think less of myself and more of my fellow man? Thus, I should be justly pissed off for humankind in general - With 7 billion people on this earth, I’m inclined to believe that the majority is living with some sort of hardship.

So we go back to my epiphany from a few years ago - Life just happens. Sometimes it’s good, sometimes it’s bad, for some they get a little bit more of the good, others get a little more of the bad. For others it simply sucks (or is simply really, really great). God doesn’t deem one more deserving over the other – he just holds us when our journey here is done and lets us laugh or cry depending on the luck you had.

Still, after all is said and done, I did have a conversation (albeit a bit one-sided) with God and I did strike a deal (sealed when I said that if he agreed he just shouldn’t respond). It seems to me that maybe God was just busy greeting all those happy/sad souls into heaven and missed my memo.

Suffice to say, when I arrive at the pearly gates he better have a lot of Kleenex there for me (preferably with lotion) because I’ve got a lot of crying to do (rest assured, I have a lot of laughing to do too – let’s just hope that in the years to come our pendulum starts to swing a little more in the direction we prefer).

Not lightening twice, just weathering a tornado this time...

It’s funny that for some people, when things are going well they need/want to blog. They want to share with the world how good things are. For us, when things are good it’s a huge effort to sit down and write; to take time away from a life that is for all accounts, perfect and instead of living about life, writing about it. It’s so contradictory to what works for us and we have to force ourselves to do so because we know that for some, this connection of photos/videos and words are the only connection some have of our day to day life.

But when things turn sour, for me at least, I need to reflect and what better way to do so than with words. Words allow you to come back time and again and revisit the emotions that hopefully will one day be a simply fleeting memory rather than the all-encompassing waves (both euphoric and not so much) that we’re experiencing again.

A few months ago our lives were further enhanced by another blessing. Our 5^th (1^st try for #2) IVF cycle was successful and we were once again expecting a new addition to our family. After much fear (after all, nothing ever comes easy for us) on New Year’s Eve Day we received the news that we had an additional celebration to add to the day – a healthy heart beat.

For the next couple of months that euphoria was enough to lull us into letting our guard down and make us believe that maybe, just once, something would come easy for us (if you can say paying $10,000, traveling copious hours/kms to a clinic and allowing a team of medical professionals easy access to your nether regions easy) and that we would be lucky to have another baby in one ‘relatively’ easy shot.

Rest assured someone up there didn’t forget about us (not in a good way either). Just when we let down our guard and assumed that life would allow us smooth sailing (after all, didn’t we pay our dues with all the previous hurdles we’ve encountered) we learned that this baby was at an elevated risk for Down’s Syndrome. Certainly though, the odds were still in our favour (but when has that ever stopped bad luck from knocking at our door) and we, after a bit of reflection and soul searching, opted out of the invasive testing and opted to let what will be, be. If this child was affected by Down’s Syndrome, then we would face that challenge. After all, a healthy baby was our goal.
Then, we had our much anticipated Anatomy Scan. The wonderful ultrasound where we have a chance to see the baby where he/she actually looks like a baby (not that little alien that’s been renting space down there). It was also the much anticipated time where we would learn the gender (this time we wanted to know).

We knew there was a chance that there would be added indicators of Down’s (soft markers they call them) and we knew that even with those markers, we would carry on.

The wonderful news is: It’s a girl. What we weren’t prepared for was the ‘other news’. After 2 ultrasound technicians looked at the baby (separately) and the radiologist came in to take a look we knew that the news wasn’t good.

Congenital Diaphragmatic Hernia (CDH). When we heard the term from the radiologist and a quick description (a hole in the diaphragm) we thought, ok, that’s not that bad, it’s not like one of her heart valves isn’t working. Little did we know that we may have been better off with one of her heart valves not working.

We’re still waiting for a lot of information and we expect to learn more about where our little one lies on the spectrum of degree of severity of CDH.

This at a minimum is what we know:

Overall survival rates are 50%. Depending on where you lie on the spectrum will better determine what the baby’s survival rates are. 95% of CDH survivors will have life long effects of the defect in various forms (of course depending on the degree of severity) and almost all have diminished lung capacity - no future Olympian here. (ETA: this is not true. In fact, during the 2012 Olympics one of the marathon runners from Australia was/is a CDH survivor.  They can be Olympians, even Olympians outside of Ping Pong and Curling).

Effectively, because of the hole in the diaphragm when the baby sucks in to ‘breath’ it pulls organs from the abdomen up into the chest cavity. The additional organs then prevent the lungs from developing to the size required to sustain normal lung function; often, not enough to sustain life.

We know that there are enough abdominal organs in her chest cavity to cause her heart to be pushed to the right side of her chest. We also know (as mentioned by the radiologist) that her bowels are currently in her chest. The radiologist also mentioned that she has seen worse cases (she didn’t elaborate whether she’s seen worse cases that survived). She also mentioned that she’s seen severe cases survive and not so severe cases not make it.

We believe (assuming since the heart has been pushed to the right) that the hole is on the left side (the most common).

CDH is also often associated with other defects (heart defects) and other issues (chromosome abnormalities – ie Down’s). We do not know if the little one has any other underlying issues.

For now that’s all we know.

We are waiting to hear from Women & Children’s hospital in Vancouver. I anticipate we’ll be seeing the same Perinatologist team we saw last time. Not sure yet if that’s a good or bad omen. We hope to know more during the week of March 28-Apr 1 and when we do know more, I’ll be sure to update. In the meantime, you may have to sit back and put up with my rants.

Waiting Room

Renee and Dwayne here in the waiting room for our ultrasound.
I'm planning on getting a photo of the ultrasound to post here so we'll see how it goes.

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Lounging Livy

Here we are at the Maple Leaf Lounge enjoying our time before the tin can. (Dwayne)

Now all we have to do is drag Dwayne away from the draft spout. (Renee)

Little does Renee know, but I'm about to hit up some Red Wine. Why not, I ain't flying the tin can. (Dwayne the Lush)

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