Friday, April 15, 2011


20 weeks, 23 days post rupture

We bought the lap top I'm currently typing on about a week before Aidan died. I was almost 23 weeks pregnant, and we were starting to look towards 'what will happen next', including possible hospitalization. We knew I would need a lap top if I was hospitalized for any length of time, so we ordered one, even though cash flow was short at the time.

This lap top arrived 2 days after Aidan died.

We've got a lot of use out of it this year though. I'm glad we bought it, even though we didn't get to use it for its original purpose.

But wait! Not so fast! Here we are again a year later. On bed rest, scared, possibly facing hospitalization again. We were certainly correct we'd need one (how nice to be right about one thing!) This lap top is coming in handy.

So as I sit here and play my 147th game of Solitaire, I have lots of time to think. About the last couple of years of our life, about Aidan and about Acorn and what comes after. I have so many questions, so many thoughts. I'm trying not to think too far into the future, but its hard.

My main question is how and why did this happen, both to Aidan and Acorn? If it is genetic as the doctor thinks, how 'strong' of a genetic link is it? 1/2, 1/4, 1/50? Placental issues are generally more likely in boys. Therefore if this is a boy that would go along with the theory. If we had a girl would it be as likely to occur? And how sure can we be of that? Sure enough to do (expensive) IVF and pre-genetic implantation diagnosis to assure ourselves of having a (healthy?) girl. It would be worth the money if it was a (fairly) sure bet, but I don't think doctors could be sure enough to support that plan.

But if a Breus mole is a rare placental complication, with very few people (or anyone but me?), experiencing a recurrence, then how sure can we be sure it's genetic? Each baby is always genetically different. Did this baby just happen to get the exact same genes as Aidan to cause this? Maybe it's not genetic. The only known constant in both pregnancies is me. What if there is some cause originating in me? A clotting disorder we didn't test for? An autoimmune disorder attacking the placenta? Hormonal causes? Something else that we wouldn't even know to look for? Could my heart be a causal factor after all? Not many Fontan patients have had children, so what if this is somehow related to my heart in a way they haven't thought of or explained yet?

And I wonder about how many times I can do this. If Acorn doesn't make it, will my husband and I have the strength to try again? If we do, how long will it take to get pregnant again? Are there any precautions we should take 'the next time'? And if there are, why didn't they recommend them for 'this time'? Can we mentally stand the long wait through the first trimester (with all it's own inherent risks) to the second trimester where things seem to go wrong for us? And what if it happens a third time? It's almost too horrible to contemplate. But what if it's the third, (or fourth? fifth?) pregnancy that works out for us? I would never want to miss out on that out of fear and sadness. But how many children might die in the process? Is it even fair to bring them into being if they have a (sort of) fatal genetic defect?

Which brings about the question of what exactly is the (potentially) lethal aspect of this disorder? The Breus mole likely starts things off, but really it's the ruptured membranes that caused all of Aidan's problems and is the major problem affecting Acorn at this time. Aidan didn't actually die due to his placental problems. He was born alive and appropriately sized, therefore he was getting adequate blood flow right up to the end. Aidan died due to an infection I got from having ruptured membranes and associated underdeveloped lungs and prematurity. If the Breus mole had been exactly the way it was, but I had never had pPROM with Aidan, would I currently have an 8 month old? If we can't prevent the Breus mole from happening, could we at least prevent the pPROM? Or hey even 'delay' the pPROM for at least 10-12 weeks (preferrably more!) until our baby has a better shot. I'm not sure how possible that even is, since I didn't seem to have an incompetent cervix, the one (sort of) preventable cause of pPROM.

Don't get me started on what happens if Acorn makes it to the NICU. That is what I'm hoping for of course, but I want him to be there at an older gestational age, getting healthier, bigger, heavier, HOME! I'm not sure how I will react if we have a very sick, small 24 weeker. I know the complications that can result from that, how badly things can go, how much those little babies can suffer. And how difficult decision making can be for parents in those cases. Sometimes as a nurse in those situations you would wonder how parents could let their child suffer, left on a ventilator, unable to move, facing infection after infection, surgery after surgery. At what point do you say "enough is enough?" When I was a nurse, I thought I would know if it was my child when to say enough. But Brian and I haven't been able to 'throw in the towel' during either of our high risk pregnancies, so what makes us think that decision making in the NICU is going to be any easier?

As you can see, I'm having a lot of thoughts lately. It's amazing how much thinking you can do while playing Solitaire.


  1. I've had SO many of the same thoughts as you. How terribly frustrating and just tragic that there simply aren't any answers. With all the miracles that modern medicine has given humanity, how is it that you and I can't get some answers?

    I'm so glad each time you post to hear that Acorn is still hanging in there. Praying for a miracle!

  2. I have been thinking of you so much. I don't know what to say really, but I just wanted you to know that. Your story is breaking my heart. I wish with every fibre of my being you weren't going through this.

  3. As always, I am hoping and praying for you!

    You give strength to all of us Momma's trying to get through difficult pregnancies!

    Lots of Love! xoxox

  4. Glad you have the laptop but don't obsess with Dr. Google, even if there is accurate stuff up there it can make you crazy. But the internet is full of other distractions so I'm glad you have it available. So glad you are one day closer to answers, thinking of you.

  5. Wanted to let you know I've been reading, following what's going on with you and Acorn, and thinking about you.

    All of your questions really hit me - I could imagine thinking similar thoughts, asking all kinds of questions. I read such love, thoughtfulness and vulnerability in your questions - life and death questions, moral/ethical questions, etc. There probably aren't any easy answers, just what's right for you, and doing your best in the moment, which changes from moment to moment.

    Love to you and yours.

  6. Emily,

    I hesitate to respond to any of your questions because my knowledge is so so inadequate and I don't just want to throw my two cents in for the sake of it. Simply put, your questions made me think and think and think some more. I recollected reading another woman's blog, Lara, that was eye opening for me many months ago. Because she printed her email exchange with her doctor and his subsequent response, it really made me fight with my doctors to be treated like I have IC in my next pregnancy, even though the MFM wants to wait and see and just treat the pre-term labor.

    Anyway, it looks like Lara is a follower of your blog here so I hope that she doesn't mind that I'm posting the link to the specific post about the doctor's opinion of 2nd trimester losses.

    I know that your situation has other variables than just your water breaking and therefore this may not provide any solace. It was just a longshot, wondering if maybe you could contact the doctor's office and get a long-distance opinion or be referred to a canadian doctor with a similar conviction about 2nd trimester losses.

    Thinking of you and Acorn.

  7. I don't have any answers of course, but I ask myself these same questions. My son died due to placental insufficiency and all I can play in my head is the misery of my body's failure and the question of what will happen if/when I find myself in a viable pregnancy again. Oh how I wish there were answers to these most difficult questions...

  8. I remember those thoughts... The what if it happens again... It happening again... and again... and again... The fear, the worry. I dont have anything to say that can take that away... that can make you feel "better". I wish that I did.

    Know that I'm holding you and your sweet family in our prayers with love and so much hope...