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.