the not so merry-go-round

sorry in advance for the negative post. not finding to much to be cheerful about this week.

On Wed., the doctors told me that baby's heart was failing, unexpectedly, for no reason that they could see. They gave me a prescription of heart medication which will go through my blood stream to his. And said come back in 4 weeks to see if the med's helped.

Then on Fri., different doctors said that 4 weeks was too long, to come back in 2 weeks. And that the only reason to come back was to arrange autopsy procedures, because he would probably be born stillborn, and they need the tissue immediately after death. I took that to mean that he was going to die very soon, and I was shocked that i would have to say goodbye to him so fast.

On Mon., another doctor said to prepare for him to be born alive, and what interventions we wanted - comfort level where we let nature take its course, or gung-ho, where they do everything possible to keep him going.

Yesterday, Wed., the doctors said that since I've started the medication, I've voted for intervention, and they can't now let him go, they need to keep intervening. So he may be whisked away if he shows signs of surviving for a bit after birth, wherever the doctors say he needs to go.

Part of the problem is that his condition is so unusual, that they have no idea what to expect. They don't think the medication will help, and they still think he will most likely die very soon. But since they don't know, and he may possibly live, they need to be prepared.

The other part of the problem is that they won't know if there is anything else going on until after he is born. But they think he has some severe complications which mean he is "uncompatible with life". So even if he is born alive, they may not do anything because he wouldn't survive for long anyway.

But what a crazy ride it has been for us. We are at the point where we are all hoping he is stillborn, so that it will be over. I never in a million years thought I would ever write that. I would have thought that anyone else who wrote that was a terrible person for giving up on their son or grandchild.

I guess we all hope he will be fine, but the doctors keep saying they don't think he will be. And the uncertainty is so hard.

I'm supposed to get an ultrasound next week to see how far the heart failure has progressed, and I go back to vancouver on oct. 27 (if he makes it that far) where they will look more in depth at his heart, and tell me if they want to pursue more interventions, or if we should prepare for palliative care. Unless they still can't tell. And then we'll start all over.

So far we are okay. the kids seem fine, we seem fine. Of course nothing has really happened yet. The next few months will be hard, but I think we'll be okay - we have a nice strong family bond, that will help.