Saturday, March 01, 2008

The waiting is killing me

I really don't know how I will make it. I am very frustrated that I was told this after the time that I could do CVS. We definitely would have done that and we already would have had the results. Instead, it is just one long day after another, and it is still 17 days until the actual amnio, then two days to get the FISH results (preliminary results that will be able to tell us if the baby has trisomy 13, 18 or 21). Not to mention, when I asked the nurse about getting FISH results, the nurse couldn't really tell me if they even do FISH results. And even if the FISH results are positive, we have to wait 7-10 days for the full results. We are most likely looking at the end of March at least. I've talked to my parents and they are coming out on the 20th of March, but who knows if we will have any results during the time that they are here.

I called the other day and got my actual numbers. My hCG and my PAPP-A should be around 1.0. My hCG MoM is .58 which is bad, but it isn't as troubling as my PAPP-A MoM number. My PAPP-A MoM number is .21. In the clinical studies, etc. that I've looked at, I saw nothing that indicated anything good with a PAPP-A number that was below .3.

I honestly have very little hope at this point for good news. There just isn't any good news out there with a decreased hCG AND a decreased PAPP-A, and mine just aren't decreased, they are very low. My PAPP-A is in the less than 1% range . That means more than 99% of people have a PAPP-A higher than mine. I think my hCG is below the 5% level. Everything just points to the very real liklihood that this baby has trisomy 18. And I know that these are just numbers and don't mean anything definitively, but it is so hard to hold on to hope when nothing leads me to believe that I should. If the baby does have trisomy 18, all of the options are heartbreaking.

We decided not to tell our children until after we knew that things were fine, and now we don't think that they are, so we decided that we aren't going to tell them about the pregnancy yet, and so I'm just trying to keep all of this from them, including any future plans that we need to make. Lots of people from our church know that I'm on bedrest because of the placenta problem and so I have begged them not to say anything about the pregnancy where my children are, but I am afraid that someone will slip.

This is so hard.

-Andie (13 weeks 3 days)

1 comment:

Trisomy 13 Life with Natalia ~ Transformed by Love said...
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