Tuesday, October 21, 2014

1st Tri Screening Results

We finally got our bloodwork results back from the first tri screening. They were not great. 

Our genetic counselor had prepped us for receiving higher risk results due to our history but our risk for Trisomy 21 (Downs' Syndrome) came back higher than expected. Based on age alone it would have been about 1 in 1000.  Add in our history and it should have brought it to 1 in 500ish.  Ours came back at 1 in 160.

I know that's still less than a 1% chance.
I know this 1st Tri Screening can result in false positives.
I know that if our baby ends up having a Trisomy THIS is the one to have since 85% of babies born with DS survive and many of them are able to lead mainly "normal" lives.

But I also know that our risk of neural tube defects (NTD) with Petey came back last time at 1 in 1300. And that I was that "one".
I know that this increased risk of T21 doesn't just mean our baby's risk of DS is increased but that it is also a marker for NTDs.
I know that there is nothing I can logically do right now but wait until our early anatomy scan on Nov 6th to see if yet another baby that we have created has birth defects.

Besides just waiting to see what the A/S shows we also have the option to have another blood test done this week (the AFP) which would give us a better idea of NTD and DS but if the results come back positive there is still nothing we can do but wait until the A/S on Nov 6th to see just how bad it is.  We have elected not to do that to ourselves. I am trying so hard not to let these results make me crazy. If we were to get bad AFP results I would be a fucking wreck until Nov 6th. (Now, I'm just kind of a wreck.) 
If there are issues identified through the A/S then there are whole slew of other diagnostic tests we would look into but at this point I'm trying not to get ahead of myself.

I'm trying not to think about the 'what-ifs'. 
I'm trying to stay positive.
I'm trying to believe in the numbers being on our side this time.
I'm trying not to disconnect from this pregnancy and let the fear take over.
I'm trying to pretend that I don't know as much as I know about everything that can go wrong.

But after what I have been through and what I have seen with so many other women it is nearly impossible. I am so scared.

I really thought infertility was supposed to be the hard part. But my life since March 18th has been a whole different kind of hard.  It doesn't matter how much you've had to go through; there are no guarantees.

And now I have a whole other sense of deja vu; similar to the feelings we experienced the night we found out Petey had problems and we had to wait for the appt with the Periontologist the next day. (Except now, my "next day" is not for another 2.5 weeks.)  It's the feeling that your heart is trying to escape from your chest; the sense of panic that comes on suddenly making you stop in your tracks; the inability to focus on work; the overwhelming sense of dread that you try to squash deep down inside but it just keeps creeping back up.

I am regretting getting this screening test. I felt I was doing my due diligence by getting as much info as we could on a decent timeline.  After our integrated screening results with Petey gave us a false negative I had no confidence in that "more advanced" screening so I figured this was the way to go. And I was scared, but I honestly thought things would be okay.  I hope things really will be okay.

After everything, I really don't feel like it's too much to ask for. But what the hell do I know?

November 6th.  It cannot get here fast enough. (Understatement.)


  1. You deserve a healthy child. I pray you take home a healthy beautiful baby. I hope the next few weeks go by quickly and you receive news that puts you at ease (as much as possible).

  2. I am so sorry. After all you have been through, you deserve a free pass. I understand your frustration and anxiety over the odds. Even though the risk is very small, after being a baby loss mom you start to think in terms of being singled out. I'll be praying that your little one is healthy and that the anatomy scan shows nothing but great things.

  3. Sending so much love to you and Rainbow. Keeping everything crossed for a great a/s and hoping you are able to find some comfort during this difficult wait. <3

  4. I pray that Nov 6 comes quickly and brings with it really great news about Rainbow. I am so sorry you're in this position right now, I wish I could hug you. I'm keeping you and Rainbow in my thoughts and prayers, and sending all my love and strength your way. <3 <3 <3

  5. Sending you all the love and strength I have... I am praying November 6th gets here quickly and with good news. And in the meantime, I hope you can find some peace & comfort. Love you.

  6. Sending you so much love and tons of hugs. I am sorry the test results are making you feel doubtful and less at ease. I hope time passes quickly and the 6th is here before you know it so you can get some reassurance that everything is ok. <3 <3

  7. So sorry to read this. I am sending you strength and light, and hope that the time between now and Nov. 6th passes quickly and easily for you. Please know, that although our circumstances are different, I know you will survive whatever happens. It may feel like the sky is falling and the world is crumbling but you will be stronger than that. I have been in that spot and I am still here. I am hoping with you that this is all for nothing and that on Nov. 6th everything is wonderful and this is a false alarm. Try to do whatever it is you need to do to get through it - say "No" when you need to, ask for help when you need to. Just be kind to yourself. Sending you hugs....

    1. Thank you :'-) I think of you when the fear/anxiety starts to rise and it helps to know that if the worst happens I will, of course, survive. Your strength amazes me - I hope it doesn't bother you to hear that - and it helps me feel a bit stronger too.

  8. I'm so sorry the results were not what you wanted and needed. I am sending you calming thoughts and a busy next few weeks so that they pass quickly until your A/S.

  9. I am so sorry. I am sending virtual ((hugs)) and prayers for strength as you wait for Nov 6th and whatever the A/S may bring.

  10. I am so sorry (and so amgry at the universe) that you couldn't get the perfect results that you deserve. I hate that you have another 2.5 weeks before you have more answers. You are an amazing, strong and courageous woman. I'm hoping these next couple weeks fly by and your a/s shows a healthy rainbow in there,

    Please do what you need to take care of yourself. Always rooting for you!!

  11. Thank you all so much <3 <3