Saturday, March 17, 2012

Things that go bump in the night


photo credit: tome chan

All is looking good. As good as good can be right now.

Our big hurdle - both real and psychological - is time. Just needing to get through the next few weeks or so - past the date of our latest loss, further into the pregnancy where things would be a bit safer. We're thinking that might make things start to seem more real, more likely to stick around.

And considering everything we've been through - the six losses, the five years getting to this point - I think we are holding up damn well. For the most part, I am not angst-ing too much or for too long.

There are some back-of-my-head worries, some middle-of-the-night worries, the type that you don't see so clearly, but maybe hear in the background sometimes, late at night bumping around in your head and your heart.

My main fear that I can pinpoint at this stage is a fear that this pregnancy is another triploidy. We've had beta numbers this high once before - during pregnancy number 5 - and it was a triploidy, 69 XXX. Actually, my beta numbers during that pregnancy were lower than my hcg numbers this pregnancy. Gulp. Which I'll be honest, does worry me some. (edited to add: I mean lower at the same day in time...much earlier than now - back in the beginning of a pregnancy when you usually get betas drawn....)

The embryos we transferred this time were tested ahead of time and were deemed normal by microarray analysis. Because the Denver clinic was worried about repeat triploidy in our case (usually a spontaneous, non-age related, not likely to repeat event), they also did FISH testing to specifically look for this. The FISH failed to work, however, on two of the three blasts we transferred this time. So we know there is no mismatch with the chromosomes - no trisomies - but there could be an entire extra set again, which is what triploidy is (microarray only looks for a mismatch between the chromosome numbers, not how many sets there are).

Cue the fear.

I talked to the OB about it last week and she reassured me some. She said that it's unlikely to be a triploidy, but that if it is, I'll miscarry in the next few weeks. If I don't miscarry in the next few weeks, and if the quad screen, nuchal, etc. comes back ok, we can pretty much rule that fear out.

May not sound like much reassurance, but it worked for me. Nothing I can do to change it if this is a triploidy, so it's a wait and see game at this point. OK. I can do that. I can wait and see.

I also contacted the genetic counselor in Denver, just to see if she could put my mind at ease at all. She also said triploidy is unlikely (which I know, but don't these folks realize that Mo and Will are especially prone to rare and unlikely events?). She affirmed what I thought, which is that because we did ICSI, we know only one sperm fertilized each egg, which is one way triploidy occurs. She also confirmed that the Denver clinic checks for the expulsion of the polar body from the egg, which is another way triploidy can occur (the egg doesn't shed its extra set of chromosomes, so you end up with 3 sets). I was also hoping to find out if the embryologists tried to visualize the 2PN stage that confirms fertilization (because I think in triploidy you'd have a 3PN, not a 2PN stage, but she didn't answer that part of my question...oh well).

So rationally, it seems unlikely this is another triploidy, except that my beta numbers are a little out of this world. And I realize to those without a crazy bad history, these thoughts and fears may seem crazy, or super negative or something. But I don't think so. I think this is what happens when you've rolled the dice as many times as we have and have come up wanting each time. It's hard to believe your luck may finally have changed. You keep looking for the catch. You keep looking for the asterisk. The "just kidding!" in small print at the bottom of the page.

Mostly I'm not thinking too much about this. Mostly I'm actually in the now...this fear is just a little niggling thought in the back of my mind sometimes. It helps so much to know that whatever is going on in there is out of my hands. I can't unmake a triploidy if that is what is growing. I also can't mess up a perfectly normal baby if that's what we're lucky enough to finally have.

It helps that I'm still feeling guarded, have not launched head over heels into this pregnancy with my heart wide open yet. I feel a little guilty about that, but am trying to be understanding of myself and Will. We are gun-shy. We are wounded. We are taking this a day at a time, and that's ok.

So these are some of the things that go bump in the night for us. If we can just get a bit farther along, these particular fears will be put to rest. And that will be a very good thing.

Mo

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24 comments:

  1. mo,
    your betas are strong, which is good. they are solid. that is a good thing! they are not too high. they are right where they need to be. probably at this point, it would be good to stop taking betas. they have appropriatedly doubled, and are now appropriately levelling off.

    i don't think there is a way to figure out if there are three sets of chromosomes by looking at a beta. i know this is your fear, but the fact that they did ICSI and made sure the pb was gone, those are very solid facts to go forward on.

    i had betas that were higher than yours, all singleton pregnancies. the beta number just does not really give you that much diagnostic information.

    but its hard not to worry. i think its good to get the worries out of your head so they don't cause you a ton of internal stress.

    its so great that you have open access and good communication with ccrm and all of you other doctors.

    just keep waking up, living thru the day, and going to bed... each day that you are pregnant is a gift. one day at a time.

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  2. Mo, you don't need to qualify your statements about your fears. you have had six losses. If I were in your shoes, I would have to be sedated. You are not irrational. You are not neurotic. You have REALLY been through the ringer to get here. And as a random faceless person on the internets, I feel really confident that this is your take-home baby....just a feeling I have...but you are 100% entitled to worry like heck about all of it.

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  3. Mo, you don't need to qualify your statements about your fears. you have had six losses. If I were in your shoes, I would have to be sedated. You are not irrational. You are not neurotic. You have REALLY been through the ringer to get here. And as a random faceless person on the internets, I feel really confident that this is your take-home baby....just a feeling I have...but you are 100% entitled to worry like heck about all of it.

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  4. Mo,
    I can totally understand where you're coming from. But for the time being (and I believe the next 32+ weeks) you're pregnant. Try as much as possible to enjoy this... As days go by, you'll feel more and more confident about this as well!

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  5. I was terrified of triploidy. For exactly the same reasons. It's the real false starter that will keep you up at night. The truth is that you may never feel safe in this pregnancy. But, you will get moe and more comfortable with it over time. I would say a small moment of thanks each morning for being pregnant one more day. When you are past the point of previous losses (week 9 for me), you probably won't transform into the perky preggo. That said, having new scenery and new worries will be refreshing. Terrifying, yes. And still refreshing.

    Also, if you are in one of the 30 cities that it's offered, you can rule out T21 around 10 weeks with the M.aterniT test that I did instead of amino. I know that that date feels like eons, but it's a bigone that you can get out of the way earlier than CVS. Something to bring up during the next visit. Something I wish I had known about myself.

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  6. Hey, Mo. Given your history, your fears seem perfectly normal, esp. this particular fear.

    But really your betas aren't THAT high. Mine weren't followed as long as yours, but while they were, were higher than yours, higher than most twin pregnancies. And obviously she turned out fine.

    Day by day. When's the next ultrasound?

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  7. Misfit gives very good advice. I think feeling fear right now is normal. For me, it has gotten better but it's definitely still there. I think this is the one for you though and I'm going to keep sending positive thoughts your way.

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  8. I think that one of the hardest things to do, especially with recurrent loss, is to acknowledge the fear without giving in to it. It is OK, natural, and common to be fearful during these early weeks of pregnancy. Once you get to your 2nd trimester, a new kind of fear will creep in, and, once you fully reach the age of viability and are firmly in your 3rd tri, yet another kind of fear will settle over. It is the nature of being self-protective while trying to be in the moment and not plan too far ahead but wanting to know the outcome (if that makes sense).
    My mantra during my perilous pregnancy with my son was "Una la volta", one thing at a time. That was the best I could muster and it served me well.

    Continued good luck.

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  9. Mo, I did not have nearly a tenth of the loss and time that you and Will have had, and it took me to 20 weeks to feel comfortable with my pregnancy. So yeah, its ok and totally normal for you to feel the way you do right now. I would be the same way (no, actually, I'd be a blubbery mess hiding under my sheets until the 3rd trimester). You are doing great, keep up the sane work! :)

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  10. I also feel it's totally normal for you to continue to have fears and concerns, and that this is one thing a blog can help with. I'm glad you're sharing your fears. I was going to ask if there is any scientific connection with Beta levels and triploidy, which it seems like others addressed to some extent. I would be reassured with Gwinne and others comments about Beta levels in their pregnancies. Sending lots of supportive thoughts.

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  11. kristina - yes. triploidy is associated either with very high or very low beta numbers.

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  12. Wow!
    I missed a lot while I was gone:).
    First of all... Congratulations!!! I am thrilled with your BFP, and that the US looked good.

    Your anxiety and concerns are understandable. But you are right... either way, there is nothing you can do about the chromosomal viability of the baby (sucks, no? for those of us that like to be DOING and FIXING, I think it is the cruelest joke...).

    Of course I am pulling for you and your little one... hoping and praying that all is well in there and that your concerns will turn out to be unfounded.

    Waiting and watching...

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  13. If it makes you feel any better, my beta numbers were very similar to yours and I had a healthy singleton (a girl). Research suggests that hcg levels are higher for female embryos, so that's my theory--you're carrying a healthy baby girl.

    Hang in there. Given everything you've had to deal with I think you guys are doing great.

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  14. Mo, you are doing great, and sound remarkably sane given where you're at in the pregnancy. All I am hoping for you is that time passes as quickly as possible so you can get a little more comfortable. As a matter of fact, I am wishing that for both of us!

    Hang in there, you're doing amazingly well...

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  15. No words of wisdom... just hugs!

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  16. I wanted to say how much I appreciate you sharing your struggles with the rest of us. After years of loss and failed IVFs I just found out that our FET worked and we are pregnant. I am a week and a few days behind you. I too keep waiting for the other shoe to drop. We just heard our baby's heart beat this week. I want to get excited but I don't want to jinx this. I know you understand. I pray this ends well for both of us.

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  17. Anonymous, wishing you all the best for a successful pregnancy. Keep me posted, ok?

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  18. Mo and Will...

    Hang tough. You guys are good at that. Ask for help when you need to...and remember: Tempus Fugit...it can't go fast enough right now, over these bumpy parts, but what I wish for you is that you get to a point in this pregnancy, where you savour each new wonderful experience and time stretches out, and slows for just a little bit...you deserve that so so much.

    All the best...

    Physician chick from the great white north.

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  19. Perfectly understandable to have each and every one of these fears. No need to feel guilty about your valid emotions and being guarded - there is a lifetime to bond with your baby after you have him/her. For me, bonding is made up of many shared moments and memories, getting to know and understand the enigma that is a child. There is no right or wrong way to feel while pregnant and no right or wrong way to bond... it'll happen when the time is right for you.

    Love,
    What IF?

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  20. Hmmm. I was among those who said something on your last post about how high your beta numbers seem (and they do, to me), but I hope you realize that is totally framed in the context of me being clueless about what the normal level of a beta is at this stage of pregnancy. So, really, please don't interpret it as anything more than that.

    And yes, I think you are doing everything it is possible to do, quite seriously, to help sustain a pregnancy at this stage. So much of this just isn't in our control or even our knowledge. I hope the time will hurry by (though I know, I know, one day at a time).

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  21. Ok, I haven't done the math to see if your later betas more than doubled or done research to see if they are much higher then they should be. But most people don't do more than 3-4 betas (most do 2) and your first few betas look totally normal. I've read al lot Of blogs and message boards over the years and your numbers look very normal for a singleton. Seriously.

    I've been meaning to post the following but I didn't realize until your post today that for 2 of the blasts the fish test failed. But it sounds like CCRM's points about pb etc pretty much rule that out, so here goes: while you have had 6 previous losses, this is only the 2nd pg with a known normal, and with the other one your betas were very very low. So this pg is really quite different and much more hopeful than the rest.

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  22. You're doing GREAT Mo! Hang in there. I hope sometime soon you will get to the point where you feel more secure with this pregnancy and begin to enjoy it without those fears constantly creeping in. Totally understandable after all you have been through. As my DH likes to tell me all the time...you're a tough chick!

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  23. You're doing great MO! One day a a time, one day at a time.

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  24. Morning Beta Princess!

    Always here one day at a time too. Great detective work to try to settle your mind.

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