Friday, April 6, 2012

Testing testing, 1, 2, 3...

I had blood work drawn four times this week.

I think that might be a record (during pregnancy itself, not IVF with its daily draws).

Join me for a week of pregnancy blood letting, if you will.

On Monday, I had blood drawn for a new test I had heard about from someone in the comments section.  It's called the MaterniT21 Plus test and is offered by Sequenom.  The test is not yet available in New York State, but somehow my hospital has a waiver, or gets a waiver for each patient, or something. It tests for Trisomy 21, 18, and 13. Now we should be in the clear for all of those, because this embryo (fetus?) had all chromosomes tested by microarray before we transferred back. But...I know there is a small error rate on the microarray....and we're very unlucky people. Since the test is noninvasive, we figured no reason not to get it, just to be sure. Our plan is to avoid amniocentesis and CVS, which are invasive and have a small risk of miscarriage, unless something super scary turns up in the next several weeks that seems to suggest one of those is necessary.

Let me pause to note how strange it feels to type "in the next several weeks," as though I'll still be pregnant then. I'm kind of living in both realities right now, the "imminent miscarriage" place, and the "things might just be all right" place. A little bizarre, but true.

Funny too that I would ever consider foregoing CVS and amnio. This is a big surprise to me and not what we thought we would choose. I'm generally a need-to-know person. But honestly we feel this pregnancy is so precious and delicate that we don't want to do anything that could even potentially damage it.

The MaterniT21 Plus test takes a couple of weeks to get results on. Ten business days, I think. I would be absolutely fine with having a down syndrome child, if I knew I could carry him/her to term. We're looking for a child who can live, not a perfect child. My fear is more another loss. Trisomies 13 and 18 aren't usually compatible with life (or with life past the first year). We might not continue a pregnancy with one of those disorders. But I know the chances of any of those being a problem are very slim. This is supposed to be a euploid embryo, and our clinic has a very good track record with their testing, but we just want to be thorough.

Tuesday, at 10 weeks 3 days, I had my progesterone and estrogen tested, which I was a little nervous about given the bleeding episode over the weekend. But the levels came back okayish with estrogen at 852, up from 833 last time (that's with two Vivelle patches) and progesterone down to 28.13 from the last result of 57 (that's with one endometrin suppository and only 1 /2 cc progesterone in ethyl oleate, instead of the previous 1cc). My nurse in Denver said to keep all meds the same and retest Friday. 

Thursday I went to the high risk OB area of my hospital and had my blood drawn for the nuchal translucency screening test. I knew they would be testing my beta HCG and another protein called PAPP-A (pregnancy associated plasma protein A). HCG is higher than average in trisomic pregnancies and PAPP-A is lower. 

It was a little saddening to fill out the nuchal screen blood work paperwork. Have you had a pregnancy with trisomy 21 previously? YES. Have you had other aneuploidies? YES. Monosomy X, Triploidy, Trisomy 16. I had to write down the side of the page because there wasn't enough room for all of the problems we've had. They also asked the savvy question of whether this was an IVF pregnancy and if so, what was the age of the egg at the time of retrieval. Nice. So we get to shave almost two years off of our odds. The egg was from a "young" 38 year old me, not my current "young" 40-year-old self.

I was shocked when the the nurse said the nuchal blood work would only require a finger stick (really? Why all these previous vials of blood to test my HCG then??). They pricked my finger, which proceeded to gush like a fountain, making it quite easy for the nurse to fill her row of paper blot circles with my blood. What can I say, I'm on lovenox. I'm a champion bleeder. We got the job done, and then some.

Which brings us to today....Friday....and another progesterone and estrogen check. Results coming later today. I will add them here when they come in. Hoping the progesterone hasn't dropped any lower. The estrogen seems to be hanging in strong, even rising a little bit, which makes me smile.

Thank goodness I work at a hospital. If I had to commute to get this done this many times, I would have an awful lot of explaining to do at work. As it is, I can duck out quickly and am not even missed. Job perks I didn't think of when hired.

Next ultrasound live baby check is Monday. And then...if the baby is still alive, the nuchal ultrasound is scheduled for Thursday. Feels like an important milestone. Not sure why. 

I sent my mom, who lives across the country, a framed ultrasound picture this week that should arrive tomorrow and knock her over with surprise. She doesn't know we even did the FET. We will be telling Will's sister in person on Easter morning. That's it for family telling for a while - we'll tell our other siblings, and my dad, later. These are all of the "most intimate" people. Our moms, his sister. We've always told them every time we're cycling, so keeping things mum this long has been very different. 

Wow. Really hard to believe time is still passing and that as far as I know, we are still pregnant. How lucky am I? Pretty damn lucky. Unbelievable, really.

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  1. this is the part of the pregnancy when there is a lot fo that blood work done... and yes, i agree, getting to the NT exam is a huge milestone. i am really thinking of you all, hoping for the best... things are going so well, so far... one day at a time.

    have a great weekend!

  2. I have no idea (beyond what you jsut explained) what any of those mean. But, the impression I'm left with is - sister, you are still pregnant!! This little bean is hanging in there! WooHoo!

  3. So very happy you are where you are-- the new blood test for trisomy sounds very interesting! I hope it gives you excellent confirmation of CCRMs results.

    Assvice warning
    I LOVED my doppler thingy once the pregnancy got far enough along so I could find the heartbeat easily. It is not easy when it is early depending on the position of the little one... and I had some real scares and Doug had to take over. BUT that being said, it was great comfort once it was more certain I'd be able to find her quickly--


  4. That is a lot of blood draws--I do think you are setting the record!

    I wish someone could film your Mom's reaction when she opens that picture :)

    Hoping your estrogen and progesterone are just what you need to help you have a happy weekend!

  5. Going off of Ms. MTL; could you Skype with your Mom for when she opens the present? For our 'big reveal' we had everyone over for my birthday and instead of saying "Say Cheese" we said "We're pregnant" and that picture is still one of my favorites for the expressions on my brother & grandmother's face! So glad that you're humming right along and will get to peek again on Monday!

  6. Emily Erin - I am having her call me. I think she will be too suspicious if I have her Skype. I'll be able to hear her voice and will have to just imagine the look on her face.

  7. Mo - I also took the MaterniT21 test despite having transferred CCS normals. I also wanted to avoid an amnio or CVS at all costs. The test results allowed me to breathe easier through the rest of the pregnancy and we just delivered two healthy CC.RM boys yesterday. I'm rooting for you!

  8. Nikki - congratulations on your twin sons!! and thanks for the validation on taking the extra test. I sort of figured, why not?


  9. Hmmm...I've never even heard of the MaterniTi21 test? I would be afraid of doing an amnio and CVS too.

  10. I am so happy for you! :)

    Happy Holiday weekend to you & Will!!!

  11. Next ultrasound live baby check is Monday. And then...if the baby is still alive, the nuchal ultrasound is scheduled for Thursday. Feels like an important milestone. Not sure why<\Quote>

    Mo, you WILL still be pregnant on've made it so far already! The nuchal scan IS an important milestone! Heck, EVERY DAY is an important milestone when you've been through multiple IVFs.

    Looking forward to your next update!

  12. I am so happy to read this post and see the milestones you are reaching!

  13. WOW - it's a good thing your blood volume increases while you're pregnant, eh?! Or you'd have very little left after all that bloodletting.

    The MaterniTi21 test sounds like a fantastic idea - I've never heard of it. We went private (I'm in the UK, so NHS rules!) to have a specially detailed NT screening where they do a very detailed US scan and take the triple blood test at the same time and do a fancy equation putting the whole lot together with the age of the egg (we were DE) to give you a pretty accurate set of odds. Ours came back as unlikely as you can get - which was music to my ears as, like you, I'm a "be prepared" girl and would have had a tough decision to make if they'd come back equivocal.

    So, so pleased that this pregnancy is progressing so well!

  14. I'm so happy for you that you're at the "all-the-testing" stage. And was so glad to hear that your boss is totally supportive and will do her best to keep you sane during your pregnancy and on your mat leave.
    Hope your next U/Ss go well. Did you buy/rent a doppler? At 10-11wks, I'd imagine you should be able to find the baby if you're reasonably thin. If not, you'll be able to in the next couple weeks, and it may save you fom a bunch of save-my-sanity ultrasounds.
    Are you still on the claritin-pepcid-prednisone cocktail? I'm maybe going to ask my RE about that when I go for the finl FET. I'm also thinking about asking about intralipids, since I think the downsides are minimal and they might help. Then again, he might not do it if I don't have anything obvious on immune testing. And I haven't had that testing done in a few years...

  15. Wow! Too bad it wasn't all just finger sticks!

    I've not heard of the MaterniT21 PLUS, but I'm all for being prepared. Hope it brings you some much needed peace.

  16. Ah yes, the pregnancy blood letting. Completely necessary I know, but really, watching them steal 7 vials at my early workout left me stunned. I know there's a lot more in a person, but it never ceases to amaze me.

    I am just so, so happy that things are going well. :D

  17. So very happy to catch up on your blog today! You and Will and your baby are in our thoughts and we're sending tons of good vibes in your direction for continued...well, pregnancy! HOORAY!

  18. Happy that all is going well for you! I'm keeping my fingers crossed for you guys!

  19. Thinking of the three of you, and waiting impatiently for your Monday u/s report. xoxo

  20. Glad you picked up the tip on the T21 test. It was the thing I wished I'd known as early as you are now. I was lucky that it had been cleared just as I was facing an amnio in January as my only option at all. For the scientist husband, the analysis they are doing in San Diego is exactly his analytical background, so we put everything on the line if the results were good or bad. My results came back easily within 10 days, so I've got high hopes that you'll be getting this soon. I was 16 weeks at the time and out of range for all prenatal testing other than the penta-screen (due to a poorly timed cross country move), so that test was a real lifesaver.


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