CVS update - updated

[loira]

The good news is everything LOOKS normal at this stage. Baby is measuring fine and heart looks good according to the fetal cardiologist. The frustrating news is because of my stupid retroverted uterus and posterior placenta, the doctor didn't feel comfortable doing the CVS today. It's been delayed by 2 weeks, which means all my results will be delayed by 2 weeks as well. If he still can't get to my placenta easily by then, I'll have to have an amnio at 15 weeks instead. He said if my risk of genetic abnormality had been higher (50% instead of 1%) he might have risked the CVS, but that there's no point in increasing potential of miscarriage if chances are good that everything's okay. I get it, and I agree, but I'm still disappointed they couldn't do it today. I feel emotionally drained.

Update: We were able to have the CVS done today. The doctor said it was very straightforward, so that's good. It was quite uncomfortable, and I'm a bit crampy, which they said to expect but it's still disconcerting. We should have the FISH results by Monday, and the 22q results in 2 weeks. Now I take it easy and wait...

[bcarp30]

I'm sorry, that's a lot of anxiety to all of a sudden be letdown and then have it drag on for another 2 weeks!! I'm glad to hear he said everything looks normal and that he was being cautious about the CVS. Is there any blood work they could do now?

[belovedbride07]

Ugh. I'm so sorry you have to wait longer for the CVS, but I am so glad to hear everything still looks good.

How are you feeling? Are the meds continuing to help?

[loira]

bcarp30, any blood work they do would only assess risk factor, and only for the main trisomies. Since we want conclusive results for a microdeletion, there would be no point in having a traditional NT scan + bloodwork. I'm glad he was being cautious, too. He's very experienced, and the hospital is one of the best in London, so if he says he'd rather not do it, I'm not going to argue.

belovedbride07, I'm feeling quite a bit better, thanks. It's a combination of the meds (which I only need in the morning now) and the natural tapering off of my sickness. I'm basically only sick first thing in the morning, which is a LOT easier to deal with than all day.

[ivy]

I'm so sorry. That's incredibly frustrating. I know you've been counting down to this. I am happy to hear everything looks good!

[boiler717]

I'm so glad things are looking good so far. It sounds like you are in great hands. Wishing you peace these next few weeks.

[Muddled]

2 weeks! That must feel like forever. So disappointing.

I'm glad everything looks good. And I'm glad that the doc is not into taking unnecessary risks.

You really are just going to have to come out to NYC to take your mind off things.

[KB]

I'm so glad to hear everything looks good. I'm sure it was frustrating to hear you have to wait another 2 weeks. I hope it is an easy and calm 2 weeks for you. Hugs.

[loira]

Jul 16, 2015 10:38:48 GMT -5 Muddled said:

2 weeks! That must feel like forever. So disappointing.

I'm glad everything looks good. And I'm glad that the doc is not into taking unnecessary risks.

You really are just going to have to come out to NYC to take your mind off things.

You're so sweet to offer. I really wish I could, but unfortunately we just don't have the budget for it. Also, H is SO close to finishing his corrections, and since I'm his trusty editor I can't risk derailing his progress by taking off. Even if the thought of all that NYC food makes my mouth water. 

[ssg73]

Glad things looked good but sorry the cvs was a no go. How frustrating.

[awick14]

I'm glad that everything looks normal at this point loira.

I'm sorry you have to wait another 2 weeks for the CVS though.

[Muddled]

Jul 16, 2015 10:52:00 GMT -5 loira said:

Jul 16, 2015 10:38:48 GMT -5 Muddled said:

2 weeks! That must feel like forever. So disappointing.

I'm glad everything looks good. And I'm glad that the doc is not into taking unnecessary risks.

You really are just going to have to come out to NYC to take your mind off things.

You're so sweet to offer. I really wish I could, but unfortunately we just don't have the budget for it. Also, H is SO close to finishing his corrections, and since I'm his trusty editor I can't risk derailing his progress by taking off. Even if the thought of all that NYC food makes my mouth water. 

Blah, blah, blah, blah, blah.

We'll meet one day.

[swiftlyirun]

loira 2 weeks feels like FOREVER. Such good news though to hear that everything looks normal!

[Bumblebee]

I'm sorry that you have to wait for the CVS.  I imagine it was difficult preparing yourself for today and waiting even longer has to be hard.  Hugs.

[azurely]

I'm glad everything looks good so far! Sorry you have to wait two weeks for the CVS though

[loira]

It's not even the waiting that I mind so much as the fact that I'll be 16 weeks instead of 14 if we have to make another heartbreaking decision, and 17-18 weeks if they can't even do the CVS next time and have to do an amnio. With every week that passes, the chance for a surgical termination decreases. I can't go through what I did last time, it will break me beyond repair. I'm trying so hard to remain optimistic, but it's hard when you're looking at things from the other end of the statistics.

[awick14]

((loira)) I have everything crossed that this is your take home baby.

[G22]

I'm sorry you have to wait longer for the CVS. I can't even understand what you went through with V, but I hope all is ok this time and you aren't faced with that again. ((Hugs))

[Muddled]

loira, regardless of the outcome, you will get through this. I will hold you up if it comes to that, but I suspect you are strong enough to make it on your own, with the support of your H.

Huge hugs to you. We are all visualizing a healthy baby with healthy cells growing and developing as he or she should.

[luv2rn4fun]

So many ((hugs)) and prayers. I'm so happy to hear that things are looking good and I have so much hope that you get to hold this baby in your arms and aren't faced with termination. I hope these next two weeks fly by and the results are nothing but positive. We're all rooting for you!

[loira]

Thanks, everyone. You guys are the best.  (rose)

[cactuscookie]

So many hugs, loira.

[ssg73]

loira. I am sure you know this already but I was just reading about the materniT21 plus cell free DNatest and it said that it screens for the 22q deletion. Am I remembering incorrectly that is what V had?

[loira]

Jul 22, 2015 14:54:03 GMT -5 ssg73 said:

loira. I am sure you know this already but I was just reading about the materniT21 plus cell free DNatest and it said that it screens for the 22q deletion. Am I remembering incorrectly that is what V had?

Yes, that's the one. It's a good thought, but tests like materniT21 and Verifi are not offered on the NHS, so I wouldn't be able to have them. In any case, I think they only screen for risk, and H and I want full diagnostics.

It's funny you should mention them though. When we were at the hospital, a research fellow came to talk to us about participating in a study to develop an actual diagnostic non-invasive test, so we gave her our blood, which they'll test when they get our CVS results, and we get to feel good about helping science.

I did ask the researcher about those tests, and she said they're not very reliable yet (her words, not mine). I think she meant this from a diagnostic perspective, as even the MaterniT21 website states "Cell-free DNA (cfDNA) testing does not replace the accuracy and precision of prenatal diagnosis with CVS or amniocentesis. A patient with a positive MaterniT21 PLUS test result should be referred for genetic counseling and offered invasive prenatal diagnosis for confirmation of test results." I'm assuming this is why they're not offered on the NHS, which gives either NT + blood work for low risk mothers, or CVS or amnio for high risk and anyone whose NT scan showed abnormal results.

Thank you for thinking of me, though.  (rose)

[ssg73]

Bummer I was hoping you could get the test even if it was just to give you some info while you wait to get the cvs. Hugs while you wait.

[loira]

Update in OP.

[azurely]

Glad it went as well as possible! Looking forward to good results!

[cactuscookie]

I'm so glad you were able to have it today! I was thinking about you last night. Results by Monday isn't so bad, although I'm sure it will seem like an eternity.

[shoeless]

I'm glad you were finally able to have the CVS done, fingers crossed that everything comes back perfectly normal.

[ssg73]

So glad it went smoothly and that you are resting. Sending all my positive energy for perfect results!!