Okay.
[Takes a deep breath.]
I did NOT want to blog about this. I so did not. I wanted to keep skating along the surface of this little project, by writing about pickle cravings and gaining weight at an alarming pace and telling shocking-but-true stories about my Mom.
But then I realized I wasn’t being true to myself, or the reason I started this blog in the first place, which was to honestly chronicle my experiences with trying to get pregnant.
When I started this blog over a year ago, the idea of actually being pregnant seemed so remote. As in, I could get pregnant or go to the Moon or win a Tony for starring on Broadway. SURE. Any of those things was just as likely to occur.
Once I got pregnant, I found myself unwilling (unable?) to talk about some of the stress and anxiety I was feeling.
Some of that was, of course, wanting to avoid hurting or offending those of you still in the IF trenches. I guess I thought it was somehow okay to complain about morning sickness or fatigue, but anything deeper or more dramatic than that would be like a slap in the face of someone wanting nothing more than to be pregnant, nauseous and exhausted all of the time.
So my posts have been superficial, smart-assey and, of late, not a true reflection of what I’m going through.
Here goes one piece of this puzzle, one of the things I haven’t wanted to discuss in the last couple of weeks: the results of my NT scan.
Remember when I wrote, in a rather off-handed way, I thought that everything was okay, but that I hadn’t gotten the official results back yet?
Um, yeah.
[Note to self: Do not be an asshole. Also? Do not be so cavalier about this pre-natal testing business. It is not for the faint of heart, so just be prepared. For anything.]
Twin A came back in the ‘increased risk’ category for Down’s.
No one wants to see that piece of paper with the box encircled by dashed lines containing the words, INCREASED RISK.
To be more specific, my risk is 1:286. This is based on my maternal age (so kindly referred to as ‘advanced’ at 39), the NT measurement from the scan(2.4mm) and the blood work.
It did not factor in that we did PGD, which is reportedly 90-95% accurate.
According to the genetics specialist I spoke with, the average result for a 39 year old woman is 1:112 and the cut-off for ‘normal’ is 1:300. So my result of 1:286 is so, so close to being in that ‘normal’ range.
So close to not seeing those words ‘increased risk,’ but not close enough.
I folded the test results in half and stuck them in a file labeled, appropriately, ‘test results.’ But that was supposed to be for MY test results, not the babies’. For all those reams of paper from the last five years and our IVF cycle and my silly killer cell tests that keep coming back elevated that don’t really worry me.
BeBop and I spoke of what the numbers mean, but it was almost impossible for us to wrap our minds around what they signify.
That’s what, less than 1/2 a percent? Never been good at math. And it’s not factoring in that we did PGD! But if someone said you had a 1 in 286 chance of winning the lottery, wouldn’t you be sort of happy, like thinking those were kinda good odds? So is it good news, or sort of bad, scary news? How the frick am I supposed to know!?
So we went round and round, and then spoke with the genetics specialist at Dr. Z’s office and my OB. Both of whom, in general, reassured us that this was not really something to worry about.
Unless we were worried about it.
In the end, we decided against doing the amnio. If my odds were worse or my overall sense of anxiety was higher, I would do it. If we hadn’t done the PGD I would do it. If I felt I needed the peace of mind to get me through the remainder of my pregnancy, I would go ahead.
But I think I’m okay. I could still change my mind, I’m only 16w3d today.
Mostly, I’m fine now. I think everything will be fine. I think we’ll be able to face whatever comes our way. But I do have my freak out moments, when I bring up the topic again and talk to BeBop about it.
My gut tells me it’s okay. My gut tells me not to do the amnio. But it’s hard. And scary.
And honestly, I wasn’t sure what to write or how to write it. For those of you who have recently faced such issues and wrote about them on your blogs, reading about your experiences has helped me tremendously, which is another reason why I decided to stop pussing out and just blog about the goddamn thing.
But beware, this probably opened the floodgates and now, instead of writing about my Bigfoot-like facial hair problems or my dog or how my Mom rubbed sacred ash from India on my sister’s newborn baby’s head (which caused a RASH, by the way!) this will probably devolve into a neurotic, fear-laden blog replete with hand-wringing and indecision and anxiety attacks galore and tons and tons of self-pity.
Be afraid. Be very afraid.
I have been wondering for quite a while if you have felt pressured to only deliver sarcastic and somewhat lighthearted posts. I was worried that this blog was not serving as an outlet for the difficult side of what you are going through. It doesn’t matter how envious we are, this blog should always be a therapeautic exercise for you. Sure, it was nice of you to keep us laughing, but it shouldn’t be about entertainment if it isn’t serving your needs.
You are in a really tough place, there’s no doubt about it. As you know, I am not in your position but, as a woman starting out with IF treatments at 35, it is not far from my consciousness when I think about pregnancy. In fact, when I mentioned the issue to Mr. LIW the other day – as in, what if we got a confirmation that our fetus had Down’s – I was shocked when he made it clear that we wouldn’t have him/her. He’s Mr. Sensitive when it comes to children so that really caught me off guard. And made me realize the stakes in doing the scan and possibly an amnio.
But that’s different from your sitation, even though it speaks to some of the same fears and stressors.
I haven’t done the research on it and, as a researcher, I know that I should look into it before I comment, but I think that the odds sound actually quite good. Better than average for your age (couldn’t you just poke the person in the eye who decided that 35 and over was “advanced”?!), which has got to be good. And the PGD means that easily you fall into the 300 range. It’s GOT to given the succes rate for PGD. I think I would hold on to the PGD factor to keep me calm – or at least calm me down. In fact, it made me think that it is something I should consider when we move on to IVF (even though we haven’t noticed any problems that would warrant it.)
I am not discounting your fear one bit. But it sounds to me like you have made the absolute right decision about the amnio. And you are also right to retain the ability to change your mind further into the pregnancy.
I am available via email if you ever need to vent.
Something to understand here hon – infertility does NOT end when you get pregnant. No matter what anyone says.
And yes, statistically speaking your odds for Twin A are close to normal. But after how long you tried, how much you’ve gone through to get to this point… ALMOST normal doesn’t cut it. Because you DESERVE a perfectly normal pregnancy. And it sucks that you’re not getting it.
Likely your doctors are right. You DID PGD and the results were good. And the results from the NT scan are just on the cusp of increased risk. Yada yada yada.
At the end of the day, pregnancy and parenting IS scary. Because you love your babies already – you’ve gone through hell and back for them – and you want them to be healthy and perfect.
My fingers are crossed for you. And the twins.
And please. Vent all the fear you need right here. Just because you’re pregnant now doesn’t mean that you don’t need support.
*HUG*
Im so sorry you are dealing with this stress. I am not as versed as the comments the ladies have left before me, but I do rest in the confidence that you did PGD, and that you deserve to rest easy the remainder of this journey! I wish you the best, and am thinking about you!
It is incredibly stressful. Two weeks ago I had an extensive ultrasound with my peri at 18 w6d and he found three ‘soft’ markers. Including a nuchal fold measurement of 6.3. And I freaked out. He offered to do an amnio right then if i wanted to and I ended up agreeing. Even though I had done the integrated blood work that screens for downs (etc) and the results showed a 1:45000 risk of downs… which is so so so tiny that I had written off my worries about the major genetic issues. However, when I was on the table, and he was talking about the increase in risk from each marker that brought my odds back down quite a bit (but still less than 1%). I think i was so afraid of stressing out for the next 4 months that I ended up agreeing to do the amnio. Afterwards I felt really guilty about it… I felt selfish. And so worried that I would lose the baby just because I couldn’t deal with uncertainty. I was so embarrassed that I didn’t even blog about it (my sister reads my blog and I didn’t want to worry her…)
The story has a good ending (I think). It has been ~12 days since the amnio and I haven’t had any spotting/bleeding or any contractions. And both the rapid (FISH) and full screening results came back showing a genetically normal baby. I’m relieved that I had a good outcome, but I also know that I would be completely devastated to get these results after having miscarried. I still don’t know if it’s worth it when your odds are increased, but not very high. If I hadn’t had the amnio I know I would be having frequent stress/panic attacks, but I’m not sure that was a good enough reason (for me). Everyone has to make their own decision… and if you’re unsure maybe it is better to not do the test. I’m glad that you can use this space to let go of some of the worry that you won’t be able to escape.
Watson? Remember my freaking about just this issue? And Rockmama, and Flygirl. God, my reslts were 1:270 and I was only 28 at the time.
But things are FINE. Not an extra chromosome in sight. An amnio wouldn’t tell you anything the PGD didn’t already.
NT scans are just NASTY things, bt we feel compelled to do them anyway.
But seriously, I wouldn’t worry.
Your blog is your place to be honest if that’s how you feel – and I admire your bravery for talking about the scary things…
Have you considered CVS? Just a thought- more to put your mind at ease than anything… x
Watson, thank you for your honesty. Mostly, I’m glad that you are using your blog for whatever YOU need and not what you think WE need. We just want you to be fine, and your twins both fine, and if you can be funny in the process, great, but it’s not why we come back to read.
I understand the “amnio or no amnio” decision is a really tough one, and I admire you just going with your gut on this one.
In the meantime, PLEASE don’t feel obligated to make us laugh. We’re here no matter what.
It would be nice if all of our troubles ended the moment we got pregnant. It was sweet of you to try to keep things like and funny for our benefit, but I’d much rather hear it like it is, and be able to give you support if you’re going through a rough time. Although I’ve never been pregnant, I know I already feel some pressure if I get there, that I damn well better enjoy it, after doing all of this, but the truth is, I may not. Things may be scary, uncomfortable, uncertain… I wish we could leave these things behind us, but we can’t.
Best to you and your twins.
Watson: I don’t know if it helps at all but think about all the thousands of years we didnt have any of the advanced testing we have now… women just got pregnant, got fat and gave birth. It all seemed so simple before becoming a specialist in not being able to get/stay pregnant. After multiple miscarriages when I finally had a pregnancy that seemed like it would stick the doc said because of all the previous losses, that may have been genetic problem pregnancies, he thought I should have testing…but then told me since I had so many misses, I was at a higher risk to have another one. God, all I wanted was to enjoy a “normal” pregnancy and bitch about hemorrhoids and cankles like everyone else. We were told that since we had so many losses that this baby was higher risk for having Down’s, spina bifida, and a gazillion other problems. I decided to play ostrich and bury my head and not have any more testing. That baby is now a 6’2″ muscle bound, athletic, chick magnet. I think in my heart I knew he would not only be born, but thrive and he has. Just follow your heart, Believe me there are many many stories of worried mom’s that end up having perfectly normal babies even when odds are against them and your odds aren’t even up there in that range.
Oh…we will take funny, bitchy, whiney, soul bearing blogs and whatever else you want to throw out here…we are the Watson cult followers and wouldn’t think of leaving 🙂
I don’t know what to say, but I’m really sorry you’re going through this, and that you even had to think about writing or not – cuz you shouldn’t have to have any of these thoughts or decisions. Good luck.
Dude. The worrying? As cliche as it sounds, and you can smack me for being cliche, but it is true. You never stop worrying. You’re going to worry about these kids until you die, and you’ll probably worry about them then. If I had known that going into it, I probably would have asked my OB for a lifetime supply of valium and tequila.
It sucks though, that you have to deal with this curveball after everything.
Gosh, I really don’t have anything to add to the fabulous comments you’ve gotten so far. The good PGD would definitely reassure me if I were in your position. My results (no PGD) were 1:150 and I went for the amnio feeling doomed. It took a while to understand that 149:150 babies with results like mine (and with moms as old as I am) would be perfectly normal. She is 🙂
Take care & just be you 🙂
I’m no expert in PGD, although I do know a thing or two about it, but in essence, you did it and unless they put the wrong ones back, sorry to scare you with that silly remark but this isn’t a game so I’m not going to tread on eggshells here, but unless they did, the baby should be ok and those results are just a number.
An amnio is the only way to tell so they can count the chromosomes. That’s your decision and going with your gut is what I would do too.
I’m thinking of you, let us know if you find out anything else.
HUGS from me XXXXX
I think that was a sensible decision. Just in case you need some validation for it. It was!
Bea
Dear Watson, I’m so sorry that this worry has crept in — and I’m glad you’ve written about it now. This should be a safe place for you to write about anything that moves you, and this is a big thing.
Just a few thoughts:
1. PGD, whatever its flaws, is good at ruling out trisomies.
2. Those numbers really are borderline. And when you consider that the measuring error could be .3mm (a nuchal fold is really, really hard to measure that precisely in ultrasound), that alone could put you in the “normal risk” category. It seems odd to base a very precise risk assessment on such an imprecise number.
I can understand your worry so well, and I can understand your decision too. I just wish you didn’t have this on your mind at all. Hugs to you, my dear.
Believe it or not, your post was gave me hope as I slog through IUIs. You definitely see the big picture and I think your decision of stopping with the tests is a good one. My thoughts are with you.
There is nothing I can say that has not already been said so eloquently by the previous commenters.
Worries? They will always be there. I’m thinking about you and want you to know that I come here no only for a laugh out loud moment but also to hear about everyday life.
This is your blog and honesty is required. To confess, it bugs that If’ers who get preggy oftentimes quit blogging altogether and i wonder if what you are feeling is why?
You are a success story. You give the rest of us hope. Please confide. We all know you so well (seemingly although i’m really starting to doubt that your name is actually “Watson”).
one other thing to keep in mind: not doing the amnio doesn’t mean you don’t get any more information. i started with a 1:200 risk, but after the anatomy scan last week when they have an even better chance to measure everything, they dropped me to 1:9999.
Please feel free to express your anxieties here. Pregnancy is no easy state, last I heard.
Try not to think about your audience too much. Just write what you feel like writing. You still sound like you are on the right side of the numbers, however. Go with your gut.
thanks for your continued bravery and honesty…sorry you’ve got these worries…it seems it’s true…the worries never end so we’ve all got to figure out how to deal with them…hope the blogging is helpful…
wishing you only the best…
peace
shlomit
My dear Dear Watson,
I know the feeling of thinking that we only should post about the rosy things on our blogs since we have now been blessed with lives inside of us.
I have recently been dreading posting on my blog for several reasons:
1. Women who are still struggling to get where I am are reading my blog and I seriously do NOT want to hurt them with my complaining about how I’ve felt like total CRAP the last two weeks.
2. We’re having triplets and it scares the holy crap out of me. I’m thankful for every one of the lives inside of me, but I am also scared and often wonder why we couldn’t have a singleton or even twin pregnacy because they come with slightly less risk than triplets.
3. We don’t yet have a solid plan for my returning or not returning to work- we are FULLY aware that if I don’t go back to work that it will be a six figure drop in our income and with three additional mouths to feed, that doesn’t seem quite logical or responsible.
4. The increased risk of multiples- preterm labor, gestational diabetes, preeclampsia… again, scares the bejeebies out of me.
5. There are days when I actually question whether this is what we really wanted. What kind of mother thinks that way of the children she is carrying?
So, my dear, Dear Watson, I said all of that to say this… this is YOUR blog and it is about YOUR journey and you need and should post about the good and the bad. The serene and the neurotic. This is such a great outlet for the feelings of anxiety, apprehension and pure fear that we feel.
I am hoping and praying that both babies will come out with squeaky clean bills of health, but I also know, from the short time I’ve been reading your blog, that you and BeBop will love and cherish both of your little ones equally, no matter how things turnout.
Take it one day at a time and breathe:) (((((((HUGS))))))
No advice or inspirational story, just wanted you to say that I’m hoping for the best for you and your babies.
I have to second what others have said – please post whatever is going on with you. Like April said, this is your journey and you should write about it all on your blog. There are people out there who think those of us who were successful shouldn’t complain, but it’s OUR blog – our outlet to our feelings.
Take care and I hope that both babies are in perfect health.
I don’t think there is anything I can say that hasn’t already been said. But (and I can’t remember who the poster was) you do get more info at the anatomy scan in a few weeks. It is not like you HAVE to do the amnio. Please keep updating – I enjoy it all.
tm
I say blog about it – all of it. Maybe someone out there can’t handle it – that is ok. They can click away. We’ve all been there. But mostly, all of us who love you want to hear where you honestly are. We want to hear about the pregnancy and how you are doing. We want to be here for you.
I can only imagine how stressed I would be right now if I were in your shoes. I imagine blogging about it would be huge. I’m sorry you felt you had to hold back.
Thinking of you, my dear, and wishing you peacefulness. Sending you love and light.
I persoanlly know someone who had higher risk than that and the baby didn’t have downs. And with the PGD? You really are almost certainly ok.
But I’m down with how good “almost certainly” does. :p
It’s ok to vent. Go ahead. Unleash the floodgates!!
I am no expert on PGD, but did a little research on it when my RE confirmed that IVF w/ PGD was the path for us should we choose to take it.
I found this blog: werlsfertilityworld.com, which has a lot of great research specific to PGD.
That being said, I think they specifically test for all types of trisomy with PGD. Maybe some specifics from the geneticist at Dr. Z’s office would help?
Thank you for the honesty (and for letting us all along on the journey).
Thinking of you, Ms. Planner
Just sending lots of good thoughts your way. I can’t imagine the torture of those results. It will all be ok. Your embryos were PGD’d and weren’t there a few with chromosome issues? That means that the ones that they transferred were perfect.
And Watson, it is your blog. You can write about whatever you want. Even if it isn’t a great story about healers or your mom. Write what you need to say. And do it for you. Not for us.
Just being through this very thing you would think I’d have some wise words. But, no. I don’t have any advice. It’s a horrible decision Watson. I guess you can only go with your gut feeling….if it helps at all, consider that my 1:24 (yes!)risk and Sara’s 1:35 risk both turned out Ok. I know that some clinics cut of high risk at 1:270 which you wouldn’t have even made. Peace my friend.
MDW, I know this is an awful thing to go through, but I think the chances are that things are fine. If you are scared of an amnio, you can wait til 20 weeks when the anatomy scan will give a much better sense of whether there is something wrong or not. You also don’t have to be terrified of amnio, the chances of anything bad happening are very low, although I know that when you’ve been through infertility any risk seems huge.
Re the blog writing, do listen to everything ppl say above. You do have some responsibility to your readers, but not to the extent that you should be censoring yourself. Make sure this blog stays something that’s good for you, not just written for the benefit of others.
I’m so sorry for your worry, but please know that it does not come off in the least bit insensitive to share them. On the contrary, your sisters in IF know just how stressful pregnancy is for someone who’s been through what we’ve all been through. This is the right space to vent.
I hope that everything is fine, and it sounds like chances are that that is the case (particularly since you did the PGD). Hang in there…
I went through something similar with my twins, and later found out that those tests are just not accurate with a multiple gestation. So please, try not to worry too much. Also, given the fact you did PGD…. I would REALLY NOT WORRY.
Thinking of you and the little ones.
Kathy
I am very happy that you opened up. Pregnancy is hard….and even hard when you can’t get there the good old fashioned way. You deserve to say whatever you want….and well if people don’t want to read it….they don’t have to.
Thank you for opening up.
Oh honey. I’m sorry you have to go through this scary stress. But you’re right to trust your gut on this one, whatever it’s telling you. And as many previous commenters have said, those risk profiles are just statistics, they don’t tell you the reality of YOUR baby. You’ll know a lot more after the anatomy scan and hopefull that will be nothing but reassuring.
I also feel the pressure to be light-hearted and carefree on my blog, so I know where you’re coming from.
As far as any advice about prenatal testing or not, here’s me being a hypocrite with some advice: ignore EVERYTHING ANYONE but you, your husband, and your doctor say, think or feel. The world is more divided and opinionated the issues of prenatal testing than on whether or not Elvis is really dead or just living in Minnesota. I saw it myself and got flooded when I was in similar shoes to yours – everyone’s got an opinion on what you should do, and a lot of the opinions come across as pretty hardcore. Do what you feel is best for your family, and then close your ears, humming “lalalalalalala” as long as you like.
I’ll be here with the pickle jar opener if you need to vent.
PS-wow, sorry if I came across as a hardcore bitch on that last comment!
Hang in there! Like someone else commented, I thought pregnancy was harder after going through infertility. So many questions and concerns. Just follow your heart, and do what you and your DH feel is right. Sending you love and hugs!
Oh Watson, I’m sorry it took so long for me to get here and hear about this. I firmly believe that Twin A is ok…nothing wrong. Yet I can understand the anxiety and fear associated with “what to do”. I think your decision is the good one and I will send lots of good thoughts West to you.
I’ve not blogged in a while either, it seems I have nothing to say or what I want to say is “someone tell me I won’t m/c, someone tell me that my babies are ok ..” and no one can. Not yet. So for now I am quiet and waiting for the thoughts to hit me like they hit you. So that I don’t have to hide anymore either.
I’m thinking of you sweetie, and hugging you from the East Coast. *HUG*
Heya, I know this is scary as I have gone through the same thing myself. We had an increased nuchal fold also on our daughter and it freaked us the heck out. We also didn’t do the amnio. Gosh, around 21 weeks or so we had the level II ultrasound thatwent looking for every other ‘sign’ of downs and she had none. Although we were at peace with the prospect of it by then, for she was still our daughter, we were thrilled everything turned out fine. So I’m just telling you that the numbers do speak for themselves – they are small percentages and it will most likely be all okay. I’ll be crossing my fingers for you.