Thursday, January 11, 2007

And Now, the Very Long Version

Why can’t something be related to this pregnancy be easy? So it’s like we are back at square one, waiting to see if everything will be ok. Back to the starting line.

I need to write this out to get it out of my head. Skip this entire post if you are easily bored by bitter rantings and too much detail. I'm in no mood to edit.

To start with, our u/s technician had the personality of a troll. A bitter, mean, pissed off troll. She was very cold and impersonal. And her wanding technique sucked so much that it actually hurt for the first time during the trans-vaginal portion of the exam.

Despite the fact that almost every doctor and technician narrate every second of their exams, this one said nothing. I had to ask questions about the fuzzy images we saw: “Is that the head?” “Is the heart beating?” Which baby is that?” She grunted one-word answers and seemed vaguely bored and most definitely disinterested. At one point, Nicole asked her a question. The tech looked right at her, but didn’t answer.

Halfway through, the tech asked me how old I was and I answered. I asked her why…did that have to do with anything? And she said no, even had the gall to act like she was “just asking a question, that’s all.” (The doctor asked the same thing later when he came in…turns out they were asking for a reason.)

I ask continually if everything looks ok and she says continually that it all looks fine. Now I know she can’t really say anything, but I was quite clear with her about how nervous I was and how anxious I was. I don’t expect her to tell me about anything bad, but I am just pointing out that she is a cold-hearted liar. At least she could have said “The doctor needs to look at this” or “I just measure…the doctor explains what the pictures mean.” I know I am being picky here, but whatever.

We asked if we can find out the sexes and she seemed bothered by this. She said it was too early. Nicole asked when you can typically determine sex, and the tech said at 16 weeks. But I am 17 weeks? What the?

So she pokes around, trying to determine the sexes anyway and says “It looks like Baby A is a ….” And then stops. Nicole and I waiting anxiously to hear her answer. She doesn’t answer for about 5 minutes (seriously….five minutes). She stops and starts this sentence stem several times. And leaves us hanging. Finally she pulls that scanner thing off of me and says “looks like it is two girls.” Like it is an after-thought. Such a cold, distant, icy delivery. No “Baby A is and Baby B is,” to build suspense. No warmth. No smile. I turned to Nicole and made some comment like “Two girls…wow.” And the tech suddenly becomes Miss Chatty and says something like “Was that not what you were expecting?” in a kinda rude way. By now I am not easily holding my tongue and I respond something like “We were expecting two girls, or two boys or one of each.”

The tech goes to get the doctor on duty (standard procedure) and leaves Nicole and I alone for a few. I turn to Nicole and whisper that she is mean. I take mean people as a personal affront; they just wash of Nicole’s back. Then we talk gender. I’ll admit, I am a little disappointed there isn’t at least one boy. Someone to carry on Nicole’s last name (no boy babies on her side). Plus we both have a definite boys name picked out that we both love to pieces. And someone needs to watch football with Nicole and play golf with her because it isn’t going to be me (yes, I know girls can do this, too, but what a perfect if stereotypical and bonding mother/son activity).

Then the doctor comes in. He clicks through the pictures at a lightening rate. Like one picture per second. He gets to the picture of one head and stops. He starts saying “see this here” and my stomach just drops. His tone, the way he looked at us, I knew something was wrong. He goes on to describe choroid plexus cysts, and my head is spinning. Am also having a hard time with his (I think) Russian accent. I stop him and ask “which baby?” and he responds “both.”

Search the internet and there is tons of info about these cysts and how they can mean absolutely nothing. But search the internet for instances of BOTH twins having this and you’ll find zip. Nada. Barely a mention. What this means, I don’t know. But I do know that BOTH babies having cysts is bad news. And I did have those two miscarriages already. I may be going out on a limb here but how weird is it that both babies have this random marker? One is hard enough to deal with. But both?? Sounds like I make some bad eggs.

These cysts are, unfortunately, a soft marker for some serious stuff. And my advanced maternal age (all of 34) is another soft marker. We are up to two markers. The wild card here is were there any other markers? The doctor said the heart and organs looked fine. But we didn’t think to ask about the clenched fist. (One of our 15 take-home u/s pictures shows Baby B’s clenched fist. Clenched fists are a very bad sign.) The doctor didn’t talk to us about clenched fists. He just said I should speak with the genetic counselors and sent us over there.

But it’s both babies.

We received the red carpet treatment in the genetic suite. They spoke with us right away. The counselor was so nice, but I hated that I was some textbook anecdote: “If the patient is despondent and hysterical, gently push a box of tissues across your text and repeat how sorry you are to even have to talk about this with her…” and other trite textbook case scenarios that she undoubtedly acted out in the grad classes. I hate crying in front of ANYONE, even Nicole. I asked for a pen and paper and she gives me a pad of paper. One sheet would suffice, I’d like to think. We went over the options. The counselor made it clear that everything could be just fine. But everything could also be all wrong. I guess thsi day wouldn't be complete without discussions of fetocide. But these tests I’ve done are screenings and these finding are only markers. Only amnio tells for sure. Suddenly my 1 in 9,200 screening stat evaporates and we are on the amnio path.

So we are doing amnio with FISH. I know FSH, but not this F.I.SH, and I am too weary to google more. FISH results typically take 36 hours, but since ours will be done on a Friday, we will have to wait till Monday or Tuesday to get the answers. The FISH checks for Trisomy 13 and 21, Downs Syndrome and X and Y. So we will be able to find out for certain the sexes and see if Tech Doom was right about two girls. And we will know for certain if either or both babies have Trisomy or DS. I’m not sure why then we wait for the amnio results 10 to 14 days later, but that’s what we do. I think amnio shows other defects and abnormalities. I’ll have to pay attention better tomorrow.

And here I thought we would celebrate today’s stunning sonogram with icebox cake and dinner, and I would be happily scanning in 4D pictures to share.

So hear I am. It’s almost 11:00 on Thursday night and I haven’t eaten since noon. I am pissed off that we can’t have a normal or easy pregnancy, free of crap like this. I am pissed that Nicole has to rearrange her work schedule yet again to accommodate this stupid stuff. I am scared to have amnio. I am terrified that one or both babies are going to have a serious chromosomal abnormality. I’m scared that amnio is going to kill them. (My first act as a mother? Putting my children in danger’s way to risk amnio. Give me mother-of-the-year-award) I am pissed off that I have to miss the first day of classes for my last semester (over achiever that I am) and that I had to email my professors and explain that I won’t be in class. I am pissed off that I am on bed rest for a day. I am annoyed that we had to cancel a visit from our first-grader nephew because, let’s face it, I am too much of a mess/selfish this weekend to even think about seeing other people and I am not one to ever be distracted in times like these by anyone or anything. I am pissed that if this pregnancy doesn’t make it, then I am fat and have miles and miles to go to get back into shape, without the benefit and solace of having a baby that made me that way. I am annoyed that I am too impatient to wait even three or four days for results. I am pissed that my usually-absent mother actually called for a change, but said after I summed up the day’s finding with “so today wasn’t such a good day,” she responds with “Maybe tomorrow will be a great day.” I doubt that! I'm pissed that this awful news might make other women who are pregnant and scared much more scared. I am annoyed that “amnio” and “Trisomy” aren’t even in my computer’s dictionary. I am annoyed that these cysts appear in 1 to 2 percent of all pregnancies and ONCE AGAIN I hit these odds. I’ve never seem to have met a long shot that I couldn’t ace. And I am mad at the world because I had to see my stronger-than-anyone-I-know girlfriend cry and feel her tears on my arm and not be capable of making HER feel better for once in my freaking life.

Amnio is 8:30 tomorrow morning. The best part was when the counselor said to us that after the amnio, no sex for 24 hours. Because nothing puts me in the mood like amnios and cyst-on-the-brain and potential chromosomal problems. Is she kidding me with that?? Do people really hop into bed and get it on? Did I really need the “nothing in the vagina” speech? At least it made me laugh.

Thank you all so, so much for you encouraging words and personal anecdotes and support. As you all know—most likely from being in some sort of similar horrific situation—it means so much. Like invisible strings helping to keep me up. If you read to the end of this post, you deserve some sort of medal.

19 comments:

UtRus said...

ohmy. what a post. that ultrasound tech sucks. I hope everything turns out to be ok and i am glad they can do this special amnio to give you guys some answers. I am sending you both strength - the waiting will be tough, but i guess... what is already is, you just need answers. hugs to both of you and wishing for a good solid outcome. your sense of humor in that second-to-last paragraph... well... you are an amazing woman. a lesson to us all.

kim said...

First of all, you have to know you are allowed everything you are feeling, because the truth is having to go through this sucks. Nobody should ever have to. I wish I could say something prophetic, but a good friend once told me that sometimes what you really need to hear is the simple truth that we are crying for you and thinking of you.

Our prayers will be with you, Nicole and the twins tomorrow morning.

Infertilepediatrician said...

I'm so freaking sorry that you are having to go through this. 2007 is supposed to be a good year. Even if everything turns out to be fine, it sucks that you and Nicole are having to go through this.

In my professional experience, I have taken care of many babies who had choroid plexus cysts noted on prenatal ultrasound that were completely normal. I did some research for you today. I found that choroid plexus cysts do not interfere with fetal development and in a study of kids with a history of choroid plexus cysts prenatally their development through age 5 was no different than the cohort of kids w/o the cysts.

I also read the ACOG (the main ob/gyn group) guidelines regarding choroid plexus cysts. They state that if their are no other soft markers and that if the nuchal fold u/s is normal and the triple screen is normal that they do not recommend the amnio. I'm telling you this, not because I don't think that you should have the amnio (I absolutely would have it) but rather to hopefully reassure you somewhat.

I would be glad to e-mail you some of the information that I found if you would like. Please let me know if there is anything that you need.

R and I will be thinking of you and Nicole tomorrow and hoping for good news on Monday.

lagiulia said...

I'm thinking of you today. I am so sorry you are having to deal with this. The commenter above mentioned a triple screen. You probably know this, but triple screen is inaccurate for twin pregnancies. I'm glad you're having the amnio, and I'm thinking and hoping it will give you some peace of mind. Lots of love to you both.

bri said...

I keep thinking 'SURELY they won't have to have anything else bad happen to them. SURELY this will be a bad thing to get through but it will all be OK.' If it were me, I don't know if that would help, though. If it were me, I imagine having to prepare for the absolute worst. I know that the worst in this case is really fucking big and scary. I don't know if you can manage to let the other, fine-in-the-end possibilities in or whether that's just impossible right now. But we will all be out here focusing on them with all our strength. You see that you are very much cared for and held up by us - we researched and poked around and tried to get a good idea of what this meant and we are all checking on you several times a day. Now we will be here with you while you wait this hideous wait. Keep writing. Keep letting it out. I swear it has saved my life many, many times.

art-sweet said...

I am just thinking tons of good thoughts for you guys and wishing a really brutal attack of itchy bloody disfiguring warts on that u/s tech.

Brooke said...

A stranger who got here via Bri; sending you enormous amounts of good thoughts & hopes & white light. No one should have to go through all of this.

(That bit about the no-sex? You gotta wonder about the people for whom such an admonishment was created...)

Jen said...

I am so sorry you are going through this and will be adding my love and light to the rush coming your way from the Internet.

Sophia said...

i want name and location of that u/s tech. She needs a beat down.

And we're praying for you, Nicole and the little ones. I'm free tonight so let me know if you need to meet.

Liza said...

I'm going with Sophia to take on the u/s tech, who really needs to find a new career. One that doesn't involve any aspect of customer service.

I am SO sorry that all this is happening to you. It sounds scary and miserable, and count me in among those hoping it will all turn out ok.

Motel Manager said...

I'm so sorry you are having to go through this, and I totally emphathize with the sentiment of "can't anything be normal with this pregnancy?"

For what it's worth, two pieces of info/assvice:

1. I did an amnio and found the procedure itself to be almost painless, very quick, and really no big deal. It takes like 45 seconds (probably per baby) and I felt great confidence in the doctor as he was doing it. The u/s guidance will make you feel confident they're in the right place. And my doctor's feeling was that if something is going to go wrong post-amnio, it'll happen in the two days afterwards, so once I was past that, I breathed easier.

2. My FISH results came back within a day - I hope you'll get that sort of good luck. They were good, although my complete results later had an abnormality (hence my comment above about empathizing with you). The FISH results supposedly account for about 95% of what is likely to be wrong (chromosomally).

3. I've had two friends with singletons have the cysts issue, and neither one had a Down syndrome or other trisomy issue. One friend told me that in the absence of other markers for common trisomies, your chances are good, but I have never Googled this myself, so this is purely anecdotal.

I hope everything goes well today, and that you get positive results quickly and can have that coveted normal pregnancy from here on out!

cristin said...

I'm so sorry. I hope everything turns out ok and that you can have an uneventful pregnancy.

I'm sending good thoughts your way.

Married Lesbian Mom said...

All 4 of you are in my prayers. I have been lurking for some time, but I NEEDED to tell you how much you wil be thought of this weekend. My wife will be having her firt ultrasound tomorrow to see if we are having twins. I will be thinking of your girls at the same time. (((HUGS)))

Shelli said...

wow, I send you strength and love, and easily dissovable cysts, and a sparkling clean amnio.

Calliope said...

thinkinng of you BIG time

Anonymous said...

I just happened by here today, but had to respond. My daughter showed choroid plexus cysts in both halves of her brain at our 18 week ultrasound. We too did the amnio and were basket cases while waiting for the results. She was FINE, PERFECT, and had no problems whatsoever. I have read alot about this since then, and when the babies don't show physical signs of trisomy, it's very rare that it happens. The cysts dissolve and all is fine. I hope this will help a little, I know it is hell waiting.

Leggy said...

Just started reading you a week ago or so because I am also PG with twins after IVF (16w3d today) and was looking for other pregnant with twins people.
Anyway, I just had an u/s last week at 15w4d and they found one CPC on one of my twins. My nuchal fold was good at 11 weeks, we didn't do the triple/quad screen (because as another commenter said, we were told its meaningless in twins) and there didn't seem to be any other markers in the u/s. Both the high-risk OB and my OB said they don't think it's anything to worry about and they wouldn't recommend an amnio if it was their wife with the same issues. I also found an Am Journal of OB/GYN article that said the chances of Trisomies with only CPC was pretty slim. So we're forgoing the amnio for now and awaiting the 20 week scan, but its still nerve-racking. I'm glad your girls are fine and I envy the peace of mind that the amnio brings (as much peace of mind as a pregnant infertile can have). Your situation reassures me.
My blog is PWP, but I'm happy to share if you want to email me.

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