FUCK.
And did I mention FUCKITY FUCK FUCK?
And OH! I keep forgetting to tell you: FUCK.
I left my level II ultrasound appointment yesterday with a handy little flier entitled, Patient Information: Intracardiac Echogenic Focus.
FUCK.
Twin B has an echogenic focus in her heart, which confusingly enough doesn’t appear to have anything to do with the structure (or functioning) of the heart itself. Rather, it is another ‘soft marker’ for Down’s.
First of all, I fucking hate how the doctors use fucking air quotes when referring to these <bunny ears> soft markers. And secondly, Twin A had the slightly higher risk based on the NT scan. So now this twin’s odds went from 1:500 to about 1:250, same as her brother.
The handy dandy reading material they gave me says, "You have recently learned your unborn baby has an ICEF. We expect that you may have questions about what this could mean for your developing baby [you fucking THINK!?] and hopefully this information will answer some of your questions."
It should also say, "And we hope that you don’t crap your pants in the waiting room after reading this pamphlet, which would make for a less than pleasant experience for your fellow patients." (I don’t know why it doesn’t say that.)
Basically, the ICEF is a bright spot within the fetal heart picked up by the ultrasound. In most cases, the presence of one is nothing more than a ‘normal variation’ of anatomy, but in some cases it could mean there are other problems such as Down’s.
The appointment yesterday was just pure comedy. Except of course, the part about the ICEF and me leaving in tears.
But before that part, the first technician was yelling at the technician-in-training to "turn on the machine like zis and put a tape in and viola! you can get started!" He was Persian but had what sounded to me like a very strong French accent. He was heaving the ultrasound machine around and banging it into the table and plugging cords into the wall and flinging the wires and cables around and I was trying to stay relaxed, but BeBop, who hasn’t been to too many appointments with me, was clearly out of his element and unnerved by the whole thing.
The technician finally got things going and once the babies could be seen on the screen, he kept yelling strange letters and numbers at the poor trainee who was furiously scribbling notes in my file. It sounded like this: "Put 4.5 on E3, and CIRCLE IT! YES!!! NO!! Put 4.5 on E3 over to zee RIGHT – ZEE RIGHT – and CIRCLE IT. YES! GOOD!"
"Do you feel zee babies moving yet?" he asked. "Um, I’m actually not sure," I said. "Well with za first baby you might not feel it for awhile. It is called zee quickening."
"Will I know it when I feel it?" "Oh yes," he answered.
Finally, he asked the doctor to come in and take a look. Immediately warning bells went off in my head, "does he always ask for a consult?" I asked the trainee. She said yes, but honestly I was starting to freak out a bit.
The doctor turned out be like 100 years old, with a shock of white hair and the strongest Irish or Scottish accent you have EVER heard. (Thus the comedy, had it not been happening to us.)
So the technician was showing him the bright spot (ironically named, no?) while he was babbling almost incoherently. I kept interrupting them to ask questions and eventually I got the hang of their accents. But poor BeBop was in a chair, and their backs were turned to him, so he literally could not understand one word of what they were saying.
After the doctor was done confirming the presence of the ICEF, we were in the waiting room waiting for the genetics specialist. The first tech came out and said, "Did you understand Dr. Irish/Scottish Brogue? He speaks so fast and has zee strong accent and many peeeple cannot-uh understand him…"
Every time I would repeat a statement back to him to ensure I understood what he was saying, he would respond with an enthusiastic, "VIOLA!! YES!! You understand zee situation!!"
He went on to explain that about 4% of Caucasian couples have a baby with an ICEF picked up by the ultrasound. In the vast majority of cases, it’s nothing. It either resolves itself and goes away or remains but the baby is perfectly healthy.
But.
In some cases, they have found that Down’s babies have an echogenic focus. This is the same issue with the NT measurements, a higher number doesn’t mean you have a baby with Down’s, but some babies with Down’s were found to have the higher measurements. Thus the annoying term ‘soft marker’ I guess.
In the end, they were not too alarmed because we had done PGD. They didn’t come out and say we should do an amnio, but of course they offered it to us. They did recommend we get a heart scan, but they said this was routine for all twin pregnancies. This was news to me.
I have an appointment next Tuesday for a heart scan and I guess we’ll see what they say. We still don’t want to do the amnio. BeBop would support me if I decided I did want to do it, but I don’t.
Plus, at this point both babies are in the same risk category. Which twin would we test? Pick one? Flip a coin? Test BOTH? Can you see the comedy in this whole scenario?? Yeah. Me neither. But I’m trying here.
Anyhoosers, after we walked out I was stunned, to say the least. "Can’t we just get some GOOD news?" I wailed. "Can’t we just catch a break and get a clean bill of health, so I could worry a little less instead of a lot more?" BeBop was parked in the other direction, so after he tried to console and reassure me, he headed off towards his car. As I approached my own car, any semblance of focus, grace, balance and decorum went down the toilet as I managed to somehow turn my ankle stepping off the curb and FALL INTO ON-COMING TRAFFIC.
Thankfully, the light at the end of the block was red, no cars were screaming by ready to smoosh my head into the pavement. My keys went flying so after it dawned on me that, fucking hell, I had fallen again, I sort of lurched forward and grabbed my keys and stumbled into my car.
And dissolved into heaving, gasping-for-breath sobs.
Then I turned on the car and the song Little Wonders was playing on the radio. I first heard this song just after I found out I was pregnant with twins, and it’s been a huge source of comfort to me every time I hear it.
let it go
let it rub out of your shoulder
don’t you know
the hardest part is over
let it in
let your clarity define you
in the end
we will only just remember
how it feels
chorus
our lives are made
in this small hours
these little wonders
these twisted turns of faith
time falls away
but these small hours
these small hours
still remain
let it slide
let your troubles fall behind you
let it shine
till you feel it all around you
and I don’t mind
if it’s me you need to turn to
we’ll get by
it’s the heart that really matters
in the end
chorus
all of my regrets
we’re washing it somehow
but I cannot forget the way I feel about now
in these small hours
these little wonders
these twisted turns of faith
these twisted turns of faith
time falls away
in these small hours
in these small hours
still remain
they still remain
these little wonders
these twisted turns of faith
time falls away
but the small hours
these little wonders
still remain.
BeBop is still convinced everything is just fine. And that if it’s not, we’ll still be okay. I continue to wonder how on earth women go through this.
I am waiting for the heart scan to see if they pick up anything else and recommend doing amnio, or perhaps don’t see the ICEF at all.
In the meantime I am trying to not think about it or cry too much at work or in the car, but rather just limp around on my sprained ankle and wonder when I’m going to need a full body suit of padding and a helmet because of my worsening clumsiness.
And I’m trying to stay calm, and have faith. Faith that all of this will be okay, that my little wonders are just fine.
Oh hon…
*HUG*
I wish I had words for you. Other than “WELL CAN YOU FUCKING CATCH A BREAK HERE?”
I’m thinking of you and those babies…
fuuuuck.
*hug*
i’m hoping that the days until next tuesday FLY by for you and be-bop. i’ll be thinking of you all.
Gawd, I’m really sorry this isn’t easier for you. Like the ladies above, I’m thinking good thoughts for you and your little wonders.
Oh man, this is so freaking unbelievably unfair. I’ll be thinking of you and checking in. You know I have everything crossed for you.
How stressful!!! I hope that everything turns out completely A-OK and that you have all the loving support you need right now!
Well, fucking crap on a stick. Waiting a week will be as near as you can get to torture – can’t they get you in any earlier than that?
Thinking of you, Watson. And sending you lotsa wishes for good health, good luck, and just plain old good vibes.
Damn Girl, when you gonna catch a break?
I’m so sorry, Sweetie. I’m thinking of you all.
Crossing my fingers for you and the twins.
Fuck. I hope that your little wonders are just fine.
Oy vey. I’m sorry about all this and hope things are all OK.
I’m so sorry you can’t get a break. You and your family are in my thoughts. I’m hoping you end up in the same situation I was in. The doctors kept scaring me from 17 weeks on after my triple screen bloodwork. I went through a scary pregnancy the entire time, but she’s now a very energetic 6 year old. Hoping for the best for you guys.
I’m banking on you being on the right side of those odds. And it’s not an unsafe bet. Hope you can get back to breathing normally.
Bea
What a fuucked up day!! So sorry you have to go through all this drama. I’m hoping it is all for nothing. If it isn’t one crazy fuucked up thing it is another, eh? Hang in there.
well FUCK. Sending you good vibes – got my fingers crossed for a stellar heart scan. hang in there.
Ugh. You don’t need this crap. 🙁 I’m sorry you have to deal with yet another boulder falling from the sky. I’m really hoping that all is good with your babies.
I’m sorry that you can’t jsut get a break! Hoping and praying all is well and in the end it all CAN be a comedy looking back.
Crossing everything crossable that everything is just dang-don-diddly-fine (which I have great faith it is) and your fears are all set to rest soon!
Watson I’m so sorry you’re having to deal with this. But let’s think about what they’ve said. Each baby has had ONE, just ONE soft marker for downs. I know this is terrifying but we’re talking about low low risks here. You haven’t mentioned having the 12 week or 15 week blood tests so I assume you didn’t have those either, so really they are going on very little information. The false positive rate is much higher than the false negative rate on these tests, so the chances are still very much on the side of both babies being just fine.
The fact remains that you really really didn’t need this, and it’s very very worrying. But it’s still very unlikely that anything is wrong.
Given all this uncertainty, you might want to do a bit of research on the amnio risks. At 20 weeks the risks are extremely low, if you just go for the best doc in your area, you will be getting certainty about what is going on and hopefully an end to the worrying.
Oh goodness, I am so sorry you have to wait through this. I’m thinking of you, the wonders, and BeBop…
I’m hopeful for you guys, that the babies are good and you’re okay. I’ll pray for you all tonight.
Watson! If I had your phone number, I’d be on the phone with you in a second.
This is SOOOO not something to worry about. I know you think I’m nuts saying this with such certainty, but my daughter had these in 2 places in her heart, so I did plenty of research, including talking to one of the top cardiologists in Israel. This is the story. Once, about 15 years ago, a group of researchers found what they believed to be a link between this calcium deposit (commonly known as golf balls) to a higher incidence of Down Syndrome. NO TEAM SINCE HAS BEEN ABLE TO REPLICATE THE RESULTS. There are cultures in which the MAJORITY of fetuses have ‘golf balls’ in their hearts. It goes away at birth. The heart scan is routine here too, but the cardiologist I spoke to said that he has seen hundreds of cases, but in none of them has this finding had any significance.
So… please, please, please… take it easy. The calcium deposit disappears at birth and requires NO follow up or anything. My daughter is now 28 months and is perfectly healthy…
Do feel free to contact me – I’ll be happy to call you from Israel and/or send you links to articles that will ease your nerves.
All my best,
Rachel
thank god for rachel’s comment above, i really hope this is nothing to worry about. must we always be in some sort of perpetual wait? i wish these days until the heart scan could just fly by for you, and before you know you have some reassuring news.
OMG , FUCK, FUCK, FUCK. I just hate that you have to keep going through these things (and of course it’s scaring the hell out of me too) Oh sweetie, I am so sorry. However, as Rachel says it could just be nothing and that scan next week might calm all the fears. JC I hope so, I know how much you need a break. Plus the fall had to scare the crap out of you too.
So I am sitting here with tears in my eyes, just praying that there is NOTHING wrong and you can finally get to enjoy this pregnancy.
*hugs*
wishing hoping and praying… hope its all okay.
Oh that sucks. I had an ICEF on my daughter’s ultrasound too, and was almost hysterical crying for two weeks until they did a repeat ultrasound and heart scan and the spot was gone. Completely vanished, which is apparently the norm, and almost every baby with a foci is healthy and normal. It is a soft marker for Down’s, but when i researched it, there are something like 20 soft markers for Down’s, and only seeing one of them isn’t an indication of much.
Hoping that the results of your heart scan next week are good…I remember how stressful this is. Best of luck x a million
Oh, Watson, I’m so sorry you got such scary news! I have nothing helpful to add, so I will just say reread what Thalia and Rachel have written. Hope it helps!
Lots of us bloggers (myself, twisted ovaries, somewhat lower) went through the same worry for NOTHING at all. I hate hate those soft markers and all those horrible tests because they only freak you out for nothing. As someone said, amnio risks are very low (average: 1 in 1,600 ends badly, which means that at a good hospital, the risks are even more minuscule). I had a CVS done because I had to know, and it was painful but very short. Lots of cramping for 2 days (I was on bed rest) and we got the results within 24 hours. Of course, the baby was fine despite the “1 in 70” risk we were given. My advice would be to go for the amnio so that you can stop freaking out. I had the heart scan and it was very worrying — we spent 2 hours there, they kept saying the baby had a hole in his heart, and the waiting room was crowded with very sick children with heart problems. In the end of course, they decided the heart looked fine. Thinking of you
I’m so sorry to hear the news, I really hope everything will be alright. My heart is with you.
Oh Watson..
I am going to say what people said to me. 1:250 is 249/250 chance of things being fine.
That’s amazing odds.
Oh, Watson, I am so sorry.
I hope both babies are among the 249 who turn out just fine. Good luck at the heart scan.
Bless you, sweetheart. I know this must be eating at you. I am thinking of you. I wish I could do more.
FUCK is right. You must be so incredibly stressed…stressed at a level at which you never imagined!
I do think there is room to believe that both babies are perfectly normal. The odds are still clearly in your favor. But knowing that intellectually and feeling that emotionally are two entirely different things. I am sure I would be panicking too.
I will keep you in my thoughts and hope that a little peace comes your way…
I am so sorry you all are under this stress–I am thinking of you, and praying for you guys! I said a big FUCK for you, so hopefully that helps…
holy cow, i’d be freaked too. and i would have fallen into traffic. and not for the first time, either.
but i bet you $$$ that rachel is right. i don’t know much about being preggy but i do know that every woman blogger that i read has had some issue with the NT and god knows what else. so, i KNOW you’ll be frreaked until you are holding them in your arms and can see that they are just fine, but i’d bet the farm (which i don;t have, but jessica lives near one so i’ll bet hers) that they’re going to be PERFECT!
thinking of youxxoo.
Ok so I *KNEW* Thalia would have some good advice for you. Listen to her.
Still, I’m pissed that you don’t get the “everything’s perfect” talk whenever you go in. You deserve it, dammit!
Hugs. Thinking of you today.
Sending you love and light and and extra dose of strength. xoxo
oh GOLLY.
Fingers crossed, prayers sent and fingers crossed again.
So sorry to hear about the awful appointment….I like what Thalia and Rachel had to say….Thinking of you.
If you want to talk about freaking out over a high risk twin and stress, I’m here.
Just wanted to let you know.
Well, I like what Rachel has to say…
I’m thinking of you and BeBop.
Excuse me! Will someone here cut this lady a freaking break. Sheesh, Watson, what a difficult day all around for both you and BeBop.
This is SO not fair! Y’all are in my thoughts.
My goodness Watson!!! I am so sorry you can’t catch a friggin’ break. You poor dear. If this is a predictor of what’s to come for me- sheeeesh!!!! You do have to admit that the whole room full of indistinguishable accents is kinda funny though right? I am trying to picture the horrific look on your DHs face (although I have NO idea what he really looks like). I can only imagine how J would have been looking if in the same situation.
Anyway, you are sincerely in my thoughts and prayers that you will successfully deliver two absolutely healthy babies!!! Keep the faith dear sister in arms, keep the faith!!!!
PS- Thanks for the kinds words on my blog.
I am heart broken that you have to go through this – I’ll be thinking about you and BeBop and the Little Wonders and anxiously awaiting an update. But mainly take care of yourself, your ankle and the Little Wonders.
Hold onto that faith.
I’m hoping, along with everyone, that the little wonders are just fine and that this will all be a funny (air quotes) story to tell them one day.
Hang in there.
Sweetie, I wish it were easy. I wish you could catch a deep breath. Sending many good thoughts to you and the twins.
Just poppin’ back over to check on you. I hope you’re doing ok. You’re in my thoughts and prayers!!!!
Watson, like the other commenters, I hope it’s all ok. Sometimes I wonder how necessary all these tests really are – it seems they mostly scare the shit out of people when everything turns out to be fine.
Thinking of you.
I hate tests!
I hate them! You stay positive.
Shit I’m sorry you guys are going through this Watson. After going thru IF, can’t we catch a fucking break huh??? I’m thinking of you and hoping for the very best results with your Little Wonders. x
Oh fucking fuck, Watson. Look, it’s MY week to be having a fucking bad week, not yours. Didn’t you check your calendar? We’re not allowed to BOTH have bad weeks!
I gotta say, the problem is these guys need an actuary so that they can throw in that little PGD statistic into the works so they can realize that 1:250 odds are really infinitessimally small so that they stop freaking parents-to-be the hell out. I’m not saying I wouldn’t be freaking out to, but just keep taking it one day at a time. Just breathe. Just remember that even 1:250 is a tiny, tiny, tiny little number and that YOUR true number is much, much, much smaller than that. And go ahead and get the heart scan. It will all be good.
I hate that you’re going through all this stress. Doesn’t the universe know things are supposed to be EASY and HAPPY for you from here on out?
That said: Listen to Rachel. She’s smart. 🙂
Oh, wow. What a visit. I’m sorry it wasn’t all rainbows and lolipops, and I hope so much that your little wonders are just how your BeBop sees them.