Thursday, January 09, 2014

The Other Shoe

I'm talking about my pregnancy, though today's news isn't necessarily happy.  But if any sort of pregnancy/baby talk is upsetting to you right now, please skip this post.  There's going to be an ultrasound pic at the end, too, so I just want to warn you.

I'll start off with a funny story and then get to the shitty part of today.  Last weekend Jeeves and I visited his brother and family and we got to tell our nephews J & A that we are expecting and they are going to have a little boy cousin this year.  They were very excited and sweet.  J told me he thought I would make a great mom (awww, he's 8!  How cute is he?) and he later told his dad that his favorite present he got (we had exchanged Christmas gifts) was the news of a new cousin.  A was just really excited that he won't be the youngest anymore.  J & A brainstormed names and here is what they came up with: Manuji (pronounced Ma-NOO-Jee), Matrugio, Cousin, and Tom Brady (please note that neither Jeeves nor I is a Patriots fan).  Jeeves and I thought Manuji was pretty funny, so we have taken to calling the tiny bun Manuji.  Don't worry, we're not going to name our kid Manuji.

Now to the shit.  Today was my initial anatomy scan.  Early in my pregnancy, I thought that I would just get one anatomy scan around 20 weeks.  I guess that's what they do if you're younger, but apparently my OB's practice is to send older moms who don't get diagnostic testing done for an initial scan at 16 to 18 weeks and a detailed scan at 20 to 22 weeks.  Today I am 17w2d.  And shame on me for letting my guard drop.

It's not that I let it down completely.  I'm currently in the window where most women with incompetent cervix will have a miscarriage.  A good friend of mine had a miscarriage at 17 weeks from incompetent cervix, so I have been a little on edge about it this week.  But in terms of Manuji himself, I felt like things were good.  I've started to feel little flutters of movement, my MaterniT21 came back great, my Nuchal Translucency and accompanying blood work were good.  I thought we were maybe okay.

So, the scan.  The tech exclaimed that the baby was in a great position for her to see his heart, so she did that right away.  We could see all four chambers pumping away, which was super cool.  And we got to hear his heartbeat.  Heartrate was good.  She moved onto other things - she was able to find his kidneys, he doesn't have a cleft palate, the placenta is far from the exit, and my cervix is nice and long (huge sigh of relief from me).  His umbilical cord has two arteries.  His arms looks fine (amusingly, he was lying with his right arm behind his head and she had to poke him repeatedly to get him to move it... which he finally did, and waved at us).  His brain was fine.  But she complained a lot about the positioning of his legs.  He had his feet tucked up in a corner between the placenta and my uterine wall.  It didn't seem to matter what she did, he wasn't interested in moving them out of his little nook.  She had me go to the bathroom, do squats, roll over onto my left side, then my right.  Twice.  Then more squats.  He just didn't feel like moving them.  She also had trouble getting a shot of his spine, but finally managed to get a shot of his tooshie which showed that his spine has sealed, so that's good.  

But yeah, she was obsessed with getting a shot of these feet, and I couldn't understand why.  We knew from the NT scan that he has two legs, so what's the problem here?  I soon found out.

The tech said he was measuring well, and weighed 7oz.  She wanted to go see the doctor, and the doc might want to check me herself.  At this point, I was worried it had to do with his spine, because she had only managed to get him to roll for a second and there was just one shot of his spine.  The doctor came in, and she explained about wanting to look at his feet.  I asked about the spine and she said the shot of the spine was fine, she was satisfied it was closed.  The doctor spent a long time silently looking at his feet, trying to get shots.  She finished and told us to come in a see her in her office, but explained that it was possible our baby has clubfeet.  Fun!  Dickensian!  Thanks, Doc.

Anyway, here's a rundown of what the doctor said.  Basically, little Manuji is sticking his feet in a place that makes it hard to see.  In some of the pictures, his feet look normal, in others they look clubbed.  She explained what clubfoot is, you can read about it here.  She said based on the pictures, she would say there is a 30% chance he has clubfoot.  I know I should find that comforting, but I'm pretty sure she just made that number up and she was not a comforting person by any stretch.  I regret not asking her where she pulled that number from.  Sigh.  She recommended I come back for yet another fucking scan in 2 weeks when his feet will be a bit bigger and theoretically easier to see.  I pointed out that my detailed anatomy scan is in 3.5 weeks - early February.  Could we just wait till that?  No, she'd rather I came in 2 weeks.  So you see, despite her somewhat reassuring words, her demeanor and her insistence that we return in 2 weeks leads me to wonder how straight she is being with us.

Of course I went back to work and spent a lot of time googling clubfeet.  I want to say that if the baby has clubfeet and that's all it is, of course I will be upset, but it's theoretically correctable.  I don't love the idea of my newborn son having to wear casts and braces for the first 2 years of his life, but it's certainly not the worst thing in the world.  But my concern and anxiety over this has more to do with what more it could indicate.  Some kids have unexplained clubfoot.  But others have it because they have trisomy 18 or any number of other serious conditions.  I started to get nervous that the reason the doctor wants me back in 2 weeks is because of these more serious conditions, and that I'm going to be strong-armed into having an amnio.

Later on, I talked to my OB, Dr. C, who had spoken with  the ultrasound doc.  Basically she said, "we just don't know."  It could be something, it could be nothing.  This is the problem with early ultrasounds, Dr. C, explained - stuff is too small to get a good picture.  Which begs the question - why did she send me for one?  I sort of said as much, and near as I can gather, because of my age and the lack of diagnostic tests, they think it's good to go early for the initial scan, and then do the detailed, so if there's a problem, they can get more testing done sooner.  Whatever.  According to all the screening tests I have had, the odds of the baby having trisomy 18 are low (and I looked up the other ultrasound markers for it, and I don't have any of them).  But hey, these tests are just screening, not diagnostic, so who knows.  Doom and gloom alert ahead.  If it is trisomy 18, in all likelihood I will have a second or third trimester miscarriage or stillbirth.  In the unlikely event that the baby is alive at birth, he will in all likelihood die within his first year of life.  I mentioned my concern to Dr. C about getting pushed into an amnio and she assured me they would not do that.  But that if the next scan indicated clubfeet, she would want me to get a fetal echocardiogram because a heart defect and clubfeet would strongly indicate a chromosomal disorder.  FML.

It should come as no surprise that talking to Dr. C and the ultrasound doctor did not fill me with positivity and smiles.  I appreciate that they aren't blowing rainbows up my ass, but I'm also kind of frustrated with their response.

Did I mention the part where ultrasound diagnosis of clubfoot has up to 20% rate of false positive?  Yeah, there's that too.  Awesome.  So basically there's no real way to know anything until the baby is born.  

I haven't been crying or anything.  Mostly I'm just angry.  Angry that after the year we had, there's still more bullshit.  Angry that our little bun might have to go through a lot in his first two years.  Angry that I had top-of-the-line screening tests which indicated a ridiculously low likelihood of chromosomal disorders and those tests might be wrong anyway.  Angry at people who have no worries like this.  Angry that I didn't question my doctor about why I was being sent for two scans instead of one.  And most of all, angry at myself for letting myself be happy for one damn second, for thinking for a minute that this was going to be okay.

Okay.  Rant over.  We did get a really great ultrasound picture of the babe, posted at the bottom.

Tomorrow Jeeves and I are picking up the rental car and driving down to the DC area to host Kate and Bart's baby shower.  Wish me luck.

Dad update - he's feeling much better and looking like his old self.  Dr. T is putting him back on a targeted chemo drug called Vectibix - Dad responded very well to its cousin, Erbitux.  This means weekly infusions, which means I'll be back to going out to NJ to take Dad to the doctor every week.  Not thrilled about that, but nothing to be done about it.

So I'm in another two week wait.  What else is new.  Please know I realize there are so many worse things you could be told at an initial anatomy scan, that I know in many ways we are so, so lucky.  I do know that.  When I was on Facebook today, looking at all my friends' beautiful kids, I didn't, not for one second, wish my kid was like their kid.  Whether Manuji has clubfeet or not, I wouldn't trade him for anything.  No, the only person I was jealous of on Facebook today was a friend who posted a picture of his pretty gray cat.  I miss my cat.


12 comments:

  1. Oh Megs, I'm so sorry! How stressful!! I really, really hope and pray that the baby doesn't have clubfeet, or if he does, that's it's unexplained and correctable and you have a nice, long healthy life with him! What a shitty day, eh? Hugs!

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    1. Thanks, Rach. Your prayers right now are so appreciated.

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  2. I'm so sorry that you got troubling news! Ultrasounds are supposed to be so exciting and to get even the slightest hint that something could be wrong is just awful. You and baby are in my prayers, whatever happens!

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    1. I know, and I usually dread ultrasounds but I was actually excited for this one because I thought it would all be okay! Sigh. Thanks for the prayers.

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  3. Megs I am so sorry you had this news! Praying its just cause he really was comfy and didn't want to cooperate today.Hoping at your next scan his feet are just perfect! But if they aren't-- my good friends daughter was born with club feet, she's five now and she's had a few surgeries, but last weekend I watched her run all over the squad building and chase her brothers around. You would never have known there was an issue! Praying for you all! xo

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    1. Kasey, thank you so much for that story. I went online and read similar stories, but it makes me feel better to hear about it from someone I know. Hopefully the baby was just sleepy and comfortable and didn't want to move his feet, but if that's not the case, it makes me feel better to know that there are plenty of kids who have dealt with this and are okay.

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  4. Oh honey. Do not be angry at yourself, please don't. I know it is so hard to be happy and hopeful and this shit infertility makes you feel guilty for letting go and just being like any other fertile pregnant woman. But as hard as it is, you deserve to be happy, you deserve to not go into every ultrasound wondering if something bad would happen. And I am angry alongside you and for you, I am fucking furious that you would even have to go through this on top of everything else you have been through. And I believe it will be OK, I refuse for it not to be. Do you hear that universe? We refuse for this not to be a false alarm and baby boy just being stubborn and not wanting to move out of a comfortable position.

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    1. Thanks, Sarah. After the appointment, other than being angry at the tech and the doctor, I was just like, "this is what you get for letting yourself feel happy." Which is silly, of course I should be happy.

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  5. Manuji is such a funny story and nickname. As for the ultrasound, I am angry for you! Why in the world the tech and doctors were so obsessive when the feet were in a difficult position and it's too early. Why wouldn't they keep it simple and say we'll check the feet at the next ultrasound. I'm so mad that now you have another wait to get through. I truly hope that this turns out to be nothing. Until then, sending you peace and calming thoughts.

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    1. I know! It was such doom and gloom, they should have just said what my OB said which is "it was too early and they can't tell either way." That sucks too, but it has the benefit of being honest.

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  6. Your baby looks like a BABY! Despite your anger (which I hope passes soon and is replaced by relief of good news!) I think you have a good attitude towards everything. I always feel lucky to have your perspective in my life, and I hope the rest of this year goes smoothly. Good luck.

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    1. Thanks, Adi! He does look like a baby! I think he's pretty cute.

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