Level 2 u/s @ 18w6d- and other news

The big event yesterday was the level 2 u/s. First, we met with the genetic counselor, who explained how our odds changed so dramatically in just a month, from 1:150 to 1:16. One contributor was simply the passage of time; chromosomally abnormal pregnancies are less likely to survive to the gestational age when our second blood sample was drawn. The smaller population to which I can be compared exaggerates my deviation from the norm. Additionally, the second blood sample was analyzed for more indicators of a potential problem, so the results carry a bit more weight in assessing the overall risk for DS. There wasn't any one thing that "got worse" and dramatically altered my odds. My results just happened to fall into a pattern that fits with a hgher-than-normal risk.

I asked about the impact of DS on labor and delivery- would my baby's life be at risk if I went into labor not knowing whether or not she has DS? No, it would not. Individuals living with DS are at increased risk of heart defects, but symptoms should be observable in utero via ultrasound and via doppler. Other health complications occur later in life, if at all.

Since knowing whether or not our baby has DS would have no influence on our birth plan and wouldn't change how happy we are to be expecting, we've decided not to accept the amniocentesis that's been offered. Even though the risk of complications is small, the knowledge we'd gain would be essentially useless. Sure, we're curious. We're also curious if this baby is a boy or a girl. And we're curious if she'll be athletic or if he'll be artistic, if he'll have bad dreams or if she'll eat her vegetables without a struggle. But all these things will be revealed in their own time, and that's part of the joy of discovering and learning who this little person is. I don't want to know it all at once, now. So, no amnio for us.

Then we had our u/s and consult with the MFM specialist. Unlike the tech who did our NT scan, this one was all business. This was no photo shoot. We watched as she collected images of Ishkabibble's brain, heart (4-chambers, just as it should be!), kidneys, arms, legs, fingers, toes, stomach, intestines, and spine. Much of the time, it was hard to tell just what we were looking at. When she got to Ishka's privates, she advised us to turn away from the monitor. C wanted to look, and that would've been OK with me as long as he kept his mouth shut and let me believe he was as ignorant about Ishka's gender as I am. but, no, he had to ask me if I'd mind if he looked. Silly man! Luckily, even though he then looked, he had no clue what to look for because the images don't look much like 3-dimensional babies and he hasn't had a lot of practice looking at ultrasounds.

Then the MFM came in and revisited a lot of the body parts that the tech had examined. She explained a few specific markers that she was looking for with respect to DS. The humorous in each arm is often distincltly shorter in a fetus with DS. The kidneys are often enlarged and prominent. And there's frequently a thick fold of skin behind the neck. Ishkabibble had none of these markers. The GC had advised us that if no markers were found on the u/s, then our odds would essentially be cut in half, but the MFM wasn't comfortable putting numbers on anything. I'm simply satisfied that our odds did not get any worse. There was nothing apparent to strengthen a suspicion of DS, and Ishka appears perfectly healthy. Hurray!

Believe it or not, that wasn't the best news of the day. One of my co-workers congratulated me on the pregnancy and asked how much time I planned to take off when the baby's born. I explained that I wasn't sure I'd be able to afford more than the 4 weeks of vacation that I'll have saved by then. Then she gave me the best news I've heard in quite a while, maybe since the BFP and Ishka's first u/s... I am entitled to 8 weeks' PAID sick leave when the baby is born! And that does not include any sick time I might need to use before the birth to accommodate bed rest or complications that preceed delivery. Under FMLA guidelines, I'm allowed 12 weeks' leave following the birth. Now I know I can use as much of that as I want without missing a penny of my salary. With C laid off and trying to start a business (and me praying for another snowy winter), I've been worried about our finances lately. I slept better last night than I have since C was laid off. Hurray!

some days, I just want to give up

With all the controversy surrounding the H1N1 vaccine, it took a lot to convince myself that the risk would be outweighed by the benefit. I asked the midwife if her clinic would be getting the vaccine to distribute.

Wouldn't it make sense, if pregnant women are at the top of the list of who should get the vaccine, that the vaccine should be distributed to OB's offices? Am I unreasonable for thinking that way?

Anyhow, no vaccine at the midwife's/OB's office. She instructed me to contact my primary care doc (does anyone really see their PCP more often than their OB/GYN/RE?- what a misnomer!), so I did. I specifically inquired about the H1N1 vaccine. I did NOT ask about the seasonal flu shot. I didn't even mention it. I was surprised when I got a call back yesterday informing me of a flu clinic this Friday and letting me know that they'd booked a slot for me. How nice! I was happy to be getting that over with before I had a chance to reconsider.

So, today, the PCP's office called to confirm Friday's appointment for the vaccine. Just to be on the safe side, I said, "This is for the H1N1 vaccine, right? That's the one I had called about." Nope- it's the seasonal vaccine. And no, they're not taking names or making a list or offering any information on the H1N1 vaccine. I'm welcome to call them every few days to ask if they have it or know when they'll get it, but they can't promise that they'll ever get it.

Am I overreacting or is this utterly ridiculous? Pregnant women are supposedly at the top of the "list" of recommended recipients of the vaccine, but no one knows where to get it or when it'll be available. And, the real kicker, no one seems to give a damn. They put the fear of God and a dead fetus in our heads and then turn their backs on us.

And what about the thimerasol-free vaccine that's apparently preferred for pregnant women? No mention of it anywhere. When, or more accurately IF, I ever get into a flu clinic for the H1N1 vaccine, will they give me the chance to look at the bottle to see if there's mercury in it? And why do they hide mercury behind the totally not-mercury-sounding name of thimerasol?

At this point, I am about ready to just give up on the whole vaccine thing. Screw it. If it's this hard to find, it must not be that important.

I have the level 2 u/s apointment, along with a consultation with a genetic counselor and an MFM specialist, tomorrow afternoon in a big city hospital. I'll ask there about the vaccine and mercury. Maybe, since they're BIG, they'll actually know something.

One last thing- a friend's daughter got the seasonal flu vaccine two weeks ago. Today, she was diagnosed with the H1N1 virus. Just a little anecdotal evidence to support my decision not to get the seasonal vaccine first.

No matter what, Ishka is loved

I finally got to tell C what was going on when I got home last night. The bottom line, on which we both strongly agreed, is that we love this little one growing inside me, and if Ishkabibble turns out to have DS, then we'll just deal with that. At no point would either of us consider terminating this pregnancy. That was absolutely never an option.
We've both known individuals with DS. I've worked with the Special Olympics, and one of C's distant cousins has a child with DS. All I want is for our child to be able to enjoy life.

That said, from my reading yesterday I learned that there are a number of health issues faced by people living with Downs. I don't want an amnio just to test for DS. If our baby has it, so be it. We love Ishka no less, and the knowledge would not affect how we feel about this child. So, from the perspective of knowing just for the sake of knowing, I'll wait until we meet Ishkabibble face-to-face. That's how I feel about learning the baby's gender, too. BUT- because there may be health issues that could potentially complicate how Ishka enters the world, I want to do all I can to find out if she will need immediate intervention or a specialist standing by at his birth. I don't want to enter labor blindly or naively thinking that everything is perfect. I'd like to anticipate whatever complications we can, based on whatever testing the MFM recommends for HEALTH reasons, not for the sake of simply knowing.

I haven't received a call back from the midwife yet with the date & time of my level 2 u/s and appointment with an MFM. Until we have the information and guidance that I hope to glean from those, we're in no position to make any decisions regarding amnio or anything else. For now, I am just happy that Ishka's heartbeat sounded strong and healthy this morning on the doppler, and I'm looking forward to feeling movement from the baby on a regular basis. I am thrilled to be pregnant and can't wait to see C in the role of father. Truly, nothing has changed. And we still have the 15/16 chance that Ishka is perfectly "normal."

unexpected phone call... at 18w0d

Sitting at my desk at work. Phone rings. I answer. It's my midwife, and she has the results of the second round of blood work related to the testing for Downs Syndrome. I brace myself, but really am not at all prepared for what she has to say. Just a month ago, she told me our odds were 1 in 150. There was no caveat or stipulation that another blood test could reveal something completely different. I thought we were in the clear, and in spite of my age we'd have a healthy "normal" child.

The baseline chance for someone my age having a child with DS is 1 in 47.
My odds, one in sixteen.

Why can't I focus on the fact that this means we have a 15/16 , or better than 93%, chance of our child NOT having DS?

Why am I thinking that this is so horrible- that our potentially only shot at having children won't turn out perfectly? What's so wrong with having a child with DS? Why am I thinking that if our child does have DS, we won't want to try to have a second child? Am I a bad person for wanting to have a perfectly healthy child, and for considering DS to be a defect?

Do I want to do an amnio?
Do I want to know for sure before I give birth?
What affect would knowing ahead of time have on how we treat this pregnancy and this child?

The Level 2 u/s is even more important now. Not that they can diagnose DS from an u/s, but apparently there are certain indicators that can be seen. We'll receive genetic counselling from an MFM specialist, and I can have an amnio done if we want it. I'm trying not to think too far ahead until we have more information.

I feel as though we just got too lucky and this is the price we have to pay. With every windfall comes an unexpected expense.

And I can't call C right now because he's essentially on a job interview today, all day.