Friday, May 25, 2012

One Crazy Story, Part 4: What Does Hell Feel Like?

The previous parts of this story can be viewed by clicking here for part 1, here for part 2, and here for part 3.

This is where it gets tough, people. This is the hard part to write.

So, we've seen a heartbeat at 6 weeks pregnant. Given this and all of the great test results, Dr. S has now entrenched himself in the no-miscarriage camp. He's pretty convinced that, even though I'm not out of the first trimester and still in the high-risk-for-miscarriage zone, if the fetus has survived all it had been through, then it was most likely here to stay. I spent the next 5-ish weeks trying to adjust to the fact that we were having a third child. And listening to everyone say that this was going to be the girl. 

It's a girl! I know it! It's your surprise girl! 

Apparently, a lot of people really wanted us to have a girl.

Sometime in the 11th week, I went to the OB for what I thought was a *standard* prenatal test, the nuchal translucency. I thought every physician offered this test but I've since learned that many do not

It's specific testing on mom and fetus between 11 and 13 weeks gestation and is a combination of a blood draw on mom to test the levels of two different hormones, and an ultrasound of fetus in which they measure the thickness of the back of the neck, called the nuchal sac. (What is it with the term "sac" in relation to pregnancy?) This sac is only present during 11 and 13 weeks gestation, and therefore the test can only be performed during that time. The results are supposed to identify the chance that the fetus has Down's Syndrome (DS), some other chromosomal disorder, or some other birth defect like a congenital heart defect, but the primary objective is identifying DS. The thicker the sac, the higher the chance of DS.

At this time, I was 31 years old, and the risk for a woman to have a DS baby increases exponentially after they are 35, and especially 40. So I was still in the safe zone, and the risk for my age was supposed to be like 1 in 613 or something. Dr. S began the ultrasound. 

He measured the thickness of the nuchal sac, measured it again. And again. Then he said, "I don't like what I'm seeing. This sac is too thick." My heart started thumping. He measured it again and again, each time just trying to get a better result. Finally, he said that the best he could get was 2.7mm, and he needed to see it at 2mm or under. 

He then reviewed my blood work results and delivered the blow: The baby has "screened positive" (not TESTED positive; big difference) for Down's Syndrome. The chances of it actually having it were 1 in 48. Forty-eight.


I crumbled. 

I was absolutely devastated. I could not believe it. I mean, I was young, there is no family history, what the fuck?? Dr. S was careful to explain that I had only screened positive; this was in no way a confirmation of DS. 

To know for sure, I had two options, a chorionic villus sampling (CVS), in which they take a sampling of the placenta and grow the chromosomes from the sample to see if there are any missing or extra ones, or an amniocentesis, in which they draw a sample of amniotic fluid out and test the chromosomes. 

The difference is that a CVS could be done right away, but we'd have to wait two weeks for the results, and with the amnio, we'd have results in two days but had to wait until the 16th or so week to do it. In doing the math, the CVS would yield quicker results, so I told him to sign me up for that option. The CVS also has a slightly higher miscarriage rate than the amnio, but they aren't sure if it's because of the test itself or the fact that it's usually performed at the end of the first trimester, when the miscarriage rate is higher than at 16 or so weeks. 

The other thing was, either one would identify gender, since they had the chromosomes. Oh hey, yay, a perk.

I was bawling. Nate was at work, the two boys were with his mom. So I was alone. Dr. S was amazing with me. He sat with me and did his best to comfort me, but really, what could he say? What could anybody say? He told me all the ins and outs of the test results, what normal range was and how I fit into it. The tiny bit of light at the end of the tunnel was that all three of my numbers weren't too bad, considering. They were out of normal range but only slightly. 

Not only that, the 1-in-48 chance actually translated percentage-wise to only a two percent chance that the baby was DS; 98% that it was not. Because the 48 in the 1-in-48 represents women of my same race and age that are currently pregnant. So really, it was that out of all the pregnant 31-year-old German women in the world at that time, one in 48 of us was going to have a DS baby, not 1 in 48 of ALL pregnant women. So he told me to focus on that 98%. He also let me know that even though I would be almost 14 weeks along when we got the results, he could still perform a termination, if that's the route we wanted to take. I told him that it would be the route we would take.

The medical assistant was getting me scheduled for the CVS, which is done through Stanford a little over an hour away, but fortunately, Stanford has an annex office in my area and so we got to stay local. But they only did them one day a week, on Wednesdays, and this was already Tuesday. Thank God, they actually had a slot open for me the next day. Although, I would have driven out of state that day if need be to get the test done as soon as humanly possible.

After everything was set, I left and collected the boys. I had called Nate and broke the news, but told him to stay at work because there was nothing he could do. I went home and called my mom, sobbing, to give her the news. And then I did what probably 99.9% of people do in this instance: I devoured  the internet. I poured over article after article, link after link, message board after message board, searching for any ray of hope. Armed with the numbers from my test results, I plugged them in everywhere I could, trying to find any comfort I could. I poured over google images of nuchal sacs, and cried and cried and cried. I had printouts of the ultrasound images of my fetus, and I studied the nuchal sac, and its face, because I learned through my research that DS fetuses usually have other telling characteristics, like an extremely small or non-existant nasal bridge. I was pretty sure I could see one in the picture, but given that it was only 11 weeks gestation, it was hard to tell.

That afternoon, a genetic counselor from Stanford (the Lucille Packard Children's Hospital part of Stanford, actually) called and asked me several questions about health and family history, in preparation for the CVS. She also kept asking me about alcohol use during pregnancy, and I had to admit that I had gotten pretty much wasted over Christmas, before I knew I was pregnant. Even though I knew I had done nothing wrong, it didn't feel very good to admit it.

The next morning, we went for the test. First, we sat with a genetic counselor and she went over our test results, and a ton of other genetic stuff. In spite of the extreme stress I was under, it was actually really interesting. She talked all about genes and chromosomes and while that sounds really dry, it actually wasn't. I learned quite a bit. Like, did you know that some women have an extra sex chromosome, and this renders them infertile? Apparently, they actually have the male chromosome in addition to the two female ones and they would never know except via genetic testing, because besides infertility, it doesn't have any impact on them. Crazy. 

She also kept talking/asking about the damn alcohol use prior to knowing I was pregnant. It was getting stressful and alarming and even Nate started to feel weird about it because he finally asked her why she kept asking me about it. He asked if it could be the cause of the baby having DS, and she assured us that it wasn't because the chromosomes are present in the eggs and sperm prior to conception, so alcohol use during the early stages of pregnancy couldn't possibly have caused DS. Not to mention that blood supply to the fetus isn't shared with mom until a few weeks after conception. Then she finally quit hammering me about it. I gathered that they were collecting data for other uses/studies.

Anyway, then they did an ultrasound to determine where the placenta is located. If it's in the lower half of the uterus, then they stick the giant, 5-inch needle used to collect the piece of placenta through the vagina. If it's in the upper half, then they have to stick that needle through your abdomen and uterine wall to collect the sample. 

OF COURSE, my placenta was in the upper half. And of course, they can't do any numbing because how are they supposed to numb the uterine wall? But that wasn't the worst of it. The worst was watching the little fetus on the ultrasound, not knowing its fate. I watched it bucking and turning, stubby arms waving and legs kicking. My heart broke and tore and shattered, and I told myself to just look away, to not watch it, but I couldn't.

Then they were ready to do the procedure. Nate grasped my hand, and I closed my eyes. And to take my mind off of the fact that a giant needle was being plunged through my abdomen, into my uterus, I imagined standing in the kitchen of the dream house I have built in my mind only, and looked at my three children sitting at the counter. I saw Ethan's and Connor's faces, and saw a little baby about 9 months old sitting between them. I visualized the baby as a boy, since, shit, if I was wishing here, I may as well make the baby the gender I wanted, too. There was pain from the needle and pretty severe cramps, but when I felt it, in my mind I looked harder at the kids. I focused on the baby. 

Then it was done. They told me how well I did. I went to the bathroom and they gave me a pad because some bleeding is to be expected. Too much bleeding, and it means a miscarriage. But oddly, I wasn't too concerned about miscarriage; my instincts were telling me that wasn't going to be a problem. In the bathroom, there wasn't any blood, but we still had to get through the next day or so to be sure. 

We left. Now the two-week countdown had begun. Two fucking weeks of straight-up agony. What to do with oneself while waiting for test results that could alter lives? Pray. Hope. Grieve. Cry. Feel guilty, guilty, guilty. Think. Not think. Cry. Hope some more. Pray some more. Cry some more. Research more. Try not to be consumed by the utter hell I am living in.

And finally, I got mad. I got mad as hell. I was so emotionally and mentally exhausted that I couldn't research any more, hope any more, pray, nothing. All that was left was anger. And it was directed at God and it was fierce. He had promised me with that miraculous heartbeat on the first day of the 6th week that everything was going to be okay. He had promised me that I wouldn't have to worry any more. Yet here I was, absolutely terrified that I was going to have to make a decision that was going to break my heart and forever leave me devastated at what I had done. I raged against Him, I poured out my soul, I told Him to make it right.

And then, after raging, I suddenly felt really stupid. Here, I was angry and I wasn't even listening to myself. I was missing the point of the entire situation. God had promised me that everything was going to be fine. So what was I worried about?? Sure, I got some funky test results. But with that heartbeat, I was promised. So with that realization, I found myself in a different place. I found myself cautiously optimistic, just needing those test results to finalize what I knew deep down: the baby did not have Down's Syndrome. Or any other condition or problem, for that matter.

A few days later, I laid down for a nap. I took my phone to bed because when you're waiting on test results like this, your phone becomes part of your body. I got a call mid-nap from a woman who identified herself as being from Lucille Packard Children's Hospital. I'm pretty sure I stopped breathing, stopped moving, I think my heart even stopped beating. She said she had good news but first, I needed to verify my date of birth. Somehow, I strangled it out and she told me....

The baby did NOT have any extra or missing chromosomes. The baby was perfect, at least on the chromosomal level. Did I want to know the gender?


"It's a little boy."

Oh thank you, God. It was a good thing I was already laying down in bed because I think I would have crumpled from the relief. 

However, we were still not out of the woods. Can you believe this shit? Because we have those funky test results, the next thing they have to determine is if there is a major problem like a congenital heart defect. If it's not that, then they still have to perform an in-depth ultrasound to look for other defects, from major to minor. Clubfoot was mentioned. IF nothing shows up, then we just got unexplainable, funky test results, and the baby is fine. But now we have to have an echocardiogram done of the boy's heart. One at 16 weeks, and another at 20 weeks. I was almost 14 weeks.

So we had another two weeks of waiting to find out if our baby's life or health was hanging in the balance. 

The next installments can be viewed by clicking on the links:
Part 5
Part 6

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  1. I think you need to start a soap opera, "as the fetus turns". Tune in tomorrow for the next dramatic installment of As The Fetus Turns. Will the baby have a club foot? Will Nate finally lose his shit from all the stress? Will Julio finally reviel his love for his sister, Juliete?

    1. Oh my... thank you so much for making me laugh so hard! It totally felt like a never-ending soap opera. And, as a side note, I really do hope you get the Mirena... now you can see why!

    2. Let me tell you, I'm a visual person; and the things I just imagined about As The Fetus Turns are highly ridiculous & awesome.

  2. wow. what an amazing story, and truly heartwarming to read. i applaud your strength (even that strength you held onto in moments of seeming weakness). i can't imagine having to deal with those sorts of things!

    i can understand the difficult decision about having a third child. my husband and i have two girls and have gone back and forth about having a third. i have been really stressed with the two and don't know if it would be smart for me, or my marriage to go through adding another baby. but part of me wants one. i can't imagine being removed from that decision making process. but i suppose, we aren't ever REALLY in control of it, are we?

    thank you again for sharing such a personal story.

    1. Thank you, Patricia, for your kind words! I appreciate them very much.
      Well, we now have three kids and I have A LOT to say on the subject, which will be coming next week, in the wrap-up. There might be some food for thought for you in there. Three is really hard, and your concerns are valid. I wish you well with that decision!

  3. I was 34 when I got pregnant, and it wasn't until I turned 35 that all the nasty stuff started from the doctor (that I fired, and went to see a high-risk OB because of Uterine Didelphys).

    The Nuchal Translucency tests, the glucose test that I had to do early (1 hour), then a 3 hour one because the first one was "high" and then REPEAT later, all the stuff they do for "elderly" moms.

    It is all SO scary when they give you statistics, and screening results and other stuff I didn't understand and had to google.

    I think it's really brave of you to put it all out there!

    1. Kylee, I had to look up Uterine Didelphys. Holy shit. The doc you fired is the one who called you elderly, right?

      It IS scary, thanks for understanding! And for thinking I'm brave... you're too kind! YOU'RE brave for doing the 3 hour glucose test - I heard they aren't fun.

    2. Holy shit, is right!
      Yes, I fired the one for calling me elderly. And for having to explain UD, and the recommended appt schedule for my condition, and for fighting to get specifics on test results only to be told "it's high, and that's really all you need to know" (referring to glucose).

  4. Dear God,
    Thank you for gifting Elizabeth with the creative ability to write, and for designing her Brave.


    1. Samantha, thank you for that. Thank you very, very much.


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