CVS day
This morning R. and I arrived at Columbia-Presbyterian for our CVS. Being a good patient, I arrived with a full bladder (as instructed). Unfortunately, we then had to wait an hour and a half. Advice to others — don’t start sucking down the water until you get there. But that’s the least of the day’s worries.
First, the technician performed a quick ultrasound. R. and I had been looking forward to it since he hadn’t seen one before, but the technician barely took notice of us and didn’t bother to point of the heartbeat, the size, or give us any “cute” views. While she was poking around, I caught sight of the heartbeat and was relieved.
After Dr. R. arrived, things happened fast. We told him we were concerned about my bleeding and wondered if the ultrasound showed anything. He said, yes, and pointed out a small subchorionic hematoma. A what? A small clot between the placenta and the uterus. Okay, so that caused the bleeding. He explained that any bleeding in the first trimester increased my risk of miscarriage. So that put me at an increased risk of miscarriage with the CVS. So what did I want to do? Could I handle waiting three more weeks for an amnio since I am at a “high risk” for Down Syndrome? What options! What a decision to make laying on your back with your skirt hiked up to your armpits. I didn’t like anything he was saying, but my gut said to wait. I’m more concerned about maintaining the pregnancy then any chromosomal defects. That choice wasn’t immediately clear, but it’s the one we ended up with. When the doctor presented our options, it almost felt like a game. He wasn’t giving anything away. He couldn’t tell us what to do, but he gave some aggressive hints. We got it. Slowly.
Dr. R. came to talk to us after I changed. He had texted my OB (they are in the same practice) as we had requested. The doctors had given us different opinions on whether or not to continue taking the baby aspirin I’d been taking for the past two months. When I started bleeding last week, we thought we should stop the aspirin. But she said the benefits outweighed the negatives. Dr. R. felt differently. In fact, he said he wouldn’t have performed the procedure anyway if he had known I was on aspirin. The fact that this information hadn’t been relayed to him by our doctor or the genetic counselor ticked us off. By the time we left, we had decided to change doctors and hospitals.
But we calmed down. At home, we both got on the phone with Dr. L. who talked us off the ledge. She assured us the small clot didn’t pose a big threat to the pregnancy. It should resolve itself and slowly absorb (into the bloodstream?). The risk is it could get larger and cause a separation of the placenta. I like this doctor because she knows how to talk to patients, and she is not an alarmist. Dr. R. wasn’t as reassuring, but he was also the one who was about to perform a risky procedure on me.
I was feeling okay about all of this until I started googling subchorionic hematoma and reading about the 50/50 chance of miscarriage. Three things can happen: 1) the clot will go away on its own, 2) the clot will get larger and the placenta will separate causing a miscarriage, or 3) we could have a very premature birth. I’ll write more about all this later but right now I need to chill out. All in all, this appears to be somewhat common occurrence and my clot isn’t large so things should resolve themselves. But it’s our new worry of the day.
Gene pool crap shoot
Last Friday, R. and I met with a genetic counselor at Columbia-Presbyterian. My doctor suggested the counselor could better explain the NT results and make us feel more comfortable about the CVS. She made us feel less hesitant about the CVS (a marginally higher risk of miscarriage than an amnio), but more nervous about the roulette we are playing with our gene pool. Down Syndrome is our big worry because of my age, but all other chromosomal abnormalities could happen anyway. I’m convinced if anyone spoke to a genetic counselor before trying to get pregnant, they wouldn’t even try.
She took a thorough family history of both R. and I, marking up a pre-made family tree with blank rectangles. With each potential genetic flaw, she’d scribble a different symbol then pull out her genetic counseling book and tell us the chance that the disease or condition was genetic, and our chance of being a carrier. After two hours, we left with a CVS appointment scheduled for the following Friday. Again, we walked most of the way home a bit dazed by the information and feeling very small and powerless to do anything about the inevitable. I guess you could say we had achieved an unsettling peace, a throw up your hands and sigh surrender.
We would have scheduled the CVS for Monday but because of the bleeding last week, we decided to allow for several more days of healing. The spotting had gone away by Monday and all was fine until last night when I started bleeding again at 11pm. Not heavy, but steady throughout the night, ending sometime in the early morning. When it started, both R. and I started pacing around the apartment. We’d been through it before and I knew what the doctor would say. I wasn’t cramping, so no need to panic. What does the book say? R. asked. Why don’t you read it? I responded. He picked up “What to Expect” and I found the more clinical “Your Pregnancy & Birth” given to me by Dr. L. on my first visit.
R. read things like, “It’s definitely scary to see blood down below when you’re pregnant. But what’s not definite is that bleeding is a sign that something’s wrong with your pregnancy. Many women - about 1 in 5, in fact - experience some bleeding during pregnancy, and a very large majority go on to have a perfectly healthy pregnancy and baby.” In my book I found “bleeding” under the “Complications During Pregnancy” chapter: “Miscarriage occurs in about 15-20% of al pregnancies, often during the first three months. Bleeding is the most common sign that a miscarriage might occur.” We decided we liked the more fluffy, illustrated “What to Expect” approach and I decided not to consult the other book anymore.
I just talked to my doctor and she said to go ahead with Friday’s procedure. The ultrasound will show any problems and if there are risks, they won’t do it. We are ready. We want it over with. We want to be able to exhale and poo-poo the numbers.
Prenatal screening
On Monday, I had my NT (nuchal translucency) scan. The test results will indicate the chances of Down Syndrome and a host of other chromosomal abnormalities. Last week my doctor was optimistic: I might have an excellent score and we could forgo further screening. Or it could be in the middle and we might opt to wait for the amnio. Or it could be not great and she’d recommend a CVS, the earlier, slightly riskier procedure.
The test itself is simple and non-invasive. In fact, it was kind of fun. The technician was a friendly, Eastern European woman who obviously enjoyed her job. She needed to get a clear shot of the neck away from the uterine wall (or whatever it was pressed against). The little guy was sleeping. She pointed out the encouraging, strong heartbeat. Good sign. The size of the fetus had doubled since the last screening less than two weeks ago. “I need him to wake up,” she said. “I need him to turn over.” She pressed her paddle into my abdomen and shook it around. I felt a little bad about waking him up from his nap, but we needed to get down to work. “There he goes,” she says, and points out the feet and arms (two of each!) kicking and punching back and forth. I wasn’t prepared for that. Legs? Kicking? In quick paddle like motions. Kick, kick, kick. Pause. Kick, kick, kick. And the little arms and fists scrambling in the air (or fluid). It was a Disney moment. Aw, isn’t that adorable! How wonderful. How amazing!
Then she switched views and showed me the 3D version. This I was not prepared for. This I had not seen in my “What to Expect” book, nor the books Dr. L gave me last week. “What’s that?” I asked, watching this tiny birdlike creature stretch and claw under a sheath of tightly pulled skin. “What the heck is that?” She explained it was a 3D view and more like what the fetus actually looked like. I felt a little sick. I wasn’t prepared to see the un-Disney version. It was real, it was fascinating, but it was a little too much for me. Later, I walked most of the way home, despite the 95-degree heat wave. I stumbled along Broadway in my flip-flops, soaking up the Dominican ambiance, watching all the people who started out as blobs of flesh and bone.
Later, R. said, what did you think? That they start out fully formed? No, of course not. I guess I hadn’t really thought of it. The technician presented me with a handful of snapshots from the session. Two of 3-D view and the rest from the regular ultrasound. One of the latter was particularly clear and showed a shapely little skull with rounded forehead and button nose. I placed that one on the top of the stack and posted it on the refrigerator.
For the next day or two I kept talking about how disturbed I was by the 3-D image. R. scolded me, telling me to stop obsessing about it. I told friends how detached I felt from the pregnancy, how seeing that image had made it more real but more unsettling. I’d lie in bed and think about the creature growing, quickly now, and that half formed face, that alien head without every feature in place. It will grow, R. assured me. And maybe that is what I found most disturbing about the image. That it wasn’t fully formed. That I’d seen it in a state of growth, unfinished, and I fear that that is how it will remain. But I was thrilled to see two arms, two legs. Even fingers and toes.
Yesterday a work, while interviewing a very nice programmer from India, my doctor called me on my cell phone. I knew if I didn’t answer it would be another day or so before we connected. I left the poor guy in the conference room for fifteen minutes while I roamed the halls trying to find a hot spot where my phone worked. Dr. L. assured me that the bleeding I’d experienced the night before was probably nothing to worry about since I’d had a good scan on Monday and she wanted to talk to me about my NT scan. At 3:30am, I’d woken up terrified to see what looked like a heavy menstrual flow. How could she be sure nothing was wrong.? She went on to tell me that my NT results were in line with my age. Basically, we didn’t get the reassurance we wanted. When she told me my range from the test and the range from my age, I quickly calculated that my test, in fact, scored lower. I looked back in the glass enclosed conference room and watched the interviewee click away on his PDA, glad that he had a distraction. Standing in a sea of empty cubicles, I remembered that someone was having a going away party in the larger conference room. I could talk about the risk of Down Syndrome openly, without walls or glass enclosures.
Dr. L. was recommending the CVS and for next week. Rattling off numbers and risks, she assured me the procedure was safe and that their facility was top-notch. I knew I would do it, but said, I have to discuss with my husband. Of course, she said, probably knowing that my decision had been made. I didn’t cry on the phone with her. How could I? I had to get back to my interview. She suggested R. and I meet with a genetic counselor the next day (today) that, she said, would make us feel better about the risks of the procedure. Sure, I said. Of course, more information.
When I went back to the interview, our time was up. I apologized profusely, and wondered if he could read the notes I had scribbled on his resume, the only piece of paper I took with me when I left: CVS, 1/38, 1/ 35, genetic counselor.
I told R. he had to come to the appointment with me on Friday, and that he had to come to the CVS. I’m through doing this alone, I said. I refuse to go to one more appointment by myself and swallow my heart as I watch the ultrasound monitor search for the heartbeat, and hold my breath until I see that fluttering heartbeat pulse on the screen. I realized the last time he’d come to appointment with me was the retrieval, and he had to be there for that. I was feeling very alone.
Talk it one day at a time, he reassures me. And I think, easy for you to say. You aren’t living, breathing, thinking this pregnancy every second of the day. You aren’t the one being prodded and poked, waking up in blood soaked underwear, reading books and searching online for risk factors and what every gurgle and strum of your body means.
Last night I went for a walk in Riverside Park. With the break in heat, the park was busy with dog walkers and joggers and kids coming home from softball games. My irritation with R. for not being there festered. But I realized as I walked along that I wasn’t alone. That I’d been feeling this way, accompanied?, for some weeks now. It’s a strange comfort to know that I’m not alone. And maybe I wouldn’t have felt this way if I hadn’t seen that disturbing image of protoplasm and bones. However unformed, it’s hear with me, every step of my day. Which makes the thought of something being wrong sadder than I can put into words.
First OB visit: a whole new world
Babies in the waiting room, women with bellies stretching against pleasantly pliant fabric, smiling nurses and aides in floral print scrubs. I felt like an intruder. Where is my solemn waiting room? Here, at the Columbia-Presbyterian Maternal Fetal Medicine group, pamphlets with cute baby faces prevail. At the fertility offices, intruders with babies were quietly whisked away to back rooms. But now I am pregnant. No need to be shy or protective. Here they act as if all will be well. The inverse of the thinking I’ve become accustomed to: all is treacherous; all is uncertain; all is risky.
I like my new doctor, but I’m suspicious of her lack of scrutiny. No ultrasound today? No, and I find out I might only have two or three during the entire pregnancy. But I’ve had three in 9 weeks! The fuzzy black and white images have reassured me, the fluttering heartbeat, so fragile and real.
Dr. L. asks me what I want to do about screening. No, she asks me if I want to screen. Of course, I say. What do you want to do, she asks? My god, I have to make a decision. Isn’t someone going to do this for me? She presents the options clearly, offering up an NT (nuchal translucency), a CVS and amnio. I’ll take all three, I think. She explains my options and only advises on the NT for now. It is the least invasive and the one we can perform next week.
I jump on a Monday appointment. The NT (or nuchal fold scan) can help assess the risk of Down syndrome, and hopefully some other chromosomal abnormalities. I think of that little neck in last weeks scan — amazed that it had even formed so early. It was more like a curve that connected the torso and head, that huge head.
Here’s a description of the test from www.babycenter.com:
“The NT test uses ultrasound to measure the clear (translucent) space in the tissue at the back of your developing baby’s neck. Babies with abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger than average.”
Okay, seems simple enough. Non-invasive. No risk. Dr. L. says if the results look good, I may decide not to do further screening. If it looks so-so, I can do the amnio. If it looks poor, we go for the CVS. The CVS presents a higher risk of miscarriage, but if we think there is a problem it is better to find out sooner rather than later. This all seems like a bit of a crap shoot. I know I will want the amnio no matter what, but she is right to point out the NT may ease my mind for a few more weeks.
I ask her if she ever advises against an amnio. She says never.
The Cost of IVF and potential funding
When I found out I was going to go the IVF route, a friend sent me a link to to Conceive Online. But I was too overwhelmed to look into it at the time. It was enough for me to focus on doctor appointments and the twice daily injections. When you are in the midst of IVF, it’s hard to raise your head up and look around you. Hey, being 10 weeks pregnant, it’s hard to raise your head up, etc.
I came across the site today and found some information I had been looking for about IVF funding. They state that the average cost per cycle runs about $12,500 and this was the case for us in New York City. But everything costs about 30% more than it should in Manhattan. It makes me wonder if other states might be less expensive. Somehow, I think not. The site also notes that 14 states require at least partial funding for IVF treatment (Arkansas, California, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, Texas and West Virginia). I found this information hopeful, but also disheartening. What about the other 36 states? Columbia-Presbyterian (where we went for cycles 1 and 2) participated in the statewide program and encouraged us to apply. We were lucky enough to have full coverage for that facility (they were in our insurance network). but ended up going out of network to the doctor who eventually created the cocktail that got us knocked up.
Here’s a link to Conceive’s article entitled “How Much Does It Cost.” There you will also find a link to the International Council on Infertility Information Dissemination where you can find out more information on funding by state.
