Saturday, September 30, 2006

A long, long day

Sorry for this hiatus ... but I have still been gathering myself together the last couple of days, even after being off bed rest. (And bed rest SUCKS. I hope to goodness I am not stuck on serious bed rest in the End Times of this pregnancy. [Although I would of course prefer that to an unhappy ending for this pregnancy.] But in addition to being mind-numbingly dull, bed rest makes me exhausted for days and days afterward. I did bed rest after my myomectomy, and again while we were trying to conceive, and each time, the aftermath was as annoying as the rest itself. The tiny bit of muscle tone I lay claim to just leaves town altogether during bed rest, and it takes me forever to coax it back again.)

Monday seemed to me like the longest day ever. It reminded me of some endless trips I've taken overseas, where you get up at zero-dark-thirty to take the shuttle to the airport, then sit twiddling your pinkies at the airport for an hour or two, then finally board and do a short hop to some jumping-off point, then unboard and reboard, and finally have an excruciatingly long flight to wherever you're going, and then even afer you get there, there's some 2 hour bus trip to get to your final destination. And then a taxi. And then you get to your hotel bed and figure, finally, I can rest, but then you can't sleep because you're just so enervated by that time. And it's just the day from hell, not because of anything particularly going wrong, but just because it's so damned long.

Monday felt like that. I felt so sad, and yet knew that I had to be determined. It had to be done and that was all there was to it. But first, I got up early because I had to feed the cats and try and arrange some final things around the house, and then there was the hour drive to the city, and the search for parking. And then when we got to CPMC and went up to the proper floor, we thought for a moment we'd wandered into a war zone. It turned out they are in the midst of serious renovations on that floor (think: jackhammers and dentist-like drills) and it was damned loud. Of course, my first thought was that the doc was going to be startled by some bazooka going off in his ear under these MASH-like conditions, and screw something up at some vital point. Therefore, in addition to being sad I also became crazed. Not a good combo.

D and I also managed to work in a short but vicious spat, and got bonus points for doing it in front of an audience. (Though I must say that during all the rest of the day, he was a complete angel and did all he could to make things easier for me.) When we checked in at the reception desk, they told us to come back after the nuchal fold ultrasound and pay for everything at that point. I wanted to clarify, so I asked if they really meant after the ultrasound, or after the procedure. Of course, said the receptionist, she meant after the procedure. I sat down with D in the waiting room, and a couple of minutes later they wanted us back again at the desk to sign something. I sent D, who came back with the news that they wanted us to come back after the ultrasound to pay for everything. No, said I, they want us after the procedure. "But she said--" "I already asked her!" "But she said--" "I know! I know! I clarified it already!" "But--" "If you'd let me finish, dammit--"

All with an interested audience in the waiting room, and a background of jackhammers. Fun was had by all.

We met with a genetics counselor first, who took us to a blessedly quiet meeting room down on the first floor, and proceeded to worry and depress us. She was very nice, and took a fairly in-depth genetics history from both of us. It turns out that neither of us have much worth worrying about in our family tree, but none of that matters because I am of "advanced maternal age" (i.e., older than dirt, and so are my ovaries) and therefore our children, if any, will be born with two heads. Or something like that. The figure that got to both of us was the 1 in 14 chance that each fetus would be afflicted with some chromosomal abnormality, whether a serious one or less so. That's a damned big number. Had I known that before we got started, I'm not sure I would have had the courage (or, possibly, foolhardiness) to proceed with my own eggs, despite my desperate desire to do so.

After the genetics session, we went back up to the war zone, and were conducted down a very long hall which gradually got quieter. By the time they ushered us into the procedure room, it was actually normally quiet. I changed into a gown, and we started off with a very long and involved ultrasound of my tummy, done by a technician. I had no idea there were so many angles that my interior could be viewed from. In addition to finding and labeling the four fetuses (A through D), she also located 3 (or 4 -- I lost count) new fibroids of about 1 to 1.5 inches each. This sent me into a new tizzy, but the tech said that most fibroids stop growing at about the end of the first trimester (where we are now) so with any luck, that might be as big as they'd get. I could tell when she was pressing on a fibroid with her wand because it would suddenly hurt.

When she was done at last, she printed out a long string of u/s pictures and went off to consult with the doctor. Then Dr. Tex came in and introduced himself, and we got going. He took over the ultrasounding and went back over things, sometimes pointing out various findings on the screen to a young female med student he had in tow. He told us what he was finding: two fetuses with normal growth, that had nuchal folds below 2mm, and two that had nuchal folds over 3mm. All four had visible nasal bones. He also pointed out to the med student what he believed to be a cystic hygroma, and also an exhibition of flexion in the hand of one of the fetuses (a soft marker for Down syndrome). Cystic hygroma can also be a marker for a number of different chromosomal defects, such as Down syndrome, Turner's, etc. It occasionally will resolve before birth, but usually cystic hygroma is a very bad thing.

It was difficult for us to watch the images on the screen, knowing that two of them would soon be no more. D finally gave up and sat beside me with his head lowered, but still holding my hand. I had initially not thought I wanted to see the images at all, but I found that it helped me to see the difference (visible even to these untutored eyes) between the necks of the okay fetuses and the suspect fetuses. The possible cystic hygroma looked immense, compared to the necks of the >2mm fetuses.

I had prayed to The Big Guy that the selection would be cut and dried. I don't know if He answers prayers along those lines, but the selection of which fetuses to reduce was indeed obvious. Dr. Tex didn't waste any time, but as soon as we were agreed, set right to work. First he numbed the skin with an injection (which hurt in itself, but not for long) and then, using the ultrasound as a guide, guided the needle in. The procedure was that the fetus's heart would be stopped with an injection of some chemical (I've forgotten what exactly) and then some of the amniotic fluid would be removed. (He explained the reason for that but I've forgotten. Maybe just to make more room.) I had my eyes squeezed tightly shut, so I avoided seeing the needle (which was quite large) but I couldn't avoid feeling it. It was more a feeling of intense soreness than sharp pain, but I could definitely tell that things were being messed with. A nurse stood at my feet and rubbed them a bit, to distract me, which did help some, but on the other hand I did not want to ignore what was going on. D and I made the best decisions we could all along the way, but it was due to our decisions that this was having to happen, and I did not want to ignore or ever forget that it had happened.

Each one took 3 or 4 minutes to complete. The first one was definitely more painful than the second (I think the xylocaine had kicked in by then), but during the second one I began to cry, and then had to suppress it since I could feel the sobs building up, and I didn't want my belly moving and causing problems. But I felt so wretched. It was actually my praying that set me off. I am a Buddhist and believe in reincarnation. But I am also a Deist, which is why I'm always having these interesting one-way conversations with The Big Guy, and I was asking Him to let the little ones reincarnate in a good place where they would have healthy bodies, and be loved and wanted by their new families.* And that really set me off -- but I didn't have the luxury of letting myself indulge in tears at that moment.

This is all making me sound crazed, I know, but I was a little crazed at that point in time. In any case, Dr. Tex was soon done, and checked by ultrasound to make sure that the two remaining were doing okay -- which they were. He talked with us about our doing amnios on the two remaining fetuses (he was strongly in favor of it, given the odds we had received from the genetics counselor) and gave us some advice on how to pick a good operator to do the amnios. (Someone with LOTS of experience. He told us that his own statistics on miscarriage following an amnio are about 1 in 400, which is significantly below the national average of 1 in 200.)

Afterward, I got dressed while D went down the hall and wrote CPMC a nice big check (though with the 35 percent discount). I was exhausted, and then we had to walk down that long, long hallway just to get to the elevator. Given that the nurse had just given me quite a strict lecture on how important it was for me to do strict bed rest for three days (she even advocated eating in bed, lying on my side, which made me think she actually had some beef against me and wanted me to choke on my food), I thought it was insane that they made me walk so far to leave their facility. What, don't they have any wheelchairs there? But I was too tired and upset to worry too much about that so I just shuffled down the long hall, clutching D's hand and letting him tow me along.

That was pretty much the day. I sat in the waiting area downstairs until D brought the car around, and then we drove home (with mercifully little traffic). At home I crawled into bed and read for hours instead of going to sleep -- because I was afraid, as Shakespeare said, of "what dreams may come." But apparently my unhappiness has been near enough the surface that my subconscious has not felt the need to take up the issue. No dreams about this, so far.

But I do have a new worry. I have found myself worrying more or less constantly the last couple of days about the state of the little ones that are left. Today I was in tears over it. I am not exactly terrified, but certainly very concerned that the two left may have chromosomal issues as well. And if they do, what then? Shall we just terminate our way down to no pregnancy at all? This has been such a long road ... starting in June 2005 with an abdominal myomectomy (that took me months to recover from) and then our efforts all this last year to conceive, first naturally and then with IUI's and finally with two IVF's ... and it just feels like we've been slogging up this mountain forever. And the mountain isn't getting any smaller, as far as I can see.

# # #

*This may be neither the time nor place, but just a note on the coexistence of Buddhism and Deism in one brain: People often have the notion that Buddhists are not allowed to believe in any deity. This is not correct. Gautama Buddha himself, when asked about the existence of deities, refused to make answer, saying that neither the existence or non-existence of any deity had any bearing on what he was trying to teach. There are actually a number of people who are simultaneously Jewish and Buddhist (so much so that they are sometimes jokingly labeled Jew-Boos in the Western Buddhist community), and indeed, there is even a Buddhist-Christian Journal that is put out by a university in Hawaii.


Blogger Suz said...

I don't quite know what to say, so I'll just say this. I don't think I've ever come face to face with so much courage. Courage to recognize and do the right thing. I'll be thinking of and praying for your little ones.

7:50 AM  
Blogger chris said...

I'm terrible at math, but a 1 in 14 chance is still less than 10 percent. And you're way out of the woods for a lot of the scary trisomies that usually miscarry at 8 weeks, so your percentage is even lower at this point. Hang in there. I know it's scary.

3:27 PM  
Blogger casey said...

I'm actually glad to read what Chris wrote...puts me at ease about your odds as well.

Thanks for such an illuminating post. It couldn't have been easy, but all along you've shown a lot of strength.

Looking forward to some happy posts in the future!!!

1:51 PM  
Anonymous Anonymous said...

you've been in my thoughts all week. you are indeed very courageous and strong.

many many hugs,

2:17 PM  
Anonymous Anonymous said...

You are amazing, courageous and inspirational. I think of you daily and wish you all that is good.

Love Trish

11:59 PM  

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