Thursday, February 26, 2009

No Answers, and One Big Question

The post-op visit was so basic I could have done it myself. The ultrasound looked perfectly normal, no weird dark spots anywhere and my lining is fine. The premarin apparently did it's job, which was to kick-start the lining growth so no scar tissue could form, and I am officially "fine". Well, as far as my uterus goes.

I didn't get much in the way of answers. I understand completely that this doctor's main concern is that the procedure went well and there are no lingering complications, but a little more information would have been helpful. I can only imagine that it isn't pleasant to discuss too much of the procedure with the patient, and she had certainly perfected her evasive tactics. Basically, I got the "every situation is different" story, and other assorted non-committal answers.

I have to have another post-op visit with my regular OB on Monday, which means I have to sit in a waiting room full of pregnant people. I can't imagine she'll tell me anything new, either. And so much of what I have found by googling "second trimester IUFD" are professional practice guidelines to guard against lawsuits, so I can imagine that part of her concern isn't really about me. I know she wants me to see this as ultimately a good thing, that the baby would have had problems, blah blah blah. But I've done enough research to know that it is impossible to make the assumption that this was a genetic abnormality. The screening could just as easily show an abruption (increased AFP) and demise (increased hCG). I really just need a copy of the actual report and an appointment with a genetic counselor.

Of course, the reason I really want to know if there was something other than a terrible genetic abnormality is that everyone keeps asking me the same thing: are you going to try again? Don't people realize that there is probably a reason I have a ten-year old with no siblings? If it was that easy to just have another, then surely I would have a slew of kids by now, right? So, if some other issue contributed to this, I definitely want to suss it out before risking this again.

I did buy the three-for-two package at my IVF clinic. The contract is good for one year, so we may still have time for two more tries. Right now our inclination is to start right away. I am too old to wait six months, grieve and recuperate and get my groove back. It's not "now or never" so much as "maybe or never." I can't imagine having any kind of hope at all even if I do manage to get pregnant again, but maybe that makes it easier, somehow?

Wednesday, February 25, 2009


It's been two weeks since that impossible moment, that sudden silence when things went from breezy and chatty to some kind of weird library hush, just the clacking of keys and a few rustling noises as the u/s tech moved the probe against the paper drape. No staticky swish from the doppler. I could see the plain black nothingness where the heartbeat was supposed to be, but then the silence collapsed while nobody said anything. I think I was just desperate for some kind of explanation, some reason - I knew, I knew beyond any kind of doubt, but I couldn't say anything.

Tomorrow I have my post-op visit at the clinic. I suppose every city must have a place like this - hidden behind an ivy-covered wall, with buzz gates and security cameras. It had a zen-garden kind of feeling, very spa-like and calming. The doctor is committed to making sure that these services are available with the best possible quality of care, and I suppose I'm grateful that she left super-prestigious - S.i.nai (how's that for dots, Sky?) to run this place full-time. My own OB doesn't do second trimester d&e procedures because the hospital she is affiliated with just doesn't allow them. (Too closely related to second-trimester terminations.) They would have induced labor and had me deliver, which just sounds horrifying.

The people at the clinic couldn't have been nicer, although after a certain point I have no idea what really happened or how it all went. I was completely out for a long time, longer than I have ever been before. Hours. Although I don't know for sure. The anesthesia made everything so incomprehensible and meaningless that I have only the vaguest recollections of anything they said to me afterwards. I remember getting there at 11:00 and not leaving until after 5:00. At some point they hooked me up to the pulse-ox and the heart monitor, and then a valium IV, which didn't really seem to help, but possibly it might have been worse without it. Then the anesthesiologist introduced himself, and that's the last thing I remember.

So, I'll ask a lot of questions tomorrow, although I'm sure I won't get the sort of answers I'm hoping for. And I should stress that I'm not even looking for philosophical answers or anything profound. I just want the facts, but I suspect the facts are lost forever.

Saturday, February 14, 2009

My So-Called Luck

The thing is, I'm an idiot.

I mean, of course in retrospect, it's easy to see what happened. But how could I have become so willing to believe things were fine when all the evidence was right there? The thyroid specialist said my levels were consistent with post-partum thyroiditis. My iron levels dropped like crazy, really seriously in a short amount of time. And the quad-screen results were too wacky, showing too many different possibilities. Down syndrome shows up as low AFP and uE3 with high hCG. Trisomy 18 shows low levels of all markers. SLOS is indicated by extremely low uE3. Demise shows as high AFP and hCG and low uE3. See? It doesn't make any sense.

And yet my OB looked genuiniely shocked to hear that there was no heartbeat. As shocked as I was, really. I honestly don't think she would have proceeded as confidently as she did if she had thought there was even a chance of this. And, looking back, I guess I wouldn't have, either.

I never really got the hang of the doing my own doppler. I only got it after my last appointment with the OB, when we heard a great fetal heartbeat of 150. I never heard anything over 142, but that's within the normal range of 120 - 175, and actually 140 is dead-on average for a 17 week fetus. It's also pretty average for a nervous woman with no iron in her blood. It was my own heart-rate I was picking up. I had my last appointment with my OB at 14w5d, which is pretty much what the ultrasound measured. So I probably never even had the chance to find the real fetal heartbeat - a few days later it was most likely not even there, but my own blind confidence never ever let me consider that as an option.

I was so attached to the idea of staying calm and not freaking out over everything that I didn't even notice the obvious signs. Like my own post about how much my body didn't want to be pregnent. I just hung onto the fact that second trimester miscarriages are rare. I thought the NT scan results and the good heartbeat were enought to hang my hopes on. NT and first trimester screening tests are much more accurate than the second trimester tests for Down syndrome, and a strong hearbeat and appropriate growth are pretty good indicators of viability. I let myself stop being a nervous wreck. And although I KNOW that being more hypervigilant wouldn't have saved this baby, it might have helped me figure it out sooner, so that at least I might have had a chance to know what really happened.

I don't know much about the d&e. The doctor came to talk to me afterwards and said it would be almost impossible to do genetic testing on the tissues because of the length of time since the demise. They will analyze the placenta, but it had detiorated significantly. I never knew what really made this pregnancy happen in the first place, so I had to accept "luck" as the reason. And now I'll probably never know what happened to end it, so "luck" will have to take the blame, too.

Wednesday, February 11, 2009

No Possible Title

It turns out that positive quad screen results can also be indicative of fetal demise. The fact that the test screened positive for three different anomalies means that probably none of them were the actual problem.

At 17w3d the u/s only measured 14w5d, just after my last appointment. So, D&E tomorrow and then my husband is taking me to Hawaii next week for some kind of tropical recuperation.

I will probably write about this more later, just to process everything for myself, but right at this moment I can barely manage to type. I am just going to go out for a real espresso now and get a fabulous bottle of wine for later, and try to figure out how to tell my daughter about this.

Monday, February 9, 2009

It Was Only A Matter of Time

It's probably never a good thing when your OB calls at 7:00 at night to talk to you about your test results. Good results are calls from a nurse and can even be left as a message. The doctor only calls when something is obviously going to involve lots of questions and medical decisions and unfortunate consequences.

My screening test results came back positive for Down's, Trisomy 18 and Smith-Lemli-Opitz Syndrome. While I'm sure most people have heard that the testing for Down's carries a high false positive rate, the SLOS has an almost non-existent false positive history. SLOS is a combination of severe mental retardation and congenital malformations. Basically, it sucks. So does Trisomy 18, with less than 10% of babies who manage to be born surviving to their first birthdays.

The fact is, I'm old. My eggs are old. My husband is old. This baby was old even before conception. And the thing is, old is not good in the world of reproduction. I thought I just had to actually get pregnant, that if I could just manage to have an ultrasound with a normal heartbeat everything would be fine. But at forty years old it's just a fact that things are likely to go awry. I thought I was lucky to get one embryo that made it, but the odds are the others tanked because of chromosomal issues, and this one just happened to have the kind of anomalies that don't cause immediate demise.

We'll do the amnio Wednesday. I don't even know how long it takes to get results after that, but I suspect it will be longer than I would like. Meanwhile, constipation seems like the least of my problems.

ETA - Thank goodness for bloggers like Amber, who has been through this and tried to sort out all of the info about these various results for those of us who are desperately googling "SLOS screen positive" and reading nothing but dire pub med articles. Basically, she had almost the same kind of quad screen results I have, and her amnio was normal. I may not end up with the good news she got, but at least I have a little bit of hope now!

Sunday, February 8, 2009

Movement? Or Bowel Movement?

I can definitely feel some kind of flickery something going on, especially when I lie down. It's usually a little bit to one side or the other, a skittery fluttery something that almost tickles. I've tried to coordinate the feeling with the doppler, but it's not as easy as it seems - it takes me too long to get the doppler going and the little scrambly feeling doesn't last very long.

I have to admit that it's more likely to be related to the odd digestive side effects of Repliva, the iron supplement. I have had either diarrhea or constipation every day since starting these. The crampiness just pisses me off now because I still run for the doppler just to reassure myself even though I know it's bad digestion. Plus, I hate to have digestive problems at work. I know it's some kind of uptight prissy thing that I should try to overcome so I can Be Comfortable With The Human Body or whatever, but I think solid waste is really a home-based activity.

I know, I know - the body should be allowed to function freely as it needs, blah, blah, blah. But personally my own body is somehow adjusted to a daily rhythm that pretty much avoids ever crapping in a public toilet. For one thing, the bathroom at my office is just not the best place for anything discreet. The building is a 1929 art deco tower, and the bathrooms are wedged into little spaces between stairways. The walls are thin, there is no ventilation and some guy's office is right across the hall. There is a window, but it opens onto the fire escape, and usually the across-the-hall guy is out there smoking. Basically, it's fine if you have to pee. Kind of.

So, as much as I would love to think that little bubbling feeling is the tiny whoever* in there, I also kind of dread a day at the office with too much abdominal activity. Luckily I'll be out at some new sites tomorrow, so I may be able to pop home if need be and at least avoid smoker-guy.

* Ultrasound Friday - and we are definitely finder-outers. I can't decide if I even wish for one or the other - I so desperately wanted a girl the first time I was pregnant. I thought that this time I would either really want another since my daughter and I have such a close relationship, or that I would really want to have a boy so I could experience that instead. But I can honestly say I will be thrilled with either and it's all about seeing a healthy little somebody in there. It's just another difference between a naive easy pregnancy and one that was such a long time coming.

Saturday, February 7, 2009


It's just a hunch, but something does not ring true with this octuplet story. Until someone can explain how an unemployed woman on disability can afford to do IVF six times (at least) I am not buying it.

I haven't seen the interviews (and won't) but the LA Times seems to be covering the whole thing to death. All I can say is that even if six embryos were transferred and two split to become two sets of identical twins, I am still skeptical. I mean, really?

Wednesday, February 4, 2009

Bad Blood

It's always something in this fight my body and I have about pregnancy. I can imagine my body in a one-woman (what else?) show, played by an unknown red-head with her best "My Cousin Vinny" accent, chewing gum and wearing too much mascara.

"Look, it's not like a big surprise or anything. I toldja all along that this pregnancy thing just itn't for me, right? Didn't I? Didn't I tell ya like a hundred different freakin' times? So don't go cryin' now that it itn't a bed a roses or somethin'.

"Oh, ya think so? Ya think it's easy to keep this rickety skeleton togetha, to make sure all those organs are workin' in a basically kinda normal way? To get that hair to keep growing? It's a full time job already and now ya I gotta buildja a whole otha human bein' ? Are you kiddin' me?"

I'm pretty sure my body's persona is basically a pain in the ass. No matter how much blackstrap molasses and spinach I eat, plus whatever is in the prenatals, I am severely anemic. I do tend to be mildly anemic sometimes anyway, but this time it's a dramatic drop. So, onto the giant iron supplements.

I keep reminding myself that I am perfectly happy to deal with a jillion little problems along the way as long as I can avoid any major ones in the long run. I just hope my body can stop complaining so much - it's not like I don't try to be good to this rickety skeleton and all of it's various bits.

Tomorrow, a massage - just to show that I do still care.