Today is my original due date. I don’t even know how to feel about that, and I don’t know that it makes much difference. I may or may not have had Lucy yet if everything went according to plan, but I’d already gotten used to the fact that she was born way too early. For the past couple of weeks, as I said before, I’ve just been thinking that we would have been able to take her home from the NICU by now, in all likelihood. Almost everything I do during the day makes me think of how it would all be different if Lucy were here. Changing diapers, crying, baths, feedings, spit-up, and baby cuddles. I wouldn’t have been swimming for hours, or keeping my house that tidy, or cooking very much probably, or sitting in her empty room crying. It would have been scary and overwhelming probably, but we would have been happy.
I forgot to tell the beginning of Lucy’s birth story in the last post. It started a long time before Lucy was born, actually. Many years ago I was diagnosed with PCOS – polycystic ovarian syndrome. PCOS is characterized by a whole host of problems: high cholesterol, fatty liver, high levels of testosterone (which can cause such things as acne and male pattern baldness), weight gain, and difficulty losing weight. I suffer from some of those things, but more relevant to our current situation are the reproductive issues. With PCOS, your ovaries prepare multiple follicles each month to release an egg. Maybe one of those will be released in ovulation (if you’re lucky – many women with PCOS do not ovulate), but the rest are not released and turn into cysts. The mechanics aren’t clear to me, but what it means is that it’s difficult to get pregnant. When David and I decided we were ready to have a baby, we knew it might be difficult, so after only a few months of trying we went to see a reproductive endocrinologist at UCLA. We saw him every month for about a year before I finally got pregnant. This was the regime: Clomid, twice a day, days 3-7 of my cycle. (Clomid stimulates follicles in the ovaries.) I was also on Metformin for hormone regulation and Mucinex to combat some of the side effects of Clomid. On day 10 I would see the doctor for an ultrasound, and he would tell me what day to do the next step, a “trigger shot” of HCG, human chorionic gonadotropin – a byproduct of pregnancy that can also trigger the release of an egg to cause ovulation. So on about day 14 I would mix up the HCG and shoot it into my belly. Then, about two days after that, I would start taking progesterone, since low progesterone levels can lead to a fertilized egg not implanting. It sounds like a lot, but it could have been a lot harder. As I said, many women with PCOS don’t ovulate, so at least I had that going for me. The next step is IUI (intra-uterine insemination), then IVF (in-vitro fertilization), both of which are expensive and not covered by insurance. So even though it took quite a while, we felt pretty lucky.
PCOS also puts you at higher risk of pregnancy complications, as if the difficulties getting pregnant weren’t bad enough. My risk for first-trimester miscarriage was higher than normal, so I was anxious about that. My first blood test showed that my beta HCG levels were a little low, but they increased as they were supposed to, so we weren’t too worried. We had an ultrasound at 5 weeks that showed a gestational sac, then another at 7 weeks where we saw Lucy’s heart beating for the first time. She was also already moving all around. We were excited until the doctor measured her at 3 days smaller than she should have been, and after that it all fell apart. He told us that it was a really bad sign, and that “more likely than not” we would lose her within the next two weeks. If not, we should do extensive genetic testing, because he was almost certain that something was wrong, and that the baby was not “genetically viable.” He told us to come back in two weeks “or when the bleeding starts.” This was two weeks before Christmas. You can probably understand why that was not a good holiday season for us. I was a complete zombie, and worried sick. It was the most terrible two weeks of my life until Lucy died, and it passed so slowly. We were driving to the coast to spend the holiday with family, and we stopped at UCLA for the 9 week ultrasound, not knowing at all what to expect. Our regular doctor wasn’t available, so we saw another and told him what the original doctor had told us last time, and why. He didn’t know why the other doctor told us that, but he looked and saw Lucy’s heart beating perfectly, and she was wiggling around more than ever. She looked like a little frog or something. He said everything looked perfect, despite her still measuring a little small, and told us not to worry. Merry Christmas after all! I will never forgive our original RE for saying those things to us, making us worry like that. He was so wrong – Lucy was perfect.
After that my pregnancy was pretty uneventful, until it ended abruptly. I never went back to UCLA, instead switching to my regular OB in Bakersfield. I was worried about other PCOS-related problems like pre-eclampsia and gestational diabetes, but those never became a problem. After Lucy was born, I did have the problems with milk production often associated with PCOS. I never thought that I was at higher risk for cervical insufficiency or second trimester premature delivery. And while there have not been any studies associating PCOS with incompetent cervix/cervical insufficiency, there seem to be far too many women with PCOS with second-trimester losses for it to be a coincidence. Clearly there is something else going on there – we just don’t know what yet. PCOS is not well understood, and neither is the function of the cervix, for that matter. I’m hoping this issue will become important enough that someone will find a correlation, or at least a way to screen for this potential problem. Because there are things you can do about it if you know, but women don’t usually find out until it happens to them, and that usually means losing a baby. Until recently, they wouldn’t even diagnose true cervical insufficiency without repetition – essentially meaning you had to lose two babies!
Just knowing there were things we could have tried that would probably have saved Lucy if we’d only known tears me to pieces. Maybe right now I’d be moaning about being pregnant and saying “when will this baby ever come?!” Or maybe I still would have delivered early, but late enough for Lucy to have had a better chance, and maybe she’d be home with us now. I’d give anything to have her back again. If we are able to have another baby, it will be bitter sweet, because it will be Lucy’s sacrificed life that brought attention to the problem, allowing us to take action for subsequent babies. Right now, with all the problems of PCOS, I just hope that we’re able to get to that point, that we’ll have to worry about other babies at some point. I’m not optimistic about anything having to do with my body, however. It has failed me too badly, too many times, for me to take anything for granted.