And Then the Wheels Came Off. *Updated*

by Alexa on June 3, 2012

Update:
Just back from appointment. Amnio a week from tomorrow at 37 weeks, and (pending results) delivery the next day! I will post the details later this afternoon, after a celebratory bagel and maybe some dancing, but needless to say I can’t possibly thank you all enough for your support. It made all the difference.
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(First, a warning: This post is heavy on medical detail but light on explanation of medical terms. There is no reason you need to read it at all, obviously, but if you do, I apologize for any wear on your Googling muscle.)

My pregnancy history is not pretty. First multiple miscarriages, then a twin pregnancy complicated by stillbirth and preterm delivery. My perinatologists believe that Ames’ death was caused by clotting issues–he was small for gestational age and had a thin, weird umbilical cord with a placenta full of fibrin, and even Simone’s placenta was abnormally wee, about the size of your average 17-weeker’s. I also tested positive for beta2glycoprotein1 antibodies, which can make a girl abnormally clotty.

So, THIS pregnancy the plan was daily Lovenox injections and baby aspirin to help insure a well-behaved vascular system. In addition, said plan included a repeat c-section at 37 weeks.
Why, you ask?

—Previous stillbirth increases the risk of stillbirth 2 to 10 fold, depending upon various factors.
—My clotting disorder (Antiphospholipid syndrome) ALSO increases the risk of stillbirth (I am being treated with blood thinners, however my understanding is that the risk is still elevated).
—Stillbirth risks go up at the end of pregnancy.
—I have a well-documented anxiety disorder that was sure to find pregnancy-post-stillbirth more than usually trying.

I suspected (correctly), that having a more-than-viable baby inside me, ripe for the picking, would be nerve-wracking. 37 weeks–term–seemed a sensible compromise between my need to GETTHEBABYOUTALIVEASAP and my more rational desire to let the baby grow fat and healthy and fully to term. My doctors agreed that this was reasonable. I see a different doctor nearly every appointment, but I discussed it with several of them, and Lo, it was Good. I was informed that because of a hospital policy on scheduled deliveries before 39 weeks, I would have to have an amnio the day before to confirm lung maturity—despite the fact that amnios after 36 weeks for the purposes of assessing lung maturity have been shown by peer-reviewed sources to be pretty dumb—but fine. Whatever. We also had contingency plans in place: I would have weekly NSTs and BPPs starting at 30 weeks, and if the baby looked to be doing badly, I would be delivered. To address the risk of preterm labor, I would be on progesterone shots until 36 weeks to soothe the contractions that began plaguing me at about 15 weeks. However, my perinatologists do not stop labor after 34 weeks, so should those contractions begin to produce an actual cervix-letting-the-baby-out situation after that time, I would be whisked back for a c-section without fanfare.
I would have been absurdly grateful, obviously, for a baby born at 34 weeks, but was shooting for 36, at which point there is no mandatory NICU admission. Not that a week of NICU time would be so awful, but I wanted to see how the other half lived. I wanted to hold my baby right away and have it in the room with me in one of those lo-tech plastic tubs.

So that was the plan.

Sometime early in the third trimester, I began having odd visual auras—like a migraine aura, but without the headache. I hadn’t had any migraines during pregnancy, and maybe two in the six months preceding it, but these episodes (during which my vision was terrifyingly absent or obscured, leaving me largely helpless) were coming in clusters, several in a week, then maybe none in the next week, then several more. I was referred to a neurologist who was concerned based partly upon the fact that the episodes were lengthier than your average aura (not to mention my clotting disorder and family history of stroke). He wanted to order an MRI and some MRAs (what he actually said when discussing whether or not to do the MRI was “How would you feel if the MRI showed you’d had just a teeny, tiny stroke?” holding his fingers ever so slightly apart), but my pregnancy complicated this and anyway it was probably nothing, so he started by ordering a bunch of blood tests. My Sed Rate came back very high–but that can be normal in the pregnant. My ANA screen came back positive, though it had been negative when tested during my post-pregnancy work-up several years ago. This worried me, as a positive ANA can be associated with pregnancy loss, but at least the titer was low…until they repeated the test a week later, at which time the titer had risen precipitously. There started to be a lot of talk about autoimmune issues and postpartum blood thinners and seeing a rheumatologist after pregnancy. I started, as you can well imagine, to become just a little bit unhinged.

To give a summary: I had increased risks of stillbirth from both my previous stillbirth and my clotting disorder, and I’d been diagnosed with gestational diabetes (which also comes with a slightly increased risk of stillbirth), and then the autoimmune weirdness began, and eventually I went and developed borderline polyhydramnios–a small thing, but it seemed like small things kept accumulating, things that each increased my baby’s risk of mortality by a tiny increment.

The tipping point came last Wednesday, at my growth ultrasound. Twyla was measuring splendidly, and I chatted with the tech while she took measurements and checked the blood flow through the umbilical cord. Unfortunately, the umbilical dopplers showed reduced flow due to increased resistance—a level of 5, which is well above the 95th percentile and a significant risk factor for Bad Things, significant and Bad enough that they scared me, veteran Googler, right off the Internet in tears. My doctor had assured me that if the resistance increased more, to the point of absent flow, they would take the baby out immediately–you know, to prevent hypoxia or death–but I was terrified. How fast could it go from abnormal flow to absent flow? No one seemed to know, exactly. They switched me to twice weekly monitoring, but would twice-weekly be enough to catch it if something went wrong?

I made it 24 hours before I called and begged them to get me in for a recheck the next day. Luckily, the resistance had decreased—still much higher than normal, but better, and not in the greater-than-95% zone that gets mentioned most ominously in clinical studies. Alas my fluid, which had finally moved out of the polyhydramnios range as of Wednesday (down to 22), had increased in the intervening 48 hours to just over 29. (Among other things, polyhydramnios increases the risk of placental rupture or cord prolapse if one’s water breaks. Helpfully, it also increases the chances of your water breaking! Then there’s the fact that I’ve been contracting painfully and semi-regularly—as often as every 4 minutes for as long as 24 hours.) (Related: do you know how tired I am of contractions? SO TIRED.)

Wednesday’s appointment was also when I was supposed to schedule my c-section, but instead I was informed that they could not, in fact, schedule it for anytime before 39 weeks, amnio or no. Minnesota has a new state law regarding delivery before 39 weeks in the absence of medical necessity, and “necessity” is being rather narrowly interpreted. My doctor told me she had just called to schedule another patient for 37 weeks and been shot down, even after she took her case to the medical director, because OMG STATE LAW. She didn’t think there was any way I’d actually MAKE it to 39 weeks, so wasn’t scheduling me for then, either (though she recommended I forgo my final 36 week progesterone shot, just to help things along), but scheduling the procedure for anything earlier was now out of the question. Instead, I have to wait until I either go into labor, or something goes more, emergently wrong—i.e. one of my risk factors bears fruit. Never mind that the Minnesota statutory language doesn’t actually itself prohibit anything, instead directing hospitals to develop policies. Never mind that I’ve been contracting with no result for weeks, so I am not optimistic that I will go into progressively-cervix-changing labor any time soon, or that labor might not be such a swell idea for me anyway, given both the polyhydramnios and the blood thinners, which I have to be off for a certain amount of time before delivery (or else I’ll be put under general anesthetic, and I really, really want to be awake for the birth of my baby). Never mind that by the time routine testing turns dire, the baby may already be compromised, especially in cases of abnormal flow. Never mind that abnormal flow often indicates the same placental issues that beset my last pregnancy. Never mind that scheduled c-sections are safer than emergency c-sections, or that I actually have several of the conditions that appear on the Joint Commission’s list of medical indications for early delivery (PREVIOUS FETAL DEMISE! ANTIPHOSPHOLIPID SYNDROME!). Never mind my mental health, and the very real panic I am experiencing as I wait for this baby to be born, white knuckling it through one neverending day at a time. Never mind that the motivations for this policy are not exactly All About the Babies, but rather as much about reducing cost (morbidity is so much more expensive than mortality!), or that it is enormously insulting to women and doctors. Never mind that the group that first pushed for these “hard stop” policies regarding early term delivery has written a new paper that essentially says “Oops, it looks like people may be construing this a bit too strictly:”

Our concern is that a misinterpretation both of our policies and of the nature of our specialty’s opposition to purely elective early term deliveries may result in inappropriate reluctance to deliver women who are at risk for serious complications…How close must the blood pressure be to 160/110 mm Hg level to justify delivery at 37 weeks gestation or even before? How poorly controlled must the diabetes mellitus of a noncompliant patient be to justify delivery at 38 weeks’ gestation? In the absence of hard data to guide the clinician, physician judgment and informed consent will continue to play a major role in such cases.

No, never mind all that. The hospital administration is too spooked by the fact that this policy is now STATE LAW! to allow for scheduling me for delivery prior to 39 weeks.
And that was the occasion of my first full-on Ugly Cry in a doctor’s office.

I have a lot more to say about less-than-39-week hard stop policies in general and the legislating of them in particular, enough that I am writing a whole separate post on the subject. Please, if you want to debate the issue, or get stroppy about the plight of the poor 38-weeker, wait until that post to do so (and remember, too, that as the mother of a 25-weeker I am hardly insensible to the risks of prematurity). For now the issue is more immediate than philosophical. I am scared. I am angry too, but mostly I am scared in a very real way that my not-at-all-theoretical baby is going to die before she is delivered. It may not be logical, but it isn’t exactly ILLogical, under the circumstances, is it?

Tomorrow morning, Monday, I have another doppler check, BPP, NST, and my 36-week perinatologist appointment. I have no idea which doctor I’ll see–some I love dearly, some less so. Some enter not having read my chart, and a few I still haven’t met. I am going armed with every study and recommendation and so forth I can find, all printed and at the ready in my handbag. I fully intend to explain, calmly and pleasantly, my history and why I am so very concerned. I intend to advocate strongly for myself and my baby, and to ask for opinions and decisions in writing. I intend to pay visits to administrators if necessary. And if it IS necessary to visit these administrators who are so terrified of review committees and liabilities under EEK! STATE LAW, I fully intend to make it clear that the liability they should be worried about is that which will result if my baby dies in utero at say, 38 weeks, after I requested intervention that was deemed reasonable by my medical team and is indicated by published guidelines.

That is what I intend, but what I expect, alas, is different. I do not expect the appointment to go well. I expect to become flustered and lose every ounce of my reason and gumption and forget the measured arguments I intended to make. I expect to fold quickly, to shrink with embarrassment and pretend to be doing better than I am, so afraid am I of appearing crazy. I expect to leave feeling defeated and scared, and to cry on the way home. I expect this because that is what usually happens to me in these situations–I am reduced to a shred of myself, and I start to think about how neurotic I must seem, and maybe I am overreacting, and some part of me is determined to be liked and to seem cheerful and sane.
I’d like very much to exceed my own expectations.

It’s true–probably nothing will happen if I go all the way to 39 weeks. Probably everything will be fine. It’s just that right now, I don’t believe in probably, and it seems cruel to ask me to.

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