The two-week wait after the two-week wait

I’ve gotten pretty good at the two-week wait over the years.  I am a model of patience and restraint: I never test before a missed period anymore (why would I?  It’s just a waste of a pregnancy test that I most likely wouldn’t need if I just waited for my period to come in its own time).  I’ve been pregnant five times, which means a heck of a lot of two-week waits, so I guess I’ve finally worn down my anticipation.

But the two-week wait after the two-week wait?  That’s a whole different story.

In my four previous pregnancies, I’ve always had an ultrasound at 6 weeks.  In our first pregnancy it was because we’d had some difficulty conceiving and were being followed by the RE, and after that it was because I was supposed to start Lovenox at the first sign of viability.

That first six-week ultrasound was magical.  We saw a heartbeat right away.  There was a living creature.  Inside of me!  It was amazing!  I was elated!  I cried!  I fell in love at first sight.  It was just incredible.  Later we found out it was a daughter, and that was a magical moment as well.  There was so much anticipation in that pregnancy.  Which probably made it all that much harder when it ended at 18 weeks.

Since then, the six-week ultrasound has been a different story.  I am more wary, guarded, less attached to that little bean, less surprised whether I see a heartbeat or not, more clinical as I interrogate the ultrasound tech.  In my fourth pregnancy, I warned the ultrasound tech before she started that pregnancy didn’t tend to go well for me, so I wasn’t expecting good news.  Why did I feel like I needed to warn her?  Indeed, when she had nothing but bad news to give me after that ultrasound, she was fine.  I was the one who held it together until my doctor asked how I wanted to end the pregnancy, and then I lost it.  The six-week ultrasound has gone well for me twice, and poorly for me twice, and even in the cases where it has gone well, only half of the outcomes (i.e., one) were positive.

Same with betas.  I’ve had betas drawn in three pregnancies: my first, second, and fourth.  They’ve always been great — I’ve never had a bad hCG draw.  (I say, knocking on wood, waiting anxiously for the second round of betas for my current pregnancy.)  Yet 2/3 of the pregnancies with good betas have ended poorly.  So you’d think I’d be over them by now.  But here I sit, the night after my 2nd hCG draw in my 5th pregnancy, unable to concentrate on putting together my lecture for tomorrow because I’m wondering what’s going on with my betas.

After everything that’s happened, I don’t trust betas, and I don’t trust the six-week ultrasound.  But… I still get so obsessed with waiting for the results!  I’ve been thinking and worrying about them all day.  The two weeks after the two-week wait, while I wait for blood test results and ultrasound results, feel like the longest weeks of the whole pregnancy.  (Except for the days after my due date in my pregnancy with my son — those were truly the longest days of the entire pregnancy.  Each one felt like a week!)  I torture myself: have they not called yet because the news is bad, and they want to wait to deliver bad news tomorrow?  Even if everything’s fine with the betas, it’ll be two weeks before I can have the ultrasound, due to some poorly-timed travel… how will I make it that long???

At least if the news is bad, I won’t have to wait long to find out what’s going to happen in this pregnancy.  The only way I was able to make it through my pregnancy with my son was through continuous distraction.  So I’m just going to try to distract myself like crazy for the next two weeks.  Traveling to the conference next week will help.  Afternoons with a toddler who demands all of my attention will help.  What else will help?  How do you survive the two-week wait after the two-week wait?

Pregnancy #5

It’s been quite a week at our house.

Sunday and Monday we started to notice a weird rash on S’s face.  I put Aquaphor on it and forgot about it until I picked S up from daycare on Tuesday, and his daycare teacher told me he’d been scratching himself all day and seemed really uncomfortable.  “I think he has allergies,” she told me.  Then it clicked.  I’d been on amoxicillin for a week, courtesy of a nasty bout of bronchitis / sinus infection, and we’re still breastfeeding twice a day.  S had a reaction to amoxicillin when he was four months old, but his pediatrician had downplayed it and told us it was probably just a viral rash and not a true allergy.  Well, apparently it was a true allergy.

I frantically called the pediatrician’s office and my doctor’s office and after a couple of hours.  From the pediatrician: give him Benadryl for a couple of days, no breastfeeding for 48 hours after my last dose of amoxicillin, and bring him to the ER if he gets worse.  From my doctor: don’t stop the amoxicillin since your bronchitis was so bad (although the next day they called back to say that I could stop it after all, ugh).  By this point, we were already looking at a minimum of three days without breastfeeding, only a week and a half before I was to leave for a five-day trip.  It was unfortunately abrupt and not at all the way I’d wanted to do it, but it seemed like weaning was in order.  It’s after his second birthday, and I didn’t want to confuse him or stress him out with an off-again, on-again breastfeeding relationship.  After one evening of extreme weepiness and irrational irritability towards my husband on my part, I’ve been OK.  S has taken it well.  Surprisingly, he is more insistent about asking in the morning than at night, but there has been no crying or tantrums.  He accepts it when I say, “Mama has a boo-boo and can’t nurse.”  The first time I told him that, he looked really sad, but then I said, “big boys who don’t nurse get an extra story at bedtime,” and he brightened considerably.  So, I guess we’re doing this.

OK, OK, clearly I’m dragging out the punch line of the post.  I’m really glad I decided not to risk the MRI contrast this week after all.  My period was due on Wednesday, which came and went with no signs of a period at all.  I know my cycles inside and out at this point, so I was pretty sure yesterday, but I waited to make sure it wouldn’t start today, and then stopped by the drugstore to buy a test on my way home.  Lo and behold, two strong lines, right away.  Here we go with pregnancy #5.

After I told my husband, I called my mom.  I told her I was pregnant, and her immediate response was, “You didn’t tell me!”  Oy. 🙂 (I went on to point out that I was in fact telling her at that very moment, and I had only found out myself about five minutes before, so I’m not sure when exactly she would have liked me to tell her!)

At the moment I’m just sort of going with the flow (though not literally, thankfully!).  I’m not really excited yet, I’m not really scared yet… it’s just another positive pregnancy test.  My fifth.  I’ll feel a little sheepish when I call my RE’s office tomorrow, because she had told me to hold off on TTC until the hysteroscopy was completed, but she told me the day after the OPK turned positive, so it was just a bit too late.  Hopefully I haven’t doomed myself to another preventable miscarriage and the delay of the surgery that would have fixed the problem.

With every positive pregnancy test comes a little bump of hope. Smaller each time, I think, but still there.  Wish me luck.

Delayed gratification

I used to think I was pretty good at delayed gratification.  I mean, I have a PhD, which means that after college I basically said, “You know what, 17 years of school isn’t enough.  Let’s sign up for more school, which gets harder and offers less and less specific feedback as you go, with no promise of success or a lucrative job in the field that you love at the end.”  I took that leap of faith, and there were times that were hard, but ultimately it has worked out pretty well.

I think the difference between doing a PhD and being in the long haul for fertility tests and treatments is that I really loved what I was doing when I was doing my PhD.  So, sure, there were setbacks and difficult times, but in the end, I knew that I was doing something that I found challenging, awe-inspiring, and worthwhile with my time.  The journey was worth it, even if I didn’t reach the destination I wanted to reach.  Having pregnancy-related issues is a horse of a very different color.

Or is it?  I mean, yes, it’s a slog.  Much more of a slog than grad school ever was.  I go from panicking about my ticking biological clock to the physical discomfort of tests and treatment to disappointment after disappointment as my period arrives or the next miscarriage starts.  Every positive pregnancy test brings a cocktail of elated hope and terror and resignation.  Every two week wait is an exercise in patience and acceptance.

But, would I choose anything different?  My options are either this, or giving up on adding another much-wanted member to our family, or pursuing a totally different mix of hope, terror, elation, stress, and cost to add another family member a different way.  And while this happens, I’m going on and living my life.  I’m working hard at a job I love.  I’m being the best wife and mother I know how to be.  I’m raising my one living child with all the joy and commitment and love that I’ve been saving up and bubbling over with.  It’s hard.  But it’s the path that feels authentic to me given the choices I have.

Cultivating acceptance, cultivating patience, cultivating cautious hope in the face of setback after setback.  This is the work of the current phase of my life.

What’s motivating these reflections this week, you might ask?  I was supposed to have my MRI tonight, which was supposed to let me move on to the next thing, the hysteroscopic surgery to remove the adhesions and possibly fibroids that my RE thinks might be contributing to my recurrent miscarriages.  But my RE neglected to mention that she was ordering contrast for the MRI, which you can’t have if there’s a possibility that you might be pregnant.  And since I last saw her the day after a positive OPK result, there’s a possibility (a remote one, to be sure) that I might be pregnant, but of course it’s too early to tell for sure (my period is due on Wednesday).  So I called her office today, trying to find out whether the MRI might still be worthwhile without the contrast.  But she was on an international flight, and the nurse wasn’t helpful, and ultimately I just wound up having to reschedule the MRI for next week.  Then I called to reschedule the follow-up appointment with the RE, which I need to do before we can move forward with the hysteroscopy, and she doesn’t have an opening for another three weeks!  So there goes another wasted month.

I felt so frustrated today.  I wanted to complain to someone, but there’s nobody I see on a daily basis other than my husband who knows what I’m going through, and I try not to complain too much to my husband because I hate to stress him out on my behalf.  So instead I’m trying to put my frustration into context.  It’s not really frustration with this one test being rescheduled.  It’s frustration with the entire process of five years of four pregnancies and three miscarriages.  It’s frustration with watching other women get pregnant around me with their second or third living child.  It’s frustration with a medical system that feels so impersonal, with the uncertainty of never being sure that what I’m doing is a necessary or sufficient approach to adding another living child to our family.  It’s frustration with my life not going the way I want it to despite my very best sustained efforts over a long period of time.  And today it just bubbled over during the string of multiple phone calls with my doctor’s office and the radiology line.

I may be good at delayed gratification, but this is straining my abilities.  I just hope that there is, ultimately, gratification to be had, and that this journey is worth it in the end.

More procedures

I met with the RE again today to go over the month of testing that turned into three months of testing, and it did not go quite as I’d expected.

From what the nurse practitioner told me after my SHG, I thought there were a few irregularities with lining thickness that showed up, and that was all.  From what the radiologist told me at my HSG last week, I thought there were some hints of synechiae, but that it didn’t look like a big deal.  Apparently, taken together, my RE thinks that these results are a big enough deal that now I need an MRI and a hysteroscopy, and that my husband and I should hold off on trying again until both of those procedures have been completed.

The MRI is to determine whether or not I have fibroids.  Apparently the shape of my uterus on the SHG was irregular enough that she thinks there’s a possibility of fibroids — but she also said that the irregular shape could be caused only by adhesions, which it’s pretty clear that I do have at some level.  I don’t need to do the MRI, strictly speaking, since they could probably figure everything out during the hysteroscopy — but it will determine whether or not the irregularities are due to fibroids before I have the hysteroscopy, which is important mostly so that I know what to expect going into the procedure (since fibroid removal is a bigger deal that adhesion removal).  Then, the hysteroscopy is supposed to go in and fix whatever adhesions are kicking around in there, plus the fibroids if they exist.  Since I have a history of adhesions, and since adhesions can cause RPL, and since I now have two tests results pointing to adhesions in my uterine cavity, she says she thinks we should definitely do the hysteroscopy to remove them before trying again.

In theory, this course of action makes practical sense.  In practice, I am bummed that this testing/treatment process is just dragging out indefinitely.  What I initially thought would be one month of testing (in December) will now be a minimum of four months of testing/treatment, and it sucks.  And I don’t even know when we’ll be able to start TTC after that — it depends on whether it’s fibroids or just adhesions.

One step forward, two steps back.

So, that’s where I am now.  I don’t know a whole lot about timing at this point — I have to call to find out about MRI scheduling tomorrow.  She said she could probably do the hysteroscopy on my next cycle, but only if they can do the MRI *and* schedule a pre-op appointment before then, which means during the next 2-3 weeks.  So, things are a little bit up in the air right now — I have a treatment plan, but I don’t know how long it’s going to take or what to expect in terms of recovery time afterwards.  Ugh.

Anyway, I’m mostly managing to be zen about it — I’m really just discouraged by the long, slow timeline, but it’s nothing I’m not used to at this point.  Mainly I’m sad that we aren’t supposed to TTC until this is over.  It just feels like so much wasted time that I don’t have. But, all of my other tests looked good, including ovarian reserve, so I’m trying to remind myself that a few months here or there are unlikely to make a difference in the long run and that this currently looks like the best route to a new healthy pregnancy.

I’ll keep y’all updated.

HSG #3

Well, folks, do I get a prize for surviving my third HSG today?  They are always super-fun, of course, but actually today’s was basically a non-event — catheter/balloon placement was not even a little bit painful.  Not sure whether the difference is due to having had a full-term delivery since my last one or whether I just had a magical doctor doing the placement, but hey, I’ll take it!

As for the results, they were very good — better than I thought I could expect, really.  Both sides spilled dye almost right away, and the radiologist told me there was really only a little bit of scarring noticeable and only slight dilation on the left.  I don’t know if it’s even possible, but this HSG seemed much better than the one three years ago, when the dye only partly spilled and they told me I had a partial hydrosalpinx on the left.  So, good news, I suppose!  Although also no magical interventions to help this process go faster, presumably.

There was one thing that came up on the HSG that I am interested in asking my doctor about when I see her next week to debrief about this 3-month testing ordeal.  The radiologist pointed out to me some synechiae on the fundus of my uterus.  They were pretty obvious — it looked like a little notch taken out of the top of my uterus with little fingers poking out on either side.  He said, “With a history like yours, I’d be surprised if there wasn’t a little scarring,” and seemed to mostly downplay it.  But scarring and uterine irregularities are some of the main known and treatable causes of RPL, so I’m wondering whether it’s significant enough that the RE might want to do something about it.  I’m also wondering why it didn’t show up on the SHG I had in December.  So, that’s something to bring up at my appointment on Tuesday.

And with that, I’m done with testing.  Hooray!  No obvious major problems, which is good in a way, but which also means no obvious solutions.  I’m sure I’ll update more after my follow-up appointment with the RE this coming Tuesday.  I’m expecting she’ll just tell me to go away and try on our own for six months or something, but who knows?  I am turning 35 this weekend, so maybe she’ll be more likely to want to intervene to step up the pace?

In other news, the semester is in full swing, I’ve got two big gen-ed classes and a seminar this semester with >100 students altogether, we just got back from a lovely weekend visiting dear friends in Boston, and next weekend we’re off to Texas for a conference, with kiddo in tow as we visit friends.  S is experimenting with two-word phrases, continuing his “hide and seek” obsession phase, and just generally getting ready to turn two in a couple of weeks.  I’m finally feeling like I’ve come out of the funk of last fall, when the weight of my dad’s death on top of two miscarriages in a row just put me over the edge.

As I’ve gone through all the heartbreak and waiting of the past 9 months, I often just take a step back and reflect on how fortunate I am to have S with me this time around.  He is the light of my life and the apple of my eye and all the cliches in one tiny little toddler-shaped body.  Whenever I am with him, I soak up the snuggles, knowing he’ll be too big too soon. There is never a moment that I take his existence for granted.  I continuously marvel at what a miracle he is.  And he gives me hope that someday this process just might work again and we might add a whole new layer of love to our beautiful family.  I have a lot to be thankful for, and a lot to hope for.

One Month of Testing Becomes Three…

Well, so much for “One month of testing and you’ll be done!”  I haven’t yet seen the RE for a follow-up appointment, but apparently after reviewing my SHG and endometrial biopsy results, she wants to also do an HSG.  But since she didn’t realize it until a week into my current cycle, I have to wait another cycle to get it done.  I guess technically we can try to get pregnant this cycle, and if it works, great… but I’m not optimistic.  At least the HSG doesn’t prevent us from trying next month, so it’s not as though we really lose time, but I was just hoping to be done with testing and ready to move on to planning.

Here’s the recap on the testing results that are in so far: apparently everything is pretty much normal.  The endometrial biopsy was negative, all my blood tests were normal, the SHG showed nothing weird except for a slight thickening of the lining on the anterior wall, which I already wrote about — and if it were anything serious, the endometrial biopsy should have picked it up.  So no answers, but also no identified problems.

So then, what triggered the HSG, you might ask?  I’m not actually sure, since I didn’t get a chance to talk directly to my RE (I was supposed to have an appointment this coming Tuesday, which she suggested over electronic messaging that I cancel and reschedule for after my HSG).  But here’s the story as I see it:

Before the HSG, the APRN doing the test did a baseline ultrasound.  Everything looked just as expected, but she did point out an odd cyst-like thing near but not on my right ovary.  She said it might be a paratubal cyst, and that it looked like it was in the location of my right fallopian tube, but didn’t seem too concerned.  After the test, I mulled it over and remembered that during the 6w ultrasound where we found out I was miscarrying my last pregnancy, the ultrasound tech had seen the same thing, although she didn’t mention that it might be tubal — she just told me that it was a cyst-like thing that wasn’t on my ovary.  Just to back up a step, these two ultrasounds were actually pretty close together in time — we found out I was miscarrying the first week of November, and then the testing cycle and SHG took place right after I had my first post-miscarriage period in December.  So it’s clearly the same cyst-like thing, which was not there in June when I was going through my second miscarriage, but was there immediately after my third (most recent) miscarriage.

Now, combine this with the fact that I had high hCG levels in my most recent pregnancy — the last measurement at 5w was 2700 with a doubling time of less than two days.  At those levels, you’re supposed to be able to see a gestational sac on ultrasound.  But at my 6w ultrasound, there was no gestational sac… just two small irregular lumps in my uterus that the tech said might be bleeds.  And I know that the right side is the side I ovulated on for the pregnancy, and it’s also the side that this possible tubal cyst is on.  So, after remembering all of this, I wondered… is there any possibility that my most recent pregnancy could have been an undiagnosed ectopic, and the thing on my right tube is not a cyst but rather the missing gestational sac?  Obviously I wasn’t in any danger, since the RE did follow my hCG levels back down to zero, so if it was ectopic it resolved on its own (like 80% of ectopics, apparently).  But it seems like it would be an important thing to know to figure out how to proceed — and I already knew I had elevated risk for an ectopic since my second HSG showed scarring of both tubes.  Since I’d been seeing my local OB for the miscarriage, and then went back to the RE for RPL testing, nobody had all of the information, so it makes sense that the RE wouldn’t have considered it.

Anyway, I wrote a message to the RE’s office containing this question, and asking whether I should have the records from my most recent two pregnancies sent to the office.  The RE replied that an ectopic pregnancy was plausible, though difficult to know for sure, and that I should have the records sent over… and that’s when she suggested an HSG to assess tubal patency.  If you’ve been reading my blog for a while, you already know that my tubes were somewhat damaged during my first pregnancy, which we found out during my second HSG.  But since I then proceeded to get pregnant three times on the right side, it’s pretty clear that at least my right tube was still functional.  However, apparently now this cyst thing (or possible gestational sac?) is weird enough that she wants to make sure it’s not blocking my right-side tube.

I’m not actually sure what to hope for in this case.  Part of me is just sick of endless trying to get pregnant and miscarrying, and as I’m turning 35 I’m sort of thinking… I kind of hope it’s blocked, because then we can just do IVF already, and then they’ll do PGD and make sure they’re implanting chromosomally normal embryos and maybe it’ll finally work.  Of course, I’m not exactly excited about doing IVF, so in that sense I hope my right tube looks no worse than the last time they did and HSG and I can just get pregnant the old-fashioned way again.  I’m also just generally feeling grumpy about doing a THIRD freaking HSG, right after I’ve just done an SHG and an endometrial biopsy.  Enough messing around in my uterus, already!

Anyway, much as I’m not wild about the idea of another HSG, I am a sucker for information, and I do want to know whether my tubes have gotten worse or not.  So, I’ll go along with it, and wait for my next period, and do the HSG, and see what happens.  But that means I probably won’t have the results of the HSG and meet with my RE until, like, late February or even March.  UGH.  I hate the slowness with which this sort of testing and treatment moves.

And in other news, I’m currently away for three days at a conference (in Washington, DC), and I miss my little guy something fierce.  I felt so guilty leaving him, especially since he had a fever the day before I left and was super clingy and only wanted his mommy.  I hope he doesn’t think I abandoned him!  I cannot wait to snuggle that little munchkin tomorrow afternoon.

So, that’s where we are now.  I hope all y’all’s new years are off to a better start!

So Long, 2017!

I’ve rarely been happier to say goodbye to a year, but the flip side is that I’m looking forward to a fresh start in 2018.  Here’s the Cliff’s Notes version of 2017, and what I’m looking forward to in 2018:

The Good

• My son.  He continues to delight and amaze me every single day of his life.  This week at home with him has been truly lovely.  He’s starting to have the patience for longer books (Dr. Seuss’s ABC, Angus and the Ducks, and Do You Speak Fish? are three current favorites), and his sense of humor is just wicked (this week it’s all about the yes/no questions and giggles: Is this hairbrush your dada?  NO!!!!  Is this pillow your dada?  NO!!!!  Is that doggie your dada?  NO!!!!  Totally cracks him up every time).  We have a Solar System rug in his playroom, and he loves running from the Sun to Jupiter to Neptune upon request, and playing Solar System Twister by trying to stand on as many planets as possible at the same time.  He likes to play hide and seek, mostly by hiding in plain sight and dissolving into giggles as we pretend to search for him (Is S under the table?  Is he in the bathroom?)  I could go on and on, but I’ll stop. 🙂
• Work stuff.  My first postdoc got a job offer!  This was a huge deal, since I have been worried that he would not get an academic job and would be forced out of academia after which I would have been convinced that I ruined his career by bringing him to my rinkydink little college for a non-traditional postdoc opportunity.  Instead, he was offered a potentially permanent job that he would most certainly not have been qualified for before working in my group for four years.  I am so happy for him.  And I shouldn’t jinx it, but my year of supervising three thesis students isn’t going as badly as I feared, and I think they’ll all have high-quality theses come May.  There’s also a light at the end of the tunnel for a really big invited review paper that I’ve been working on for about a year now — it should be done by the end of next week.  It’s a ton of work, but will have high impact, and I’m pretty proud of it.  And as I wrote a few days ago, I totally rocked my 5th-year pre-tenure review and am optimistic about the tenure process that will start next fall.
• My support network.  Having difficult years really makes you notice all the wonderful people in your life who are around to help you through the crumminess.  First prize goes to my amazing husband, of course, but I’ve also got prizes to hand out to other relatives and friends as well — the list is long enough that it makes me feel good about where I am in life right now.  Having a kid hasn’t totally squelched my important relationships as I feared it might.  I’ve been leaning on them a little more than usual of late, though, so I’ll have to make sure I’m giving back in the new year.

The Bad

• Two miscarriages.  Recurrent Pregnancy Loss diagnosis.  Ongoing testing with no answers yet.  Coming up on a year of TTC living baby #2.  Oh, and the due date for my first post-S pregnancy is coming up this week.  Blargh.
• My father died.  I had a complicated relationship with him, which has made it tough to sort through my feelings about his death, but the short version is: it sucks.  I think my grieving process has been largely focused on morbid thoughts about the mortality of my son and husband (also myself), which is not fun.
• My mother had major surgery two weeks ago (a hip replacement).  Recall that I am ruminating on mortality, so it freaked me out emotionally right from the start.  My mom also lives a two-hour drive away, which is better than a plane flight away, but since she lives by herself she really needed help.  I made three round-trip drives in a week (one overnight stay the day she came back from the hospital, plus two day trips).  Thankfully, she’s on the mend now and I can relax a bit.  But I’ve really been feeling the whole “sandwich generation” thing this year.
• Work-wise, this fall was a survival semester, in the sense that I phoned it in on a lot of teaching stuff and was kind of a crappy collaborator on a couple of projects.  Mostly I managed not to be too crappy at any one thing, which I feel like I can be at least a little bit proud of when you consider how my semester went.  Another part of my grieving process seems to be occasional irritability, which is out of character for me, and there are a couple of emails I wish I hadn’t hit “send” on — although I have to say that the people on the receiving end did basically deserve them, even if I am usually more diplomatic.  Oh, well…. I don’t think I burned any bridges too badly.  And I did an OK job of circling my wagons and prioritizing critical stuff like my research group and paper drafts, so hopefully I managed to mostly insulate my professional list from my personal problems.

The New Year

• Getting back on the TTC wagon.  In a way, it feels good to have a fresh start after this most recent miscarriage, and to know that I’m back with the RE who will keep a really close eye on everything and do whatever she can to help us conceive the living child that we’re dreaming of.  I had visions of being a normal pregnant lady at my local OB’s office, but the silver lining of being abnormal is that I get more support and reassurance and can work on developing a plan.  I’m optimistic about our chances of success, since S is proof positive that my body is capable of carrying a baby to term.  I wish I could see the future and know how long it will take and what we’ll have to go through to get there, but I’ve been through enough at this point that I’m also feeling relatively calm and confident that I can just go with the flow for a while.  I am definitely in a much better place than I was three years ago after the loss of our daughter.  It seems like I shouldn’t be, since I’ve had three times as many losses by now, but for one thing I have S, and for another thing I’ve developed a certain amount of resilience.  I have hope for 2018.
• The push to tenure.  There’s a certain narrowing of focus that happens when you’re less than a year from putting in your tenure packet. I’m in a good place right now: I already have a really solid portfolio of work, and I have a bunch of things in the pipeline, and I know what I need to do before next fall.  I’ve already done most of what I need to do, and the rest is in process.  Some of it is dependent on other people (like my students), but not too much.  I’ll be working hard this year, and I’ll have to prioritize like crazy, but the tenure process is another thing that I’m optimistic about for 2018.  I am so looking forward to submitting my tenure packet next fall and knowing there’s nothing more that I can do.  I think I’ll feel good about the body of work that I’ve accomplished on the tenure track.
• The adventure of parenting.  I know people say the twos are terrible, and plenty of people will tell you that threenagers are worse, but you know what?  I’ve loved every age and stage of S’s life so far, and while there are certainly challenging moments/days, the thrill of seeing this little person growing up into himself more than outweighs the difficulties.  I am more crazy in love with this kid than I ever knew I could be, and I am looking forward to seeing what new skills and interests and ideas he develops in the new year.  I’m looking forward to getting more insight into his odd little mind as his communication skills improve.  And I’m looking forward to more snuggles and giggles as the toddler years wear on — I know that all too soon he’ll be too grown up for mama snuggles, so I’m soaking up every moment of it while it lasts.  I also love watching my husband surprise me with his parenting ninja skills, and I fall in love with him again every day as I see him growing into an amazing father.  He is so creative and funny with S that it just melts my heart.  Our family is so beautiful right now, and I hope that it will always stay that way — or perhaps even grow in love with a new member on the horizon.

And that’s the year!  Happy 2018 to everyone.  My hope for you all is for a brighter year full of love, laughter, new memories with your loved ones, and wishes coming true.

Update and testing cycle

Whew.  A couple of weeks and four doctors later and finally I have a plan that makes sense.

When I say four doctors, that’s not as nutty as it sounds — one doctor saw me right after the ultrasound that told me I was miscarrying, and she’s the one who prescribed medical management.  She’s also the one who told me it was probably just bad luck and I should try again.  Then I had a follow-up appointment with the totally socially inept but otherwise great senior OBGYN in the practice, who told me that it probably made sense to go back to reproductive endocrinology, but that they’d probably just tell me that at least I could get pregnant.  Then, just by chance, I had my annual visit with my primary care doctor the following week.  She asked me how things were going, and when I told her that in the last six months I’d had two miscarriages and my father died, her response was essentially “Wow, that’s awful… have you tried yoga?”   I’m obviously condensing that conversation a bit, but it was just such an inadequate response that it was both bizarre and painful.  Plus, she gave me a mini-lecture about the benefits of yoga last year, so I don’t even think the yoga talk was specifically related to everything I’ve been going through.  I think she just didn’t know what to say and didn’t really want to go there.

After all of that, I was feeling pretty down in the dumps about the medical establishment.  I mean, the best thing my doctors have to offer me after all this crap is “bad luck” or “at least you can get pregnant” or “have you tried yoga”?!  It made me feel awfully alone, as though nobody was going to take me seriously or help or even have a real conversation with me about what was going on.  Even if they don’t have the expertise of an RE, they could at least be sensitive and/or check on my mental health — there’s actually some literature showing that feeling supported and getting mental health care during RPL can increase the chances of a live birth in the next pregnancy.  But “Have you tried yoga?” was as close as those first three doctors got to asking about mental health.

Yesterday was my appointment with the reproductive endocrinologist.  It did not start off auspiciously.  That morning, I got a phone call and an electronic message from the nurse working with my doctor asking me why I hadn’t done the testing the RE had ordered the last time I saw her and whether I wanted to postpone my appointment until I got it done.  It was the middle of a busy day while I was running around dealing with broken equipment and trying to get eight groups of freshmen through labs with TAs who are shaky on their own understanding of the material, so I just replied briefly that no, I didn’t want to cancel my appointment, and no, I hadn’t done the labs, but my local OB had done some of the bloodwork over the summer and here are the results.  A couple more messages back and forth and eventually I figured out that they didn’t know I’d had two miscarriages since the last time I saw the RE, despite the fact that I had a long conversation about it with the front desk when booking the appointment and left two phone messages with the nurses asking questions that my local OB had said I should ask the RE before I passed the pregnancy tissue (mostly asking about whether or not it was worth trying to save the tissue for testing at this point).  Since doctors’ offices are apparently universally horrible at communication, the message never got through, but I drove the half-hour to the appointment fighting off tears thinking that yet another doctor was going to dismiss what I’d been through, when really the doctor just didn’t know about my miscarriages.

The reality was much better than I’d expected.  The RE actually sat and talked to me about the causes of recurrent miscarriage, the testing they can do, the chance that each of the problems was consistent with my history, and what she recommended the next steps should be.  Then, she asked about my mental health, and gave me the card of their social worker / therapist, encouraging me to call and talk to her about options for emotional support.  Finally!  A reasonable response to everything I’ve been through.

The RE ordered a bunch of tests, including an endometrial biopsy that can’t be done during a conception cycle, and so this next cycle will be reserved for testing rather than trying to get pregnant again, but that’s OK with me.  It seems like she basically ordered a full RPL workup, minus the tests I already had after my 2nd trimester loss.  I was a little skeptical about the endometrial biopsy at first, since I’ve read that they can have a lot of false positives and are usually used to check for luteal phase defects, which are kind of controversial in their link to RPL, but she explained to me that there’s some promising research showing that chronic endometritis can play a role in RPL and that a course of treatment with antibiotics can improve the live birth rate in subsequent pregnancies.  I looked it up when I got home, and it seems that there are some legit-looking studies from the past 2-3 years on the role of chronic endometritis in RPL, so I’m going along with it.  Otherwise, there’s also a repeat sonohysterogram to check the uterine cavity for adhesions (since I’ve had those before) or polyps/fibroids, and then a bunch of bloodwork, including karyotypes of both me and my husband to make sure we don’t have any of the rare chromosomal weirdnesses that are associated with RPL (translocations and the like) — she emphasized that this is low probability, but would be important to know if we happen to be in that category.

At this point, I’m totally fine with spending one cycle on testing before moving forward.  I’m not wild about the idea of more painful and invasive testing (the SGH I had before was much worse than either the HSGs or the hysteroscopy, but it was also the only test that I had done at my local OB, and they seemed kind of inept at it, so maybe RE will be better?).   But it seems worth it just to make sure that there’s no treatable cause lurking undiagnosed before we move forward with pregnancy #5.

That’s where we are now.  The timing could be worse, since there’s only one week left in the semester, which means that all of this testing will take place between semesters — much easier to schedule inconvenient and inflexible medical procedures when I’m not teaching, thank goodness.  But after yesterday’s appointment I feel a little bit more hopeful and supported than I felt before, which is probably the best possible outcome.

Bad Luck Math

Because I’m me, I’ve been doing the math on my bad luck.  And because this is my blog, I figured I’d share it with you.  If you hate math, this might be one to skip, but I find it to be a helpful perspective.

My question: Among all women who have been pregnant four times before, what is a typical outcome, and how common is my type of outcome?

Assumptions: I’ll assume that first-trimester miscarriage has a ~20% probability, since that seems to be in the middle of the 15-25% estimates.  It depends a bit on week of gestation, but mine have been in the 6-8 week range, and I think 20% is probably about right for that gestational age; I also think first-trimester miscarriages at that gestational age are pretty typical. As for 2nd trimester losses, it depends a little bit.  The overall risk is something like 1%, but the risk of losing a chromosomally normal fetus like I did is about half that, or ~0.5%.  If I were being totally self-consistent, I’d make the probability of live birth ~79% and first-trimester loss ~19% to account for the ~2% of pregnancies that are lost in the 2nd and 3rd trimesters, but it won’t change my answer much so I’ll keep using round numbers for at least these initial back-of-the-envelope calculations.

What is a typical outcome for a woman with four pregnancies? 

The highest-probability event in any pregnancy (other than mine, that is) is a live birth, with a probability of ~80%.  The probability of having four live births in a row is (0.8)^4, or about 41%.  So, fewer than half of women with four pregnancies will have all live births.  That jives with my experience — most women I know with three kids had one miscarriage along the way.  So let’s explore the probability of three live births and one miscarriage.

There are four ways to have one miscarriage in four pregnancies: either your first pregnancy can result in a miscarriage, or your second, or your third, or your fourth.  So the overall probability of having one miscarriage among four live births is 4*(0.8)^3*0.2 = 41%.  That means that just according to the typical probabilities, 80% of women who have been pregnant four times will have either one or no miscarriages, and it’s more or less a coin toss between those groups.

What about the other 20%?

The other 20% are women who are less lucky.  They might have had two or three or even four miscarriages, typically in the first trimester.  But which fraction is which?  The easiest to calculate is having four miscarriages in a row: (0.2)^4 = 1.6%.  So, how unlucky do you have to be to have four miscarriages in a row, just by chance?  Unluckier than 98.4% of other women.  If you somehow manage to collect 100 women who have been pregnant four times in a room, you would expect about 2 of them to have had this outcome by chance.

But what about the other 18 women who had more than one miscarriage?  Most of them will have had two miscarriages.  There are six ways to do that (1st and 2nd pregnancy, or 1st and 3rd, or 1st and 4th, or 2nd and 3rd, or 2nd and 4th, or 3rd and 4th), so the probability is 6*(0.8)^2*(0.2)^2 = 15%  So a whopping 3/4 of the 20% of women who had more than one miscarriage had two miscarriages, and there are only 5 women in our hypothetical room of 100 G4 women who had three or four miscarriages out of four pregnancies, just by chance.

That’s actually more than I might have expected.  I mean, I don’t know very many women who have had four pregnancies, but of the ones I know, they mostly had one or two first trimester miscarriages along the way.  I think the largest total number of pregnancies I know of in my normal everyday life (not counting blogland, which is a very biased sample), is a grad school mentor of mine who once shared that it took her six pregnancies to have her three kids.  (I was appalled at the time, but now I’m 2/3 of the way to her total number of pregnancies and I only have one kid to show for it, so there’s that.)  But the point is that if you somehow collect 20 G4 women in a room — this is the size of a typical seminar course that I might teach at my college — you would expect only one of them to have had more than two miscarriages just by chance.

What about later losses?

So far I’ve ignored 2nd and 3rd trimester losses, because they are so improbable that they make up a pretty tiny fraction of all pregnancy outcomes.  For example, the chance of having one late loss out of four pregnancies is 4*(0.98)^3*0.02 = 7%.  That’s not nothing, unfortunately, but it’s also fairly small — it’s about the same as the chance of having 3 or 4 first trimester miscarriages out of four total pregnancies.  The more times you get pregnant, the more likely you are to have an improbable outcome like a late loss, alas.  The good news is that for a typical woman, even if she gets pregnant four times, she has a 93% chance of never experiencing a late loss — and probably it’s actually significantly better than that, since I’m assuming that all pregnancies are equal, whereas the research shows that women who have had one late loss are more likely to have another, so in reality it’s almost certainly skewed so that women with generally poor reproductive outcomes account for a larger-than-chance share of the late pregnancy losses, and a truly typical woman is less likely to ever have a late pregnancy loss.

So, how unlucky am I?

Let’s explore the probability of my particular reproductive outcome: four pregnancies, one late loss, two early losses.  We’ll assume that the order is random, although it might not be — for example, the adhesions from my first pregnancy could conceivably have contributed to my early losses in later pregnancies, or I could have some sort of weird immune-mediated thing that got worse after a live birth.  But those are fairly speculative possibilities, so I’ll just assume that the order is random.  In that case, the probability of having an outcome like mine (one late loss + two early losses, random order) is something like 12*0.02*(0.2)^2*0.8 = 0.8%.  So, if you got 100 G4 women in a room, maybe one of them would have a history like mine, but maybe not.  You’d need a thousand to get me some buddies for sure.

And I’ve also been generous in defining what “like mine” means.  If you narrow the definition to the loss of a chromosomally normal fetus in the 2nd trimester (plus two early losses), that brings the numbers down by a factor of 4 to 0.2%, which means that I’d need a room full of 1000 G4 women to maybe have one friend who’d been through something similar.  This thought experiment is also interesting because it brings the probability of having an outcome like mine below the threshold of 0.3%, which means that my outcome is 3-sigma bad, or that there’s a 3-sigma probability that my obstetrical history is not just due to bad luck, but rather to some other contributing factor that predisposes me to poor pregnancy outcomes.  That’s significant enough to get you publication in a journal in my field (though not in all fields).

Now, of course, when you get down into the weeds of these small-number probabilities, there are a lot of outcomes that look similar.  Another outcome that has a probability of 1-2 women in a group of 1000 G4 women is having two late losses and two full-term births, and you can add a bunch of different permutations that also give you similar answers.  But the point is, by the time we get into the land of both late losses and multiple losses, we’re down in the tenths digits of the percentages, which is a fairly lonely land to be in.  It’s also increasingly absurd to be told that your problems are due to “bad luck” and told that you should just try again — when you’re out in 3-sigma land, while it’s certainly true that your outcomes could be due to bad luck, the probability is low enough that it seems like any reasonable person with at least a slight grasp of statistics would want to do more investigation.  It’s easy to say that investigation is a waste of resources when you’re talking about two first-trimester losses out of four pregnancies (roughly a 1 in 5 chance), but not when you’re talking about an outcome that only a few in 1000 or even 10,000 women will experience (since most women don’t get pregnant four times and therefore aren’t even represented in the above numbers — you actually expect overrepresentation of poor pregnancy outcomes in G4 women for exactly this reason).

So there you have it.  I am so statistically significantly unlucky that it seems unlikely that my issues are due to random chance (i.e., they are probably more than just “bad luck”).  However, I’m not as dramatically unlucky as I guessed going into this exercise (I guessed that I’d be 4-sigma unlucky, but I’m not that unlucky).  So, that’s good news, I guess?  The other good news is that I live in a time when the internet exists to connect me to all the other women having a tough time out in 3-sigma land, so it doesn’t feel as lonely as if I’d been a prairie mama trying to deal with this all in isolation, never knowing another woman who had been through something similar (waving at you, blog friends!).  Though in that case I’d probably already be dead and/or completely infertile from the infection I contracted after my 2nd-trimester loss, or from hemorrhaging due to retained products of conception before the infection — huzzah for 21st century medicine!  It’s keeping me alive, even if it’s not telling me how to keep my babies alive.

Miscarrying and Hypothesizing

Well, I opted for medical management of this miscarriage, and it’s proceeding slowly.  I took the first round of medication Friday night, and not much happened, so I took another round Sunday morning, and finally things are moving.  I don’t think I’ve passed the main pregnancy tissue yet, but hopefully soon (I was so afraid it was going to happen in the middle of my lecture yesterday!).  I’ve got another week before they’ll start pushing a D&C on me, which I’d like to avoid if possible since I have adhesions from my first pregnancy.

In the meantime, I’ve started to do some research on causes of recurrent pregnancy loss.  I’ve already been tested for clotting factors and some of the immunological stuff, and other than being heterozygous for Factor V Leiden it all came back normal.  But it’s hard for me to believe that FVL is the only culprit, since it’s not associated with an increased risk of 1st trimester loss.  The main thing I haven’t really been evaluated for is heritable chromosomal issues, like a balanced translocation in my husband and me — but I find it hard to believe that that could be the source of our woes, since we know that two of our four pregnancies at least have been chromosomally normal, including the daughter we lost in the 2nd trimester.  It’s also not particularly associated with 2nd trimester loss.

There are actually very few issues that are associated with increased risk of both 1st and 2nd trimester loss.  But one thing that I read about immediately clicked for me, and now I am anxious to talk about it with my doctor on Tuesday.  You’d think that with everyone looking at my uterus in every which way over the past four years someone would have brought it up before now, but I’m about 95% certain that on one of my recent ultrasounds the tech noted a slight septum that she didn’t think was clinically relevant.  But anatomical abnormalities like a uterine septum are one of the most common — and most treatable — causes of recurrent pregnancy loss.  They are also one of the few etiologies that causes both 1st and 2nd trimester loss.  The ASRM guidelines on recurrent pregnancy loss note that the likely mediating factor causing 2nd trimester loss is abnormal placentation, which was the leading hypothesis for our daughter’s death.  It just all makes so much sense!  If I have a slight septum that isn’t bad enough to cause total infertility, but is enough to cause poor blood flow to the embryo/fetus, it would explain why I keep getting pregnant but keep losing the pregnancy, sometimes early and sometimes late, even in the absence of chromosomal issues.  It at least seems worth asking about, since the prognosis for treatment is really, really good — there are some studies where the live birth rate jumps up to like 85% (normal!!!) after surgery to correct a septum.  I would love to have an 85% chance of a live birth, instead of the 75% chance of miscarriage that I seem to have had in my pregnancies so far.  Maybe my doctor will tell me I’m nuts and that this slight septum can’t possibly be causing my problems… but I feel like I have to at least bring it up.  And if my regular OB doesn’t listen, I have an appointment with the RE on the 28th and will bring it up again then. And again and again until someone listens and has a real conversation with me about it.

I’m just ready for someone to take this problem seriously and stop telling me it’s just bad luck — it seems so clear that whatever is going on, it’s more than just bad luck.  One 2nd trimester loss… maybe?  But that’s already really bad luck, since it happens in only ~1% of pregnancies.  Two losses?  OK, fine, a single first-trimester loss out of three pregnancies does seem within the realm of normal.  But three losses out of four pregnancies, including a loss in the middle of the 2nd trimester?  How can people keep attributing this stuff to bad luck?  I mean, I know it’s not always possible to find a cause, but it would be so much more helpful if someone would say, “Look, your history is crappy and indicates a problem.  We don’t always know what the problem is or how to solve it, but here are the things we can check for and here’s why I do or don’t think that each of them might be a problem for you specifically.”  That’s what I want.  Why is it so hard for doctors to talk to patients that way?

Anyway, that’s where I am now.  Waiting to finish miscarrying this pregnancy, walking around, acting like everything’s normal in the meantime, diving back into the literature on pregnancy loss to try to find some answers about what’s happening to me.  This semester has just been so hard, with my dad dying the first week of the semester and my third miscarriage happening in the middle of the semester.  I’m kind of amazed that I’m still functioning, but at the same time I really don’t think I can take any more, and I’m having to bite back yelling at people or bursting into tears all the time.  I have very little patience for anything even a little bit trivial right now, which is really not the frame of mind I should be in during advising week for our freshmen, who are freaking out about their schedules for next semester.  I also can’t handle any kid-related stress, and when my toddler was clinging to me at daycare dropoff yesterday I actually started crying right in the middle of the toddler room.  I don’t think the teachers noticed, and I got myself out and to the car before I really let loose, but I wanted to cling to my son as much as he wanted to cling to me!  You’d think I’d be used to pregnancy loss by now, but I don’t think you really ever get used to it.  Having a living child makes it easier, for sure, but it’s still awfully hard.