Empathy

My conference last week was really unusual.  It was a science conference, but it was about equity and inclusion in my field of science.  During one of the sessions, the presenter showed this video about empathy.  I thought it was brilliant, and I’m sure that if you watch you’ll be able to easily identify the moment that made me want to share it on this blog.  I wish I could have required everyone in my life to watch it before talking to me after our daughter died, and I’m trying to internalize the message so that I will continue to respond empathetically when other people in my life are going through difficult times.

Not ectopic!

Just a quick note to say that things were measuring right on track (in fact a day ahead) at our ultrasound this morning — and crucially, they were all in my uterus where they belonged. 🙂

We saw a gestational sac, yolk sac, and a fetal pole at 5w4d.  No heartbeat yet, but the doctor told us before she even started the ultrasound that we shouldn’t expect to see one this early.  We’re going back in a week and hoping to see one then.

So we’re breathing a big sigh of relief today — not ectopic!  Yay!

She also checked out the “partial hydrosalpinx” that had been seen on the HSG, and it was very clearly visible on the transvaginal ultrasound.  I asked her if it would raise our probability of miscarriage, and she said there are no data on the effect of hydrosalpinx in spontaneous pregnancy.  I wasn’t exactly reassured by that, as I know the data from IVF pregnancies show that ultrasound-visible hydrosalpinx reduces pregnancy rates by almost 50% and increases the miscarriage rate in that context, but I’m going to choose to be optimistic and keep sight of the fact that my betas were great and things look exactly as expected at this early stage.

I did also ask the doctor a question that’s been weighing on my mind during this whirlwind: whatever the outcome of this pregnancy, we will probably want to get pregnant again.  What should we do at that point?  She gave a fairly vague “it depends” answer — she said that if I wind up delivering by C-section, we’d want to plan ahead so that whoever does the C-section can visualize and possibly remove/seal my damaged left fallopian tube while they’ve got my abdomen sliced open anyway (fun!).  She also said that after this pregnancy contraception will be very important because any attempt at pregnancy should be carefully monitored because the risk of an ectopic pregnancy will still be quite high (which is actually not such a simple thing, since I’ve been banned from all hormonal contraception thanks to Factor V Leiden, but I didn’t want to go down that rabbit hole today).  She also said I might need a third HSG whenever we do decide to try to get pregnant again, because things might well change between now and then (for the worse, presumably).  But she also pointed out that this is good evidence that even with the scarring my right fallopian tube is still at least somewhat functional, so it wouldn’t be crazy to try without IVF for a while.  So that seems like good news!

I also want to give a shout-out to the flexibility of an academic schedule in all this.  I was able to skip several hours of my conference last week, another couple of hours of work today, and next week I’ll be at a conference in Western Massachusetts but can still take off an afternoon to drive the ~2 hours each way to this ultrasound appointment.  Then I’m in town for the next month, and able to schedule doctors appointments pretty much anytime — even if it happens to be during a weekly appointment with my students, I can easily shuffle things around.  Once the semester starts things get a little more constrained, but other than my actual lecture times, just about anything else is movable.  I realize this is a big privilege!  And I don’t even have to clear my time off with anyone else and make up awkward excuses for why I’m not in my office!  The main difficulty with an academic schedule is all the travel it requires — when we told my in-laws that I was pregnant this week, one of my mother-in-law’s first comments was “Well, I think you should not travel for the rest of the pregnancy.”  That’s a bit drastic, and I’m still planning to give my two invited talks at a conference in Hawaii in August, but travel is the one major tension that I’ve felt with the academic calendar throughout this entire process.  More on that later, I’m sure.

For now, we’re optimistic and happy about the firmly in-the-uterus pregnancy.  Now on to the next milestone: heartbeat next week, I hope I hope I hope!

5.5-week Update

Tomorrow is our first ultrasound to make sure that this is not an ectopic pregnancy (we are not expecting a heartbeat this early).  I thought I’d give a few updates as we hold our breath until tomorrow (not recommended, by the way!).

– My second beta at 20dpo was 2361.  For those keeping score at home, that’s a doubling time of about 35 hours (yippee!).  Everything’s on the high end, which is probably good news (unless it’s an ectopic pregnancy).  My mom, the women’s health nurse practitioner, says that the doctor in her practice mentioned that with betas as high as mine, she’d expect me to start having symptoms of an ectopic pregnancy around now — so far no spotting or pain, so I’m starting to get dangerously optimistic!

– Because of my history of placental abruption and second trimester loss, my RE put me on supplementary progesterone this week.  I’m on Crinone 8% gel twice a day — this is icky stuff, you guys!  But hey, I’m not complaining — whatever it takes to have a healthy pregnancy!

– Assuming we’re in luck tomorrow and it’s not ectopic, I can confirm (as a public service announcement because I tried to google this six ways from Sunday after our first loss): if you have implantation bleeding in a first pregnancy, you will not necessarily have implantation bleeding in your second pregnancy.  Just FYI.

– Symptom spotting: sore breasts (since, like, before the BFP), bloating, cramping/stretching, fatigue, and a bit of nausea.  Before we lost our daughter last fall I’d never in my life had trouble falling or staying asleep, but since then I’ve hardly been able to sleep through the night — lots of awakening at 4am, 5am, etc. with my mind buzzing.  Turns out that a side benefit of pregnancy is that it cures insomnia!  I don’t know if it’s purely psychological at this early stage (getting pregnant again has felt like it’s healed a deep wound in my soul), or physical (this is what I remember most from the first trimester of my first pregnancy — the deep and constant need to be unconscious), but whatever it is, it feels good!

– Social awkwardness: we had told a few close friends/family that we were starting IVF.  Since they’re awesome, they keep asking how things are going.  So far I’ve mostly deflected inquiries — I want to wait at least until we know that this thing is in my uterus and not my fallopian tubes.  Fortunately it’s not a lie to say “we have a doctor’s appointment on Tuesday and we’ll know more then.”

Thanks so much for all your good wishes as we deal with this nail-biter of a wait to make sure this pregnancy isn’t ectopic, and to find out if it’s viable.  I’m so very hopeful, and feeling so good about this pregnancy, that it scares me.  If it’s going to end, please let it end soon.  If it’s not… wow.  Wow, wow, wow.

The two-week nail biter

I swear I’m going to make this a quick thought collection (something I’m really bad at usually!), because I’m at a conference and it’s late.

First: I saw on another blog this week the idea that when you achieve pregnancy after infertility there’s another two-week wait after the two-week wait.  Since I assumed I wasn’t pregnant (since I’d been told it was highly unlikely and we’d need to do IVF), I had the easiest two-week wait ever.  But this week and next are the nail-biters.  I’m being monitored very closely for an ectopic pregnancy, and I’m also at a conference in Tennessee.  Two separate nurses had told me that it would be fine to get my betas checked on Tuesday before I left for the conference and then wait until Saturday after I got back.  But after they called me with the results Tuesday afternoon (while I was waiting for a flight in the Charlotte airport — chaos!), they called back 20 minutes later and told me that the doctor wanted to monitor me even more closely and that I was supposed to find a lab in Tennessee where I could do the second beta on Thursday.

Why?  Well, apparently my first beta was higher than expected (921 at 18 dpo, baby!).  This is normally a very good thing… but apparently in the context of a suspected ectopic it’s cause for alarm, because a bigger number means a fast-growing embryo, and things start to get dangerous at around 2000 (that’s also usually the level at which the embryo is visible on ultrasound, not coincidentally).  As I understand it, my high betas are a positive sign, since a majority of ectopic pregnancies top out below a level of 1000 (i.e., they stop growing before that point).  But for the minority of ectopic pregnancies that do keep growing, they’re the most dangerous kind, since they’re the kind that causes tubal rupture and internal bleeding, which is a leading cause of pregnancy-related death in women.  So, yay high betas!  But also, ack high betas!  Hopefully I’ll have a better idea tomorrow.  Apparently the order is in the Quest system (a national system of somewhat standardized laboratories) as a “STAT” order, and my instructions are to call my nurses and give them the phone number of the lab I go to so that they can track down my numbers as soon as they are available.  Yeah, this week is a nail-biter indeed.

I’m also adjusting to the concept of being pregnant again.  There are several weird things about this pregnancy:

1) We conceived almost exactly 1 year plus 1 week after our last conception.  That means that everything is happening at exactly the same time of year as it did last summer.  This is seriously messing with my head.

2) I’ve got imposter syndrome on top of imposter syndrome with this pregnancy.  In our first pregnancy, we conceived after the relatively benign infertility diagnosis of oligoovulation.  But any pregnancy after infertility messes with your head.  I remember turning down drinks and thinking “well, this is silly, since I’m not really pregnant anyway.”  This year, when a fellow conference organizer offered me a drink, I almost said yes.  I’m not sure I can explain my thought process, but it was something along the lines of “I can’t even pretend that I’m pretending to be pregnant right now.”  Yeah, I’m not going to be able to translate this feeling into words.  It’s just too surreal!

3) I realized yesterday that I’m thinking of this as “Pregnancy #2.”  It’s a number.  Now that I’ve stuck it on the number line, not even the first one, it seems more like part of a process than like an event that might lead to my first living child.  I’ve watched so many people in this space go through so many pregnancies that I think I’ve stopped truly believing that some pregnancies do end well — my “new normal” is believing that you’ve got to slog through an awful lot of misery before you get that shiny living baby.  Maybe I haven’t been through enough yet, and I’ll just have to move on to pregnancy #3. When I found out I was pregnant for the first time, I wrote on my chart in all caps “I AM PREGNANT!!!!”  This year I wrote “I am pregnant again.”  I think I’m going through a lot of the things that second-time moms go through — the first time around I was freaking out about every twinge and bit of gas.  This time through I realize just how very, very far I have to go, and how very, very uncertain this pregnancy is.  Even with the frenzy over the possible ectopic pregnancy, I feel like I’m just along for the ride at this point.  Ectopic?  Well, I’ll deal with that.  Miscarriage?  Well, as long as it happens early.  Needles?  Bring ’em on.  I am just not going through another 4.5-month loss if I can help it.

So much for those quick thoughts, eh? 🙂 Well, we’ve got a plan, we’ve coordinated a set of appointments over the next few weeks with the RE, the MFM specialist, and oh yeah, my local OB.  Thing is, I know there’s nothing that any of them can do to help keep my pregnancy healthy at this stage, but at least the constant information will be reassuring (in the best case scenario).

It’s a nail-biter, all right, but I’m happy about my high betas on Tuesday and nervous/excited to see if they’ve ~doubled tomorrow.  Wish me luck.

Plot Twist!

Warning: pregnancy discussed.

This morning I woke up early and took my temperature.  I double-checked the thermometer, then stumbled into the bathroom.  A few minutes later I came back out, stood by our bed, and said to my husband,

“Hey, [husband], want to hear something crazy?”

Him: “Sure”

Me: “I’m pregnant.”

Him: “Hunh.  Hope it’s OK.”

Me: “Me too.  I hope it’s not ectopic.”

Him: “Yeah.”

Then we went back to bed.  (I didn’t sleep, of course.)

There’s no doubt that I’m pregnant.  I had one old First Response test in the medicine cabinet, and after I dipped it, it only took a few seconds for both lines to appear.  The test line appeared immediately, at the same time as the control line, and wound up being about twice as dark.  No squinting or worries about evaporation lines for me today.  It’s as though the First Response test was saying, “Please, this is child’s play — give me a challenge next time!”

Immediately my mind was off and running in circles about the implications of this plot twist.

First: the danger of ectopic pregnancy.  After my recent abnormal HSG, we were gearing up to start IVF.  During the HSG, when I asked if I’d be able to get pregnant with scarred tubes, both the radiologist and the fellow told me that it was possible, but that I’d be at high risk of an ectopic pregnancy and that I should discuss it with my doctor.  Since I knew I’d ovulate before I saw her next, I sent her a message through the practice’s electronic messaging system, asking if we should hold off on trying because of the danger of ectopic pregnancy.  Here is her verbatim response:

I have reviewed your report as well as images of HSG- yes there is concern about the status of your tubes – while both tubes did spill the dye, there is concern about how freely open the tubes are. Your risk for an ectopic pregnancy Is higher based on this appearance but it is not 100% by any means!

You can try to attempt timed intercourse but recommend close monitoring with serial bloodwork in the event that your period gets delayed, as if it is an ectopic pregnancy, we want to diagnose it in its earliest stage. I believe you are scheduled for follow up with me next month – it is however OK to avoid pregnancy until the office visit, so we can discuss options/strategies.

That sounded pretty good, so we went for it.  When we saw her a couple weeks later, she told us that our chances of getting pregnant on our own were very low and presented our options, including surgery to try to repair the tubes or moving straight to IVF.  She recommended the latter.  We agreed, and have been going full steam ahead on starting IVF as soon as possible.  Then this happened.

I guess “not 100% by any means!” is encouraging.  I’ve looked up some information, and while of course there’s nothing out there about my specific case, it sounds like a ballpark probability for ectopic pregnancy in the case of known tubal disease (or previous ectopic pregnancy) is about 20%.

While walking the dog this morning, I did some math.  If we assume a normal first trimester miscarriage probability of about 20%, and a risk of ectopic pregnancy of about 20%, then this pregnancy has approximately a 64% chance of making it through the first trimester.  I’ll take it, I guess!

So, I suppose I’ll be getting a lot of bloodwork this week.  It’ll be a bit tricky since I’m scheduled to fly to Tennessee for a conference on Tuesday, but hopefully I can find a lab that can do the test there and fax the results back to my doctor?  Not sure exactly how that’s going to work.

I have other worries as well, but mostly they’re just the sort of worries that involve rearranging your conception of the future around new information.  Bizarrely, the part of me that believes there’s no way this pregnancy will survive is frustrated at the delay in starting IVF.  Assuming that this embryo dies, either through miscarriage or ectopic pregnancy, it means a whole ‘nother round of heartbreak and waiting to start the more safe and effective route of IVF.  I realize that I’m borrowing trouble here, but I’ve hit the crappy end of the probabilities in so many different ways now that I just assume that I’ll hit them again this time, and I certainly don’t relish the prospect of going through either an ectopic pregnancy or a first trimester miscarriage.  I was so optimistic about the probability of a healthy pregnancy with IVF, and the possibility of saving extra frozen 32-year-old embryos, which would be like gold if we ever got to the point of being able to think about a second baby.

Anyway, I can read this and logically know how absurd it all sounds.  I’m pregnant!  I’ve been working so hard towards this goal for so long, and I’m extremely fortunate that I don’t have to go through IVF after all!  (At least not yet.)  I should be over the moon!  I should be jumping up and down!  And my husband and I are all “meh” instead — what is wrong with us?!  I think it’s mostly that I can’t possibly believe at this stage that this pregnancy has any chance of working out, and I’m emotionally insulating myself against the (high, at this point) likelihood of another loss.  I’m also thinking about the long path in front of us if things go well: blood tests and ultrasounds for the next two weeks to make sure it’s not ectopic.  Starting Lovenox injections to mitigate the threat of clotting.  Repeat ultrasounds to make sure the pregnancy is viable and growing on schedule.  Getting through the screenings for chromosomal abnormalities and making it to the end of the first trimester.  A normal 18-week anatomy scan (this is huge for us since we found out that our first daughter had died at our 18-week prenatal visit).  Telling people we’re pregnant again.  And then the second half of pregnancy, which I’ve never experienced before, but which for me carries a 30% risk of placenta-related complications.  And then labor and delivery, which I’m completely freaked out about since my only experience with it is delivering a dead baby and I’m irrationally convinced that if we ever make it to full term something terrible is going to happen during delivery and the baby and/or I will die.

It’s a lot.  Even if we’re fortunate enough to have everything go textbook normally from here on out (which is unlikely), it’s not going to be easy.

But, one step at a time.  Today I am pregnant, and that is a very, very good thing.  I need to keep that in perspective.  Seeing those two pink lines this morning was very different than the first time we saw them, and this is going to be a very different pregnancy than the first no matter how it turns out.  But for now I have hope, and that’s a really good feeling.  I’d say at the moment I’m feeling anxious but cautiously optimistic.  There are much worse places to be (and I’ve been in a lot of them).  Wish us luck — we’ll need a lot of it.

An Illustrated Lesson on How to be an Ally

I wanted to post a brief vignette here today — it’s women-in-physics related, although not specifically pregnancy-in-physics related.  Today, one of my male colleagues illustrated beautifully how to be a great ally to women in the physical sciences.  Here’s the play-by-play:

• Male physics professor forwards an article about Tim Hunt’s boneheaded comments to me and a few other female science faculty.
• I write back saying, essentially, “It’s awesome that you’re aware of this and sending it around, and it would be even more awesome if you sent it to some men too.”
• He writes back and says “Good point! Women don’t need to hear this — they live it. I’ll forward it around more broadly!” Then he sends it out to a science faculty list.

And thus ends today’s lesson on how to be a great ally and not get freaked out and defensive. 🙂

The Inadequacy of the English Language

A word cloud created from this blog.  I guess I say “like” a lot?

I’ve been thinking a fair amount lately about the inadequacy of the English language.

I’ve had a lot of doctor appointments recently, and have had to talk about our experiences with various members of the medical staff.  There are still several apects of our experience that are hard for me to describe, and I find that my speech becomes halting whenever I have to talk about them.

The image that goes along with this post was created with Wordle, and shows a graphical representation of the frequency of the words I use on this blog.  It’s not a bad place to start.

Miscarriage – As I look back through my blog, I find that I used the word “miscarriage” more frequently in the beginning of the blog, and now I use the word “loss” more frequently (they’re almost equal sizes on the plot).  I find it more and more difficult to find the right words to describe what happened to us.  In a medical setting “fetal demise at 18 weeks” feels right, but with most people it’s too technical.  “Miscarriage” doesn’t feel right either.  When I think of a miscarriage, I think of a first-trimester event.  I know that first-trimester miscarriages can be just as emotionally traumatic as second-trimester losses, but the physical experience, etiology, and prognosis for future pregnancies are undeniably different.  I’m therefore uncomfortable with the word miscarriage, since I think a lot of people misunderstand my experience when I use it, but I don’t have another word to replace it.  Stillbirth is clearly inappropriate — I was about a week and a half shy of the miscarriage/stillbirth line in the US, so it’s medically inaccurate, in addition to which it feels presumptuous to use a word that is generally understood to describe the loss of a baby at full term.  “The loss of our daughter” or “after our daughter died” are phrases I’ve used a fair bit, but even though I certainly consider her our daughter, I know some people wouldn’t, and I worry that people who don’t know what happened might get the wrong idea — I don’t want to sound melodramatic.  “Pregnancy loss” isn’t a bad compromise, but it’s vague as well — a pregnancy loss could refer to any stage of pregnancy, so again it requires people to assume.  I’ve tried “pregnancy loss at 4.5 months,” but that’s clunky as well.  I tend to adapt my description based on the situation, but amazingly, even after talking about it for nine months, I still don’t feel like I have a good grasp of the language.  Every time, I hesitate before saying the words, because I have to carefully choose which words to say.

Infertility – This word is very, very small on the graph.  I had to check to make sure it even appears.  There is no doubt in my mind that we are experiencing infertility, i.e., the inability to conceive or carry a pregnancy to term after a year of trying (in fact, we’re going on two years strong, baby!).  We’ve also got a clear tubal factor infertility diagnosis, although since it only happened a few weeks ago I’m still ruminating on this new aspect of my identity.  Obviously (from the word cloud) the experience that looms largest in my mind from the past two years is our pregnancy loss, not our infertility.  We clearly weren’t infertile before our loss — perhaps subfertile, but not infertile, and the serious infertility started as a direct result of my first pregnancy, so in a way we’re experiencing secondary infertility… although technically “secondary infertility” only applies after a live birth.  So, what the heck are we?  Newly infertile?  Crappy at producing live babies?  Really unlucky?  (Yes, yes, and yes.)  I recently mused to friends that I was thinking about joining one of the two major support group organizations in our area, but I wasn’t sure which group to join: do I join the pregnancy loss support group, or the infertility group?  I’m sort of an outlier in either, although I clearly belong in both.

Trying naturally – This is a phrase I’ve used before myself, but these days I’m coming to heartily dislike it.  It’s not the “trying” I object to (in fact, I find it an amusing euphemism for having lots and lots of sex), but rather the “naturally.”  As we move closer to starting IVF, I worry that thinking about this method of conception as “unnatural” will bleed over into our thoughts about the child that we hope to bring to life through this method.  That child will (I hope!) be our natural, biological child, just conceived with the assistance of some folks in lab coats.  I find myself stuttering over the language of moving to IVF.  We’re not “giving up” on “trying naturally,” we’re allowing for assisted conception.  We’re trying with assistance.  We’re using assisted reproductive technology.  Nothing quite feels right.  Perhaps the simplest thing to do is shrug it off and say “we’re moving on to IVF.”

So much of what we’ve experienced in the last year has defied words.  How do you describe those first fluttering feelings of your first-born child in your womb?  Some people say butterflies, some people say slippery eels, but there are just no words for that incredible sensation.  Then there’s the moment in which you realize that your longed-for baby has no heartbeat, that in an instant your life has changed, that nobody can reverse the terrible stilling of the heart that you’d hoped would beat for a hundred years.  There are no words for the fragility of life that you feel, suddenly realizing that your husband’s heart might stop beating at any moment, or your mother’s, or your own.  There are no words to describe that tiny, red, beautiful body with the perfect fingers and the perfect eyelids that is your first born daughter.  No words to describe the feeling as she slips from your body and leaves you empty inside, emptier than you’ve ever realized you could be.  No words to describe the apathy and remoteness you feel in the weeks and months after her death, when your mind is constantly rearranging its conception of your future around this terrible truth.  No words for that constant nagging sense that you’ve forgotten or misplaced something — but when you pay attention to the feeling, you realize it’s your daughter that you’re missing.  No words for the hopeless tears that take you by surprise, for the obsessive circular thinking, remembering, and fears for the future.  No words for the sudden knowledge that your fertility has been permanently lost to infection and scar tissue, that you will never again have the experience of making love with the hope of a child resulting from that perfect, private union.  No words for the hopeful miracle of IVF as it starts to consume your life, both body and mind.  No words when you see parents with their children and remember the one time you held your daughter, or wonder if you’ll ever hold a living child of your own.  No words when someone asks “Do you have kids?” or “How is your baby?”  No words to describe the terrifying blank slate of the future.

There are just no words.