Trauma, Recovery, and IVF

When I was sixteen, I went through a tough event at high school. I won't get into the details here except to say that it taught me one important life lesson. That lesson was that there is no cavalry coming. No one is going to save you. You are responsible for saving yourself. Bad things happen and even if you played no role in causing them, that doesn't matter. There won't always be justice and the people you trust to protect you won't or can't help you when you need them. As Blazing Saddles illustrates, son, you're on your own.

That traumatic event is connected to my recent departure from the blogosphere. (And let's just pause for a second here to acknowledge how very small my corner of the blogging world is: I do have a handful of regular readers, but most people who visit my blog are searching for pictures of my pregnancy tests so they can compare them to their own; sorry, guys, for letting you all down. Hope you found someone else's urine to look at.) It's connected because in both cases I felt completely blindsided by a tremendous life change, I looked to people in positions of authority for help and comfort and didn't find it, and it took a very long time for me to recover psychologically. That's how I feel about my infertility diagnosis and treatment experience, from the distance of almost two years: it was a trauma. A huge, life-altering trauma that still has me floundering.

To bring you up to speed, here's a brief synopsis of events that have taken place since O's birth last fall:

October: Have baby. Labor and delivery go pretty smoothly and we are blessed with a healthy, adorable, bouncing baby boy. I notice that I have a few weirdly obsessive nights where I keep thinking about the birth, and it takes much longer to feel physically "recovered" than my doctors predicted, but I move on to focusing much more on my delicious little newborn than my IVF cycle, my pregnancy, or my delivery.

December: 6-week followup appointment with OB. Have promising ultrasound showing no major endometriosis-related problems, decide to start the mini-pill, generally feel optimistic about life.

January: Go back to work. O starts daycare, immediately gets a series of minor colds and coughs, and everyone's sleep and commuting schedules suffer. Still, as the days get longer and the sleeping arrangements get back on track throughout the spring, I continue to feel pretty great.

April: Find out that the events of the past year and a half have had external consequences that I genuinely didn't see coming. Memories and anxiety that had previously been held at bay come flooding back. Another ultrasound shows that my endometriosis is about as quiet as I could hope, but it doesn't matter, because everything else is completely falling apart.

June: Find out that our current insurance plan - the one that covers four cycles of IVF at one clinic and one clinic only - will be ending in June 2014. Would we like to have another child between now and then?

July: After a tremendous amount of discussion, agree to see a therapist. Spend 45 minutes of a 60 minute appointment grilling her on her treatment style, philosophy, approach to patient care, and make her agree to send me a copy of her notes. Tell her the digest version of what's happened in my life since 2010 and she makes some sympathetic noises. Three weeks later she actually does send me the notes, which thankfully are unobjectionable but are also completely unhelpful. Decide not to return.

August: Go for appointments at two different fertility clinics. Clinic 1 is where we went for the fresh cycle that created O and where I left my egg retrieval feeling utterly destroyed (a feeling I re-experience daily and which generally leaves me sobbing and gasping for air, but which seems weirdly right when we actually have to walk into their building again.) Clinic 2 is brand new in every sense of the word - their offices are still partially under construction, even.

Here's what we learned at Clinic 1: they consider me a success story, what with my single cycle of IVF and my single embryo transfer and my term birth and my (if I do say so myself) utterly gorgeous son. The conversation takes a bit of a turn when I mention that I think about my egg retrieval all the time, I'm completely haunted by the memory of it, I'm generally miserable, etc. etc. Our RE is sympathetic about my bad experience and understands why I would choose to go elsewhere for further treatment, but it's clear that the financial implications of my insurance coverage are not his area of expertise. We talk about how to transfer embryos to another clinic if need be. We also talk about what would be involved if I chose to somehow get past my earlier experience and have a Frozen Embryo Transfer (FET) cycle with them. It's nowhere near as invasive as what I went through before, obviously, and they even say they prescribe Crinone for progesterone support so I wouldn't have to do those vile progesterone-in-oil shots. And to his eternal credit, right before the end of the appointment, our RE does admit that "we tried not to hurt you, but it sounds like we did hurt you a little bit, and we're sorry about that." I leave feeling like we repaired the relationship quite a bit, but part of me wished that I had abandoned RationalCharlotte at the door and taken advantage of the opportunity to scream and curse at someone who was "responsible" for all of my unhappiness. Except I didn't, because he isn't. And while I was sitting in his office and during the weeks following our visit, my anxiety level has continued to be through the roof - especially when I think about even stepping foot in that building again.

And here's what we learned at Clinic 2: they will knock me out during egg retrieval if it ever comes to that (which it probably wouldn't, because that would be very tough for us to afford just paying cash, but it's still the first question I asked.) They're willing to accept a transfer of our frozen embryos and work with us on a FET. They too are sympathetic about how upset I've been - maybe I'd like to try some valium before a procedure, or investigate acupuncture, or join them for Fertility Yoga on Tuesday nights? The price tag for a FET without insurance coverage will be steep but not prohibitive. However, they do use progesterone-in-oil shots, and the minute I hear this the whole world seems to dim for a moment. Those needles are long and thick, injecting them into my ass is humiliating, the process as well as the aftermath is painful, and my heart rate skyrockets when I so much as think about the shots. And even in a new space, with new faces, the mere discussion of what's involved in infertility treatment is enough to make me feel completely terrible.

So, what do I do? Start blogging again, it seems. Other than that I have no idea.

Stuff I'm Finally Saying Out Loud

I'm not infertile anymore. Seriously, I don't fit the definition: "not capable of initiating, sustaining, or supporting reproduction." I didn't initiate reproduction (at least, I didn't do it alone) but I did sustain and support it. I need a new label.

The reason I flipped out when I was diagnosed was not because I was infertile. It was because something was wrong with my body. That's not the same.

Giving birth to a healthy baby didn't change how I feel about my body. I still live in fear of it malfunctioning.

During my pregnancy, I didn't identify with other post-IVF patients. I identified with women who got pregnant unexpectedly, and who were struggling with the idea of becoming a mother. I felt awful when I remembered how grateful I was supposed to be.

I feel tremendous, crushing guilt about requiring IVF to conceive. First my body screwed up, and then my over-the-top reaction to it hurt my husband, family, friends, and might even have hurt my son. I should have handled it better.

My fertility issues may still be hurting the people I love.

As I was getting into the wheelchair to leave the hospital after my initial surgery to remove the endometriomas, right after I learned I would need IVF at the earliest possible opportunity, I had a single clear and frantic thought: I am not ready to go home. I can't take care of myself right now. I am destroyed. I got in the wheelchair anyway.

I wish somebody had stopped me from going through with my IVF cycle. Both my Ob-Gyn and my RE should have had the sense to say "wait up, you are clearly not okay, you need to fix yourself before you get pregnant."

Despite the above, I am EXCEEDINGLY, world-endingly grateful for my son. I want to be clear about that. I love him beyond words. His smile is the most beautiful thing I have ever seen in my entire life.

The saddest part of this for me is that my "regular" self always looked forward to pregnancy and envisioned having my first child as a happy time. When I stop to think about what I imagined vs. what we experienced, it breaks my heart. Especially since I ruined that joy for my husband, too.

As a result of this experience, I no longer believe that doctors and nurses have my best interests at heart. I don't trust them anymore.

Let's just finally throw this out there: I work in medicine. I deal with this stuff every day in my professional life. Separating the two has become a challenge.

When I say that therapy was "suggested" to me during my time of great unhappiness, I really mean that my loved ones tried repeatedly for months to get me to go. So did my doctors. I refused every single time, because:

I do not trust therapists. I think therapy is awful. I have tried it, and I do not like it. It makes me feel humiliated and dirty and much worse about myself. I rank my few, long-ago attempts at therapy as some of the most upsetting experiences of my life. Top ten, anyway.

This was far and away the worst experience of my entire life.

And I don't know how to move past it.

My Body's Doing Great; My Mind, Not So Much

First, the really good news: a followup scan of my ovaries revealed that they look healthy and normal! Well, mostly - there were two small endometriomas as of December, and although it does appear that they're still there, they're actually smaller than they were the last time we saw them. I guess that mini-pill really is doing something.

I don't mean to minimize the above. This is a really, really big deal. When my doctor confirmed that I was stable for the time being, I felt a tremendous weight lift off my shoulders. I've just bought myself six months of the status quo (knock on wood), and that's a pretty good quo if I do say so myself.

But. But but but but but. For a variety of reasons, the last three weeks have been pretty awful. I've been re-confronting a lot of my negative feelings about infertility, pregnancy, medical care, my body, and my own mental health. It's been over a year and a half since I found out that I was infertile. A very eventful year and a half, but still - this is not exactly breaking news. I am extraordinarily lucky and I feel so grateful that I have a healthy child after my first cycle of IVF. Yet I spent most of the past three weeks on the verge of tears while I waited to hear the all-clear from this scan. Why?

First of all, my infertility journey isn't over. Not by a long shot. I have three embryos on ice from the cycle that gave us our darling O, and I feel a responsibility to give each one of them a shot to grow into a baby. This means that there will come a day when I have to walk back into the fertility clinic that I associate with so many bad memories, sit down across a desk from my doctor, and go over my future plans with him. Then I'll have to go through at least one Frozen Embryo Transfer (FET) cycle with them - the same doctors, the same nurses, the same waiting room, the same exam rooms. I cannot tell you how much I am dreading this. And if my recent scan had come back with any indication that the cysts were growing, it was possible that I would have set up that next fertility appointment as soon as the clinic had an opening in their schedule. So while I'm thrilled and relieved that I bought myself at least another six months, I still know that this is going to happen at some point, and I do feel a bit like all I got was a stay of execution and not a full pardon.

Also, there was a bad moment during the scan when the ultrasound tech saw something odd in my uterus (no, not a baby, I promise) and asked if I had had an endometrial biopsy. Let me assure you now that I have no indications that would suggest I needed an endometrial biopsy, and when I spent a few minutes with good old Dr. Google looking at related ultrasound images after the appointment, I think that all the tech was asking was if I'd had one in the past since it might have explained a particular finding. I haven't, and the finding was benign, so there's nothing to worry about. Except that in between when she said it and when I got back to my computer and did my research, I took two minutes to look it up on my phone, and learned that it's usually an in-office procedure that is performed without sedation even though some women find it painful. This was enough to send me into a total tailspin. It's hard for me to articulate how upset I was even reading about women's experiences with endometrial biopsy; as I write this today, just getting the link for the sentence above I lost about twenty minutes reading comments and holding back tears. And this is for a procedure with which I have absolutely no connection! The problem is that I know someday, someone will recommend that I do have an endometrial biopsy - or a hysterosalpingogram, or a dilation and curettage, or any number of other gyn procedures that are invasive and painful up to and including another fresh IVF cycle - and I will just want to die.

Wanting to die when you hear that other people - who, let's recall, are not you - have had or are going to have painful gyn procedures is a bit extreme. I don't have any actual thought of suicide (shudder), I just have this idea in my head that experiencing more trauma between my legs would be so terrible that it seems incompatible with life as I know it. And that's not right, I know it isn't. Most of the time I feel fine - really, overall things are going well, and it's springtime and I'm wearing the sundresses I couldn't fit into last year and my baby has incredibly kissable cheeks - but I'm concerned that something so relatively minor could send me off the rails. Concerned, and angry, and ashamed, and all of the feelings that I struggled with last year. Clearly they're not just in the past.

Wishing and Hoping and Pumping and Nursing

So you know how a few months ago I was all "breastfeeding rocks! It's totally easy! My kid is growing like a champ!" Sounds pretty smug, huh? Yeah. About that.

Little O is doing great - really, he's a delightful child and it's a joy to be with him - but it turns out that he's not exactly growing like a weed. He's growing like a... houseplant. A plant that actually, when you touch the soil, does feel kind of dry to the touch. And now that you think about it, when was the last time it had a new flower? And, oh G-d, I'm comparing my baby to a houseplant! The exact thing you're supposed to be able to keep alive before you have kids!

Basically, our little man's weight slipped from the 50th percentile at birth to the 25th at 4 months and the 6th at nearly 6 months. That is not good. That isn't terrible - he's still generally very healthy and happy - but it is not, shall we say, ideal. In fact, it kiiiiiiind of fits the definition of the whole "failure to thrive" thing. Spoiler alert, this appears to have a happy ending, but I think my reliance on breastfeeding was to blame.

In the very early days after O's birth, we did do a little bit of supplementing with formula because my milk was so slow to come in. But by two weeks or so, it was all breastmilk all the time. He started growing out of his clothes at an alarming rate and I was even pumping a little extra milk each morning to put in the freezer. This lasted up until I went back to work, at which point I began pumping twice a day and giving him that milk at daycare in a bottle - still pretty easy. Until, at his 4-month checkup, the pediatrician mentioned that he had fallen from the 50th percentile on the growth chart to the 25th. She and I talked about how he was still exclusively breastfed, how the growth charts are not as accurate for many breastfed babies, how he was doing so well overall that she wasn't concerned. Still, I was worried enough that I looked up whether my milk supply (estimated at about 25 oz. per day) might be inadequate. No, said the experts. Breastfed babies need about the same amount of milk from 1-6 months, and after that their need should even start to gradually decrease because they get more solids in their diet.

All the same, I figured that more must be better, so I bought some disgusting tea and some fenugreek pills and tried to change up my pumping routine a little. I saw an increase of about an extra ounce per day in what I was able to pump while at work, but nothing dramatic. Honestly, I didn't expect big changes - my breasts only have so much milk-producing tissue, and there's only so much time I can realistically put towards pumping. And after all, if O needed more milk from me, he would be requesting it by nursing more on the nights and weekends, right? And then my supply would increase as a result?

Yeah, not so much. We had to bring him in to the pediatrician unexpectedly right before he turned 6 months old, and I was horrified to see where he now showed up on the growth chart. We immediately started giving him more milk - a full 30 oz. of formula and breastmilk every day at daycare, plus as much nursing as possible in the mornings and evenings. A week later, I could tell that he was a much heavier baby. And a week after that, he clocked in at the 22nd percentile, so I'm very relieved and feel like we're back on track.

I feel terrible that my baby was deprived of what were clearly necessary calories for so long. As his mom, I feel like I should have noticed that something was amiss before it reached this point. But I also have to say, what the hell, breastfeeding researchers? Is my kid just the statistical outlier for whom the steady diet of 25 oz. of breastmilk actually wasn't enough? He doesn't seem to have any actual feeding problems, and the fact that he gained weight so quickly once he was getting more food suggests to me that it really was an issue of volume. And I hate pumping, mostly because of the aforementioned D-MER, plus I really hated drinking that lactation tea, and now I feel annoyed that I've been doing all of this for nothing. I mean, I know it's not nothing - I'm glad that O is getting some breastmilk every day, and so is our pediatrician - but I do feel a tiny bit misled about how easy and natural this process would be. And in terms of breastfeeding not going perfectly, I know I'm in good company.

Some Highly Unoriginal Thoughts on Working and Motherhood

I’m back to work. I’ve been back to work for some time, actually, and while it has not gone perfectly at least we've maintained a functional home and family while we’ve managed the transition. I do work full time, a little more than 9-5 Monday-Friday, and O is in full time daycare as a result. I like his daycare quite a bit - at times I have more confidence in their ability to care for him than in my own parenting skills (seriously, these people are educated in early childhood development, know all the words to “The Wheels on the Bus,” actually seem to enjoy the album of kids’ songs that appears to be playing on a loop and makes me want to attack the stereo with something pointy, etc.), and at the moment the plan is to continue this arrangement indefinitely.

It’s a good setup, all things considered. There’s just one problem: it has no built-in redundancy or failsafes. This doesn’t sit well with me – I’m the person who enjoys having NASA-level control over logistics. And boy, have those logistics gotten more complicated since we had a baby: I will take this car here and you will take that one there so you can pick up this other person but do not park in that lot, park in this other one, because your car has the stroller in the back and mine has the car seat base and the diaper bag and on and on and on….

For instance, our daycare routine has only one arrangement where it really works: I wake up at 6 AM, I take care of the cat and the dog and breakfast and packing a lunch and pumping some breastmilk and, oh right, the baby also needs to be changed and fed. I try to arrive at daycare right as they’re opening the infant room in the morning, then hightail it to the office; at 5 PM, I finish up whatever I’m working on to rush back to the car and do it all in reverse. If I forget one single chore, or I leave one tiny item out of my pumping bag, it all falls apart. It feels like a minor miracle that on most days, our household functions as well as it does. And it’s to the eternal credit of our extended support staff – my wonderful husband in particular, plus our friends and neighbors – that we’ve navigated hurdles like O’s first cold (actually, make that his first five colds) and several late night and early morning meetings for my job.

Here’s the thing: I’m actually really happy at the moment. Yes, I’m exhausted, and yes, most days are some degree of stressful. But most days are also pretty successful. (And let’s not forget that in stark contrast to the last year, I’m not wildly hormonal while also trying to process some huge life changes.) But the same personality traits that make me love the NASA-esque organization stuff – and that make me love my job – are the ones that keep me up at night wondering what we will do in the future.

This arrangement will work at most until O is ready to start kindergarten, so what, another four years? My own mother didn’t work when I was young and I treasure the memories of meeting up with her after school. There’s also a practical component to having an adult in the household who doesn’t work, or who works part time; my vision of O’s future doesn’t include the frantic must-get-all-chores-done-on-the-weekend pattern we’ve fallen into so far. I want him to have adventures and opportunities to volunteer and time to explore music and sports and art that we can’t provide at our family’s current rate of speed. It seems incomprehensible that I won’t be available to offer him the same kind of care that my mother offered me, but it also seems incomprehensible that there could be a day in the not-so-distant future that I would leave the workforce with no plans to return.  And what if we have another child?!?

Bear in mind, I don’t think I could have written anything less original if I had tried. I could probably hyperlink every single word in this post to other sites where women (and not a few men) are also debating the balance between work and parenting. These are not unique, or unanticipated, concerns or fears. But they are real ones.  And they all center on the same thought that keeps popping up when I’m puzzling over this in the middle of the night, or stuck in traffic, or packing up my pump for the millionth time: what’s best for me personally might not be what’s best for my family. For now. I think?