Elegy for Amy

May 31, 2012

Filed under: Uncategorized — elegyforamy @ 10:05 pm

Sometimes, I surprise myself. If you know me, then you know I have a penchant for food and a big appetite. Delicious food, unhealthy food. Cheesecake, chocolate, french fries, melted cheese, oh, and bacon, a thousand times bacon. I also happen to be not very fond of exercise, and relatively short, which means I am in a constant battle not to lose control of my weight. I try to strike a balance from meal to meal and day to day, and I’m really about 20-30 pounds overweight but not too, too bad, and I just try to accept this about myself.

But I always said, “if I ever get pregnant…” If I ever got pregnant, oh boy did I plan to indulge. Not because I thought I needed to – I am aware, 300 extra calories per day, and all that – but because if I was going to get as big as a house anyway, what’s a few more pounds and a lot more cheesecake? I was giving myself a once in a lifetime free pass.

And then the moment was upon us, and even in the months before we started trying, I realized it was healthier for me and for the baby if I ate better. Weighed less. Exercised more. So instead of cheesecake and nachos, it was fruit salad and half a sandwich and working out religiously while taking my prenatals. And once I was pregnant, of course, I worked out less and I ate my share of fast food, but by and large I restrained myself and ate well and gained very little weight at all.

And then we lost the baby. And I have always been one to console myself with food. Cheesecake, again (can you tell I love the cheesecake?). Chick-Fil-A milkshakes. They’re 800 calories and I only let myself have one on really, really bad days, maybe once or twice a year. Stuck in the hospital unable to eat, and then losing our baby? I think that counts. I got one every day I was in the hospital. And, I’ll be honest, I ate horribly the few days after, too.

But then, again, surprise. I want to be healthier. We might do this again, and I don’t want to be unhealthy, or large, and even if we don’t, I don’t want people to still think I am pregnant. So here again, when I thought I would be drowning my sorrows in cheese, I’m trying to eat better, reduce portions, work out every day, take my vitamins. I’m proud of myself for doing this, but also kind of alarmed. Who is this woman who prefers workouts to cheesecake? Where did that come from? Is this what parenting feels like, to me? Choosing the thing that gives us the best chance over cheesecake? I guess so.

 

8 weeks May 29, 2012

Filed under: Uncategorized — elegyforamy @ 8:44 pm

It’s been 8 weeks since Amy was here and gone. 8 weeks seems like nothing, like it just happened, and yet when I think about all the days between then and now, it seems like an eternity. I would have been 32 weeks pregnant this coming Thursday. Had she been born this coming Thursday, she would have had a serious shot at a normal life, but she would have had a long NICU stay. She probably would have had some kind of trouble. She would have been still far, far too early. So I think of that, and the eternity of days that have passed between then and now, and I don’t know if I want to laugh or cry because, in retrospect, it’s so totally obvious that we never had a chance at all.

I watch Private Practice, and have continued to watch it, even though there is a new storyline where one of the main characters finds out her 20 week old fetus has anencephaly and will not survive outside the womb but she decides to continue the pregnancy and donate his organs “so his life will matter.” I can not really explain why I have continued watching this, knowing it will be awful in the end, except to say that my situation was unique even among a unique situation, and so in a weird way it is cathartic just to be understood.

Most people never have to know what it feels like to have your baby die. Or the terror of going into labor at 23 weeks. Or the sadness that eclipses everyone in the room when you give birth to a baby who’s already gone. Most of you reading this blog, in fact, will never know firsthand how any of these things feel. But even fewer people will know what it’s like to go into labor knowing. To carry a baby with dread and then go into labor knowing that no matter how it happens, your baby is going to die. Nobody knows, how it feels to know with every contraction that you are killing your baby, maybe not then but simply by the very act of birthing your baby.

So watching it, on TV? Is really fucking sad. It really, truly is. But it’s also cathartic. Because someone, somewhere, understands exactly how I felt. Exactly what it was like. It’s the same reason I read blogs about other dead babies. I feel alone in this horrible knowledge most of the time, and watching this, I knew that someone got it, really and truly. Swap out anencephaly for preterm labor before any hope of true viability and I lived that. I said the same things. My family said the same things. It was exactly that sad, and exactly that beautiful, and exactly that much more sad for being both.

She was mine, and I miss her every day. I miss being pregnant every day, funnily enough. I miss what it all meant to me. And yet, it’s 8 weeks later, and despite all of that? I’m fine. Everything is fine. I go to work. I cook well-balanced meals. I go out with my friends. I stay in with my husband. I’m even working out regularly again. I’m okay, really and truly, but at the same time, I’m sad. It hurts all the time. But it fades more into the background, humming along behind my daily life, a little reminder that something awful happened, but everything is still fine.

It doesn’t seem possible, but it is.

 

Should I Stay or Should I Go Now? May 28, 2012

Filed under: Uncategorized — elegyforamy @ 1:35 am

This incompetent cervix diagnosis has really thrown me for a loop, and I’m having a hard time getting back into a positive headspace about a future pregnancy. I feel like, before this doctor’s appointment, we had a pregnancy plan from our OB, and it was a plan that I agreed with and a plan that I was fairly confident would give us a good shot at, if not a full-term pregnancy, certainly one that made it well into the viability territory of 28 weeks that will be our first goal with any future pregnancy. I couldn’t say for sure when I’d be ready to do it, but it was obvious to me that we would do it and probably sooner than later.

Now, I can’t even say for sure that I want to do it again, ever. It definitely doesn’t seem feasible that we’ll want to do it sooner than later, though hopefully I’m wrong about that.

Cervical cerclage.  There have been a lot of studies about their effectiveness, some as large as 1300 women. There have been none that demonstrate any significant improvement in overall outcomes, in duration of pregnancy, or in viability of babies born. None. And you look up the efficacy of cervical cerclage on hospital or doctor’s websites, on WebMD, and they’ll say they are 80-90% effective. What they mean by that is, in patients who receive a prophylactic cerclage, 80-90% of them go on to have a baby who lives and cries and goes home in an adorable little outfit. But here’s the thing – those are your odds, anyway. Somewhere in between 80-90% of women who had this happen will go on to have a successful subsequent pregnancy with no intervention at all.

The upside of the cerclage is that were I to get one, I would initially not have to go on bedrest and can theoretically continue my normal activity throughout the pregnancy. And were my cervix to randomly dilate, obviously, the cerclage is supposed to hold it closed. Those are two very big upsides.

The risks are pretty big to me, too, though. One of course is that it is possible for the cervix to dilate against the cerclage, causing bleeding and in some cases permanent damage to the cervix. But then there is the risk of infection from having the procedure at all, from having a foreign body in the cervix, and from having it removed. I firmly believe that whether or not my cervix dilated on its own or not, infection played a big role in our loss. At the time of my hospital admittance, I was 2 cm dilated, but my cervix was quite long still (between 3 and 4 cm) and at this point I had already begun having active contractions. Typically you don’t see a loss from incompetent cervix until the cervix has shortened considerably or entirely, triggering contractions and labor, unless there is an infection helping things along. It seems entirely possible that IC or not, I could have continued the pregnancy for several more weeks or even months without losing Amy had there been no infection. So risking an infection for a procedure that may or may not even work is scary.

The other risk is that inserting the cerclage or even just having it present in the cervix later can trigger preterm labor, the immediate cause of losing our baby. The doctors can argue all day about whether the chain of events was preterm labor->babyloss, dilation->preterm labor->babyloss, or dilation->infection->preterm labor->babyloss, but in the end had we not gone into labor, Amy might be kicking around in NICU right now, or even in my belly still.

However. There is some evidence because incompetent cervix is such a vague, difficult diagnosis, many women are included in the cerclage studies that do not actually have incompetent cervix, and that in a very specific patient population, cerclage can and does make a difference. Am I that specific patient? If I am, and I don’t get the cerclage, I’m putting our baby in danger. If I’m not, and I get the cerclage, I’m putting our baby (not to mention myself) in danger. Heads, you lose; tails… you lose. I want badly to win, and neither choice feels like a sure win anymore.

 

Grieving May 26, 2012

Filed under: Uncategorized — elegyforamy @ 12:16 pm

More and more, I am finding other peoples’ observations and advice about my grieving process supremely annoying. The truth is, the only one that really knows how I’m grieving or feeling is me, and Dan is pretty well aware, and my mom has a pretty good picture, maybe. If you aren’t with me 24/7, you can not possibly know. And if, say, you are a medical doctor, who sees me only for 5 minute stretches of time and has talked to me for a grand total of 30 minutes combined in your entire life, then I don’t think you are qualified to dispense psychological advice about how I’m handling things.

I loved it, for example, when the doctor informed me that while medically I can start trying again in 3 months after the birth, “you need to grieve. You did lose a child, you know.” Really?? You don’t say. Until this very moment, I did not have that startling insight. It is obviously not even remotely possible that I am trying to hold it together and have a non-depressing strategic conversation because you are a stranger, I am in need of your medical advice, and sobbing about my dead daughter is not conducive to getting the information I need.

And you know what? I’m not just grieving for my child. That’s not all we’ve lost here. Our child. Our hopes and dreams of starting our own little family, hopefully delayed and not gone for good. But also, I’ve lost any chance of ever having a normal pregnancy. Of simply worrying about things like what to register for, how much weight I’ve gained, whether or not it’s okay to take a Tylenol, and cloth diapers versus disposables. My future pregnancies pretty much promise to include obsessing about every twinge, at least a couple of late night trips to the ER when those twinges don’t stop and we’re worried about what it means, a surgery to sew my cervix shut followed by constant terror that I will go into labor anyway and bleed to death, being unable to actually plan or buy anything because I no longer think pregnancy leads to bringing home a baby, oh, and no sex for 10 months, which is particularly ironic considering that’s the only way to get to this stage.

I’m tired of hearing that I need to take time, that I need to be sure, that I need to be calm, or zen, or relentlessly positive. What I really need to do is grieve in my own way, on my own time, and have everyone stop giving me mandates about how and when to do it. I will take the time I need without the helpful advice. And a newsflash – the worst has happened. I don’t think being relentlessly positive and calm is really in the cards for me, now or ever again.

The best I think I will ever be able to give is to hope for the best, and be prepared for the worst. I don’t think that means I should never try again. I think it means something truly terrible, and unlikely, and unlucky, has happened to me, and it’s changed me and my perspective in ways that I guess those people who think I am going to be relentlessly positive can never imagine.

 

Cerclage May 22, 2012

Filed under: Uncategorized — elegyforamy @ 8:45 am

Well, fuck.

We had our follow-up (oh, excuse me, “pre-conception counseling”) yesterday with the perinatalogist, the high-risk specialist. I don’t think I followed this up, but after the horrendous experience with the receptionist, they actually called me on the doctor’s prompting to schedule my appointment, which makes me feel better that the issue is not, you know, the doctor. Anyway.

She disagrees with our OB and is very confident that cervical incompetence is responsible for our loss. She has some very convincing evidence for this in addition to her vast experience with these types of pregnancies – namely that my cervix was open but had not effaced (lost any length) at all, and that the copious discharge I was having for 5 days prior (which can be/is likely a sign of cervical dilation) preceded the slight fever I got, indicating to her that infection was a result of my cervix being open to the outside world, eventually causing labor.

Dan is practically *excited* about this. He is excited about her certainty. Her rational proof. Her faith in the solution. He is excited that she had clearly taken the time to review our case at length, did not spend our appointment reviewing my chart but in fact discussed details from memory. I can see that.

I, on the other hand, find her certainty a little unnerving, as no one can really ever be certain in these cases, but mostly, I am terrified of the solution. Prophylactic cervical cerclage. At 14 weeks pregnant, she wants to go in and literally sew my cervix shut with something that looks more or less like a twisty tie until 36 weeks. Risks include: infection, miscarriage, permanent scarring, oh, and if they’re wrong and I go into spontaneous and rapid preterm labor? My cervix can literally rip through it. Awesome.

She assures me that last possibility is extremely rare, not even on her list of things to be concerned about with the procedure, and has never happened in any of the patients she’s done one on. History has shown me not to discount the extremely rare odds, though. This blog exists, right? It has to happen to someone, right? It’s hard not to think this way. They can also wait and monitor me very closely and do what’s called an “emergent” cerclage should my cervix begin doing anything untoward, but doing it prophylactically has far fewer risks and is far more effective (80-90% versus 50-60%). She was very clear that she thinks this is a non-ideal plan though she’ll do it if that’s what I want.

Benefits of the cerclage – mainly, the benefit is that as long as she’s right and this is the issue, it’s unlikely I’d have to spend much time on bed rest. Most women who get one are able to stick to fairly normal activity for most of the pregnancy. This is not a small thing, and if we were not concerned about the risks of the cerclage, we’d for sure want to get one just because of this. This will be in addition to the p17 shots and the weekly monitoring, so one more weapon in the arsenal against ending up with another baby is certainly welcome.

But fuck, I really do not want to get a cerclage. The risks, while small, are quite alarming. I wish I had a crystal ball.

 

Pretending May 19, 2012

Filed under: Uncategorized — elegyforamy @ 1:04 am

Here is something that is true: From November of 2011 to April 3, 2012, I was pregnant, like anyone else. And despite less than ideal circumstances, I went into labor one morning, like anyone else. And in even less ideal circumstances, I delivered my child the old-fashioned way, without even any pain medication, like anyone else. And my body then recovered from that birth, like anyone else.

But my labor happened too early, and my baby ended up dying, and as a result, the world at large expects – nor really, the world at large **needs** me to pretend that that period of my life, the time when I was pregnant, my labor and birth of my child, never happened.

Because funny pregnancy stories aren’t funny anymore, when the baby you were pregnant with didn’t make it home. Because no one needs pregnancy tips from someone without a healthy, living child to hold up as proof that “I ate a turkey sandwich and look, here’s the baby!” Because even if you want to know, say, what a contraction feels like (Scale of 1-10? A 10. Unquestionably. ), or how long it hurts after (it doesn’t, somehow), my story ends with a dead baby, and no one wants to hear about the birth of a dead baby. Yet another on the long list of things that sucks about losing your baby.

I try to keep it to myself, because I see the involuntary flinch on their faces when I start a sentence with “when I was pregnant” (and god forbid I follow that up with “with Amy”). And because I know that even when I don’t mean it, bringing up Amy invalidates everyone else. Imagine a group discussion like this:

Friend A: I am having the SHITTIEST day – my car broke down, and now my cat is sick and I think I have to take her to the emergency vet.
Friend B: That sucks, I’m stuck at work late and I’m exhausted.
Me: Ugh, me too. I had to call to schedule my postpartum follow-up and the receptionist kept calling my follow-up for my stillborn daughter “pre-conception counseling” and then I started crying and had to hang up.

Yeah, Friends A&B feel kind of like heels now, right? Even though I genuinely think their days were shitty too. So, I keep it to myself.

Oh, and then there is my inappropriate and very dark sense of humor. The death of your very much loved and wanted baby is not funny. But there are things about the situation that kind of can be. Except not really, especially to anyone who doesn’t feel like they have the right to laugh at those jokes, which is, well, pretty much anyone who’s not me or Dan. So, I keep it to myself.

I don’t want to pretend 5 months of my life didn’t happen, and I don’t want to pretend like I don’t have any knowledge of pregnancy, or labor, or birth, or postpartum recovery. Sometimes, I can do it, to be polite. But sometimes, I just don’t want to.

 

Mother’s Day May 15, 2012

Filed under: Uncategorized — elegyforamy @ 3:01 am

I spent a lot of time trying decide what to write in a Mother’s Day post, but like everything else, so much of this experience is conflicted. I wasn’t sure if I was more concerned people would forget me on Mother’s Day, or that they would remember. Everyone who matters remembered me, but it’s obviously bittersweet for all of us. In the end, all I knew for sure that I wanted was for things to have ended differently, and I can’t have that.

I’d thought that on Mother’s Day this year, I’d be closing in on 30 weeks pregnant, preparing to bring a baby home and celebrating a lot of our last “just the two of us” moments. Instead, I sit back and watch those who got pregnant after me, who started trying after me, become more pregnant than I ever got to be. I feel left behind. And I miss my daughter. There’s no greeting card for that.

I did, however, wake up to find Amy’s tree had bloomed.