Elegy for Amy

Green-Eyed Monster April 30, 2012

Filed under: Uncategorized — elegyforamy @ 4:01 pm

Losing Amy has brought something out in me that I don’t like at all – jealousy. And this jealousy is not your garden-variety envy, this is a cruel, snide jealousy. A jealousy that says over and over, your sadness is not as big as mine. Your loss not as terrible. Your worries unfounded. It’s emphatically not nice.

Sometimes, it’s the kind of jealousy you or I or anyone would understand. A mother pushing a clearly newborn baby in a stroller. A woman in normal, natural labor at 40 weeks, signing into Labor & Delivery. A friend’s photo of their healthy, very much alive, new child. A 37 weeks pregnant friend excited that her husband is assembling the crib. A friend who complains about how “difficult” it is to raise a child. Of course I’m jealous of those things, right? Of course I get a little teary, sometimes.

But it’s so much darker than that. I am jealous of women who have only had early miscarriages. Women mourning their own pregnancy losses, and all I think is, that would have been easier. I wouldn’t have known we were having a girl. I wouldn’t have registered anywhere, bought maternity clothes, gone to Babies ‘R Us to look at car seats. I didn’t have such specific dreams yet then. It would have been easier. But does that make them less sad? Do I need to view them through my “you don’t know what loss is” lens? What is this, a competition?

I am jealous of women who have premature babies who live. I think people who are worried about making it past 32 weeks are greedy. That’s absurd. That’s ridiculous. It is not safe for babies to be born before 37 weeks. These babies have to stay in NICU, undergo surgeries and treatments, their parents worried all the time. The difference of course is that these babies will probably live. That we got screwed, that we spent days desperately hoping for 26 weeks, has changed our perspective. For us, next time, anything past 28 weeks will just look like a bonus. A blessing. Gravy. But 28 weeks isn’t all that great. It’s just better than we got. Why wouldn’t a parent be worried about her 32 week old son? Of course she would. She should. It’s not fair, the things I think.

I am jealous of women who already have live children. Whatever kind of loss you’ve had – early miscarriage, late miscarriage, stillbirth, anything – they have a living child, and of that, I am jealous. My sadness feels greater, I am not mourning just one particular child but hopes, dreams, plans. To be a family. To raise a child. They still get to have those parts, in fact have already known them, just not with this particular child. And I think I’m probably right, that that does make it easier, because they haven’t lost those things, and I have. But they’ve still lost a hell of a lot. What an awful thing to be jealous of. And yet, I am.

And then there is the most horrible of all – I am jealous of people whose children have died later. Not like, 10 years later, but months. Even weeks. Days. They speak of their loss the exact same way that I do, the same way I feel, but still I am jealous, because they got to at least know their child, at least a little bit. At least for a while. And I wish I’d had that, even if the end result was the same. I would have loved to know Amy, if only for a little while.

It’s not right, and it’s not fair, and it makes me feel like a horrible person. But these thoughts come to my mind, unbidden, all the time. What purpose does this serve, comparing my pain to others? Does it matter, who is more sad? My incredible sadness doesn’t take away someone else’s right to be incredibly sad over something slightly different, but just as awful.

 

Changing Gears April 28, 2012

Filed under: Uncategorized — elegyforamy @ 10:19 pm

It seems like one of the elements of coping with this is finding a way to live in your life, in the moment, without focusing all of your attention on reproduction. Considering that for 30 years I did just that every day, this is surprisingly hard to do. For women at least, the second you decide to start trying, it becomes a huge part of your life, your thoughts, your day-to-day. And I was never even particularly baby-centric, it’s just a huge change in your thinking. When you make plans, there is suddenly someone or something else to consider. Sometimes that’s an inconvenience, as in, maybe we shouldn’t go to Costa Rica after all, and sometimes that’s fun, as in, what should I knit next, oh I know, I’ll knit this awesome Alphabet Monkey Blanket and our daughter will love it for ever or at least until she’s 5.  Pregnancy has its own special brand of fun that no one really wants to hear about but other pregnant women, so you find others to talk to, it becomes a chunk of your social activity. Time becomes marked by doctor’s appointments and, later, the time before the baby and after you’ll have one. Long-term plans all include the baby. It’s all-consuming, in many ways.

So now, I feel like I’m living a bit in Baby, Interrupted, and it’s easy to just keep thinking about When and How and Why and framing my life in the same way, but that’s not healthy, and it’s not sustainable. And, it’s kind of stupid. I’ve mentioned before, being pregnant is kind of inconvenient. Life is easier when not planning around a baby. And while I would prefer to get the same experience everyone else does – get pregnant, anticipate the baby, have the baby at the appropriate time, raise the baby – we have a fairly unique opportunity here.

Before you get pregnant, you fret about how your life will change, what you’re giving up, and you try to get in your last hurrahs. But after you get pregnant, once the wheels are in motion and there’s no turning back, you get a better glimpse at what in your life has or will changed and what you really do miss. Normally, there is no second chance at that – even the second time around, you have a child now, so it’s not the same. We get a second chance to be really, truly prepared. To enjoy our lazy solo mornings. To get the house better equipped to deal with feeling crappy for months or a crawling toddler. To take the trip we lamented not taking. To do things without worrying about the consequences to your future child. I’m trying to revel in them, make sure I do them right. Not find myself, next time, wishing I’d realized the last morning when we puttered around congenially that it would be the last morning we’d ever do that, just the two of us.

It’s shockingly hard to change gears this way, but I think it’s a good idea. And I think it would be fun, if we let it.

 

It Gets Better? April 27, 2012

Filed under: Uncategorized — elegyforamy @ 9:38 pm

I’ve been having a hard time the last two days. I don’t know if it’s the hormones, or knowing that yesterday should have been the beginning of the third trimester, or just, you know, that Amy isn’t here, but I cry over everything, and when I’m not crying, I am irrationally irritated about basically everything. People say things, and I have to stop myself from replying in a wholly inappropriate manner. Example: “Oh my god, I’ve had the worst morning ever.” What I want to say: “well, if you didn’t give birth to your dead baby I think you’re doing okay.” What I actually say: nothing.

As it gets closer to what should have been go time, it’s harder and not easier to see other people succeeding at that which we failed. And it does feel like failure. Another example, someone was concerned about feeling like a failure if they ended up getting a C-section. What I wanted to say, and meant, in a totally genuine manner: if you get to bring home a living baby, YOU WIN. What I actually said: nothing. I don’t get to tell everyone in the world that their worries aren’t important just because the worst thing imaginable happened to me. But once this happens, really, anything that ends in a live baby seems like winning. Before this happened, I thought birth plans were a little silly, and the obsession about which interventions you were willing to have a bit over the top. Now? I think it’s flat out insane. If the end result is you and your baby are healthy and well, you win.

Conversely, if your body refuses to carry your baby to term, or even for 3 lousy extra weeks, and in so doing you kill your perfectly healthy baby, then, you will feel like a failure. Even though everyone tells you over and over and over about how this wasn’t anything you did. That it wasn’t your fault. That sometimes these things just happen. That’s all true, but you know what? Mostly, these things do not happen. Most people just go about their business and 9 months later they get a baby to bring home. And they don’t bring it home in a jewelry box. So, I lose. Someone has to, right?

But, did it have to be me?

Today, I am sad, and angry.

I read somewhere, that many people, when this happens, say they don’t believe in karma anymore. And I nodded my head right along with it. This was so hard for me – to decide to go for it at all, to stay calm while pregnant, the ridiculous daily injections. Hundreds of injections. On the heels of so many crappy medical issues. If anyone deserved to have a relatively easy, breezy pregnancy, it was me. I had a 10% chance of a lot of crappy outcomes, but there was less than a 2% chance this would happen. Really, I can’t be in the 98%? Just, you know, once?

And let me vent for a moment about our perinatalogist’s office, Atlanta Perinatal Consultants. This is an office dedicated to managing and monitoring high-risk pregnancies, so I’m going to assume I’m not the first patient who’s lost a child to preterm labor, or stillbirth, or lost a child period, and I’m sure I won’t be the last. And yet, when I call to schedule a follow-up appointment at the urging of our OB as they have some records the OB doesn’t and may have good input on what happened here, I’m treated like a brand new patient. I’m told that my doctor, who has been happy to see me for the last 6 months, will “decide” if she will deign to grant me an appointment after I fax them my records (the ones they already have) so they don’t have to be bothered with such mundane things as LOOKING IN MY FILE. Oh, and when I do that, I need to state that I am requesting “pre-conception counseling.” What a nice, sensitive thing to say to a grieving mother who’s just lost her child! Pre-conception counseling. My daughter was conceived, gestated, born, and died, but to follow-up with the doctor managing that pregnancy, I have to request “pre-conception counseling.”

The real kicker is that when I began crying on the phone due to the insane requests and insensitive handling of this traumatic situation, the gatekeeper told me I should “call back when [I] feel better.” This is an appropriate thing to say?? I feel like just as a human being, if you have someone crying on the phone because her child died and you are forcing her to call multiple people to explain this so she can hand deliver her records to you THAT YOU ALREADY HAVE, that maybe even if it is office policy, maybe, just maybe, you see if there is some way you can spare her this one indignity and access them yourself. Apparently that’s just me.

 

Every Day That Ends in ‘Y’ April 24, 2012

Filed under: Uncategorized — elegyforamy @ 5:23 pm

A lot of parents who have had a stillbirth or neonatal loss talk about how “anniversary days,” are hard especially in the beginning. Like,  if you lost your baby on a Tuesday, then at first every Tuesday is a rough day. I don’t really get that. I have so many memories and associations with the pregnancy and the loss, enough to cover nearly any day of the week.

Tuesday is the day that I gave birth to our daughter, and the day that she died. Friday is the day that I started having contractions and we landed in the hospital. Sunday is the day my water broke and we began preparing for our baby’s death. Thursday is the day that marked each new gestational week, the day I got e-mails from Babycenter announcing all of the cool things the fetus within was now doing, the day that we pulled so hard to get to in the hospital. Wednesday is the day that we had all of our prenatal appointments. If I had to pick a particular day tinged with sadness, it’s Thursday, because that was our day that we counted our pregnancy milestones. On Thursdays, I still think, “if we’d made it to today, she might have had a shot,” or “if she had made it, I’d be 27 weeks pregnant today.” So yeah, Tuesday, April 3rd, was a shitty day, but just the fact that it’s Tuesday doesn’t make me more sad.

I was pregnant every day of the week. And now our daughter is gone, every day of the week. Some days just happen to be better than others. Some days, I feel practically normal. And then I feel guilty, for being okay. How can I be okay when she’s not? And the guilt is a spiral, what more should I have done? Nothing. We all did everything we should have done. Really by any measure, even on Friday morning, if I had not called the doctor, that would have been what I “should” have done. My symptoms did not merit any particular alarm. So, okay, we played by the book, but then it’s well, what COULD we have done. I could have insisted I be seen more often. That was the original plan. But everything was going so well, they switched me back to the regular, low-risk schedule. If I had insisted, if I’d gone in at 22 weeks, would things have ended better? This is how you drive yourself crazy.

It’s been three weeks now, and I have more and more moments I’m okay, days where I’m okay. More and more days where I only tear up a few times, or only cry once or twice. I think there might have been one day this past week that I didn’t cry one single time. I can see that eventually, I will simply be okay, even if what happened never is. And that makes me feel disloyal to our little girl, but I’m not sure there’s anything to do about that. I’m here. She’s not. That’s horrible, but it is what it is. I did everything I could do. I did more than I ever thought I would, or could. Hopefully, somewhere, she knows that. Hopefully she’d be okay with my being more okay.

Also, an update for my last post – I found a dress. It isn’t going to be my favorite dress, and it’s two sizes larger than I wish I were, but it’s flattering and appropriate and most importantly not a dress I bought in a giggly pregnant shopping spree, and it was on sale. It is also red. I thought a splash of color would be festive.

 

Postpartum Body April 23, 2012

Filed under: Uncategorized — elegyforamy @ 4:49 pm

None of my clothes fit. I feel like I am living in someone else’s body. I am uncomfortable. This seems like a silly thing to complain about, all things considered, but there it is. Just because we don’t have a living baby to show for it, doesn’t change the biology of being pregnant for six months and birthing a child. My belly is larger than before. That may come off, but I can’t exercise in earnest for another three weeks. My bra size went from a 34A before getting pregnant to a 36D now. I don’t recognize myself in the mirror, and even my clothes that still fit, fit so differently now.

We’re going to see Les Miserables on Wednesday night. I’ve loved Les Mis since I was way too young to like Les Mis, 6 or 7 years old and singing along. My mom took me to see it in New York City for my 10th birthday – I still have the T-shirt. Actually, since they didn’t have children’s sizes, the T-shirt still fit me up until I got pregnant. Now, boobs. Oh well. After anticipating this tour coming through Atlanta for months, I almost didn’t buy tickets when they finally went on sale, because I’d be 27 weeks pregnant and tired and uncomfortable and for all I knew on bedrest. But in the end, I bought them. Paid extra for the really good seats. Bought a fancy evening maternity dress. This was going to be our last big date night out before 2 became 3.

Then, in the hospital, when I still thought things were going to be okay, I was sad that we’d miss Les Mis. And of course, I feel a bit like an ass now for being sad about something so silly, considering. But I didn’t know. And now that I am not going to be pregnant on April 25th, I’m glad I don’t have to sit at home thinking about how I didn’t buy tickets because I thought I’d be too pregnant to enjoy it. But it’s still a bit tinged with sadness, this crazy pregnant night out I planned.

So obviously I don’t want to wear the fancy maternity dress I bought, even though I bought this dress partly because I knew I could wear it even after I wasn’t pregnant anymore especially if my bra size stayed the same. All my other dresses are for A cups. Maybe B. They don’t fit. And I don’t want to go shopping for a nice dress, in my uncomfortable, harsh reminder of a postpartum body. The one that says, you had a baby, and all you got were new bras.

I’ve got 48 hours to figure something out.

 

Trying Again April 21, 2012

Filed under: Uncategorized — elegyforamy @ 2:30 am

This seems like the $64,000 question these days. Will we? Should we? When do we want to? The short version of the honest answer is who can possibly know at this point?

It feels kind of crazy to even be talking about trying again so soon in the wake of our loss. I hope that it goes without saying that we’re not trying right this second, or even this month, or next. (I heard this rumor that you have to actually be allowed to have sex to do that, anyway.) But we had a plan. A thought-out, long time in coming, plan. We wanted to start our family, have a child, and we were ready to do that. That hasn’t changed. The only thing that has is that now it’s 6 months later, we have become parents in maybe the saddest possible way, and now we’re even farther from that goal than when we started. We’re all dressed up with no place to go.  So I think it’s only natural that there is a big part of both of us that is inclined to try again, right away, as soon as the doctors say it’s okay.

And we wonder, when we’ll be ready, or if I’ll ever really be ready. And what is ready? Does ready have to be approaching pregnancy from a positive and zenlike state? Because I’m just going to guess that’s never going to happen. But if ready can be accepting that bad things happen, and good things happen, and hoping for good but knowing we can handle bad, if we have to? Then I don’t know how far away from that we really are.

And I wonder how we’ll approach a second pregnancy, publicly or privately. I think there will be a part of me that will want to keep it a secret until there is a real live baby in my arms. I’ll be staying home for months, telling people I’m just fat, lying if I have to, all to avoid the awkward conversations I’ve had to have in the last two weeks. But then there is this other part of me, that has learned from the last time. I was cautious. I was reserved in my excitement and my enthusiasm most of the time. And it didn’t stop the worst from happening, and it didn’t make me any less sad when it did. So this other part of me thinks, what’s the use in being cautious and reserved? Better to enjoy every moment, because you never know how many more moments you’re going to get to enjoy, and there’s no such thing as not getting attached when you’re talking about your child growing inside of you.

But I definitely fear the judgments. Everyone has an opinion about what you should do when they’re not the ones involved. I felt some of it even the first time around, when after years of saying I didn’t want to get pregnant I had the audacity to, over the course of several months and many long marital conversations, change my mind. I can only imagine the second time around. If we start too soon. If we don’t try again at all. If we announce too soon. If we do anything differently than someone else might have. I hate thinking about it, so I try not to, but it’s hard because people ask me, do you think you’ll try again, and then I try to answer and it feels judgy.

The doctor said she typically recommends 6 months. I don’t think that’s a physical recommendation so much as a psychological one. But here’s one thing I can promise – we aren’t trying again in 6 months. Maybe 3, or 4, or 5. 7, 8, or 9. When WE are ready, not when anyone else thinks we should. But definitely not 6. 6 months would have us getting pregnant at the same time as last year. Same due dates. Same milestones. A second pregnancy haunted by the first. Judge away, but there’s no way I’m not doing that.

 

My Womb, Deconstructed April 19, 2012

Filed under: Uncategorized — elegyforamy @ 3:56 pm

Yesterday was our two week postpartum appointment. Sort of the post-game analysis, what went wrong, what we’d do in the future, and we hope you’re not just sitting at home bawling your eyes out kind of thing. (We’re not, don’t worry.) It went… more or less as well as we could have reasonably expected.

We both really wanted to be told, hey, this is what happened, and here’s how we’re going to stop it from happening again. Case closed. We knew that was extremely unlikely. In something like 60-75% of cases of preterm labor, a cause is never identified for certain. But we do have some answers, and the answers we do have are better than expected.

There are essentially four possible known causes of preterm labor: placental abruption, infection, incompetent cervix, and simply “spontaneous preterm labor” (which is really not a cause but a catchall for “we have no fucking clue,” I think).

My clotting disorder puts me at high-risk for placental abruption, but this was the one cause they have been able to basically rule out (as much as anything can be ruled out in these cases). This is good because it means my blood thinners were doing their job and I won’t require additional anticoagulation in the future. This is bad because it means I definitely now have two high-risk conditions rather than one that caused a terrible outcome.

They think it is unlikely that I have incompetent cervix, or at the very least think it is unlikely that this was the triggering/primary issue in my case. This is very good news, as IC is the worst-case scenario for me. There are no proven treatments that actually help with this, and the two treatments that they use that “may help” (extended bedrest and cerclage, literally sewing your cervix shut) are scary options for someone with a clotting problem who is on blood thinners during pregnancy.

That leaves basically just infection and “unknown reasons.” According to the pathology report, my placenta showed evidence of “severe acute chorioamnionitis,” a fancy way of saying it was seriously but recently infected. Infection is our best-case as it means there is no reason to think this is likely to reoccur, so this is potentially promising (and tragic). The issue here is the “recently.” Because they believe my water broke 2 days prior to delivery, there is no way to know if the infection triggered labor or if I got the infection at the hospital after my water broke. I am tempted to believe it was the former because I want to believe it was the former and also because I was on 5 days of IV antibiotics at the hospital. By the time my water broke, I’d been on penicillin for more than 48 hours and that was followed with amoxicillin and erythromycin. It seems crazy that I could have developed a severe placental infection in that time, but I guess it’s possible. We will never know for sure.

What does all this mean for the future? I am actually pretty pleased with our OB’s plan all things considered. In our next pregnancy, I would get weekly p17 shots from weeks 16-36 – these are more or less the only preterm labor tool that has been clinically proven over and over to actually reduce preterm birth, extend the number of weeks a woman carries even if she doesn’t go to 37 weeks (which seems frankly greedy to us at this point, we’d take 32 in a hot second), and even improve NICU outcomes in preterm births. They would then have me come in every week I’m pregnant, and the second it looks like my cervix is shortening or doing anything untoward, I’d be put on bedrest, but not until then. I’m pretty thrilled that they don’t want to just prescribe blanket extended bedrest and would only want to put me on it as needed (though I imagine around the 22-28 week mark you’ll have a hard time convincing me I should be moving around anyway). I also think getting checked out weekly will be really helpful for my anxiety, so I’m glad that they want to do that.

Next stop is follow-up with the high-risk doctors, hopefully they share the opinion of the regular OB.