The spring was really hard. After mostly avoiding the emotional burden of jealousy and bitterness until then---a bit of grace I was really grateful for at the time---the ugly twins finally caught up with me. Some friends had babies, others became pregnant. It was a kick in the stomach every time. More like a knee in the gut. And it was double the burden for the way it then made me feel guilty for being bitter, the way it isolated me from people I genuinely care about, and how obvious it was to me that they pitied me on some level, or at least felt awkward around me in light of their good fortune, and how that made me hate them. There is simply no winning in these situations.
The summer got better. My beloved cat died, which was horrible. But the grief for Eva let up a little. Once we had time to recover from losing the cat, the first "baby" that we ever had, we were wrapped up in moving from one house to a temporary apartment and then another house that we've been renovating. We were a little band of travelers together, sharing a bedroom for a few weeks, and the closeness was soothing. As the deep grief and bitterness lifted, I began to have glimpses of how you come to accept something as awful as birthing and holding your dead daughter. You don't condone it, you don't want it, you'll never totally accept it, but you stop feeling like you can't really live the life you're in. You stop feeling that you're in the wrong life. You realize that this is the life you have and there are some good things about it. Things to embrace.
So that's where I've been spending more of my time. But I write now because we're coming up on the one year anniversary. One year ago today, I had a bad ultrasound that indicated that Eva was gravely anemic. That the bizarre Kell isoimmunization issue that we had discussed at every appointment might actually amount to something very serious and in need of immediate treatment in the form of a fetal transfusion. Over the next days, it just got worse. The treatment that would've worked if she had been just 3 weeks older before getting sick couldn't help. I keep thinking of that line from Elizabeth McCracken's An Exact Replica of a Figment of My Imagination. I don't have it here with me. She's talking about the day she felt something was wrong with her pregnancy---the baby wasn't moving. In her case, this was at full term. She describes the vague concern followed by the nagging worry, the consultation with the midwife, the reassurance. "And then," she says...and I forget what the next word was. Catastrophe? Calamity? But she gave words to the moment between the old life and the new life, the pause before you plunge into an abyss.
I see that this is how the story turned out for us. What a horrible fucking thing. What a fucking travesty that my daughter died.
I don't know what happens next. We were too wrecked all year to decide what the next move was. We're starting to talk now. I'm old now...40. How unfair that we had the two miscarriages...lost all those years between when we first started trying at 35 and now. And yet we have Sam. How lucky is that? And how lucky are all the other good things? And yet Eva is still dead and trying to be grateful can sometimes get me ping-ponging between peace and self-pity and shame and anger.
Wednesday, September 28, 2011
Saturday, February 26, 2011
Update
Well, I left this blog on an ominous note and I feel inclined to note that I haven't fallen off the planet, at least.
What has happened since we lost Eva and today is mostly a lot of daily life. We didn't fall apart as much as circumstances might have allowed. In fact, in the early days, I was flooded with this very odd, very deep sense of gratitude for Sam in particular, but for all the other good things in my life. I feel that there's this trick that happens immediately after some losses. Maybe it's grace, maybe it's a neurological response, maybe it's both. But something cushions the blow in the beginning, if you're lucky. Even when you're on your knees sobbing and saying, "I can't do this," there is a moment soon afterward where you think, "We'll be okay." I think it's much harder after the initial crisis when you realize that the shitty thing is still there, only without everyone rallying around you. And the shitty thing shall remain evermore, get used to it.
I now understand what Joan Didion said about magical thinking. I've had so many moments, particularly when visiting the hospital where we were during the pregnancy, where I've had the half-conscious thought that maybe Eva didn't really die or that maybe this new doctor will be able to make things turn out differently. It's hard to even articulate because it's so nonsensical. It evaporates when brought up to the level of words.
Now the grief hits in occasional storms. Not waves, but storms. More storms lately because my due date is this week. When I'm in the storm, I absolutely can not see out of it. I feel desperate. Clawing, screaming, pounding desperate (I save it for when I'm in the car alone. Parked). In those moments, I feel that I am ruined, that Adam and I are ruined, that I must have another child right now because that is the only way I'll ever heal from this. Or, I'll feel that we can never take such a terrifying risk because surely that will destroy whatever good is left. And now we're even more ruined because I'll never stop longing for another child and never stop feeling jealous of every family with more than one and oh my God it is exhausting to be like this. God bless my parents who have gotten two such phone calls from me in recent months. Thank God they're still here to talk me down from the tree. I feel irrational rage toward Adam in these times and I'm glad I at least have the sense to shield him from it.
And when the storms pass, they're just gone. Most days I can feel quite happy. There is a shadow over things maybe. I can see it if I look for it. But most of the time it doesn't distract me.
If we want to have another child, if we want to take that risk, we have three options: use a sperm donor who is Kell negative, do IVF with PGD, or adopt. I suppose we could throw a non-Kell-sensitized surrogate into that mix, but it's not going to happen. I have no idea if we'll try any of them. Adam is so very wary (part of the reason for my rage during the storms). And when I'm not feeling desperate, I tend to agree with him. We got this one beautiful, perfect (within the range of human imperfection) child. We're lucky in many ways and happy on most days. Let's just be grateful for what we have and move on. Think of all the easy traveling we can do! A cozy family of three.
And yet...I think about my life ten, twenty years from now and will I be at peace with it then? Do I want Sam to live his life without a sibling? No answers yet.
What has happened since we lost Eva and today is mostly a lot of daily life. We didn't fall apart as much as circumstances might have allowed. In fact, in the early days, I was flooded with this very odd, very deep sense of gratitude for Sam in particular, but for all the other good things in my life. I feel that there's this trick that happens immediately after some losses. Maybe it's grace, maybe it's a neurological response, maybe it's both. But something cushions the blow in the beginning, if you're lucky. Even when you're on your knees sobbing and saying, "I can't do this," there is a moment soon afterward where you think, "We'll be okay." I think it's much harder after the initial crisis when you realize that the shitty thing is still there, only without everyone rallying around you. And the shitty thing shall remain evermore, get used to it.
I now understand what Joan Didion said about magical thinking. I've had so many moments, particularly when visiting the hospital where we were during the pregnancy, where I've had the half-conscious thought that maybe Eva didn't really die or that maybe this new doctor will be able to make things turn out differently. It's hard to even articulate because it's so nonsensical. It evaporates when brought up to the level of words.
Now the grief hits in occasional storms. Not waves, but storms. More storms lately because my due date is this week. When I'm in the storm, I absolutely can not see out of it. I feel desperate. Clawing, screaming, pounding desperate (I save it for when I'm in the car alone. Parked). In those moments, I feel that I am ruined, that Adam and I are ruined, that I must have another child right now because that is the only way I'll ever heal from this. Or, I'll feel that we can never take such a terrifying risk because surely that will destroy whatever good is left. And now we're even more ruined because I'll never stop longing for another child and never stop feeling jealous of every family with more than one and oh my God it is exhausting to be like this. God bless my parents who have gotten two such phone calls from me in recent months. Thank God they're still here to talk me down from the tree. I feel irrational rage toward Adam in these times and I'm glad I at least have the sense to shield him from it.
And when the storms pass, they're just gone. Most days I can feel quite happy. There is a shadow over things maybe. I can see it if I look for it. But most of the time it doesn't distract me.
If we want to have another child, if we want to take that risk, we have three options: use a sperm donor who is Kell negative, do IVF with PGD, or adopt. I suppose we could throw a non-Kell-sensitized surrogate into that mix, but it's not going to happen. I have no idea if we'll try any of them. Adam is so very wary (part of the reason for my rage during the storms). And when I'm not feeling desperate, I tend to agree with him. We got this one beautiful, perfect (within the range of human imperfection) child. We're lucky in many ways and happy on most days. Let's just be grateful for what we have and move on. Think of all the easy traveling we can do! A cozy family of three.
And yet...I think about my life ten, twenty years from now and will I be at peace with it then? Do I want Sam to live his life without a sibling? No answers yet.
Monday, October 25, 2010
And again
We have had two years of such happiness. Overall, I mean. There was a cancer scare last spring---a benign tumor on a fallopian tube that looked a little scary in the ultrasounds. And stuff. Just regular life stuff that was challenging. But we have had so much happiness. We have Sam. And last spring we decided that yes, we both wanted to try again because of the love, and for Sam to have a sibling, and wanting to experience the baby thing one more time. Mostly because of the love. And so we started trying to get pregnant in May and got pregnant in May and despite my old age it all happened so easily for us. And then our doctor told us that looking over my charts and all the latest research, he didn't even think I needed to take Lovenox this pregnancy. No more shots, just a little baby aspirin to be safe. For the first time in four years, my IgM antibody levels were down to normal range. And so here was the easy pregnancy, for once. I think it did feel like a reward.
And now that baby is gone at 18.5 weeks. Her name was Eva. You think that once you've been through the forest, you know the most fearsome creatures that dwell there, but there can be other monsters you didn't even imagine. For us, that was the Kell antibodies that we'd never heard of, mostly likely created when I gave birth to Sam and our blood mixed in some quantity. Sam had inherited his dad's genes, which were different from mine. He had a little protein on his blood cells that was different from the little protein on mine. And when my body sensed his foreign blood, it went on alert, producing antibodies to his type. He was safe, as he was already delivered. But Eva had Adam's genes, too. And my body had been primed to seek out her blood type. Search and destroy.
There wasn't a thing wrong with her, except that she was trying to grow in the wrong body.
By 18 weeks, when they began to look for signs of a problem, she was already so sick. A sick, tiny baby, too small to save. It doesn't usually happen like this. Usually the baby doesn't get so sick so soon. Usually it happens later, if it happens at all. And then there are treatments—transfusions, namely—that work in the vast majority of cases. Ninety, ninety-five percent of these pregnancies end with a healthy baby at home. But at every turn of our story, the bad thing happened. What could've gone wrong went wrong.
I think this latest tragedy probably puts this blog into radioactive territory. After my second miscarriage, I went to a support group for the unfortunate minority grieving miscarriage, stillbirth, neonatal loss. The stories I heard there were terrifying. Instead of comfort, I found new outcomes to fear. I drove home panicked.
Maybe that's how our story reads now, too. But I know we don't even have it that bad. It can always be so much worse. We have Sam. What more does the universe owe us? We get to be parents. Every day, he pulls us back into life.
And yet Eva is gone. My baby. I delivered her still, tiny body three weeks ago. We held her. Our daughter is dead. How do we live with that sentence?
And now that baby is gone at 18.5 weeks. Her name was Eva. You think that once you've been through the forest, you know the most fearsome creatures that dwell there, but there can be other monsters you didn't even imagine. For us, that was the Kell antibodies that we'd never heard of, mostly likely created when I gave birth to Sam and our blood mixed in some quantity. Sam had inherited his dad's genes, which were different from mine. He had a little protein on his blood cells that was different from the little protein on mine. And when my body sensed his foreign blood, it went on alert, producing antibodies to his type. He was safe, as he was already delivered. But Eva had Adam's genes, too. And my body had been primed to seek out her blood type. Search and destroy.
There wasn't a thing wrong with her, except that she was trying to grow in the wrong body.
By 18 weeks, when they began to look for signs of a problem, she was already so sick. A sick, tiny baby, too small to save. It doesn't usually happen like this. Usually the baby doesn't get so sick so soon. Usually it happens later, if it happens at all. And then there are treatments—transfusions, namely—that work in the vast majority of cases. Ninety, ninety-five percent of these pregnancies end with a healthy baby at home. But at every turn of our story, the bad thing happened. What could've gone wrong went wrong.
I think this latest tragedy probably puts this blog into radioactive territory. After my second miscarriage, I went to a support group for the unfortunate minority grieving miscarriage, stillbirth, neonatal loss. The stories I heard there were terrifying. Instead of comfort, I found new outcomes to fear. I drove home panicked.
Maybe that's how our story reads now, too. But I know we don't even have it that bad. It can always be so much worse. We have Sam. What more does the universe owe us? We get to be parents. Every day, he pulls us back into life.
And yet Eva is gone. My baby. I delivered her still, tiny body three weeks ago. We held her. Our daughter is dead. How do we live with that sentence?
Sunday, June 7, 2009
Revisiting the diagnosis
Two years ago, when I was living on the Left Coast and first got the news that I sort-of had antiphopholipid syndrome (I'll explain that in a sec), my reproductive endocrinologist told me that, while she didn't expect me to exhibit any symptoms of APS outside of my tendency to miscarry, I should have annual blood checks to make sure my antibody levels didn't go through the roof. Also, I should make make sure I wasn't developing any of the antibodies associated with lupus, which sometimes exists concurrently with APS (though the relationship isn't thought to be causal).
So that was two years ago, and last year I was busy having Sam (yay!) and didn't get checked. But I went back a few weeks ago to meet with a rheumatologist here in my East Coast city.
If there's one thing your doctor likes to tell you when you show up with an autoimmune disease, it's that "there's still so much that we don't know." Here's a summary of what I've learned so far:
1) To get a diagnosis of APS, you have to meet both clinical and laboratory criteria. Clinical criteria include venous or arterial thrombosis and/or pregnancy losses (specifically, one or more miscarriages after 10th week of gestation, three or more miscarriages before 10th week of gestation, or one or more premature births before 34th week of gestation due eclampsia). To meet lab criteria, you have to test positive for anticardiolipin or lupus anticoagulant antibodies on 2 occasions of some weeks apart (6 to 12 weeks, depending on which antibodies they're looking for).
2) My particular problem antibody is of the anticardiolipin sort -- specifically, IgM (Immunoglobulin M). IgM and IgG antibodies are measured in the following way: fewer than 12 units = normal; 12 to 20 units= borderline; 20 to 80 units=moderate; more than 80 units=severe. My understanding is that lupus anticoagulant antibodies are a binary thing: either you have them, or you don't.
3) APS (also called Hughes Syndrome) can be quite a serious disease in some people, but there's a current line of thinking that there may be a population of women whose only symptoms are pregnancy-related. That is, they don't appear to be in danger of pulmonary embolism or thrombosis outside of pregnancy.
I've now had my IgM antibodies measured four times. After the miscarriages, they came in at 21.2 and 21.6, measured 7 weeks apart. During my pregnancy with Sam, while I was taking Lovenox, they were at 16. At my most recent visit, they were 19. It looks like I have a "mild" case. I've "only" had 2 miscarriages. No clots.
So...my docs on the left coast felt that while I was a borderline case, they should still treat me as if I definitely had APS. And so I went on Lovenox as soon as I knew I was pregnant with Sam. And it worked.
But the rheumatolgist here, who doesn't specialize in APS or miscarriage, wasn't as convinced. "Your levels are so low," she said. "Who knows if those first two miscarriages were just a matter of bad luck? And it's not like there aren't risks to being on blood thinners. I'm not sure if I'd even want you to be on Lovenox if you get pregnant again."
But, of course, if I get pregnant again (something Adam and I are discussing only in vague terms, with no final answer), I'll get right back on my vitamin L. Maybe it was just a matter of luck that this pregnancy worked. Maybe my ovaries are shaped like little roulette wheels. But I'm pretty convinced the drugs saved Sam's life, and in the matter of reproductive endocrinologist v. rheumatologist, I'm going to listen to the people with the better track record of bringing healthy babies into the world.
So that was two years ago, and last year I was busy having Sam (yay!) and didn't get checked. But I went back a few weeks ago to meet with a rheumatologist here in my East Coast city.
If there's one thing your doctor likes to tell you when you show up with an autoimmune disease, it's that "there's still so much that we don't know." Here's a summary of what I've learned so far:
1) To get a diagnosis of APS, you have to meet both clinical and laboratory criteria. Clinical criteria include venous or arterial thrombosis and/or pregnancy losses (specifically, one or more miscarriages after 10th week of gestation, three or more miscarriages before 10th week of gestation, or one or more premature births before 34th week of gestation due eclampsia). To meet lab criteria, you have to test positive for anticardiolipin or lupus anticoagulant antibodies on 2 occasions of some weeks apart (6 to 12 weeks, depending on which antibodies they're looking for).
2) My particular problem antibody is of the anticardiolipin sort -- specifically, IgM (Immunoglobulin M). IgM and IgG antibodies are measured in the following way: fewer than 12 units = normal; 12 to 20 units= borderline; 20 to 80 units=moderate; more than 80 units=severe. My understanding is that lupus anticoagulant antibodies are a binary thing: either you have them, or you don't.
3) APS (also called Hughes Syndrome) can be quite a serious disease in some people, but there's a current line of thinking that there may be a population of women whose only symptoms are pregnancy-related. That is, they don't appear to be in danger of pulmonary embolism or thrombosis outside of pregnancy.
I've now had my IgM antibodies measured four times. After the miscarriages, they came in at 21.2 and 21.6, measured 7 weeks apart. During my pregnancy with Sam, while I was taking Lovenox, they were at 16. At my most recent visit, they were 19. It looks like I have a "mild" case. I've "only" had 2 miscarriages. No clots.
So...my docs on the left coast felt that while I was a borderline case, they should still treat me as if I definitely had APS. And so I went on Lovenox as soon as I knew I was pregnant with Sam. And it worked.
But the rheumatolgist here, who doesn't specialize in APS or miscarriage, wasn't as convinced. "Your levels are so low," she said. "Who knows if those first two miscarriages were just a matter of bad luck? And it's not like there aren't risks to being on blood thinners. I'm not sure if I'd even want you to be on Lovenox if you get pregnant again."
But, of course, if I get pregnant again (something Adam and I are discussing only in vague terms, with no final answer), I'll get right back on my vitamin L. Maybe it was just a matter of luck that this pregnancy worked. Maybe my ovaries are shaped like little roulette wheels. But I'm pretty convinced the drugs saved Sam's life, and in the matter of reproductive endocrinologist v. rheumatologist, I'm going to listen to the people with the better track record of bringing healthy babies into the world.
Tuesday, March 17, 2009
And on
Still feeling strange an vulnerable. Obsessing about Jade Goody and Natasha Richardson, being overprotective of Sam. At some point, I'll be able to remember that most people live for decades and I don't need to be on alert. But not now.
Pulling me back into the present, Sam seems to have learned his first word: Duck. Rather, "guck." It is incredible. "Guck, guck, guck," he was saying as I stood at the bathroom mirror. I looked down and saw that he was talking to the little rubber duck on the edge of the bathrub. "Guck-guck-guck-guck." "Yes!" I said. "Guck," he said.
Pulling me back into the present, Sam seems to have learned his first word: Duck. Rather, "guck." It is incredible. "Guck, guck, guck," he was saying as I stood at the bathroom mirror. I looked down and saw that he was talking to the little rubber duck on the edge of the bathrub. "Guck-guck-guck-guck." "Yes!" I said. "Guck," he said.
Sunday, March 15, 2009
Anniversary Waltz
Adam left for a business trip this morning. It's a short one—he'll be back Tuesday. But in the days leading up to his departure, I've been feeling so anxious about it—enough that I was thinking about all those stories you hear when the wife says she has a bad feeling about a trip and then the husband stays home and the plane he was supposed to be on crashes.
But it wasn't just the flight. I was worried about being left solo to care for Sam, which didn't make sense because Adam travels at least once a month and I've found that I really enjoy the special one-on-one time.
And why were my thoughts turning to people dying, people who've died, and worst of all, children who died? Why was I perusing so many of those blogs this past week?
I was just downstairs mulling all of this grim business, wondering what was wrong with me, when I finally realized what it was. March 15. My due date for the first baby. Our first baby who would've been two today.
How quickly the conscious mind pretends to forget, and how the body always remembers.
We would've been thrown a second birthday party for you, little one. Everyone would've come and I would've made you a cake and we would've been so happy. I am so sad that you're not here. I'm so happy to have little Sam, but I'm so sad you're not here.
But it wasn't just the flight. I was worried about being left solo to care for Sam, which didn't make sense because Adam travels at least once a month and I've found that I really enjoy the special one-on-one time.
And why were my thoughts turning to people dying, people who've died, and worst of all, children who died? Why was I perusing so many of those blogs this past week?
I was just downstairs mulling all of this grim business, wondering what was wrong with me, when I finally realized what it was. March 15. My due date for the first baby. Our first baby who would've been two today.
How quickly the conscious mind pretends to forget, and how the body always remembers.
We would've been thrown a second birthday party for you, little one. Everyone would've come and I would've made you a cake and we would've been so happy. I am so sad that you're not here. I'm so happy to have little Sam, but I'm so sad you're not here.
Thursday, March 12, 2009
Catch and release
Sam is going through a Mommy phase. He just needs a lot of contact. He has this little game that I call "hug and look around," where he stands up, facing me, squeezes me tight, then pivots around to take in the world around him, then squeezes again. I love it. Love, love it. And it is such a pleasure to be needed like that and to be able to reassure him.
Only...his phase corresponds to the busiest month of work I've had in...years. Certainly in his short life. The volume of work is insane. And I just feel so miserable about all the time I'm spending away from him. Every day, I want to quit.
How can we be almost 40 years beyond the second wave of feminism and have so little to show for it?
My employers aren't cruel or unreasonable. They let me work from home one day a week. They do what they can to spare me the late nights that everyone else is putting in. I have no complaints about them, really. It's just that the nature of the job is incompatible with motherhood.
Blah, blah, blah. It's just a tough situation right now. I miss my baby. My body feels torn in half when I'm gone so much. We went through a lot to have him and I'm tired of feeling like I'm missing everything.
Meanwhile, I finally got around to making an appointment with a rheumatologist. Back when I was diagnosed with antiphopholipid syndrome, my doctor suggested I go in for annual blood draws to assess my anticardiolipin antibody levels. I'm a little overdue.
As far as antiphospholipid syndrome (APS) goes, I'm lucky, if you can set aside the two dead babies, which, of course, you can't. My antibody levels were reasonably low, even at their highest, and they were even lower when they last checked early in my pregnancy with Sam. Barely made it into the "disease" range. It appears to be something that only acts up during pregnancy for me, and Lovenox was my magic bullet on that front.
So I think I'm pretty healthy now. But there's always some concern once you've wandered into the world of autoimmune disease. Sometimes APS is a precurser to Lupus. That's scary. But my doc said I didn't fit the profile, so other than a few weeks when I felt particularly achy after Sam was born, I haven't worried about it.
But it'll be good to get checked out and know whether things are trending in a good direction.
Only...his phase corresponds to the busiest month of work I've had in...years. Certainly in his short life. The volume of work is insane. And I just feel so miserable about all the time I'm spending away from him. Every day, I want to quit.
How can we be almost 40 years beyond the second wave of feminism and have so little to show for it?
My employers aren't cruel or unreasonable. They let me work from home one day a week. They do what they can to spare me the late nights that everyone else is putting in. I have no complaints about them, really. It's just that the nature of the job is incompatible with motherhood.
Blah, blah, blah. It's just a tough situation right now. I miss my baby. My body feels torn in half when I'm gone so much. We went through a lot to have him and I'm tired of feeling like I'm missing everything.
Meanwhile, I finally got around to making an appointment with a rheumatologist. Back when I was diagnosed with antiphopholipid syndrome, my doctor suggested I go in for annual blood draws to assess my anticardiolipin antibody levels. I'm a little overdue.
As far as antiphospholipid syndrome (APS) goes, I'm lucky, if you can set aside the two dead babies, which, of course, you can't. My antibody levels were reasonably low, even at their highest, and they were even lower when they last checked early in my pregnancy with Sam. Barely made it into the "disease" range. It appears to be something that only acts up during pregnancy for me, and Lovenox was my magic bullet on that front.
So I think I'm pretty healthy now. But there's always some concern once you've wandered into the world of autoimmune disease. Sometimes APS is a precurser to Lupus. That's scary. But my doc said I didn't fit the profile, so other than a few weeks when I felt particularly achy after Sam was born, I haven't worried about it.
But it'll be good to get checked out and know whether things are trending in a good direction.
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