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.

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.

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.

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.

Eye meme

Niobe suggested starting a meme where we post a photo of our eyes. Interesting timing, because I was just playing around with this site, which lets you calculate the odds of your children having any particular eye color, based on the color of the parents' and grandparents' irises. What I learned is that there's no way any child of mine will have my eyes, thanks to my brown-eyed in-laws.

I guess I'm just narcissistic enough to wish that I could look into Sam's eyes and see a reflection of my own. But his are settling into a gorgeous chestnut brown ringed with blue-grey. If I had any shot at getting him to sit still, I'd post a photo, but it isn't going to happen. Sam's eyes are his own, and I should be grateful for this ever-present reminder that he isn't meant to be a reflection of either of us.

p.s. If you look closely, you can see the post-preg skin tag just below my lower eyelashes. Have you gone about having them removed? Is it painful?

Crash

I'm procrastinating on a project that's due today. Ugh, ugh. I should be hanging out with Sam, but I just didn't get this project done early in the week, so I lose my day with my baby, even though I'm home and can pop in to visit him while he plays with his babysitter.

Zev, our young kitty, was hit by a car on Monday. I got the call at work -- Adam sounding sick, waiting at the vet for more news. I raced over, steeling myself for the inevitable news, cursing our decision to let him go outside. "He might die from this," the vet said when I got there, "but I don't think he will." That was the first moment of hope. The xray showed blood in his lungs and a broken jaw and he was in shock and in pain. There was nothing we could do by waiting there, so I drove back to work, feeling the horrible sensation of not being in the place where I should be -- Sam with a babysitter, Zev in an exam room, and me dropping the balls I had been juggling so furiously since I went back to work.

Zev's breathing slowly improved as the day went on and they let us take our battered little kitty home with us, just for the night, so that we wouldn't have to transfer him to the hospital. Up every two hours to check on him, I listened to his breathing and tried to curl up on the bathroom floor, but he just turned away, doped up on painkillers and so far removed. "He's here, but he's not here," Adam said.

The next day, he went back to the vet for more IV therapy and antibiotics, and the vet said the next hurdle was getting him to eat. That took another 24 hours, but he did eat with the help of an appetite stimulant (I meant to ask if it was some sort of marijuana extract so that, when he was feeling better, we could joke about the munchies). And then Zev started hissing at the vet techs when they came around, and then he started wailing for more food, and that's when we all decided that our kitty was coming back to us.

And now he's curled up on the bed here next to me, and everything is right again, my family is in one piece, and I can breathe.

Working girl

I'm feeling a lot of angst about working lately. Specifically about how much time I'm missing with Sam in order to work. I have such inappropriate timing, musing about my conflicted feelings when so many people are losing their jobs all around us. But the angst remains, not helped by a recent logistical nightmare of Sam's first ear infection paired with my nasty chest cold, followed by Sam's stomach virus which has since felled me and Adam. We're both here in bed, feeling too disgusting to comfort each other. Adam is about 10 hours ahead of me, which means I can expect a violent bout of diahrrea any moment now. Sam is all recovered and spending the day at the nanny share, where the other family is hosting.

In the middle of the night, while Sam was refusing to sleep and Adam was retching and I was starting to feel those first twinges of nausea, I thought, "Oh my God, wait...who takes care of the baby when the grownups are passed out around the toilet? What the fu--oh, I'll call Mom! Wait. I can't bring Mom into this cesspool. She'll get sick. Ok, we'll hire a babysi-- no one's going to work for us in this condition. Oh my God. No one can help us. We're all alone and we'll pass out from dehydration and Sam will fall out of his crib!"

I have missed a lot of work lately and it's stressful. We have this great little setup with our jobs, me working a 4-day week, Adam working mostly from home, the nanny share (more on that soon).

And even then, it's tough. As soon as someone gets sick, the whole thing falls apart. But it's not just that, of course. I feel like I'm finally relaxing into motherhood. Sam is so incredibly interesting now. [EDITED TO ADD: That makes it sounds like he was boring before. He wasn't. It's just that the back-and-forth of our play now is incredible). He's like that moment in spring when so many flowers and plants start bursting open that you can't even keep track. He can express his pleasure in my company, and his anxiety when I leave. I savor my time with him, instead of fearing it like I did in the early days. It's funny -- in some ways, having to go back to work at 13 weeks seemed inhumane, but I think it also helped stabilize me. Helped me make this transition more gradually. And, hot-house flower that I am, I do much better with gradual transitions.

But now, I feel like I want to give it up. There's a rightness to being physically near Sam all the time. Most of the time. Sometimes, I'll be laughing with my friends at work, and I'll think, "Oh, no, this is perfect. This is the balance I need. This makes me a better mother." Or I'll be working on a project and think, "I need to use my brain like this. I need my career." But then, I'll be nursing Sam and looking down at his little cheeks and eyes and I can't believe I'm so stupid as to go away from him for the major chunk of the waking hours.

You know, I should stop here before I go further to offer my personal feeling about the to-work-or-not-to-work mommy wars: We have no more business commenting on another woman's decision to keep a job or not than we do commenting on her field of interest, or college major, or favorite flavor of ice cream. There's no way to do that math for someone else.

Now back to my own personal calculus. I should also say that I muse here, setting aside the practical concerns. Like money. Actually, we have an affordable mortgage. We could get by if I quit. But it would put a lot of pressure on Adam. And what if he lost his work?

I see other downsides:

1) I like being an equal parent with Adam. I'm a little dominant because I have those Fridays at home, and I'm nursing and Sam is going through more of a Mommy phase. But I like that we're generally on even footing. When I was on maternity leave, it felt at times like I was the parent and Adam was flitting in and out, and that wasn't great for our relationship.
2) The work I do is very freelance-friendly, but that's when there's an actual demand. Which there isn't right now. A lot of recently laid-off people are trying to freelance at a time when there are fewer and fewer jobs. This is not a good time to try to transition to self-employment.
3) I have a tendency to lose myself too easily. If I wasn't forced to get out of the house every day and keep that non-mom part of myself alive, I might not do as well.
4) I despise the idea of being financially dependent on Adam. As it stands, he makes more money than me, but it matters to me that I'm contributing to the common fund, that I'm saving for my retirement, that I can earn my own money to treat myself now and then.
5) I really trust and love our nanny, Claire. She expresses an affection and concern for Sam that would be nearly impossible to fake. I like the way he lights up when he sees her, and in my optimistic moments I think that Sam is learning the wonderful lesson that he can get love and protection from many people in his life. I fear losing Claire if we slashed her hours. I also feel a responsibility for providing her with the employment we promised (she asked for a year's commitment).
6) I have a job that can be seriously fun. One of those, "You really get paid to XYZ?" jobs. It has its downsides, but I'd be an ungrateful bozo to not acknowledge that a lot of people would kill for this position and it's not one that's easily replaced. It might not be replaceable, in fact. It's not to be given up lightly. It's basically the dream job I set out to have.

But then I think about something my friend said last week. "The thing is, you have a new dream job. You have Sam. Dream jobs change."

I'm not ready to make a decision. But then, you can take your time, waiting for "the truth to emerge" or "the answer to be revealed" and suddenly your baby is a year old and you've made a call without really making it.

Absence makes the heart

Sam is showing new signs of stranger anxiety. It passes relatively quickly, but, for the first time, he's doing all the "I want Mama!" behaviors.

Is it screwy that I find this so gratifying, being needed so intensely? While simultaneously worrying that he'll be plagued by the separation anxiety that I'm told I had as a toddler...

Something fishy

I mentioned a few posts ago that in November, I had a run-in with something that felt all too much like post-partum depression. The sudden onset made it seem like a physical event, one compounded by stress and the waning daylight. When the waves hit, I felt like I was looking through a window at a happy life---baby, good marriage, good job---and wholly disconnected from it all. The P&L sheet of my life seemed heavy on losses; any gains felt insubstantial. And then the guilt! of feeling so ungrateful, when I'd finally gotten what I wanted!

So we went on a vacation, and that helped a lot, and it eased my fear that I was on some kind of downward spiral. And then, when we got back, I stumbled across Moxie talking about fish oil as the miracle supplement for new moms---the theory being that your brain gets depleted as the fetus/baby basically sucks the fatty acids from your brain---and remembering an old bottle in the medicine cabinet, I popped a few.

Oh.my.god. They worked. They really worked! I just felt like...myself. More even and relaxed and sane. So I looked around at research exploring the relationship between EPA (fatty acids) and mood. Adam's uncle, a psychiatrist, told me that he recommends fish oil to all his patients, and takes 4000mg himself (I take 3600).

Why hadn't I heard this before? Could I have lessened the post-miscarriage crash if I had known about this then? All the therapy sessions, making meaning of the grief, fear, and pain -- it wasn't worthless. Spiritual growth and all that. But could I have skirted the worst of it?

Eh. No point dwelling. The point is that I've gone down another step on the Celexa without any problems. I hope the trend continues.

Erasure

The holidays were good, but so busy. For some reason, we agreed to travel three times -- first to my parents' house, which is less than 2 hours away. Then down South to visit Adam's family -- a three-hour flight. Then home for two days, followed by another trip to my parents' to celebrate the New Year with my sister and her family. By the middle of the second trip, I was cranky. By the third, I was resentful -- of my family, even of Sam.

Sometimes, especially when I'm tired, it seems so much easier to meet the relentlessness of motherhood by just erasing myself. It's so much simpler and more efficient -- not juggling, just giving in. No real decisions to be made or priorities to be weighed, just a quick response to the most immediate in-my-face demands. Throw my job in the mix and it's easy to spend all my time merely reacting. And there is something oddly satisfying about being self-less. You don't realize what a burden it is to be a full human being until you get a break from it. But then the burnout sets in. Then I remember that martyrdom isn't much of a strategy. Damn.

Sam has picked up some really cool tricks lately. He can transfer Cheerios and Puffs to his toothless mouth. It's an inexact process, leaving him with three or four puffs stuck to his drooly chin before he gets one in the goal. But he is so proud of it, and I'm even cocky enough to think that we might be able to go out for Chinese and both eat food at the same time.

He also likes to clap, sort of. He slaps his hand down on my hand, making a nice thwack sound. Doesn't do it with his own two hands yet. I think the payoff isn't big enough, since baby hands don't make much noise. We're all about efficiency these days.