Tuesday, January 31, 2006

On with the story...

I originally started out to tell you all about Linus' birth, but I got sidetracked by this story of my first pregnancy. In case it wasn't clear, that was the worst time of my life. I sincerely hope it never gets topped. There's a little bit more in-between detail I should let you in on, before I get to the actual birthing-Linus part.

I'd made an appointment with the doctor that Fran, the midwife, had recommended before I found out that everything had gone wrong. I'd intended on ditching the awful OB, so the sonogram was supposed to be the last time I saw her. The appointment with the new doc happened to be scheduled for a week after The Procedure. Even though I wasn't pregnant anymore, I decided to keep the appointment. I needed a new doctor anyway. I arrived at my appointment with Dr. Carpenter, Maggie, and checked in at the desk. Her nurse was standing there and said cheerily, "Oh, you're here for a home birth appointment, right? How far along are you?" She looked at me with an expectant smile. I shot a look around at all the receptionists, and people in the waiting room, then back at her, and said quietly, "I'm not. Pregnant, I mean. Anymore." She looked so stricken that I immediately liked her. She'd obviously realized her mistake, asking me a question like that in front of everyone. It's just the kind of dumbass thing I'd do, stepping right in it. She took me back to the exam room and apologized. She asked what had happened and I gave her the bare outline. She wrote everything down and left me to wait for Maggie. I was trying as hard as I could to not to cry, but I knew I wasn't going to last long. Maggie came in, looked at me with much concern and said, "What happened?" I said, "I'm not going to make it through this story without crying," and burst into tears. She handed me a tissue, put her hand on my arm, and told me to take my time. See, as bad as the other doctors were, Maggie was good. Not just compassionate, but smart. She listened to my story, becoming outraged at all the right parts. At the end, I asked her if I could see her for my follow-up appointment in a couple of weeks. I told her that I just couldn't go back to Dr. Jerk. She said, "Of course, I don't blame you!"

I went back for my follow-up and she said that everything looked fine. She said that I could go ahead and try to get pregnant again anytime, we didn't have to wait. I told her that I didn't know if we were going to try again. I just couldn't face the possibility of going through anything like what I'd been through again. She pointed out that we needn't worry, the chances of something like that happening again were extremely small. I knew that. I knew the odds. But, anyone who's been through anything like our experience knows that that's small comfort. See, the chances of something like that happening in the first place were very small, but it did happen, so the fact that the chances of it happening again are small means nothing. Besides, maybe there's something about me, or Orion, something not found on standard tests, that makes it more likely that things would go wrong again. Maybe things would go wrong like that every time. Anyone who's been through anything traumatic can tell you that it changes the way you view the world. How you perceive your vulnerabilities, your chances of coming out unscathed. Long odds seem much shorter when you know how painful it can be.

Anyway. I got over it eventually. I saw a counselor who specializes in trauma a couple of times, but mostly it was just time. I mean, I'll never be totally over it. It's still in the not-so-far-back of my mind as we consider getting pregnant again. But, it doesn't loom quite as large as it used to. It took me about 4 months, then I was able to say, "I think I'd like to try again."

Totally played

I'll get back to the story in a bit, but I just wanted to describe this conversation Orion and I had the other day while watching one of the dozen episodes of This Old House that's on at any given time.

Me (watching Norm and a couple of other guys walk around the remodel site): Look at that. Every single one of those guys is wearing Dockers. Khaki Dockers. What's up with that?

Orion (completely seriously): Yeah, I don't know. That look is so played!

Hahahahaha!

Thursday, January 26, 2006

Comment away!

I just realized that I had my settings such that if you aren't a "registered user" you couldn't post a comment here. It was not my intention to be all exclusive or anything. My pants aren't that fancy. I've changed it now, so if you haven't been commenting because you aren't registered, feel free to have at it.

Wednesday, January 25, 2006

The Grieving

The grief is the big fish and I'm the little fish.
(photo by Jim Lavrakas)


Now that the anxiety about The Procedure was out of the way, all I had left was the sadness and grief. I spent so much time crying, at least hourly the first week or so. Not just crying - sobbing. Body-wracking, full-voiced, I'm-3-and-I've-skinned-my-knee sobs. I quickly became tired of all the crying, but there was no way to avoid it. It was inevitable. But, it was so exhausting and it didn't really make me feel any better. It seemed like such an inadequate response, in the face of the intensity of the grief. It seemed like my head should explode, or I should burst into flames. That would have been more like it. Anything besides this constant, impotent crying. I couldn't even tell you why, exactly, I was crying. It wasn't triggered by specific thoughts or images. I mean, yeah, there was the loss of the actual, as well as the loss of the potential. There was the physical and emotional trauma I'd been experiencing. There was also the hormone flux that intensified everything and threw it all into further disarray. But all that, all those words I just typed, weren't really it. That's what I've come up with in retrospect. At the time it was just this primal thing, raw and visceral. Like a great, gray monster that demanded hourly sacrifices. I guess the crying kept it from swallowing me.

Then there were all of the last painful details. My milk came in. I bound my breasts with an ace bandage, but they still became completely engorged. I had to lie on the couch with bags of frozen peas on my chest, but that didn't provide much relief. It just seemed like some sort of cruel joke, one last poke from the Fates. I also had to tell people. Some of this I started once we knew it had all gone to hell, but remember, I had gone on a little telling spree just before our first sonogram, so there were lots of people who had to be told. I tried to delegate as much as possible. Orion and my mom took care of family. I asked my friend Nancy to spread the word at work as much as possible. All that was a big help, but still, weeks or months later I would run into somebody whom I hadn't talked to in awhile and I'd have to go over it all again. Not in great detail or anything, but enough so that they got the drift. And of course, it was awkward and painful. People really didn't know what to say to us other than, "I'm sorry." That was enough, actually. What else was there to say? Many people offered support, though I think many others avoided us because they didn't know what else to do. I may have done the same thing in their position. My friend Christy, however, did the exact right thing. She called me every day. We wouldn't talk long, there wasn't much to say. Often I'd cry a bit, and sometimes she'd cry with me, but just as often we'd talk about office gossip, or the weather. She was just checking in, but that was exactly what I needed. Orion was also there, of course, but he had his own grief to deal with. Fortunately for us, this whole experience pulled us together, rather than pushing us apart. I'm grateful for that.

It was amazing to me how many people came to us in support with similar stories of their own. We got a card in the mail from our pharmacist expressing sympathy and telling us about his wife's difficulty conceiving. Apparently Orion had told him a little when he went to fill my prescription for the sleeping pill when he was concerned that I not take it while pregnant. I found his note touching. I had no idea how many people I knew had gone through single or multiple miscarriages, or IVF, or had children born with some kind of serious condition. People keep that kind of information pretty close, I guess, though once they heard what we'd gone through they would share openly. Not that I'd wish anything like this on anyone, but it was good to know that we weren't the only ones.

Eventually, I was only crying every couple of hours, and then only a couple of times a day. It was months, however, before I went an entire day without crying at least once. The sadness would come over me without warning and I'd have to stop what I was doing for a few minutes and succumb. Fortunately, my desk at work was in a secluded corner, so I could weep quietly for awhile, and no one was the wiser, I think. I'd still occasionally run into people I hadn't seen in awhile, but I could let them know what happened without actually breaking down. I got an email from a colleague I hadn't seen in a couple of months and he said, "You must be tired of people putting their hands on your big belly by now!" I had to write back and let him know the score and he was so mortified, it made me laugh. Poor guy!

Well, that's the story. It took a lot longer to tell than I thought. It was also a lot more difficult. I guess the monster still lurks. I'll get back to the originally intended story next - Linus' birth. That's one that you know has a happy ending. Should be balm for the soul after this, at least for me.

Thanks for sticking around.

Tuesday, January 24, 2006

The Procedure, Part 2

I forgot to include a couple of things in yesterday's post that happened before we went to Dr. Jerk. We went back in to the perinatologist to get the preliminary results of the amnio. Nothing. Everything looked clean. No chromosomal anomalies. The genetic counselor went over the results with us. She said they were surprised, but had no reason to doubt the results. She said that, in this case, "It was just one of those things." Something went wrong somewhere, but we'd probably never know exactly what. She said that these things just happen sometimes. Nothing we could do about it. She said that some couples found this result a little comforting, because they see it as exonerating their DNA. I don't get that. I didn't find it comforting in the slightest. I would have liked to know what was wrong, have some kind of conclusion. Not knowing just left it to my mind to come with all sorts of ways it was my fault: poor nutrition, too much cold medicine, too much coffee, ambivalent feelings about being pregnant. In the deepest, darkest parts of my mind, accessible only while lying awake in the middle of the night, I was sure the last one was it.

The counselor told us that we could ask for an autopsy. She didn't think it would tell us much of anything that we didn't already know, but maybe they would find something. She said that we could tell Dr. Jerk that we wanted an autopsy and he could take care of the arrangements. We'd have to pay for it ourselves, but if we really wanted to leave no stone unturned, she would recommend it. We left with that to chew on, and her assurance that she would send us a complete report of the amnio results.

So, back to Dr. Jerk. Unfortunately, this relationship was going to be just as bad, if not worse, than the one with the OB. Why didn't I see that coming?

We went into Dr. J's office, like a real office with a desk and books, and sat down to go over our records. Blah, blah, blah, what you already know. Turns out, the OB wasn't kidding about his bad bedside manner. He was brusque, and a bit of an asshole, really. But, whatever, we weren't there to date him. He asked if I was having trouble sleeping. Yes, I was. He asked if I'd like something to help me sleep. I said yes, actually, that would be great. I was tired of lying awake every night, weeping and going over everything again, and again, and again. He added a box to a pile of pill vials he had on his desk that he was going to send home with us. Here's a fun fact - When you're at 20 weeks, The Procedure is a two day process. They start opening your cervix on the first day, both mechanically and chemically, then you go back the second day for the rest of it. He outlined for us what was going to happen, went over all the pills and what time I had to take them, then asked if we had any questions. We'd decided to at least talk to him about having an autopsy, so I brought it up. He got all pissy and extra brusque and told us that wasn't possible. I told him that the perinatologist told us to ask for it (so it was clear we weren't just talking out of our hats). This whole discussion just seemed to piss him off. We went back and forth for a while until he finally snapped, "There won't be anything left intact enough to perform an autopsy on!"

Yeah.

I think he was trying to shock us into submission or something. Just like the OB, he clearly wasn't used to patients questioning his authority. He thought he'd cow us with the harsh reality. In truth, we didn't really care all that much about having an autopsy. We knew it would be futile. I continued to argue a bit more, just on principle, but eventually we agreed to just forget it. We then went in for yet another sonogram. He was quick about it, but said, after looking around a bit, "Yep, just an empty skull." I just looked away. Seriously, at this point if I had tried to respond, I would have ended up punching him. I just wanted the whole creepy experience over. We went into the exam room, I got up in the stirrups, and he inserted a set of little seaweed sticks into my cervix. These would slowly expand overnight, opening my cervix. No anesthesia, no drugs, just, "Ready? Here we go." It was over soon, but I was gasping with how much it hurt. He said it wouldn't hurt for long and sent us home with strict instructions to call the emergency number if I started bleeding.

Worst. night. ever. I was in pain (he was such a liar), I was grieving, I didn't want to ever go back there again, but I knew I was going back. Oh, and the sleeping pills he gave me? Turns out the son-of-a-bitch gave me a sample of Lexipro. Lexipro is an antidepressant, not a sleeping aid. In fact, even if I was depressed, it takes two weeks for Lexipro to work, and he gave me a two week sample. Wtf?! I was so angry and exhausted and sick and sad.

We went back the next morning, again first into his office. I confronted him about the Lexipro. "Why did you ask if I wanted a sleep aid and then give me an antidepressant?! Do you think that I'm depressed, or that I might become depressed?!" "Well, yes, that would be the point," he said. He said that with the hormone changes following The Procedure, many women become depressed, especially given the circumstances of our situation. Then why didn't he ask me if I wanted an antidepressant?! Aaarrgghh!!

We went back into the exam room, back into the stirrups. They put in an IV so they could administer Versed. Versed is a sedative/hypnotic. It doesn't knock you out, but the idea is you aren't really aware of what is going on, and you don't remember what happened when it's over. They also put some sort of topical anesthetic on my cervix (or maybe they injected some into my cervix, I don't really remember exactly), and began. It was a horrible, horrible experience. The Versed didn't work on me the way it was advertised. I was aware of everything that was being done to me. I don't remember the exact order of events, but I remember what happened. It was all extremely painful. Something painful would happen and I would gasp and groan, then that part would be over and I would kind of drift off, then I'd be shocked by the onset of another painful act and would gasp in surprise and cry, "It hurts! It hurts!" Then that would be over and I would drift off again, and so on, on and on, for about half an hour or so (maybe longer, that's not really clear for me). Essentially, the Versed had the effect of not letting me brace myself for the painful parts, so I felt like I was being assaulted over and over again, completely out of the blue. Awful. Poor Orion was there with me, sitting by my head, holding my hand. He said later that it was all he could do not to haul off and deck Dr. Jerk every time I gasped in pain. When it was all over, the doctor asked how I was doing and I told him that it was extremely painful. He told me that he thought that the Versed had lowered my inhibitions a bit and that's why I was making so much noise during The Procedure. Fucker. If I had to do it all over again, I would have asked to be knocked out, really knocked out, completely. I know some clinics will put you under. Either that or have no sedative at all. I don't know why they would perform such a painful procedure on someone and not knock them out. They don't perform other kinds of procedures that painful without anesthetic. I can't help but think it's punitive. I'm not all women-are-great-and-men-suck, but I guarantee you that if they were performing some procedure on penises that was half as painful, they'd offer a spinal block and morphine.

After a while, the nurse came back and gave me a RhoGam shot (since Orion is O+ and I'm a negative blood type) and the biggest maxi-pad I'd ever seen to put in my pants. I got dressed and we went for one last meeting with Dr. J in his office. I was all sweaty and disheveled and felt like I was sitting on a log, with that giant pad. He gave us aftercare instructions and emphasized that I should try to remain active today, not go home and lie down. Great. I asked if he could please give me a prescription for an actual sleep aid, which he did. He at least had the sense to look contrite about it. We made an appointment for a follow-up some weeks later and left. I never went back there again.

We drove back to Lawrence and I tried not to doze in the passenger seat. It was midday by this time, and I hadn't eaten anything yet, so we decided to stop at a cafe downtown and maybe stay to eat, or more likely pick up something to go. We walked in and started looking at the menu, when I started to feel a bit queasy. I told Orion I wanted to go, so we bought some scones and left. As soon as we walked out the door, a wave of nausea came over me and I threw up into one of the big concrete tree planters that line the street. Awesome. I never throw up, so I was completely taken by surprise and mortified. Later, I was telling my mom and she said, "Oh yeah, that's one of the side effects of Versed, or any drug like that really, it will almost always make you throw up as it wears off. Didn't they warn you about that?" Hah! Right.

We went home and knocked around a bit, and then decided to go see a movie. I didn't know if that was still in the spirit of staying "active", but it would keep me from crashing on the couch, and the idea of sitting in the dark and being distracted was very appealing to me. We went to the theater and found seats. I have no memory of what movie it was. I think we picked something loud and stupid and in no way sad. I probably don't remember because I didn't actually get to see any of it. As Orion came back from the snack bar and sat down, he dumped the entire 32 oz. cup of Sprite onto my lap. Oh, don't worry, I didn't feel too wet because it was all absorbed by the giant maxi-pad in my pants. I looked up at him and the look on his face was so pathetic that I burst out laughing. He joined in and we both laughed for a good long time. We left the theater and went home, and after changing my pants, I fell asleep on the couch.

Monday, January 23, 2006

The Procedure

We had our follow-up with the OB the next day. I was very curt and a bit rude. I did tell her that I thought the whole way she handled us was appalling. She seemed to kind of shrug it off, like she was willing to cut me some slack because of what we were going through, rather than owning up to the fact that she was an ass and a coward. Bah. I was never going to see her again anyway.

She asked if we planned to terminate the pregnancy, we said yes. Now remember, we were living in Kansas at the time, and there are exactly 3 places in the entire state that will perform the procedure; some place in Wichita, Planned Parenthood in Kansas City, and a private practice in the KC suburbs. The OB said, for what it's worth, she'd go to the private practice (let's call him "Dr. Jerk"), rather than Planned Parenthood. She said that Dr. Jerk didn't have the best bedside manner, but she trusted him more. She implied that she'd seen more women have some sort of trouble after going to the Planned Parenthood. Who knows, looking back on it, if she was talking out of her ass? Probably. We had no frame of reference, no experience in this arena. I sure didn't feel like polling everyone we knew about their experiences with abortions. So, we took her advice to heart and left.

I'm still loathe to use that word, "abortion". During this entire process I called it "The Procedure". Still do. I even capitalized it in my head. I think the a-word was too political, too fraught with meaning that didn't have anything to do with us, carried too much baggage. I felt like I already had enough to deal with, I didn't want to take on a whole other mess. Maybe that makes me a coward. Whatever. It was a hair I chose to split. I can only stand so much at once. We called Dr. Jerk and the soonest appointment we could get was the following week.

That week was the longest of my life. I'd started to be able to feel movement. Most women who have been pregnant will tell you that by the time you figure out that you're feeling movement, you've been feeling it for awhile and just didn't realize it. The day after our appointment with the perinatologist, I was lying in bed trying to sleep when it dawned on me just what was the fluttering feeling I had in my belly. That dawning was so painful, so overwhelmingly sad, I could barely breathe. Every night I would lie there, hands on my swollen belly, sobbing, while the tiny one kicked and thrashed.

Kansas has a 24 hour waiting period, so I had to go into the doctor's office and sign a bunch of paperwork saying I'd received all sorts of information about the potential risks and other options. Talk about a bunch of bullshit that just delayed the inevitable and caused more pain and waiting. If I'd had to do it all over again, I'd have packed up an gone back to Seattle, stayed with my Mom and gone to Aradia, or some other women's health center, where I would have been treated with caring and respect, I imagine, as opposed to being made to feel as though I was doing something vaguely criminal.

Then there was the matter of money. I was 20 weeks by the time of The Procedure. This meant that it was going to cost us $1200. Payable as cash or by credit card before the appointment. I was covered on Orion's insurance, but this was the insurance of the United Brotherhood of Carpenters and Joiners of America, Kansas City Local. While they'd for sure cover Viagra, they wouldn't cover birth control or abortions, not even "therapeutic" ones. We transferred almost all of our savings into our checking account so we could pay with our debit card, and heading in. When we arrived, they had us wait in a little, closet-sized room off the main waiting room. They called it a 'private' waiting room, but I know it was really called the Obviously Going To Cause A Scene With Sobbing Waiting Room. The receptionist came in and told us our debit card had been denied, so I got to make yet another sobbing phone call to the Credit Union to find out why. It turned out that funds transferred between accounts were subject to a 3 day holding period. Between sobs I explained to the bank lady that I was at a doctors office and they wouldn't see me until I'd payed, and I needed to see the doctor immediately. I think I completely freaked her out, because she put me on hold, and talked to whomever, and pushed a bunch of buttons, and turned off the hold. Just this once. The charge went through and we were let in to see Dr. Jerk.

Friday, January 20, 2006

Part Six

Those four days of waiting were, you know, awful. My mother and grandmother wanted to stay, but I sent them home. I didn't want to have to be polite, or make small talk, or hold up under sorrowful looks. I spent the time learning all about the various conditions we seemed to be facing. The more I learned, the grimmer things seemed. Hydrocephaly, fluid in the brain, could be a relatively minor and completely manageable condition at one end of the spectrum, or it could be completely devastating and lethal, on the other. Same thing with omphalocele, defects in the abdominal wall. And the heart issue, again, depended on how bad. If the sonogram lady was right, then it was dire. If not...well, I couldn't see anyway it wasn't going to be the worst, especially given that there were multiple problems.

I spent a lot of time crying, and so did Orion, though I think he was trying to be strong for me. He relied on me to get all the information, and I relied on him to call up family and tell them what was going on. It became clear to us that if things were as bad as they seemed, then we were going to terminate the pregnancy. We were in complete agreement and resolved. We both felt that the harder decision would have to be made if things were bad, but not dire. Would we be willing to try and have a baby that would have severe developmental problems, need multiple surgeries, have a very shortened life expectancy, and couldn't leave the hospital? If so, what does that mean for our lives? If not, does that make us bad people? Unfit to be parents? If we weren't willing to take that on, then maybe we shouldn't be trying to have a baby in the first place. I really felt like I journeyed into the heart of darkness during those four days.

The time for our appointment finally came, and we made our way into Kansas City to one of the large hospitals there. On the plus side, this experience was the complete opposite, in terms of doctor/patient relations, than our previous experiences had been. First we met with the genetic counselor, who also seemed to be acting as our case manager, or something like that. She went over the records that we brought with us, and was aghast at our description of how everything went down. I made it clear that we wanted to know everything as they knew it. We didn't want to be treated like idiots or infants. She agreed completely and proceeded to tell us that things didn't look good, based on the first sonogram results. Shockingly (not!), she didn't see anything inconclusive about the results. She said that given the apparent suite of problems, we were probably facing a chromosomal abnormality. Probably a trisomy of some sort. I nodded. This made sense. I had said as much to Orion a couple of days earlier. Throughout this meeting, I was awash in this weird mix of gratitude for being treated like an adult, relief that we were finally getting some solid answers, and crushing grief over the news we were hearing.

She took a complete genetic medical history from both of us, looking for possibilities. Nothing came up. Then she brought out these chromosomal flash cards and asked if she should go over the basics. I shook my head, but Orion said, "Yes." I felt so stupid at that moment. It never occurred to me that Orion didn't really know what a trisomy meant. I taught Intro Biology labs, complete with an entire section on mitosis and meiosis. I'd just assumed that of course Orion knew how it all worked. I don't know why I reacted so strongly, but I felt ashamed that I hadn't taught him myself, that he had to learn it from the nice case manager lady. Anyway, she walked him through it with her karyotype flash cards, and then we went in for the actual sonogram.

It was a much more elaborate set up than at our OBs office, of course. There was a big monitor set up over the bed so we could watch everything the whole time. The case manager lady introduced us to the sonogram tech, and told her that we wanted to know everything. She said, "Good." and went to work. She took us on a tour of our little, malformed fetus. She showed us the two (or three?) omphalocele and explained that they were severe. She showed us the heart, beating away, but with only two real chambers, and a kind of blob where the atria should be. Then she showed us the skull, with two enormous fluid filled sacs where the cerebral lobes should have been. She was kind, but direct, and ignored the fact that I was crying the entire time.

She stepped out to get the perinatologist. He came in and was also kind and direct. He essentially went over exactly what we'd just heard. He explained that there was very little brain development beyond the brain stem, but that was all it took for the heart to beat and for movement to appear normal. I said that all of this seemed dire, and he said that I understood correctly. He said that floating in amniotic fluid was an easy environment to survive in, but that if we had this baby, it would die within hours of birth, if even that long. He apologized for bringing it up, but said that he understood from our interview with the case manager that we were considering terminating the pregnancy. He said he didn't want to offend us. I guess in Kansas a doctor has to apologize for even discussing all the options. Feh. I told him there was no need to apologize, and yes, that was our intention given the prognosis. He nodded and said that he thought it was the right decision.

He also said he thought they should do an amniocentesis so that they could test for genetic anomalies. My initial response was a flat, "No." I was exhausted and I was done with it. I didn't want anymore procedures, or poking, or anything. I was now facing an abortion, and that scared the shit out of me. I just wanted to go home. He said he understood, and it wasn't absolutely necessary, but it would be fast, painless, and easy since I was already here, and it could give us a better idea of what went wrong. I was sobbing by this point. He said he'd give us as much time as we needed to talk it over and left us alone.

After talking around and around, I finally decided to do it. It would always bother me, not knowing. Also, there was a slight chance that I had some sort of chromosomal abnormality that would cause this same thing to happen with any subsequent pregnancies, and that's something I'd want to know about. He came back in and did it. It wasn't, of course, easy or painless, or even fast. Though he's apparently a whiz at it, according to the nurse assisting, anything medical with me doesn't happen easily. He had to poke around and it took about 10 times longer than usual, according to him. Anyway, he finished and we left. We had a follow-up appointment with the horrid OB the next day. Why we kept that appointment, I'll never know.

Thursday, January 19, 2006

Part Five

To this day, I still don't know how to feel about the sonogram lady. She knew full well that we were going straight into the exam room and getting bad news, yet she kept up her jovial demeanor, and printed out all those pictures for us. Of course, it's not her job to give out the news, and it's not her fault that we brought half our family with us into the sonogram. But still. I don't know if I'd have wanted her to give some hints that all was not well, maybe frown a little and say, "Hmmm." No, that probably would have provoked lots of anxious questions and demands for more information. But maybe she could have been a little less, "Wooh, active little bugger! Here's the nose. Let's try to get a picture in profile!", you know? Not let us get up quite so high, so the crash seemed that much harder. I don't know, maybe this isn't a fair criticism. The crash was going to be hard no matter what.

We got back to our house and my mom and I talked about what we'd just heard. She's a nurse, used to be a pediatric ICU nurse back in the day, so she's good to have around when something medical is going on. She can give no-nonsense information, knows what questions to ask. We talked and she said, "Well, that's really not good, honey. There's really no way to survive without all four chambers of the heart." Yeah. I knew that, of course I knew that. But knowing and knowing are two different things. Hearing it out loud made it impossible to ignore. I started crying all over again. Well, maybe it's not as bad as all that. Maybe they just couldn't see well enough, like the OB said. Maybe the level 2 sonogram will show us that things aren't as bad as they seem. One can always hope.

After a bit, I decided, like I always decide, to arm myself with information. I needed to know what keywords to search for, so I opened the envelope with the medical records and started reading. I got to the page with the sonogram lady's report and saw, handwritten at the bottom of the page, "only 3 chambers present", but also, "multiple omphalocele", and "massive hydrocephale". Underlined.

Blink.

What? I didn't know what "omphalocele" meant yet, though I could guess, but I sure knew what "hydrocephale" meant. And "massive"?! The OB had mentioned nothing about this. Not one word. And these notes didn't indicate that they, "couldn't really tell what was going on", like the OB said. These notes stated exactly what was going on. There's no ambiguity in "massive hydrocephale". I was...in shock. Panicked. Outraged! I called Orion over and read it all to him, nearly hysterical. Hands shaking, tears streaming, voice rising. I couldn't believe that they (she) hadn't told us all this. How could they send us home with this information and not tell us about it first?! What? Did they think a manila envelope was going to keep me from reading my own medical records?! I called the OBs office back and told them that we were coming back in and I wanted to see her, immediately.

Orion and I drove back over to the office. To their credit, I think the nurses knew I was not to be fucked with any longer and they brought us straight in and didn't hassle us at all. The nurse who escorted us back to the exam room asked a few questions, but I think the medical records I was clutching in my shaking hands told her enough. The OB came in a couple of minutes later and said, "So, I understand you're upset?" Un. Fucking. Believable.

"Yeah, I'm upset. You told us you 'had some concerns' about the sonogram results, but what I read here goes way beyond that. This says 'multiple omphalocele", 'massive hydrocephale'! That all sounds dire! What is going on..."

I went on like that for a while. She told us that, in her experience, it's best to ease people into the news. Not give them too much at once. Plus, she said, they really don't know exactly what's going on. She actually said, "We don't really know what a normal 17 week old brain should look like." What?! Bullshit! Bullshit. This is what they do. They see sonograms at this stage all the time! All the time. They know full well what normal looks like. She just didn't want to be the one to give us the bad news, the dire prognosis. She was totally fobbing us off on the perinatologist. Let them deal with the grieving couple. She just wouldn't admit it. Coward.

I burned through my anger talking to her. Burnt off all the adrenaline. An exhausted sadness settle in. I wanted her to admit that things looked dismal. She still kept insisting that they wouldn't know until after the level 2 sonogram. Of course, our appointment was over a week away. I asked if there was any way we could get an earlier appointment. I just couldn't wait that long. I started crying in earnest again, pleading. She agreed to try, and left. The nurse came back in a bit and said that the absolute earliest they could get us in was in four days. We numbly took our appointment slip and left.

Wednesday, January 18, 2006

Part Four

So, we had an appointment for our routine, 18-week sonogram. It was early May at this point, and my birthday's on the 10th, so my mother and grandmother made a trip out to Kansas for it. Or so they said. Really, I think they wanted to witness me in a pregnant state. Just knowing I was pregnant wasn't enough, they had to see it with their own eyes, even though I was hardly showing. Of course, there was the ritual laying-on-of-hands. My grandmother, who cries at absolutely everything even mildly sad or happy, or even slightly amusing, was a complete waterworks the whole time. She was 85 at the time, and she has tons of great-grandkids (my cousins are prolific), but that in no way diminished the Most Special status of my pregnancy. Aaah, Gram. What can I say, she's awesome!

The tension between my mother and I ramped up quite a bit with her visit. She really wanted to go out shopping for baby things, but I was completely resistant. She finally became too frustrated and snapped, "You are just going to have to accept the fact that you're having this baby!", like I was in denial. She just couldn't understand why I was so reluctant. I couldn't really explain it to her either.

Our sonogram appointment was on the last day of their trip. They didn't ask, but I could tell they were just dying to go. I wasn't psyched about the idea, but I thought it might make up a bit for my party-pooper attitude towards baby shopping, so we invited them along. So, we all piled into the tiny sonogram room; me, Or, my mother, my grandmother (in a wheelchair), and the sonogram lady. There was The Peanut, kicking and wiggling, heart beating away like crazy. Lots of Ooooh-ing and Aaah-ing and dewy-eyed significant looks. The sonogram lady took measurements and printed out about 10 pictures for us. She said she couldn't really tell the sex (wrong position), but she would hazard a guess, if we wanted. I didn't want any guessing, so we finished up. My mother and grandmother went back out to the waiting room, while Or and I went into an exam room to meet with the OB and go over the results.

This is the part where everything started going to hell.

In truth, I had an inkling something was wrong during the sonogram. It seemed to me that the lady was taking lots and lots of measurements, especially of The Peanut's head. This angle and that angle, this measurement and that measurement. What could they possibly need with all those measurements? I think that's why I didn't want her guessing at the sex. Does that make sense?

The OB came in and said, "We have some concerns over the sonogram results." Hot, prickly feeling up the back of my neck. Something akin to panic starting to come over me. The only way to deal with that is to sit very, very still.

"'Some concerns'? What does that mean?", I asked very calmly.

"We had some difficulty visualizing all four chambers of the heart. We want you to go in for a level 2 sonogram."

"That sounds very bad"

"Well, it's not a good result, but we can't really know anything until you have the level 2 sonogram"

She then goes on to explain that there is no level 2 sonogram in Lawrence, so we'll have to go to a perinatologist in Kansas City. She'd had her nurse call and make an appointment for us. They were putting together a copy of our records to take with us. I kept asking her questions about what she thought, what it meant, what was her opinion? Tell us more! Be more definite! But, she kept deflecting me saying that they just couldn't tell and we had to wait for the results of the next sonogram.

We left the exam room and stopped at the desk to get our appointment information and a manila envelope with our records. I sort of gestured to my mother and grandmother to head out to the car. I didn't want to start crying in the waiting room, in front of all those other pregnant women. I was barely holding it together at this point. I asked Orion to go out and tell my mother what we'd heard while I waited for the records, because I just couldn't. He came back in after a bit, and we left together. As soon as we stepped outside the door, I turned to him and started crying against his chest. A young, obviously pregnant couple passed us on their way in. Her smile of greeting faded when she saw my face, turned to a look of concern mixed with a bit of fear, I think. I'm sure that on some visceral level, seeing a crying woman outside of the OB's office has to be considered a sign of bad luck. Apparently, Orion had only told my mother and not my grandmother, because my grandmother looked up with alarm from where my mother was helping her into the car and asked, "What's wrong?" I could hear my mother quietly tell her that something's wrong with the babies heart. "Oh no! Oh, that's awful!" She started crying. No one said anything on the ride back to our house.

Tuesday, January 17, 2006

Part Three

We're back. Albuquerque was nice, except for the 8% humidity, nose-bleed dryness. Oh, and Linus put my cell phone in the toilet. I don't know why, except throwing things in the toilet is apparently one of the super-funnest things ever, given how much time he spends doing it. Potty-training should be a breeze, right!?

Ok, so, to get back to the story - I didn't miscarry, and the OB had called in a prescription for progestrin. The sonogram lady gave me some pictures of what looked like a kidney bean or a peanut hanging out in my uterus, so we start referring to him/her as The Peanut. I went to the pharmacy and picked up my prescription, headed home and started doing research. I started pulling the primary literature and found a recent meta-analysis that essentially found that supplementing progesterone will not stop a woman from miscarrying, except for a few women who have a very specific inability to produce progesterone properly. Low progesterone levels are a symptom, not a cause, and the common practice of supplementing progesterone is not really necessary or recommended. Now, I'm all for modern medicine. I like that our life expectancies are in the 70s or 80s instead of the 40s, but I'm not about taking medications unnecessarily, especially while pregnant, and especially not hormones, which mess with everything. So, I tried to get hold of the OB to talk to her about it. Foolish me! It's Saturday at this point, so the best I can do is leave a message for one of the nurse-midwives and hope that someone gets back to me. Meanwhile, I take the first dose, because I'm still paranoid about miscarrying and I'm not willing to make a unilateral decision to not take the meds. I ended up lying awake that night until, seriously, 4 in the morning, obsessing about all that had happened. In the morning, I'm weepy and sleep-deprived, no one from the OBs office has called me. I decide to do some more research on the meds, so I type the name of it, "Provigil", into Google, and find out that what I've been taking is used to treat narcolepsy. What? Now I'm really confused, though being awake until 4 am makes all kinds of sense. I'm wondering if this is a dual-use drug or what? Of course, now it's Sunday, so not only is the OBs office closed, my pharmacist is off as well. Long story short(er), I've been taking the wrong med. Either the doctor's office called in the wrong thing, or the pharmacy keyed in the wrong code, I still don't know which. I'm assured by all parties involved that this Provigil will in no way harm The Peanut. Of course, what else are they going to say.

So, then I'm on the real progesterone, and it practically puts me into hibernation. Progesterone slows down your digestion and makes you sleepy, so when you're supplementing what your body is already making in early pregnancy, you become extremely sleepy! I can barely stay awake for more than a couple of hours at a time, and when I am awake, all I can think about is sleep. I met with my OB to talk to her about the whole progesterone-as-symptom-not-as-cause thing, I even photocopied a couple of papers out of journals to give to her, but she totally and completely blew me off. She wouldn't even look at the material I brought. It's at this point that I decided I need a new doctor. Still, I stayed on the progesterone for 5 weeks or so. I was sucked in by the whole better-safe-than-sorry thing. Oh, and I also developed a problem with my gall bladder, necessitating another sonogram, this time of my liver. It became "sluggish" and "full of sludge". I'm sure this was a direct result of being on the progesterone, even though my OB thought I was full of crap (she didn't say as much, but it was written all over her face, if you know what I mean). Funny how as soon as I stopped the progesterone at about 13 weeks, all my gall bladder problems went away. Hmmm.

Meanwhile, we weren't telling anybody I was pregnant. Even though the OB reassured me that everything was fine, I still had the feeling that things weren't right, and I didn't want to tell until I knew everything was ok. The exception to this was my mother. I did tell her, and she immediately flipped out and started pressuring me to tell the rest of the family (all the cousins and aunts and what-not). She just couldn't understand why I didn't want to immediately tell everyone, she was so excited. I kept telling her that I was still nervous that something would go wrong, and that I would tell everyone when I knew everything was ok. She was not happy about it. She also wanted to start buying stuff. We went 'round and 'round about it. I'm a scientist, but I was worried that would jinx things. Hey! Don't look at me that way! That's a major cognitive adaptation, the ability to hold two contradictory thoughts in your mind! Anyway, my mother kept harassing and I kept resisting. Finally, she told me that she "accidentally" told my aunt, and my aunt was probably going to tell my cousins, so I might as well call them up myself. I was angry, but I relented. I was about 16 weeks at this point, well past the real danger of miscarrying, and I'd just had a clean result from my quad marker test, so I was feeling more hopeful. Plus, at a certain point you just have to start telling people. I wanted to soak in the congratulations and well-wishing, to indulge in the happy fantasies. Once I started telling family, I ended up spilling the beans all over the place - coworkers, colleagues, everybody.

We'd started looking around for a midwife, asking everyone we knew, and kept getting recommendations for the same lady - Fran. By this point we had started to consider a home birth, and she was one of the few (maybe only) midwives in town that would attend a home birth. We made an appointment with her to see what she was like. She's a lay midwife, so she saw us in her house, in a bedroom she used for appointments with a comfy old bed covered in a beautiful quilt she made herself. After a couple of hours of talking, me with my list of questions, and her with over 30 years experience catching babies, Or and I walked out, gave each other a little nod, and knew we'd found our midwife. Fran is this awesome mix of absolute competence and lifetimes of experience, wrapped in a slightly hippy, grandmotherly package. While we were there I asked her if she could recommend another OB, maybe someone she worked with, because I disliked mine so much. She said, "Why do you feel you need to see an OB, what about a family practice doc?" "Um...well...you mean I don't have to see an OB?" Like there's a law or something. She recommended one of the few doctors in town who was supportive of home birth. I called and made an appointment, but I already had an appointment with the OB for the 18 week sonogram, so I decided to keep it and have that be the last time I saw her.

Next time - 4 generations and the sonogram lady.

Monday, January 09, 2006

Delay

I'm in Albuquerque for a workshop all this week. I thought I'd be able to post, but I only have limited internet access, so I won't be able to really post again until next week. I know a week is a loooong time in blog-years, so I just wanted to let you know.

Thursday, January 05, 2006

Part Two

It's January, 2004, I'm pregnant but I don't know it yet. This pregnancy was...what? cursed? doomed? a bad ride? from the start. I've been searching for the right phrase, but I haven't found it yet. I'd never been pregnant before, so I didn't recognize the signs. I left for two weeks of travel to Florida and D.C. to give a couple of talks and meet with potential collaborators (at the time I was in grad school). I was a week late, but that wasn't so unusual given my history. I felt like I was having intense, prolonged PMS. My stomach hurt, I felt bloated, and my boobs were sore. I couldn't even put a shirt on without wincing.

I lay there in my hotel room in D.C. one night, not sleeping, grousing in my head about how weird and sore I felt, when suddenly I thought to myself, "I wonder if this is how it feels to be pregnant." That's when I knew. Duh! I felt so stupid for not realizing it sooner. Then the sinking feeling began. I'd been sick for weeks with the worst cold I'd had in years. That meant I was on pseudophed constantly and wasn't really eating. Bad. Also, I have Multiple Sclerosis (don't waste your sympathy - I'm lucky. I haven't had any symptoms since the ones that diagnosed me 8 years ago now) and was on a medication that they recommended you not take if you're pregnant. I'd stopped taking it a couple of weeks earlier, but not months ago like the packaging recommended. It did say there were no known adverse effects on pregnancy, but still...

I lay there in that hotel room with my sore boobs and my sinking feeling and didn't sleep. The sinking feeling was mixed with a deep ambivalence. I just couldn't get happy about being pregnant. I was too worried about getting off to a bad start. Plus, I hadn't resolved my concerns about whether I should get pregnant at all. Would I be a good parent? blah, blah, blah.

I got back home, peed on a stick, and made an appointment with an OB. Here's an example of how totally out of my element I was - it didn't even occur to me to see a family practitioner. I just assumed you had to see an OB if you're pregnant. I didn't have any friends who had kids, no one around me to ask or give me advice. I didn't really have a primary care physician, so the OB it is. We were living in Lawrence, Kansas, at the time and there was only one practice in town that also had certified nurse midwives, so I called them. I knew that I probably wanted to have a midwife attend me during labor (attend to me? attend my labor? Whatever. You get the point. Grammarpants I am not, obviously.). I was 7 weeks along at this point. I went in, peed in a cup, and met with the doc. I told her I was worried about neural tube defects and other nebulous frights because of my poor nutrition early on and she told me I was overly concerned due to my inexperience and hormones. Thus began my horrible relationship with this OB.

They took my blood to "check hormone levels" and sent me on my way. A week later, one of the nurses calls and says they want to take my blood again because my progesterone was a little low. Not that unusual, nothing to worry about, calm down. I go in, they take my blood again. I get a call in a couple of days from another nurse saying that my progesterone levels haven't come up, "like they'd like", so they want to schedule me for an ultrasound, but it's a Thursday and their technician won't be in until Monday. I numbly agree to a time on Monday and hang up. Of course, I then go back to my computer and start researching hormone levels and pregnancy. I know this response isn't unique to scientists, but that's what I do. I'm a research biologist, so I'm all about data and results. After an hour or two of reading, I call the nurse back to get my actual numbers. The nurse is completely puzzled by this request - "You want to know the actual hormone levels?" Yes. "You want the numbers?" Yes. "The actual numbers?" Yes. "We don't usually give out the numbers." Could I grit my teeth any harder? After a couple more minutes of further brow furrowing and puzzlement, she finally reads me the numbers.

Once I have my precious numbers, I go back to my research. After another hour or so, I become convinced that I've miscarried. So, now I'm facing a long weekend of waiting for the ultrasound to confirm the bad news. This is completely untenable, so I call the doctor's office back. I want to reschedule. I want them to stop doling out information like its dangerous and should only be taken in small doses. I want them to stop acting like I can't handle the truth. I want the nurse to admit that they think I've miscarried. I'm kind of flipping out. She hems and haws and finally says that "things don't look good". I ask if there's any way that I can get in sooner for an ultrasound. I end up crying and pleading on the phone. Unfortunately, that won't be the last time I end up on a phone crying and pleading during this experience. Finally, they relent and refer me to another clinic for an ultrasound the next day. I'm getting mad all over again as I write this. What are they thinking, calling a pregnant women with potentially bad news, not giving her the full story and expecting her to wait days to find out what's going on?! I know this happens to people all the time - what is the deal?!

I show up the next day for the ultrasound, and it's just me and a nice lady technician. I get into the gown and prepare to have my belly greased up when she busts out with the giant porno ultrasound dildo. Not what I was expecting! She, um, gets to work. I'm lying there feeling grim while she looks around. Then, she zeros in on a little bean with a flickering white spot and says, "There's the heartbeat." I burst into tears. Seriously. Body-wracking sobs. She looks at me with concern and says, "Oh, you thought you'd lost it." I sob and nod and snurffle. She assures me that everything looks normal and sends me on my way. I call my OB and they tell me that they want me to start on supplemental progesterone (progesterin) immediately and call in a prescription.

Enough for now. Look, I know this is a long story, but I'm going to keep writing.

Tuesday, January 03, 2006

Making Babies, Part One

We've been talking lately about whether or not we want to have another baby. It's been a long, meandering discussion. Much the same way we went about trying to decide if we were going to have any kids at all. Anyway, I'll write about it in more detail some other time, but the thing I want to mention now is that it came out that one of the things holding Orionjob back from being whole-heartedly behind trying again is that, apparently, Linus' delivery was really hard on him and he's not sure if he wants to go through that again.

What? Really? Because, I'm the one that actually delivered Linus - out of my body - and that's not one of the things in my "Cons" column. Not that I'm like, "You know, the thing I could really go for now is active labor!", but the prospect of it wouldn't stop me from having another baby, if that's what we decide. Orionjob, however, seems to bear deeper scars than I do, which kinda pisses me off, a little. Not that I think he isn't entitled to his feelings, and yada yada blah blah, but if I'm ok with it, I feel like he should be too, you know?

It's possible I haven't got the full story out of him yet. He's a still-waters-run-deep kinda guy, and often the first thing you get out of him isn't the whole of it, and you have to wait a bit before he spills the rest and really comes to whatever conclusion he's going to come to. I used to get very impatient with him when we were first together (because Patience is NOT my middle name), but over time I've gotten used to the process. Plus, getting frustrated with it isn't going to make things happen any faster. In fact, the opposite may be true. And, I can't change a rock into a river through force of will. I don't have that kind of power, and probably wouldn't want to even if I did. So, I wait.

Meanwhile, I thought I'd tell you all Linus' birth story, for anyone who hasn't heard it already. So, be warned. I don't plan on going into super, squeamish detail, but still...

It was quite arduous - 54 hours total. Um, I guess I feel like I should first tell you that I was pregnant before Linus. We had decided in about November, 2003, to kinda, maybe, start to think about trying to get pregnant. We stopped using contraception, but we weren't really trying. I mean, we were having sex, so yeah, in that way we were trying, but we weren't taking my temperature every morning, or anything even remotely like that. I had always assumed I'd have a hard time getting pregnant. I'd had really screwy periods until I was about 30. By screwy, I mean irregular. Sometimes I'd go three months between, sometimes 20 days, there was just no telling. Then, sometime in my early 30s, I became regular. Like, phases-of-the-moon regular. But, when we started discussing pregnancy, I'd only had a couple of years of regular, vs. a couple of decades of screwy, so I was still kinda in the mode of thinking, "my cycle is weird and there's no way to predict what may happen", which was totally not true, had I been thinking. Still, I chose to believe that I was perhaps only ovulating once a season. Also, my mother had had trouble conceiving me. She tried for a couple of years, though this was in her 20s and not her 30s. I think she even took some kind of fertility drug eventually, though I'm not sure about that last bit.

These two things, plus the fact that I was 35 at the time and I'm a biologist and know how diminishing-fertility happens, clouded my thinking. This was also around the time when it was a cover story on every weekly news magazine how so many women were postponing having children until it was "too late". Oh, and Or and I had been using a sort of modified rhythm method for about a decade - that is, we used nothing most of the time until I thought it was around the time I could be ovulating, and then we'd use condoms. Now, I know that the rhythm method works for crap unless you absolutely know when you are ovulating. Since as far as I knew, I'd never been pregnant, I assumed that I must not hardly ever be actually ovulating, otherwise I would have gotten pregnant before. Yeah, I know that's some fucked up logic, using a contraceptive method that I assumed would normally fail, but this just serves to illustrate the fact that I seriously thought I would have to TRY to get pregnant. Like, months, possibly years, of data collection, strategic sex, luck, and possibly fertility-enhancing drugs.

So, I got pregnant immediately. That is so like me.

Well, I'd planned on telling one story, and now I'm telling another. I'll get around to the original plan eventually, but first I'm going to finish this one. But not in one post, because this is plenty long already. If you're still reading at this point - thanks.

Crunchy segments

Here's something you should try, if you haven't already. Take one of those little satsumas, or madarins, or clementines - you know, those little oranges you get by the crate this time of year - peel it, separate the segments and arrange them so that they're not touching each other, and let them sit for about an hour or so. Now it's ready to eat! If you do this, the outside of each segment will dry out and become just a little crunchy. When you bite into it, you'll get this satisfying *pop* and then the sweet juicy goodness fills your mouth. I discovered how nice clementines are this way because Linus often asks for them (he has a sign for them - twisting a fist), but once you peel it and separate the segments for him, he'll eat a couple and then get distracted and wander off. Not wanting them to go to waste, I'll eventually eat whatever's left.
I admitted to Orionjob that I'd started leaving my clementine segments out before eating them when I'm at work and he says, "Yeah! They get all crunchy! It's nice!". He discovered it the same way I did. Toddler cuisine.