Wednesday, April 30, 2008

I cannot f*cking believe this

My sister is losing her pregnancy.

Goddammit.

She's 17 weeks and a few days. Went for her OB appointment yesterday and her cervix was short. About 2 cm. OB sent her to the peri, who sent her to another peri today. Down to 1.2 cm. Other indications of pre-term labor, though no contractions yet.

I am so angry at the universe right now, I'm speechless.

I just can't fucking believe this.

Everywhere

I just read this post on my husband's blog. I think he said it really well.

Monday, April 28, 2008

Because it is bitter, and because it is my heart*

This morning, after coffee, I took another picture of the tulips in our front yard. They were both dying, and one's petals were starting to curl and fall away. It was just too perfect. I can't even bring myself to post it.

I fucking hate spring.



*With apologies to Joyce.Carol.Oates. and Stephen.Crane.

Sunday, April 27, 2008

How will you do it? Part Two

Wow. You guys are so great. Have I mentioned this recently, how much I appreciate you? A regular post is easier than responding in comments, so here we go.

So, yes, still thinking about getting out of our college town (good call, Newt) for M-Day (coincidentally graduation weekend). Avoidance, as seen by consensus, is the key word. Though it looks like we may not be able to be traveling on both M-Day and the EDD. My RE said to call him when my next cycle starts and we'll talk about what tests (specifically CD3 tests) to do next. If I have a 28-day cycle, CD1 will be on 5/19, our EDD. I'm usually around 26 days though, and there's no way to tell since my cycles are inconsistent, especially following the delivery and D&C.

It was nice that my doctor took me seriously. He's certainly not perfect, but he treats me (and my husband) like an intelligent human. Talks to me like an intelligent person. Not just a patient. And he's honest with me. He didn't make me feel like a freak or a mess for asking my questions, and for wanting the tests. Despite the reason for the visit, and the pain, it was good to see him. Wish he could be my OB.

Something tells me that C would be right with you, Tash, hidden away with the video games, but that doesn't do me much good. I could try to sleep through the day, since I have become a champion sleeper, putting my teen years and early 20s to shame. I was up at 8ish to go to the HSG and after posting yesterday, I fell asleep around 5, heard the phone ring around 8:30 and C woke me at about 12:30am last night. I took an am.bien because I was afraid I'd be up all night, but fell right back to sleep and slept until the cat started knocking stuff off my nightstand around 8 or 9am. That is a LOT of sleep. I didn't even take anything during the day yesterday.

Anyway.

Maybe we'll find something last minute. Still working on that. We also live about a 5-hour drive to Chicago, so maybe we'll do that instead. Just spend a weekend away.

Julia and Busted, thanks for offering referrals! Should I email you? I've added an email address to my profile, so you can email me, too. Just let me know what you'd like me to do. I really appreciate your offers. And any others are welcome, too... We don't know where we'll be in a couple of years, where I'll be (cough, cough) pregnant again. Ahem.

Julia, do you know Boston or the area? I'm feeling really homesick right now. As you all can probably tell.

*****

So here's another question for you. How did/do/will you deal with due dates/anniversaries? I've read some of your accounts, but I'm still open to advice. The confluence of anniversaries and important dates (as luna notes) is making me a little insane. More than a little.

And I can't help but think, I would be close to having my babies now. We would be getting ready. We would be making and fielding phone calls about plans, results, appointments. I would be huge. I would be happy and impatient, scared and ready to go. I would be about 37 weeks. Due officially 3 weeks from tomorrow (Monday). Both the RE and the sucky OB said I would probably go 2 to 3 weeks early. So close now.

They have been out of my body almost as long as they were inside me. Too long, and not nearly long enough. And I can feel it. It's getting worse. Don't know if I can stand three more weeks of this. And the aftermath.

So, any advice?

Saturday, April 26, 2008

TMI

Just a warning. I'll probably share more than you wanted to know. This is a long post.

Short story:
Everything is fine. My tubes are clear and there is no evidence of damage to my lining from the infection or the d&c. Hurt like a motherfucker.

Long story:
It was quite a morning, though. We got there a few minutes early, which was good, because my stomach was a mess. The UC has come back full force and I think the antibiotics have not helped things. We went in, registered, clarified confusion about my last name (maiden? married? both?) and about my first name -- there's an A at the end of my formal first name, not an E. I don't usually make a fuss, but since they wanted my last name right, I figured let's get this one right, too. Then the nurse called me Christina -- which is a lovely name, but not mine.

I get changed, lock up my stuff, the nurse takes me to the hsg room and gets my husband. I give him the key because, well, what am I going to do with it.

(Here's where some of the tmi comes in. Well, more of it.)
After my first HSG 2 years ago, and through 9 IUIs, my RE, Dr. C, started calling me the final exam. My cervix is not terribly agreeable -- it's off to my right at about 9:00 (from his pov) and there's sort of a natural diaphragm. It's kind of up against the vaginal wall. Great. Also, I tend to be, well... how to put it delicately... I usually need the narrow speculum.

For every IUI, I'd remind him I needed the narrow spec. And he'd essentially smack his forehead and say, Oh yeah, it's you again. (All done with humor, not in an asshole-y way.) When I made the appointment for the HSG, I asked the nurse to remind him that I'd need the narrow one, since this is done off-site. She said she'd tell him, but apparently, she didn't, or he forgot because he showed up with the regular one. Okay, we'll give this one a try. Maybe things stretched...

FUCK, that hurt.

And you know, I'm on that flat table in that weird position -- no stirrups, nothing to stabilize or support you. Move your legs this way, no that way. Lift up your hips. And the machine is running loud and he's practically talking into my hoo-ha and I can't hear him because all I can hear in my head is OWWW.

He tried twice and considered having me come back another day, then decided he'd take care of the next person, run back to his office (this off-site place didn't have what he needed) and we'd meet back at the hsg place in 45 minutes. C went off to the waiting room, I went back to change. Except C had the key to my little locker. With my pants in it. And my purse which had my phone in it. So I had to wait around until the nurse came back to check on me, making small talk with the next patient. Oh, that was fun, sitting around in our johnnies.

C and I went and got something to eat. I took an aleve and we came back and tried again.

That freaking hurt, too, but I was able to get through it. For some reason, my cervix was extra sensitive, and I could feel the iodine being swabbed on, I can feel the catheter thread in there. I only sort of felt the dye. And he didn't really deflate (inflate?) the balloon, or whatever that was because he just wanted to get it done quickly. Poor C, I was squeezing his hand hard.

My left tube was nice and easy, then my right filled, then we were done. Motherfucker. It was uncomfortable last time, but nothing like this. He said I was in good shape as far as my tubes and lining. We talked about the twin thing and he said maybe he'd just tweak the dose a little -- did I want to try with just one follicle? Hell, no. So we'll give it another try. At some point. He said it shouldn't take too long to get me pg, since we know what to do now (inj dose, hcg, iui, progesterone, folic acid/B vit supp, baby aspirin, glucophage, lovenox).

He wouldn't let me sit up right away, then helped me up after 5 minutes or so.

I asked him about hormone testing since it's been a couple years and he agreed. I mentioned that I had considered it for this cycle, but I didn't know what to do... And he nodded and said, I know, it's a lot. We'll do it this cycle.

Told me "no more amnios," (duh) and, I'll be in touch to check on you. Then call me on day 1 or 2 of your next cycle. He called my cell not quite an hour after we finished to see how I was doing. Good man.

Guess I should have taken an ati.van, before hand, too. So I could be more relaxed through it. Probably would have passed out though. Glad he made me lie down longer.

And I asked for a copy, thinking records, thinking about posting something. But the nurse gave me an x-ray, and I just didn't have it in me to ask for a different format. It's so weird though, I can see the bones of my pelvis, where the catheter and speculum are -- and how far off center they were. Are. I really am a bit off. Dr. C. said, I'll have to deliver your babies because, jeez, this cervix...

*****

It was weird, too, when we finally got back to the car after it was over. The sad, scared, anxious feelings came back. I can't think of the word for them. In the car on the way over we had said that it kind of felt like the first step back toward thinking about trying again. Like not even cleaning up after a storm, just shoveling out the wreckage a bit. Just the first steps toward thinking about moving forward. And I just felt...sore. Physically and emotionally.

Shaky. Scary. Sad.

I don't have any more words.

Friday, April 25, 2008

How will you do it?

How will you deal with Mother's Day this year? Seriously. I'm looking for ideas.

I've been thinking about this a lot, and the best plan I can come up with is to spend more money than we should to be on a plane to Boston that day. Our wedding anniversary is the next day, and seeing as we met in Boston, it might be a nice, nostalgic visit. Boston in May. With 25,000 graduating college students, but still.

And maybe we could get a consult at the Brigham*, just for kicks, while we're there. Get educated about how a possible future pg might be treated and get a tax deduction for medical expenses. Maybe take in a movie at the Coolidge Corner Theater up Beacon Street in Brookline. Some chicken soup at Zaftig's.

Then I was thinking we could stay until the 19th, which is the boys' due date. Travel on that day, too. My goal is to be so busy and stressed with departure times, etc., that I don't think too much.

Also, the anniversary of my mother's death is Sunday, May 4. Generally, I've been okay around that day, but I know this one will be hard. If I'm making plans to travel, maybe that will help.

Or perhaps I'm being too optimistic about my ability to avoid. Like it won't come back to bite me in the ass two days later, leaving me a wet, sobbing mess in the middle of some airport waiting room.

*****

HSG is in the morning. Hopefully my RE will still remember where my cervix is since it's been a while (I'm kinda twisted, apparently). Hoping it won't hurt too much. As I recall the last time, the worst part was him actually navigating my cervix. Certainly, I'm a different person/patient from the one I was the last time.

Sigh.

Okay. Yes, I've completely lost my mind. I took an am*bien an hour ago, which is loosening my fingers, but yeah. Basically I've lost it. And this is just the hsg. Have to find out if it's worth it to do all the Day 3 testing again, since it's been two years and I'll be 38 in a couple of months. (And family history kinda dictates.) And the PCOS testing again. Maybe a glucose screening.

Can you see my doctor's eyebrows jumping up off his forehead as I ask him about this? Whoa, there. Yeah, I know.

One of the big questions, though, is the twin question. We've gotten pregnant 4 times with IUI. The only one that really "took" was a twin pg, the cycle he tweaked the fsh dosage that seemed to create the right environment. With IUI, there is very little control over how many follicles might ovulate and get fertilized. And implant. And grow. The peri (one I didn't care for) said without question, I should not carry twins again. There's no way to control for this with medicated IUI. Unmedicated IUI seems to be pointless with all our issues.

And IVF? Have I mentioned that we are broke graduate students up to our eyeballs in debt for programs not yet finished?

And if we can find an OB we can trust before even trying to get pg.

And...What?

Me? Getting ahead of myself? No idea. Never do that. Nope.

Wish me luck in the HSG. Hoping there will be no passing out (a la Newt), two wide open tubes and a rich fertile environment (no scarring please) just waiting for us to grow something human in it. When we're ready. More ready.

I think the amby is telling me it's time for bed. C is, too. Thanks for listening, and for your recent comments. Keep 'em coming.

And help me out with that Mother's day, thing, too?


*Any recommendations for High Risk OBs in Boston, NY, LA or Chicago are welcomed. In addition to my trusted RE's recommendation, I would like to get other opinions in big-gish cities.

Reclaiming

One of my colleagues, a friend of mine, walked by while I was reading Niobe's latest post on Goo.gle.Reader. He was stopped in his tracks by the title. Not sure what to make of it. Of course, I could see he was kind of horrified by it. He paused and I could see him trying to make sense of it.

This is why I like him. He stopped to react, didn't just go on his way and judge me. I paused, too, sort of embarrassed "does he think I'm actually reading dead.baby.jokes?"

I just said, It's a way to reclaim the words. He smiled a little sheepish, but said, Yeah. Okay, I see it. And he quietly took it in.

As a Black man in this world, he knows a lot about the power of words and the power of reclaiming words. But I still wonder, what does he think? Will he forget this? I don't think so, he doesn't seem the type. I think he'll try to work this through, if briefly. Those words: dead.baby.jokes are jarring.

That's one of the things I love about Niobe's writing, is that aside from her beautiful use of the the language, she doesn't mince words. The honesty in her writing can be jarring sometimes.

So, yes, I think he'll think about it a little bit. But what will he think? Will he judge me? Will he think it's weird? That I'm damaged now? A freak? Different?

Well, I guess I am. Certainly that phrase is not as virulent and hateful as some others that have been reclaimed (the n-word, queer), but I think it does give voice to an under-represented group: We who have dead babies. We are not ashamed. We are grieving.

Thursday, April 24, 2008

I don't understand **Updated**

Why does it have to hurt so much?

I was going to entitle this tongue-tied. I've been sitting here with the window open to my blog, but playing solitaire. I am so full. It's like there's no room for me in here.

Everything hurts. A few good moments, then BAM. I make a decision, then BAM.

Just overwhelmed. It just washes over me. Clouds my judgment. Makes me afraid. Of everything. I am immobile.

Nightmares. Not even about the boys, or the delivery. Dreams of fear, dreams of being assaulted. Violated. Hurt.

*****

I finally figured out a way to withdraw with the least amount of disruption to my students and to my coordinator and her assistant. I am told that they will see if they can do it. (Note the contrast from January when they told me they would be available to support me however they could once they took my co-teacher away.)

Told they need to know by about mid-May what my plans will be for the fall. My plans for the fall -- that's poetic. I'm already falling. Getting lower all the time.

A year ago I was the golden child. Now it is awkward. A year ago I got an award recognizing my potential. Now they're telling me to take time off.

Last night, one of my classmates (one who has been very sweet and kind through all this, sent me a card, always appropriate) actually crossed the room to tell me she was glad I made it to class, that they missed me last week. I realized that she is one of 4 or 5 people who has asked me how I'm doing, really asked me, as a friend. Not because they are trying to anticipate funding for the fall, or what they will have to cover because I am out of commission. People who perhaps don't fully understand, but are actually sensitive.

I know, I am lucky in this way. 4 or 5 people who are not afraid to talk to me, who do not dismiss me, who understand when I joke "well, of course, there would be no sign on the wall welcoming a baby that didn't survive." Who would disagree with that? Why on earth would we remind people that 2 babies died?

One classmate whose sister gave birth to twins in September -- at 24w3d -- took the time today to show me pictures of his niece and nephew. Doing fine now. Weighing in at 15 pounds or so.

And yes, that goddamned sign welcoming the new baby girls is still on the office window. The one from February. (Did I ever mention that the child that would have resulted from my chemical pregnancy in June was due February 14? Yeah.)

I guess I was naive in thinking that the academy would be any more supportive than my former places of employment. Consulting firms. Dot coms. Sensitive, smart, educated people in the academy, right?

Business is business. University is business. Period.

I'm so angry and sad and tired and frustrated. And so, so sad.

In class last night, we were talking about something I really can't recall. Except for the bit about Derrida, talking about how we make sense of things when our plans don't go as we expect (chaos and godlessness vs. a religious or faith-related approach). I had a good chuckle about that one. I could teach a coure on the post-structuralist/post-modernist approach to dealing with the curveballs life throws. It was all I could do not to just take the bottle of At*van out of my purse and say, This is how I make sense of the unexpected.

*****

Everyday it seems there is something that sets me back, that upsets me more than it should. A rude student. A careless comment. That goddammed sign on the wall. And I am angry. Paralyzed.

It just hurts so much. Why does it have to hurt so much?



**Updated**

I just reread this. It's embarrassing. I can't even seem to put 3 sentences together without... contradicting myself. Without writing gobbledygook. Typos. I really hope this is just me being distracted and grief-stricken. And not the Am.bien and ati.van that really, I usually only take at night for sleep.

Maybe it's antibiotics? I realize that a lot of the anxiety/sadness/anger is related to my upcoming appointment on Saturday. I'm seeing my RE for an HSG. It's been 2 years since I had one, and theoretically, I'm interested in trying to salvage what's left of my fertility. It's the first step in thinking about future reproduction. I'm sure that it's contributing to this. I guess that's a whole other post. If I don't completely lose my mind in the meantime.

Five


Five. Waiting for me outside my door.
Five. Who didn't make it.
Five.

Monday, April 21, 2008

Not Rome

Weekday mornings I usually get up with C, (it's a way to make sure I getup) and we go get coffee, then I drop him off at school before heading home or on to whatever errands have to take care of. Today, I just came right back home with my iced coffee and little scones.

We live in a little development of rental townhouses in our little college town . It's a little bit removed from where all the college students live, a little bit more grown up. Unfortunately, more grown up means more babies, but we have mostly gotten used to that. Our unit is on the outside of a corner, so we can see down one street and up another. Just across from our unit is another couple, (I'll call them the Joneses) maybe a bit younger, but also associated with the university. He is a new/visiting prof, she is a SAHM with their toddler and baby, born in October, I think.

When I was infertile I used to watch them, as they took pictures of baby's first snow, when they traded in their sedan for a minivan. When I was pregnant, I watched them, too. As she grew bigger, toting around their little girl. Getting ready for the second. Once I was pregnant I could enjoy seeing them, thinking about what might be our future, how we might look to others, with our little boys in tow. This is not the only young family in our neighborhood, in our line of sight. I try not to look out that window anymore.

It's a gorgeous spring day in the midwest, and as I pulled into our driveway, I noticed that our barely landscaped front "lawn" had sprouted some color: two daffodils under our only tree. Two red/yellow/orange tulips by the bushes next to the stoop. I thought, Hmm, two.

Thinking about some of the recent posts about gardening, about spring budding, despite our losses I felt almost comforted by these two flowers, like our little boys were everywhere. Two.

And so, armed with my crack.berry, I decided to see if I could get a decent picture of either the daffodils or the tulips. I stopped for a few minutes, took a couple of shots, switched angles, thought, yes, that's good. That's nice. Tulips, for our two boys. Pretty.

I was putting the phone away, getting my coffee and purse out of the car as Mrs. Jones walks up to her driveway, pushing a stroller, and wearing her baby. Two. And I thought. How sad is this. How pathetic. I'm happy about two pretty flowers. She's got the real thing. She doesn't have to settle for flowers.

******

I am reminded of the metaphor that's used in special education circles, called "Welcome to Holland." It's about how parents of children who have special needs expected to go to Rome, they were packed for Rome, they had all the books and the info about the sights to see in Rome, and then they get off the plane and told that no, they're going to Holland instead. And Holland is still nice, very lovely, in fact, but not what they were planning. It doesn't have the glamour and glitz of Rome, but Holland is really a wonderful place to be.

The flowers are still lovely. I'm glad they are there. But they are not Rome.

Saturday, April 19, 2008

Maybe

Maybe it's that I worry too much.

I've always been a little anxious. In recent years, I've grown little suspicious, particularly if things go easier than I expect. I'm usually uncomfortable if things seem to be going well. Lord knows I was still a little worried that something would go wrong (especially after 3 losses and my other "conditions"), but behind it, I felt good. I loved the idea that I was pregnant, that we would have our sons -- even if I was sick, and so sick and tired of being sick.

I recall actually thinking, Well, I'm almost 17 (?) weeks now, probably things will be okay. But at the same time, I was trying to push away the thought of that one blogger I had read before I was pg, who lost her daughter at 19 weeks. (She went password protected after trai.nwreck.ing; I never got to hear the rest of her story.)

I recall actually thinking, Wow, I have a great marriage, I'm working towards a degree I love, my family is mostly healthy, we have good friends. Yes, we have debt, we have struggles, we miss my mom. But now we're going to have our own family: our sons, our sons would each have a brother. I'd hoped they'd be good friends. I looked forward to seeing our family evolve.

I looked forward.

It feels, in my lizard brain, like I've been slapped down. Like the universe is saying, See? You did have plenty to worry about. You didn't think you were going to get this, did you?

As I write this, I know it sounds crazy. Like some neurotic coping mechanism I developed in childhood has just been proven useful. Like I'm saying I sabotaged this, or I don't deserve to be happy, to get this one thing. Like the universe is saying, this is all you get; and not only do you not get this, you get punished for wanting it.

Like I should have kept worrying.

Like I should have held my breath until I held them in my arms. Living. Breathing. Squirming.

Rationally, I know it's not true. But.

What If

What if it never gets better? (Yes, I know. Everyone says it will get better, but what if I'm so damaged I can't? What if I'm so fucked up anyway, I'm just not strong enough? I have moments, hours, sometimes a day or two where it's not so bad, but hitting the ground hurts each time hurts as bad as the first.)

It took me so long to get to a decent place, mentally, emotionally. I'm so afraid I'll never get back there.

I know I won't be the same. I know that. But what if I don't like the person I've become? I'm already uncomfortable in my own skin. The world feels like a minefield. And I'm blind and groping around on all fours. I feel everything, and little of it good. Every rock, every thorn. The holes that knock me off balance. I'm so tired of it. I can have a good day, and then there's the hole. There's the mine.

What if I never regain a sense of trust in the world? In myself? It seems the circle of safe people has shrunk. And continues to shrink.

When we first lost the boys, I couldn't wait to get pregnant again. Now the idea scares the hell out of me. And the idea of not having more children scares me just as much. And the clock ticks. What if we run out of time before I'm ready?

I've always wanted to raise my children to believe in the good in the world, to trust in people. What if I can't do that now?

Friday, April 18, 2008

Choose an Identity

A letter I submitted last week to my graduate school petitions committee:

******
Ms. Administrative Person
The Graduate School
The University
Administrative Hall
Smalltown, Midwest 12345

Dear Ms. Person:

Thank you for helping me facilitate and expedite my request for an extension of the completion dates for the Incompletes I received in the Fall 2007 semester. The classes for which I received the Incompletes are listed below:

((two doctoral level seminars I have no brains for at the moment))

These courses represent 6 of 10 hours I took last fall, in addition to my TA responsibilities for teaching a section of (EDCore Course) I was not able to complete these courses because I was ill to varying degrees for virtually the entire semester with hyperemesis (nausea & vomiting) due to a twin pregnancy. Over the course of the semester, I was hospitalized 6 times overnight for re-hydration, and IV anti-emetics and vitamins.

I expected to be able to complete the work for these courses over the winter break and early in the Spring semester, but my water broke (pre-term premature rupture of membranes) at almost 20 weeks gestation on December 25, 2007. We found that one twin had died and I was forced to deliver my second twin 10 days later at almost 21 weeks, before he was developed enough to survive.

Following the delivery I developed an infection due to retained placenta, and had to have a D&C two weeks later, which required weeks’ physical recovery, in addition to the emotional recovery my husband and I were challenged with. Further, I broke my arm on the ice on the way to teach my class this February. Thankfully, this required little physical intervention to heal.

I am currently teaching a section of (Same Core Course) in addition to 10 hours of coursework (1 course, 2 independent studies and a teaching practicum). My Chair and the (Dept) faculty have been extremely supportive, but due to all of these circumstances I feel it is not possible for me to complete the work for those two classes in the allotted timeframe.

If given this extension, I plan to work closely with my professors in these classes to ensure that my work gets completed in a timely fashion once this semester has ended. I expect that I would be able to have this work completed by July 1, 2008. I am currently under the care of 2 medical doctors, a therapist and a grief counselor who are working with me to support my physical, mental and emotional recovery from the events of the last several months.

Thank you for your time and consideration of my request. Please contact me with questions or concerns at the email or phone number listed below, or by mail at the above address.

Best regards,

STE
******

Who is this person? I read this letter, and I think, what a freaking nightmare. Even as I hem and haw about withdrawing this semester, I think, What the hell is this? Who is this person and why is she even attempting school? And why do so few people at school seem to recognize the impact of the last six months?

Why doesn't she recognize it? All she can say is, this isn't me. I don't like this, I don't want this. No, not me. Please, give me back my old life, please. Please.

The Nile is nice this time of year. Have you met the queen? She is me.

*****
Who are you now?

Thursday, April 17, 2008

Wake Me about Half Past May

Took some Ambien last night, earlier than usual, hoping to prevent or reduce the late evening anxiety that I can't seem to rid myself of. By 11:30 or 12, I was positively loopy. I had to work to focus my eyes on the computer screen. I had trouble walking steadily. I think I might have giggled.

Held myself up long enough to brush my teeth, stumbled into bed and passed out. Hard.

It felt so good. To just lay down, not feel anything but tired, and then nothing. Not even sleep washing over me. I dreamed, but I don't remember what the dreams were about.

God, it was good.

Since I came home from the hospital without the boys, I've just wanted to induce some sort of coma. Some non-conscious state, where I wouldn't feel...this. All this. You know.

I will admit to eyeing the ambi*n, and the a*ivan every now and then... wondering. If I accidentally spilled too many pills into my hand. How nice it would be not to feel this way anymore. Those thoughts hadn't really crossed my mind in quite some time. And really, I would never do anything like that. Even clinically depressed at 13, I never considered anything...permanent. But the idea of some relief, for a little while at least, relief would be so nice.

It's getting bad again. I am having more non-weepy hours than a couple of months ago. More waves of something resembling concentration. I even laugh sometimes, and sing along to the new SB album I got. But it doesn't last long. And when it stops, when the good hour comes to an end, I can feel myself start to fall. I can feel the sanity ebbing, my posture getting slouched, my throat getting tighter. And then I fall. And I fall hard. Hard like January and February. Hard like it's too much work to go downstairs and make something resembling dinner. Hard like taking Ambien at 9:30 feels like an awesome plan. Just knock me out.

I've always suspected I could very easily become addicted to drugs or alcohol, because I seem to be a creature of habit, especially if something is physically soothing. I never started smoking, partially because of this (partially because I had gross early exposure). I love the feeling of a couple of glasses of wine, but I have little tolerance, and somehow I wind up driving a lot. Margaritas are yummy. But I somehow always talk about how I'd like a drink (or a pill) more than I actually take one. Maybe I just feel better knowing it's there if I want it.

In the last 4 months I've come to understand how one could become addicted to any number of controlled substances. I've understood the wish to just end everything, just to be rid of the pain. Almost. I don't want to end my life. I just want my old one back. I want this one not to hurt so much.

The Ambi*n, though. That's tempting. Just knock me on the head and let me be out of it for a while. Wake me when I'm better.

Tuesday, April 15, 2008

Self-Preservation **Updated**

Julia had an interesting response to my post about my seeing my sister hugely pregnant. I started to comment but (for a change) it just got too long, so here it is. I think it's helpful for me to sort this out, too.

She says:
shouldn't it be your decision to see or not see your sister? Is she trying to protect you or is she trying to not make it awkward for herself? Or did you tell her previously that it would be hard for you to see her pregnant? Even if that's the case, it should still be your decision. If you want to go, you should go, and she needs to do what will make you least unhappy.


It's really interesting that you pose this question, as my sister (being the oldest) generally handed down her "opinions" as direction. If that makes sense. I was easily guided and just followed along. Things have changed, though I am in a vulnerable state these days.

When she first got pg (with twins), we were able to talk about this stuff (it amazes me how much), and I told her that as things progressed it would be harder and harder for me. Especially seeing her. At the time of the bridal shower, she will be about 10 days beyond where I was when I delivered, likely looking hugely, gloriously pregnant. I believe, given our early conversations, that she thought it would be upsetting for me.

I was smallish my whole pregnancy (even though I showed at 12 or 13 weeks), even with twins, because I was sick the entire time. I gained no weight. I lost it, in fact. My sister, after 5 years of infertility, has not been sick once during this pregnancy. Not once. And she has said that she is constantly ravenous. I expect that she is showing, and plenty. Probably glowing.

The shower would also be the first time I see my extended family (only the immediate were here for the delivery). She will be carrying what is (now) expected to be the first (living) grandchildren, particularly poignant, as my grandmother is still alive and my mother (her daughter) died seven years ago. TONS of family weirdness. How do they be happy for her and sensitive to me at the same time? I'd say that's got to be impossible.

The bride's family will completely ignore the fact of my dead children. I have yet to hear from her since we lost them. (Talked to her once through my brother's phone when he was here before the delivery.) The bride's sister will bring her 3 or 4 year old, and who knows who else will be pg. We are not enthused about this match, if you couldn't tell.

At the engagement party, my sister and I got each other through. We didn't have a great relationship until a few years ago, and it was really cemented by enduring infertility. Part of the tears are not just about the party. I fear we are losing ground in our relationship.

When she said, "I don't think you should see me," I fell apart. Crying hard on the phone. But I think it was because she confirmed what I already suspected would be the case. And really, it would be hardest on me. The reality of her healthy pregnancy and my doomed one. The inescapable truth.

**Updated**
Just to clarify, throughout this pregnancy, my sister has been extremely sensitive to how difficult it is for me. And just as her announcement was couched in terms like "I've already told S about this." I think she will continue to be sensitive. It's going to be a ton of work. For both of us. I think it sucks for both of us. I hope to be up to calling and congratulating her when her children come. I hope to be able to visit, and spend time with her, and rejoice in her family, with her and the rest of my family. I like to think it will happen like that. The way it should happen. I hope we're both strong enough. I told C the other day that I thought it would be a year before we could see my family (with or without A) unless we have a healthy pg in progress. I hope it won't be that long.

Back to Our Regularly Scheduled Programming

Sorry, folks, no kitties today.

Just got home from therapy to find in my mailbox (besides another bill from the local hospital) something in a slim envelope from the big city hospital we delivered in (UC). From the "Spiritual Care" department. Great.

((Before I go any further, let me just reiterate that at the hospital, we specifically asked for pastoral care/clergy to NOT come by. I know many people find a great deal of comfort with religion and "spiritual" guidance during times of stress -- and everyday life for that matter. That's great. Excellent. Whatever gets you though. But it's not for me. It's never been for me. ))

So, I sit down with my really-bad-for-me-lunch and open it up.

Dear Ms. E___,
We wish to express our sincere sympathy at the death of your little one.
(Miscellaneous theoretically comforting thoughts, grief is natural, blah blah, we grieve because we love, blah blah blah, our prayer for you, blah, God's love, etc etc. )

On Sunday May 4, 2008 your loved one will be remembered, along with other patients in a special memorial service. Blah blah, practical information, etc., if we can be of further help, blah blah blah.

Sincerely,
The Spiritual Care Team
Big City Hospital

I know, I know, it's common for hospitals to have memorial services, especially for "little ones" who didn't make it. Clearly, this is a big hospital that treats a lot of patients, and they see a lot of loss. I'm sure this one memorial service is "remembering" every patient who died in the last year.

There are a few things about this that piss me off right away, others that pissed me off the more I think about them. (And yes, I'm just feeling angry today. Very angry. That's another post for another day. Or later today. We'll see how mad I am.) I'll qualify as I go.

First thing, right off: the death of your little one. Which little one would that be? The one who died inside me? Or the one who died in my bed while I was literally out of my mind with pain, grief and horror? If you're going to start what's supposed to be an even remotely comforting letter, how about getting the decedent right? Or decedents. Which leads me to the next thing:

This letter was mail-merged within an inch of its life. Clearly. And, you know, being a big city hospital, as I said before, there are probably a lot of losses. Don't they have enough underpaid clerical workers to divide up the sympathy letters to be even a little specific? How about a name or signature (or signature stamp, for pete's sake) instead of "The Spiritual Care Team"? Do you think they have jerseys, or jackets with that on the back, like a bowling team? Is there no one person I could call, should be in need of Clerical help with this matter? Very personal.

(By the way, when I was trying to get the records and pictures that were taken of the boys, I was passed through to no less than 6 offices over 4 days. Three days after I gave up the social worker called me back.)

I considered, for a moment attending the service. Maybe it would be comforting to meet others who had similar losses. Except for a few things. This was for everyone who lost someone at the hospital. Would they divide us into deadbabyparents, orphans, widows and so on? I doubt it. And seeing as this letter was sent by the Spiritual Care team (Go Team!) and the service would be held in the chapel, it would, no doubt, be a religious service.

Again, if this works for you, great. If not, then what? What if I don't find comfort in this kind of organized way? I guess I'm on my own. We're on our own. Is there no other way to comfort grieving patients?

Our local hospital also holds a service, though the grief counselor says it is not really religious, and it's just for those who've lost children or babies at the hospital. Technically, we count, I guess, even though we didn't deliver there. It's a local effort and the OB nurses all participate -- on even sings. We are still considering going to that one. We'll have to see. It's being held in a local park the Sunday after Mother's Day. The day before the boys' official due date. I guess a lot if it depends on how functional we are.

Did any of you go to an organized memorial service (by the hospital or some other organization)? How was it? Are you glad you went, or do you regret it? What was it like?

It's amazing how not helpful people can be, even when they make the effort. Even when they should know better.

*****
We are still trying to figure out something to do for the boys. I know that we need to memorialize them in some way. It's just harder to figure out what to do than we thought. Hard to talk about even. I asked my dad about getting a marker at the cemetery where my mother and most of my family is buried, so that it would be place we would go anyway (as opposed to having to come back here to see it, years from now). My dad said he'd look into it, but we'd have to get two whole graves just to bury their ashes there. It didn't seem right. I asked him again, and he seemed kind of put off, maybe he doesn't want to think about it anymore, but he said he'd look into what our other options might be.

I would even be happy (well, you know what I mean) just to bury their ashes alongside my mother's grave. Just dig a hole and put a plant over it or something to cover the rough dirt. But that would mean no marker. Not there, anyway. I really want something...permanent, something that will... I can't think of the word. Something that will remain. So that others might know they existed. That they were loved.

After my mother died, the preschool (a Hea.d.S.tart) where she was a special education teacher for 10 years had major renovations done. And they put up a plaque for her, honoring her in some way. I don't remember, but it's in a prominent place. I have these fantasies of making a huge donation or contributing to some playground equipment, or something for the school or the kids there. And there could be a plaque saying something like, "In memory of Sharon and her grandsons, Jacob & Joshua." Or something. Or call it J&J's Playground.

Of course, it's just a fantasy. And we need a realistic way to remember the boys, to put something solid in the ground, or somewhere, to remember them. I want this.

Monday, April 14, 2008

We interrupt your regularly scheduled moping for...

Kitties!!

In response to my earlier post, Newt wisely suggested that in order to allow my husband and me to properly grieve, we should really put the cats to work, make them earn their keep. Ah, very wise, my dear Newt. Unfortunately, the kitties have very busy schedules, as you'll see see from the pictures below -- just a glimpse* of what their days look like. **Warning self-indulgence looming ahead.**

Hazel, hard at work being Kitty in a Drawer:


Abby, casually laying across my hip, making the computer inaccessible:




There there is the X-treme Snuggling competition to prepare for:



And then resting up after a long hard day:


Yes, our girls have it quite rough. Perhaps one of these day I'll ramp up the doting kitty-owner factor/nausea and regale you with tales of their sweetness.

In the meantime, here's Ball of Cat:



We now return you to your regularly scheduled mopey posts. Thank you.



*I apologize for the large picture files/slow loading -- I'm still learning about this new-fangled "blog" thing.

Well, that sucked.

Freaking weekends. I'm seriously considering just not answering the phone anymore.

Not picking up the mail. Never leaving the house.

I'll just sit here in bed with my fingers in my ears, singing lalalalala...

That way no one will say anything stupid or hurtful. No one will show how much they don't understand. Or care.

Won't have to worry about clean clothes, or bathing unless I feel like it. I'll pick up the house when I feel like it. I can order in food and groceries. And my drugs.

Lalalalala...

That'll work, right?

Sunday, April 13, 2008

More and more and more

She said it. "I don't think you should see me."

My sister and I were talking about her trip to NY to see the family, to finally take my dad out for his birthday. We were talking about the upcoming surprise bridal shower in NY for my future SIL at the end of May. I was telling her that I was trying to decide what I should do. She was saying that she figured out that she would be able to go. But...

She said it. And it broke my heart all over again. Little tiny pieces. For so many reasons. Loss after loss after loss. And I cried, there on the phone. There was nothing to say.

So assuming she'll be allowed to travel at 21 or 22 weeks, she'll go to the shower. And I'll go to the wedding, since she won't be able to then.

*****

I'm so tired of crying. Of wanting to cry. Of only having bad, sad things to say. Sad, pitiful posts. Sad, angry phone calls. Sad, anxious trips out into the world. I'm tired of feeling pathetic. Sad-sack. Evoking pity. Or judgment. "god, that sucks" "oh, I'm so sorry" "wow, it just keeps coming"

I don't know how to push through this. Images of mud. Of wet sand. Of heavy waves. Of walking against the wind. I'm too tired of this to compare it to something. those are just the images that come to mind. Someone's fist in my chest, keeping me from moving forward, keeping me in the same place, with the same sharp ache. Right where I live.

I don't know how to do this anymore. I don't want to do this anymore. I just want to be numb. I just want to stop feeling this way. I don't want this life.

Saturday, April 12, 2008

35 Weeks, 0 Days

I spent today sleeping. Again.

I need to stop thinking about myself in terms of what "would have been." I would have been huge. We probably would have been talking about induction or C-section. I would have stopped the lov.enox and switched to the hep. Picking up the last few things. Coordinating with people, who would come visit when. Watching my belly as my boys squirmed for what little room there was left.

I need to stop.

*****
Almost every Saturday, I sleep too late. Get up, eat something. Putter. Take a long nap. Wake again and find something for dinner. Take drugs so I can fall asleep before 3am.

Every Saturday, I think how many weeks I would be. That's when the next week would turn. The IUI was on a Saturday. I told my dad on a Saturday (at 4 weeks). Saturdays were usually the worst puking days.

It's more than 14 weeks since I delivered. I know I need to stop. It's like re-opening the wound. But somehow... I don't know. This is really all I have left.

Friday, April 11, 2008

Expecting

(First, thank you for your comments on my freak out yesterday. It means a lot.)

I have about 17 posts rolling around in my head right now, but in the wake of the last 24 hours, I'll just get this one out.

When did you realize that your parents were not perfect? That they did not have all the answers? Or, instead of parents, a trusted relative, caregiver, teacher...? I don't have a specific memory of my disillusionment about my parents, but one small one with my sister. I caught her in a lie, really a very small one about who left the TV on, I think, but I remember my incredulity. As a younger sister, I did the traditional "looking up" to my sister. I wanted to be like her -- hell, I wanted to be her for a long time. But I remember stopping -- literally stopping on the stairs in my house -- and thinking, Wow. She's lying. She's not perfect.

I lived a lot of my life believing in the fairy tale that people were honest, and did their best, and that their best was usually right. I took a lot on face value, and continued to be surprised and hurt (and I cringe at this naivete) at others' deception, lies and fallibility into my 20s. Yes, I was the one in the rose colored glasses. If I were the type to put bumper stickers on my car, I would have had one that said "it's all good." Or, "everything's gonna be all right." Even if people screwed up, certainly everyone meant well, right?

One of the biggest lessons for me in my 20s was that *everyone* is fucked up in his or her own way, and that some people are better at hiding or disguising it than others. The idea that everyone had their issues, and I was not the only one lacking in confidence or direction or excellent credit was HUGE for me. I wasn't the only freak.

It was in my 20's, the latter half, that I really started to come into my own, "blossom" as several family members -- and my husband-to-be observed. (If you've never read the children's book "Leo the Late Bloomer," do. So sweet. Makes me cry every time.)

It was around 30 that reality started to really hit. I took a job with a dot.com just before the bubble burst. The job sucked, the guy I had worked with at a previous job, who recruited me, treated me like shit and essentially lied to me. Then my mother was diagnosed with aggressive, fatal ovarian cancer. She was sick the whole summer of my 30th birthday, but didn't know it. The doctors thought she had a UTI for two months. And she didn't push, just thought she felt crappy. Ultrasound at her annual showed a huge mass on her ovary. She got surgery, she got chemo at one of the premier cancer centers in the country. Didn't matter. Didn't work. The head of gynecologic oncology at this cancer center essentially washed his hands of her, and she died a couple of weeks later, 5 days after starting hospice. 9:15am, May 4, 2001. Hospice screwed up, in several ways and didn't stay with us while she was dying. The nurse gave us crappy advice, and then left.

I remember driving around Boston, on some errand during the time my mother was sick and seeing a car with a bumper sticker that said "it's all good." And I thought, Fuck You. No it's not. And I realized I had changed.

My sucky employer continued to be sucky. I left, they said I owed them 2 days of pay (about $300) because of all the time I took off while my mom was sick (she was still alive at this point). Then after she died, my new employer gave me 2 months to be sad, and then said I really should be doing better by now.

Then it was September 11. In Boston. My dad had worked in the World Trade Center and across the street before he retired a couple of years earlier. He still had friends there. My aunt and uncle lived uptown. More loss, more pain.

I left that job, too, and found myself, and got married and found myself some more... We moved to the mid-west for grad school. My idea of reality, of people's "goodness" or fallibility broadened.

I could list 5 experiences off the top of my head that opened my eyes about the fallibility of modern medicine, just since 2001. trying to get pg, trying to stay pg, trying to be healthy and pg, trying to figure out how to save my boys, JK's dad's treatment, K's regional cardiac treatment vs his NYC treatment. Hell, even the vet here is responsible for 2 months of my dearly departed cat's suffering.

In all this, I've railed at people to advocate for themselves, and ask questions and push doctors. Advice easier given than applied. I look back at so many experiences and say, "why didn't I ask? why didn't I push?" And then, I think, "Why didn't the doctors?"

In this day and age of technology and shrinking worlds and specialization, I think medicine (at least for me) still is one of those fields I desperately want to believe in. Science. People expertly trained, people we can trust to take care of us. Whom we don't have to constantly question or push. People who are supposed to treat us with respect and who will work hard to make sure we get the very best individual treatment, who will be careful in noting important information. Who will be proactive in our care. People who will advocate for us based on their expertise.

Do you know how many people said to us, "if only we had a crystal ball"? Crystal ball?? Are you fucking kidding me??

I guess, in a way, I want to trust doctors like a child should be able to trust his or her parent, to keep us safe, and do what's best for us. Maybe this is the last frontier in growing up. No one has answers. People generally do their best, despite their own imperfections and neuroses. I have to depend on myself to guard against those imperfections and neuroses to take care of myself and mine. There are very few safe spaces in the world, as a grown up. Figuring out those spaces, and trusting in them is possibly one of the biggest lessons of this period in my life.

It occurs to me that the womb should be one of those spaces, too. Wish I could have provided that for my sons. One of these days I'll forgive myself for that, I hope, just as I forgave my own parents for not being perfect.

Thursday, April 10, 2008

Some words you can't unread **Updated**

**This is going to be ugly and a little graphic. Possibly not suitable for all viewers. **

Got the records from the hospital today.

The ones from the initial consult and from the delivery. It was probably...200 pages, doctor's notes, nurses notes, ultrasound and blood test results. Not too bad.

Of course I read them. How could I not.

Part of today was kind of good. It was up and down at school, but ended mostly up. Well, more up than down. Relatively. Up enough that I thought, okay, this will be hard, but I can read this. I want to see what happened, according to the records. It wasn't too bad, at first. Much of it was just as I recalled. But.

Some holes should not be filled.

Patient found to have delivered infant. + cardiac activity...

Jacob was born alive.

On the records, the time noted was more than 20 minutes after the time of birth/death noted on the infant bereavement record. How did they know what time he was born? Did they guess? Did they lie? Was a nurse there for delivery? What happened in the 23 minutes between the so-called time of "birth" and the doctor entering the room?

Did my child lie there dying, on my bed, between my legs -- alone -- for 20 minutes while I was oblivious?

When did they tell me it was time to push? Who was it? Which child? It's like a freaking nightmare.

And I don't know if I can ever forgive myself.


**Updated**

Spent some time talking with C, who clarified some things for me. Events and their sequence. There were nurses with me, one went to get the doctor. We were told the boys did not survive birth, but no one mentioned any cardiac activity, so I don't know if it was a few moments or minutes or what. C was focused on me and he was not prepared to see them, certainly not while I was not "present."

Turns out I really have very little memory of that night, even less than I thought. C said that I worked really hard to deliver the boys. It wasn't just a few pushes (I only remember the first one or two). It's really just glimpses for me. Like a dream. Really, a nightmare.

C thinks a lot of why I passed out, and he passed out was just sheer, physical exhaustion. It's hard for me to believe. I don't remember. Perhaps physical on top of emotional exhaustion. Doesn't really matter. I was still not present.

I hate not knowing. I hate that I wasn't able to be present for my sons. I hate... well... I hate all of it.

But you knew that. And you know it.

Good to know that I'm not alone. It's a start.

Wednesday, April 9, 2008

At a loss

That should be the title of this blog. This time I'm just at a loss for words. I just...I'm just so overwhelmed by how...horrible this all is. And I want to reach out and support those who are also suffering, but I just...can't. And I hate that. I can't even put words together for more than one comment a day. And even my comments are self-centered and...I don't know. Please know I'm out there and I'm reading.

I'm so moved by the pain and guilt and anger and frustration and exhaustion and fear and, well, yes, even some of the beauty that's out there. In the 'verse. And in the verse.

Everywhere I look there are babies. Someone else in the department who gave birth in February came in for a meeting with her infant. The people across the street. Down the street. I can't get away from it.

I just sat down and sorted through all the bills from the local hospital (MHMH) and the local medical center and the radiology and the er doctors. Haven't even gotten the bills from the big city hospital (UC) yet for the initial visit and the delivery. I almost typed birth. What the hell is wrong with me. Silly me.

All the visits for fluids, the trips to the er for fluids, all the prenatal testing -- my portion, my copay is about $1500. That's not counting the day my water broke and the time spent at MHMH getting examined and "treated" and ultrasounded and screwed around with and d&c'ed. Not counting the costs at UC, it's about $11,000, before insurance. Can't wait to get the co-pay on that. And the bills from UC. And really, what's the rush. It's only been 14 weeks.

If I had decent life insurance I would say I'm better off dead, since at least my bills could get paid. As it is our student loans are as much as a cheap house out here. More than a mortgage for just one of our totals.

It looks like I'm going to do a medical withdrawal for this semester. There's just too much work to make up, too much I missed out on while I was puking and/or crying my eyes out. It doesn't look like I'll have to refund my assistantship, or my stipend or my tuition waiver. I'm more behind now. Keeping us here longer. I will probably take the summer off from school, but how am I going to bring in any money? I contacted an old employer, my supervisor for one of my assistantships to see if he had "heard of any openings" for the summer. We'll see. Right now, there are very few jobs I can see myself doing, but my old job is one. I was happy there. Happy enough. The good will and lower intensity of work would probably be good for me.

Even though I know it's probably the right thing, the withdrawal makes me feel like a failure. Something else I can't complete. Can't get through. Even though I know I can't, and for good reason. My chair asked me first about going part time in the fall, then how would it be to take the year off and then come back? Christ. Everyone had great hopes for me. I did, too. How many more people can I let down, can I prove wrong?

Goddammit.

*****
I have a more human post coming, less mopey. Right now I'm just wanting to curl up in a ball. But I have to go to class. So I can say I attended today. So I can cry in front of my classmates. Or maybe I'll just get that out of the way and cry now. If I show up with red eyes and pale, blotchy skin they'll be extra sweet to me. I can hide in the back.

It amazes me how much this continues to suck. It's like I'm stuck in an alternate reality, carrying this huge, sharp weight around my neck. Sometimes I forget it's there, but not for long. And the bruises it leaves, the welts, are never going to heal.

Monday, April 7, 2008

On permanence and remembering

This post by Julia at I Won't Fear Love moved me. It reflects my feelings, and a lot of what I've seen around this corner of the 'verse. Just wanted to share her thoughts, in case you hadn't read it yet. Thank you, Julia.

Sunday, April 6, 2008

Feeling the Void

(I hope this is okay, because my response would have taken up too much room on your blog...)

Dear Antigone,

First, I'm glad to see you seeing a new doctor. If I can put my two cents in, any decent doctor would want you to come back in (maybe after a month) to discuss how you're feeling on them, adjust the dose and/or change 'script. And ask and answer questions about how you're feeling on them. Maybe your GP? Maybe a shrink? To answer your question, my gp changed my script to Le.xap.ro because in the time I had been taking the Z (a couple years) I had problems with increased dosage, and I've been experiencing increased anxiety & trouble sleeping.

I hope that you come to find some peace with the sequence of events. I echo everyone else, in saying any loving dog owner would have done the same thing. And what Tash said, too.

In my case, for the first month or so after i lost the boys, I was *sure* that I had been leaking, and either ignored it, or didn't know it. I've come to something resembling peace with the idea that if I was I didn't know it and I did the best that I could. (The peri said there was no evidence of long-term leaking, too.) But this idea caused me -- and I can feel my face flush as I type this -- no end of misery and pain. Panic and uncontrollable sobbing. Pain worse than anything I experienced at the hospital. And there's no morphine for this kind of pain. Maybe your lack of affect is your mind's way of protecting you right now? Just like we both have spotty or little memory of the night we lost our boys. Some things are just too horrible to feel, to remember.

I don't know what's changed in how I deal with this feeling of responsibility, maybe time, maybe some denial. Maybe it was just too much to face, especially without direct confirmation. I think what Tash said was probably true, that this was likely to have happened anyway. As horrible as it is to think.

I wonder the same things. I have a hypercoagulation disorder, as well as the protein S deficiency. I missed doses here and there, I couldn't take the baby aspirin because it made me throw up. Was that spotting at 18 weeks that came back around 19 weeks just spotting, or was there fluid it? Was Joshua already gone by then? Was the second heartbeat just the echo of Jacob's?

I still have guilt and questions. It kills me not to know. It hurts even more to know it might have been something I did or didn't do. As I commented, as so many have tried to tell me, I still try to remind myself that *I did the best I could at the time.*

And so did you.

Sincerely,
S

Saturday, April 5, 2008

Stupid Stupid Stupid

What the hell was I thinking? What the hell is wrong with me? Do I enjoy torturing myself? That must be it because I have no other explanation. Goddammit.

Did you know that g.mail saves chats? Well, I learned this a few weeks ago. I just checked my email and found myself clicking on the chats link. Oh, God, why am I such an idiot.

I don't use chat a lot, mostly just with my friend S and my brother. "Found" myself reading through the chats from November and December. It's amazing how much is documented there.

*How pukey I was.
*Talking about the NT
*When I started to show around 12 or 13 weeks.
*Talking about coming out to people, enjoying sharing the good news.
*Visits overnight in the hospital to get fluids.
*Calling Dr. Coldfish late at night because he was on call, him being kind of a jerk.
*My insurance refusing home health care for fluids.
*Waiting for the amnio results.
*S telling me she was pregnant. I was the first person she told.
*Getting excited about being pg together.
*My feeling the first undeniable movement "thump!" and realizing the week or two of flutters were really my boys moving around. That thump was 12/10/07. About 17 weeks. "Went from zero to bawling in 10 seconds flat."*Being able to eat; cereal and milk -- craving the milk, drinking it straight, which was weird because I never really liked milk.
*Noting that there seemed to be less movement, but I hadn't been feeling anything consistently, so I dismissed it.
*Spotting a little around 18 weeks.

That was the last chat with S before my water broke not quite 10 days later. It occurs to me that I noticed my belly seemed less round when my dad was here the next week.

I know, I need to let it go. Once I get started, I start to recall in detail all the things I "did wrong."

Why do I do this to myself. I was....I was going to say I was feeling better, but that's not true. Maybe I was too close to feeling okay. Reading all that brought back how happy I was -- despite the nausea and everything else -- how happy and excited I was. How hopeful and scared. And happy.

And I know I'll never feel that again. Even though I was still crossing my fingers, I felt real hope, almost confidence, that things would be okay. I'm never going to be able to trust that ever again.

I stopped. I closed the mail window. And then I felt it. I felt the panic and heartache. Goddammit.

Remembering the joy makes it hurt that much more.

Also

Finding the words to respond to your kind comments has been difficult. I hope to respond in posts, or comments. There are several ideas I'd like to explore or talk about further.

In the mean time, I'll just say thank you. It means a lot to know you're out there.

Neither here nor there

I'm all over the freaking place lately. Up, down, left, right. I can't finish a sentence. Lose track of words. I can't compose comments for some of the really wonderful, emotional and thought-provoking posts* I've been reading. I find myself writing, re-writing and then often just deleting them because they're off track, incomprehensible or just self-centered.

I cried publicly 3 times yesterday. The first was in the doctor's office. The low dose of Z I've been taking is just not doing the trick, and after 2 weeks of prodding by my therapist, I made an appointment.

My doctor is a good guy in a local family practice. He's probably around my age, smart, maybe a little dorky (I like dorky). Was very sympathetic when I was struggling with RPL. He noted that it had been a long time since I had seen him. When I told him what happened, he was appropriately concerned, I guess. Very kind. I started to cry talking to him, but was able to pull it together. Continued to give him some info about what happened.

And in the next room, a baby started to cry. Loudly.

That was it. The tears came. For some reason, hearing that sound is even worse than seeing them. It just rips my heart out.

I know sensory input can imprint during times of stress. Smells, sounds, touch.

The hand-held doppler. Two heartbeats.
Fetal heart monitor, thumping away in the next room. Always in the next room.

The sounds of my mother's breathing on her last night. The death rattle.
The sound of the dirt hitting her coffin.

There's more, but even writing this makes me anxious and sad.

Sometimes I feel good for an hour or two. An afternoon, even. And then anxiety rises.

I am never comfortable.

I'm so tired of this.

*Among others -- there were so many I ran out of words to link to.

Thursday, April 3, 2008

Three months

Has it only been three months?

Three months already?

Three months ago today I went into the hospital to induce labor.** Right now, we were probably waiting for the epidural. Waiting for the pito.cin that didn't work.

There's probably a long post in me about this, the whole sequence of events. Maybe I'll write it later today. It feels too much to write about, too long, too many things. Aside from all the other horrors of those two days, there's one thing that sticks out. One sensory event that seemed to persist that day: The sounds of the fetal heart monitors through the walls. The sounds of other people's live, likely healthy, babies waiting to be born. Waiting to take their first deep breaths and scream. Waiting to be bundled up and cooed over, warm and soft and sleepy.

We knew Joshua was gone. Jacob was, for all intents and purposes, dying without amniotic fluid. But his heart was still beating. We knew his chances at life were slim:

-- make it to 24 weeks without infection
-- make it through birth
-- make it through likely severe brain bleeds,
potentially causing blindness, deafness, cerebral palsy,
major cognitive impairment or coma
-- make it through likely nec.rotizing entero.colitis
-- make it through the ventilators on poorly developed lungs
due to no fluid for practicing breathing
-- make it through weakened, undeveloped limbs due to
no fluid for practicing movement

IF we got to 24 weeks. If he lived that long -- a month -- inside me with no fluid. If I didn't expel him. If neither of us got an infection. If I didn't develop a placental abruption and If I didn't develop a blood clot (not wholly unlikely considering my thrombophilias).

The doctors, particularly the ragged neonatologist, gave us about a 5% chance of having a child without a severe disability, if he in fact lived.

I always wonder about that 5%. Message boards are filled with stories of people who made it despite the odds. Who went 28 or 32, or even 36 weeks with no fluid. And their babies turned out fine, supposedly. In my family, we always do everything possible, push the limits, try everything. But it seemed that doing that would only cause Jacob pain. C and I had many difficult conversations about what to do. Lots of tears. I love and understand my husband's process in this. I can't speak for him.

What I struggled most with was what would cause Jacob suffering. Was it selfish to try to force him to develop and live in a world that I could not prepare him for? I'm not saying that right. I could not give him what he needed to survive, thrive, in the outside world. I could not bear the thought of him struggling to breathe, suffering that feeling of trying to get air in his underdeveloped lungs. To undergo procedure after procedure, fighting off infection, dealing with surgeries, pain of recovery, of brain aneurisms. A body that would not let him live, not let him connect with others, to get joy out of life.

A body that would, in all likelihood, not survive the nicu, despite all the interventions.

And yet. I still doubt. I still wonder. I crave that child with every fiber of my being. More than his brother? I loved them both. But Joshua was gone. With Jacob, maybe, we still had a small small chance of being his parents. Of tending him, taking care of him. Getting to know him outside of my body.

It felt selfish, though. To put him through the ordeals of all those obstacles for his entire life so we could know him. His pain and fear were what I feared most. The panic of suffocating. I just didn't want him to hurt. I didn't want him to suffer.

When we talked about inducing labor, the question I couldn't seem to get answered was how he might experience it. Would it be painful? Scary for him? Long faces told me that at not quite 21 weeks, he would likely not survive a vaginal birth or if he did, not for long. I knew that, but what would he experience? If he did live for a few minutes, would he suffer? If he died inside me, would he feel pain? Would his heart just stop?

Maybe no one has the answers to these questions, which is why no one ever really gave me one. I've noted this before, but one of the doctors, Dr. ColdFish had one wise thing to say in all this: You will probably never be more than 51% sure you did the right thing. You will always wonder.

Three months out, and goddammit if he isn't right.


**This post touches on difficult decisions that not everyone agrees with. I am fine with agreeing to disagree, but I don't want to hear about what you think we *should* have done. I am glad that I have company who respect the difficult situation we were in.**