March 08, 2014

OUT WITH A WHIMPER

I truly thought that this blog would end with me having a second baby.  I thought I'd win.  I thought I'd birth a baby and then drop the microphone, yell PEACE OUT, and exit stage.

But the blog went out with a whimper instead of a bang.

We are good, a year later.  Content.  Finding silver linings in not having interrupted sleep most nights and being done with diapers and bibs and sippy cups.  Trying to figure out how to prevent Little Emperor Syndrome.

BabyGrok just turned 4 last week.



And life goes on.

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July 13, 2013

INFERTILITY NEVER ENDS

"Is she your only child?" the new neighbors asked as we were getting to know each other.

"Yes, she is!" I answered confidently and proudly.  For the first time, it didn't hurt to answer.  I felt good, and happy.


Four days later, I was crying all the time and trying to decide if we should go back to the agony of trying to have another baby.

I really hope this feeling of incompleteness goes away with time...

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May 10, 2013

WHY I DON'T PLAN TO ADOPT

Ever since I got back from doing IVF, people keep asking me if I will now turn to adoption.  I thought I would explain why that's not in the cards for me, and why sometimes that can feel like a loaded question.


I have been thinking about building our family for six years.  I have cried, raged, hoped, and writhed.  I have been poked, scraped, injected, and pumped full of radiographic dye.  I have bled and been anesthetized a lot.

I am exhausted.

Last week I had a consult for a second opinion on whether I could ever be considered a good candidate for IVF.  As I waited for the doctor to enter my room, I realized I was getting panicky that he might say yes.  That he might say that we should try another round or three of IVF and keep trying until we maybe, possibly, might get a good embryo that maybe, possibly, might implant and become a baby.  I realized I was not worried that we would hear bad news; I was worried that he might offer me a glimmer of hope.

I realized I was done with hope.

I have been full-steam-ahead for six years, from the moment we decided we wanted a baby.  It is not in my nature to be any other way.  If I'm in, I'm all in.  I am not the type of person who can "just relax" and go with the flow.  I tinker, I fidget, and I run tiny science experiments every single month.  And every time, I feed the fire of hope that this time, maybe this time, I have figured it all out and gotten it right.  

That hope is really hard to live with.  I realized recently that I could more easily live with my daughter being an only child than I could with that neverending rollercoaster of hope I've been living for six years.

Which brings me to my point: choosing to go the adoption route means choosing to keep living with that hope.  It means putting my name on a list and allowing myself to sit there, heart open, hope half-kindled, waiting to see if we'd ever get the call.

I cannot do that.

This choice has nothing to do with the babies themselves.  I think I could bond with an adopted baby, I think I could love an adopted baby, and no one anywhere in our families would have any issue at all with an adopted person joining our life.


This is not about the baby; it's about the process.  I, personally, cannot endure the process.  Many people can, and I marvel at their strength.  (I'm lookin' at you, dear Darla.)  I cannot.  Definitely not after the past six years.

The IVF was incredibly stressful and that was a 28-day process.  At the end of the month, you know if you have a baby or not.  If adoption worked that fast, perhaps I could endure it.  If someone showed up on my doorstep today and handed me a baby, I could run with it.  But the adoption process could mean years of waiting.  I cannot add more years to the six years I've already (barely) survived.


And I know that if I had nothing, I would be willing to endure more risk and more heartache in order to bring a child into our life.  But I have done that once, which takes the edge off of your pain.  Having one child means I do not have nothing.  I have her, and I can choose to put her first by letting her have a mommy who is zen and content instead of a mommy who gnaws at her fingernails and waits for her heart to be trampled at any moment.

I am growing OK with walking away from the struggle and the hope and the family I once imagined.  But every time some well-meaning person asks me if, now that everything else has failed, why don't I just adopt, I have to rip that scab off just a little bit in order to explain why I don't.  And I have to justify why I am done.  Whether they mean it or not, they put me on the defensive for having to explain why even though I would like one more kid, I cannot endure any more heartache or waiting or hope.  It does feel like an accusation, like they're saying that we just haven't tried hard enough, that there are avenues we haven't pursued and we're quitters for stopping now.

I busted my butt for six years, and the question implies that I am a quitter.

I wanted two kids.  I got one.  But I know other families that don't have any history of infertility who stopped short of their original kid goal.  Maybe they started out wanting four and stopped at three.  Maybe they had two and enjoyed daydreaming of a third but just decided that they were getting too old to be pregnant again.  Why aren't these couples getting badgered to "just adopt" to hit their original kid quota?  Why is it only those of us who have been through YEARS of sorrow and pain who are expected to soldier on and happily enter the completely new realm of paperwork and home visits and waiting lists and lawyers?  We've been through enough complicated crap already.  Some of us are just ready for the ordeal to be over so we can get on with LIFE.

Usually I just try to pithily explain that adoption is expensive (three times as much as my IVF), and grueling, and not always guaranteed to result in a happy ending for everyone.

This article does a great job of explaining why suggesting that couples "just adopt" is not as simple as it sounds.  Many of these stories are heartbreaking and make you realize that the adoption process is not for the faint of heart.  But this part especially resonated with me:


I think I could answer this question calmly and logically if I thought it was asked from a place of genuine curiosity or concern. But it always feels like an accusation, as if a woman who wanted children but didn’t adopt is somehow a lesser human being, or the dreaded word so often associated with childlessness: selfish.
So, instead of educating about the complexities of the adoption process, I usually just offer a neat version of the truth: that we would have, if we hadn’t already maxed out our heartbreak cards.
After five years of dealing with infertility, my husband and I did choose adoption over the expensive and evasive fertility treatments that were offered as our next low-odds hope. We quickly learned that the "millions of unwanted children looking for loving homes” is a myth and "just adopting” isn’t a matter of going to Wal-Mart and selecting a baby off the shelves.


Deciding to remain childless or to just be happy with the one you have is a perfectly valid life choice.  And I know that most people in my life are loving and kind and are just curious when they ask what our next step will be.  They don't mean any harm.  But I suppose what I want people to think about is this: asking these questions is normal and part of being a good friend...but I personally would really appreciate if friends started the conversation with "I'd love to talk to you about your journey if that's OK with you. I know you've been through a lot already and I am so impressed with your strength.  How do you feel at this point?"  Providing a really open-ended question like that -- where the person can say that they might consider adoption next, or say that they want to take a breather to figure it all out, or say that their journey is over -- puts the speaker in control of where the conversation steers, instead of being forced to discuss things that maybe she doesn't want to have to explain.  And the compliment seriously helps.  Most infertile people just want to be validated, shown that what they've been through is indeed an ordeal and that friends and family have noticed the struggle and give them a pat on the back before the barrage of personal questions begins.


And I really want to be brave enough one time to answer "Are you considering adoption?" with "Why...are you?"

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"NOT READY"

I always saw myself as having kids. I was never one of those people who wanted to be a kindergarten teacher, but when I imagined my life, I imagined a family. When my husband and I started dating, we both thought two kids was just right. And then...life happened. There was always a reason we were remaining childless. Some reasons were beyond our control (deployment), some reasons seem frivolous in retrospect (we wanted to save X amount of money before we started a family), and some reasons still seem reasonable but really weren't the deal-breaker I thought they were (I really didn't want to have a baby in Germany). And so we put it off. And even when the time came to take the plunge, we both thought we weren't ready yet.

"Not ready" is such an odd way of looking at something that later came to consume my whole world and chip away at my emotional well-being. I so quickly went from being terrified of having kids to being terrified I might not ever be able to.

I remember sitting on the sofa talking about it and being completely not ready. Scared and overwhelmed. And then one month later, as I stared in bewilderment at the negative pregnancy test and realized how much I had assumed it would be positive, I realized how silly that idea of "ready" had turned out to be. "Ready" was whatever we told ourselves we were. It was a switch that had now been turned on, and turned on full-force. Not for one moment in the entire time between that day and three years later when BabyGrok entered the world did I ever question my "readiness" again. Once you just tell yourself you're ready, you are.

What I imagine telling BabyGrok one day, or anyone else who will listen, is that now that I am an old lady, and now that I have faced my inability to procreate, I realize that I think raising a family is the whole point of us being here in the first place. To pass on our genes, our values, and our culture to the next generation. To make more people, wonderful people, to fill this earth. But it took hindsight and a lot of tragedy to realize how important it was to me.


I had the husband. I had the good marriage. I had the stable income and the nice home and the perfect setting into which to introduce children. And yet I waited...for some "more perfect" setting that I thought would happen eventually. For the heavens to open and deliver unto me an epiphany that I was now "ready" to be a parent.

I squandered the most fertile years of my life waiting for the moment when I would be "ready." Waiting for all the rest of our life to be perfectly squared away so that there were no other boxes to check or things to be done before we moved on to the next step.

I don't want other young people to make the same mistake.

The irony is that I would've had trouble creating life no matter if I started at 19 instead of 29. My DNA is crap either way. But I still would've had better chances of conceiving earlier on, and I would've hit my breaking point earlier in life and still been biologically capable of doing IVF. I waited too long to start a family, and then to compound things, I waited too long to get to my wit's end and move on to medical intervention.

What I want people to think about during Fertility Awareness Week is that most of us these days don't feel "ready" at age 24, but our fertility says otherwise. That it's a gift that waits for no promotion or graduate degree or infernal sense of "readiness."

I bought into the idea that I could wait until one day shy of 35 and everything would still be fine. I was misinformed.

What I wish I had been made more aware of is this:

Infertility and Age

In her 20′s, a woman’s chance of conceiving ranges between 20 and 25 percent each month. This is directly in relation to her relatively high number of eggs. Though by the age of 27 the average egg count has dropped by 90 percent from the time she is born, 10 percent remain. [...]
In her early 30′s, a woman’s chance of becoming pregnant drops from between 20 percent and 25 percent to approximately 15 percent monthly. This drop in percentage is a natural result of aging. As a woman ages, she produces less viable eggs each fertility cycle, hence driving upinfertilityas less eggs are available for sperm to reach. [...]
In her late 30′s–those over 35 years of age–a woman’s chance of getting pregnant falls yet again to just 10 percent per month.

I screwed up and can never go back and use my time more wisely. As a result, I will be the nutjob urging BabyGrok to have a baby by 25.

And urging her to have more than two!

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March 25, 2013

GRIEVING: THE END OF HOPE

In high school I started wearing a retainer when I slept.  The first one I owned lasted 11 years without any problems until my new puppy chewed it up.  Replaced it and that one got chewed up too.  The one I have now is 5 years old and will need to be replaced soon because I'm grinding my teeth like a maniac.  So the first retainer I had lasted me through the stresses of high school, going off to college, studying abroad in godawful France, an insane senior year, getting married, and sending my husband off to war.  But this one that has lined up with years of infertility is practically ground through.

I am gritting my teeth so hard I'm chewing through plastic.  That is why I am happy to be moving on.


But I don't really know if you ever move on.  There are so many little triggers that remind me that I'll never have that second baby.  The expectant mother parking space.  The slew of people around me still expanding their families.  That rare but heartbreaking gas bubble in your gut that feels exactly like a baby moving.

I just finished the book Unsung Lullabies.  There's a chapter on the grieving process that sums this moment up in my life pretty well.  All along, I have been living with grief.  I have grieved all the lost babies, I have grieved the loss of my ideal timing and spacing of kids, I have grieved the lack of siblings and cousins for BabyGrok.  But it's only when you completely quit -- when you decide to never again pursue the available options to continue to try to create life -- that the full weight of all the grief crashes down on you.  Yes, you've been grieving all along, but you've been living with hope too.  That hope, fickle and irritating as she may be, keeps you from fully taking account of the compounded losses and seeing reality as it is.  And once that is gone, everything changes.

I wasn't exactly prepared for that.

We spent a long time trying to get pregnant.  We also spent quite a bit of time doing fertility treatments, where we imagined multiples.  And named them.  Naming has always been easy for us.  We named BabyGrok last millenium.  And we had names picked out for the next baby to join our family.

Only there will never be a William or an Alice.

The thing about infertility that's hard to explain is how you grieve human beings that never were.  There never was a William or an Alice, but I grieve them as if they existed.  In my heart, they died.  And the family we imagined died along with them.

Lots of people's lives don't turn out exactly as they'd planned.  Maybe you get a disease.  Maybe your kid has a disability.  Maybe you lose your job or are the victim of a crime.  Those are all unforeseen things that come down to bad luck.

What also belongs in that category is having fewer children than you wanted.  It's bad luck too.  But unlike cancer or crime, it's something we think we have absolute control over.  No one ever grows up expecting that it will be really hard to have two children.  In fact, the more common complaint is that you had too many children, that whoopsie you weren't expecting.  Most people fear accidentally becoming pregnant, not being unable to do so.  Most families I know of have more kids than they had planned on, not fewer.  Unlike cancer or crime, the number of children you have seems like a choice you make.  You decide how many children you want and then you stop.  The opposite of that -- and the stunning lack of control you feel about about such a basic aspect of your own life -- is tragic.

But it's a hard thing to tell people that you're dealing with.  Someone gets cancer, everyone understands that upheaval.  Even a miscarriage is something that people can commiserate over.  But that's a fixed point in time.  The ongoing ache, the one I fear may never go away, is the ache of never meeting William or Alice.  And of grieving them as if they died.

I find myself fixating on the past.  Baby #2 had a heartbeat and grew to 9 weeks.  What happened?  I don't think that baby was translocated.  Maybe he was, but he grew more than any of the others.  What killed him?  And why can't I go back in time and have a do-over where I take aspirin and progesterone, or at least an autopsy, or something.  It's so unhelpful to stress so much about something long over, but that's the one that keeps me up at night.  That's the baby that defied the odds to live...and then defied them again to die.

Was that little gummy bear that I held in my hands my William?  Was that all I get?  Was that my second kid, and all I got were those few hours we spent together one day?

The grieving has begun.  I imagine it will get easier with time, but I don't imagine it will ever go away.

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March 04, 2013

SHE'S 3!!



BabyGrok turned 3, with much fanfare.  And a cake made of donuts.


I am getting myself used to the idea of her being an only child.  The doctor from Walter Reed called to discuss the results of my cycle and said that it seems unlikely that I will ever be a good candidate for IVF.  I plan to go back to the local doctor for a second opinion, but if he concurs, then that's the end for us.

My husband leaves for three months next week.  BabyGrok and I get to explore the joys of military separation.

BabyGrok...huh...she's not really a baby anymore.  
But she'll always be our baby.

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February 17, 2013

BACKDATED POST

I realized that I had forgotten to post something here about mindblowing information I learned before I did the IVF.  I backdated the post for the sake of chronology.  The post from January is here.

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February 16, 2013

THE INCOMPLETE LOCKET

I cannot imagine what it's like to live through a lot of things.  I cannot fully grok losing a parent, or losing a child, or losing my husband.  I can approximate the emotions and try to put myself in those shoes, but I know I cannot conjure the depth of that agony.  Nor can I wrap my brain around being homeless, having cancer, or any number of life's difficulties.

 

One thing I've tried to explain to people over the years is the slow, aching agony of "trying to make a baby."  It is life lived entirely in two-week chunks.  It is a neverending timeline in the back of your mind.  It is a rollercoaster of death by hope.

 

And I know it can't fully be understood until you've lived it, but I keep explaining it because I need to get it out.  I need to beat it into other people's brains, just to prove that it is a real thing, that it is something painful to experience, that it is not in the least bit fun or romantic.

 

So let me beat your brain one more time, please.

 

You get your period and you are bummed; you are not pregnant.  And so the clock starts again.  Two weeks later, it is Time To Make A Baby, and you alternate between feeling nervous and stressed that your timing might be off, and exceedingly hopeful that maybe This Is It and you have nailed it and will be adding to your family.

 

And then you have to wait two weeks, with your hope building to a crescendo, for the results.  You roughly calculate a due date.  You think about what season maternity clothes you'd need to wear.  And then the test is negative and your crescendo crashes.  Hope flatlines, the clock starts over again, and the hope slowly builds again for another two weeks.

 

Sometimes, in my case, the pregnancy test is positive and hope spikes to record highs at the end of the month.  Forget calculating due dates, now you're calculating when the child will graduate high school and marveling at how futuristic the date sounds.  Hope soars.  And then three weeks later, the ultrasound without a heartbeat sends hope plummeting to the floor again.

 

I can explain all of this but I cannot make anyone else feel what it feels like to live on hope for two weeks.  Perhaps if you've awaited scary medical tests, you know what it's like.  The constant feeling that you need to Do Something even when there's nothing that can be done.  The way you anticipate both scenarios and play them out in detail in your head.  The way you swing wildly between hoping for the best news of your life and dreading the worst.  It is emotionally exhausting.

 

I have lived that way for six years, minus a chunk in the middle when I was pregnant with perfect-DNA BabyGrok and when she was a newborn.  (Ha, but that's stressful in a totally different way.)  For six years, I have lived my life in a holding pattern.  Five and a half years ago, I saw a help wanted sign in the window of a doggy bakery.  I thought that job would be so fun, but I was trying to get pregnant and thought it was a bad idea to take a job and then turn around and quit.  It would be nine months before I even got pregnant...and three years before I ever had a baby.  The doggy bakery was out of business before my pregnancy would've ever made a difference.

 

So many things are like that when you're trying to build a family.  You can't see a dentist when you're pregnant, and when you're trying to get pregnant every month for six years, you put off calling the dentist's office and scheduling an appointment.  I've been having some other minor pains and health issues for years, but I've put off seeing a doctor because I can't really take medication.  Every time I need to call to schedule something, I do the math in my head to see when it's time to take a pregnancy test.  And sometimes it seems to make more sense to wait five days and take the test and know for sure before I call to schedule...and then it's always negative and I should've just called months ago and gone to the damned dentist.

 

On the one hand, I am lucky to even have hope that I can have children; some couples don't even have that.  The cycle of hope keeps me trying -- hoping I'm pregnant, hoping the baby lives, hoping the IVF works -- but it's also what keeps me perpetually stuck.  Stuck in time and unable to move forward, unable to even go to the dentist, because I am always hoping that there's a baby around the corner.

 

That hope kills me.

 

And I have to let it go.

 

At Christmas, I bought a locket from my cousin's Origami Owl business.  I chose a baby's footprint and Baby Grok's birthstone as the charms.  And then I told my cousin that I wanted to choose the number 6 to represent the other lost members of our family, but that I couldn't bear to purchase the 6 and then find out I needed a 7...or 8...  So I bought the other two charms and said that I would complete the locket with the appropriate number charm once our family was complete.

 

After my IVF cycle got cancelled, I thought a lot about my incomplete locket.  It is the perfect metaphor for how I've been living for six years: stasis.  I've been living as if my heart, my locket, has a missing piece, and I keep thinking that once I fill that slot, I can move on.

 

And I decided I have to let it go.  I have to complete that locket.  

 

Last weekend I asked my cousin to send me that number 6 as soon as possible.  It was such a relief to receive it yesterday and click it in place.  I need to be OK with that locket representing our complete family: BabyGrok and six others in our memory.  If that changes in the future, then I can change the locket, but I can't continue to live in stasis.  I can't keep treating my heart like an incomplete locket.

 

And I felt good with that decision, and at peace.  It may not seem like much if you haven't lived your life in two week chunks for six years, but for me it was a giant step forward.  I was ready to accept things the way they are and be happy with that, come what may. 

 

And then as soon as I made progress and moved on, as soon as I was ready to accept that our daughter might be an only child and our family might actually be complete already, hope reared its head again.  I went back to Walter Reed to return the stockpile of IVF meds that I still had.  The nurse told me that I could keep them, thousands of dollars of medicine, and consider doing IVF back at home, which would reduce my costs and travel woes.  So just when I thought I was moving forward and putting hope behind me, I'm presented with another angle to consider.  Another niggling hope to take root in my heart and make me second-guess my choice to move on.

 

We can keep trying at home, maybe give it another two years, of death by hope in two-week chunks.  And maybe get pregnant, or maybe not...and maybe the babies will die, or maybe not...  Or we could try IVF again here in DC, either in April (a logistic nightmare because my husband will be gone) or July.  Or we try IVF at a local clinic, with a doctor who might be more receptive to helping me personally instead of herding 100 women through like cattle.  But at twice the cost and perhaps less chance of success.

 

Or we bury hope altogether, call the locket complete, and decide we three are a family and start moving forward together from today.


There is still hope that we could have a baby someday.  But it's hope that has made this entire journey so hard; it's feeling like there's a baby just out of reach, just around the next corner, that causes the agony.  I imagine that if the situation were hope-less, I could accept things and move on.  

But I'm certain that people who live in hope-less situations would tell me that I don't grok their lives either... 

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February 08, 2013

IVF -- Conclusion

Game over.

 

I got a call this afternoon that they are cancelling my IVF cycle.  Today's bloodwork revealed that I am now lagging where they want me to be by a factor of 10.  I am not responding as desired to the meds, and there is little chance of getting many eggs, much less getting enough to where we could weed some of them out via genetic testing.  So we can stop now and they can offer me a $7000 refund, or we can keep marching towards near-certain failure.

 

But we have plane tickets...and an apartment...and vacation time booked...

 

Half of me wants to go home tomorrow and throw my arms around BabyGrok and never ever think about making babies again.  I hate this.  Hate it.  I am two steps from feeling completely unable to shoulder this weight any longer.  My very first thought when they called me today was that I am done.  My spirit is completely crushed.  I want to live life moving forward instead of constantly living in depressing two week intervals and focusing on what I don't have.  I want to leave it behind.  I want to shrug.

 

But I also want another baby.

 

This decision will only be made by how much I can endure.  We are not limited by time: I perhaps have another ten years before I really cannot bear a child anymore.  We are not limited by money: we have enough to do IVF 30 times if we wanted to.  We are only limited by how much longer we choose to torture ourselves.

 

I want to stop.  I want to accept the fact that our family is complete and move on.  But I can't bear the thought of watching BabyGrok grow to adulthood and looking back and thinking that we perhaps could've had another if only I would've toughed it out a bit longer.

 

I don't know what the right answer is.

 

Heck, I don't even know what I'm going to do tomorrow.  My plane home doesn't leave for another two weeks...

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IVF -- Day 9

If I am ever forced into a homerun derby, just let me hit the balls alone.  Please don't put me in the lineup right after Prince Fielder.  It's cruel.  I can handle being lousy at baseball, but don't make me watch a superstar and then publicly fail.

 

But that's how my journey goes, every time.

 

When I have ultrasounds, I have to hear other people's strong heartbeats right before I find out mine is dead.  I get to learn that CaliValleyGirl is having a boy on the day they take my dead baby out.  I never stack up.  I always seem to have these monumental juxtapositions that make me feel like an even bigger failure.

 

So the problem with having to have a chaperone is when she goes first, and I write down all her fabulous numbers.  And then it's her turn to write down my numbers and they're shitty.

 

There's a target number they want me at, and I am only measuring at a fourth of it.  On the maximum allowable dosage of medication.

 

I envisioned a scenario where I wouldn't have any embryos with good DNA to work with; I never envisioned a scenario where I might be so lousy at the actual IVF process itself that I wouldn't even make it to the step where we get embryos.

 

I am trying not to despair -- it ain't over til it's over -- but I am coming to the head of a six-year experience in which I have been failing miserably at things I have zero control over.  And I keep feeling surrounded by people who are effortlessly knocking it out of the park.  Meanwhile, I am juiced up on everything I've got, and I still can't stack up.

 

As the hormones coursed through me and I fought desperately to compose myself before I escalated from tears to sobs, all I could repeat to myself was "At least I have BabyGrok. At least I have BabyGrok."

 

I don't know how on earth women survive this process when they don't have that to cling to.  You women are much stronger than I am.

 

Things are not ideal.  We re-assess the progress in three days.  


At least I have BabyGrok. 

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February 06, 2013

IVF -- Day 7

I've been doing the shots for a few days now.  They're tolerable.  They were fine the first day, I balked the second day, and now it just is what it is.

Five injections a day though.  Oy.

There was a snafu this morning with everyone's blood draw (how Army is that?), so I had to give myself my injections in a public restroom in the hospital. Another girl from the program noticed me and said, "I have to go do the same thing in my car. I just feel too funny to do it in a restroom; I feel like a drug addict." I laughed and said, "But I don't have a car...and I think doing it in the Metro would definitely make me feel like a drug addict!"

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February 01, 2013

IVF -- Day 2

I made fun of the injection briefing, but it really did turn out to be quite helpful.  I have never filled a syringe before or given anyone a shot, so I learned a lot.  Overall, I feel much calmer about the process now.  The needles are thin and short.  One of the meds is supposed to burn a bit, but we'll see how it goes tomorrow.  I imagine the shots are not fun -- after all, it's four injections a day -- but it's the power of the hormones that will really get uncomfortable.  We shall see...

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January 31, 2013

IVF -- Day 1

Today was my baseline appointment for my IVF cycle.  I am staying with a friend who lives outside of DC, so we had to leave the house at 4:30 in order to get there for my 6:45 AM appointment.  Ouch.  I arrived at Walter Reed and took a number (how Army is that?) and waited my turn.  I then learned that I cannot attend ultrasounds alone, so my friend came in to chaperone me.  What they needed her to do was take the doctor's notes as she did my ultrasound!  I told them that I would not have a chaperone for any future appointments until my husband joins me in two weeks, and they said that we would just grab a stranger in the waiting room to come in to my vaginal ultrasounds and take the doctor's notes.  Yep, how Army is that.  Also, ever heard of HIPAA violations?

The Army keeps costs low by recruiting strangers to record your personal medical information.


I then went to the pharmacy and got a brown shopping bag full of syringes and medications and a sharps container.  Oy.  Tomorrow I attend an injection briefing to learn how to use it all.

How Army is that?

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January 28, 2013

BABYGROK IS THE 6%

So...you remember when I made that nice little video with the colored blocks and explained what I had learned from the genetics counselor?  My chromosomes 7 and 22 were messed up, and when they paired up with my husband's we had a chance for unbalanced embryos.  I acted out four different pairings: normal karyotype (which is BabyGrok, completely normal 7 and 22), balanced translocation (which is me, part of 7 and part of 22 swapped, but all the DNA present and accounted for), partial 7 and extra 22 (which cannot become a human being) and partial 22 and extra 7 (not a human either).  So that means two options where I have a baby and two options where growth stops and I miscarry.  A 50/50 chance.  

 

And then I had 1 child and 6 miscarriages, which totally doesn't line up with that demonstration.

 

This always bugged me.  How could I possibly be so unlucky?  How could I have been told that I had a 30-50% chance for miscarriage and then go on to miscarry 86% of the time?  How was I such an outlier?  The universe must seriously hate me.

 

I even contacted the genetics counselor again and also Dr Carolyn Trunca, the leading expert on probability for translocations.  I begged them to look at my real-world data and explain to me why it didn't line up with the projections.  Both dismissed me and said I either had other factors at work or that I was counting pregnancies that weren't actually pregnancies.

 

And meanwhile, I just kept miscarrying.

 

Today I had a phone consult with the genetics lab that will be doing the pre-implantation genetic screening during my IVF.  And this genetics counselor said that the original tutorial I had gotten on translocations four years ago was entirely too simplistic.  There are not four possibilities, as I had illustrated with my colored blocks.  There are SIXTEEN.  Irregular DNA has a tendency to bend and contort and pull other DNA towards it and really make a mess of all the gametes.  So it's far more complicated than just a little 7 missing or a little extra 22; I can have eggs with a little extra 7, with a lot of extra 7, and with no 7 at all.  Sixteen different possibilities.

 

But still, only two of them can become human beings.

 

It's not known how likely it is for each of the possibilites.  It may not be that each possibility is equally represented.  But what PGD specialists see borne out by long-term data from women with recurring miscarriages due to a translocation is that the liklihood of having a child is really only about 2 in 16, or 12%.

 

And BabyGrok hit the jackpot: she has perfect 7 and 22.  She was the best possible egg I could've found.

 

We had about a 6% chance of finding that egg.

 

That is miraculous.

 

Now it feels like I went through hell to get her, don't get me wrong, but I stopped breathing when I heard the genetics counselor say that the odds of finding a normal karyotype egg are about 1 in 16.  I had been under the impression that BabyGrok was a 25% chance of happening.

 

She is far more miraculous than that.

 

So what does this mean for my IVF?  I know all of you mean well, but your stories of so-and-so who did IVF and was successful, that really is not applicable to me.  The odds of IVF working for anyone my age are at about 30%.  That's already lousy.  But that's people whose DNA are perfect.  14/16ths of my eggs are useless.

 

Let's say that the doctors can get my body to produce 16 eggs this month.  Statistically, only TWO of those should be able to become human.  But that doesn't factor in the normal loss at every step along the way during IVF.  A normal woman who doesn't even have to think about her DNA who starts out with 16 eggs is lucky to end up with 1 or 2 embryos during the process.  The odds of this working are really, really, really slim.  I feel like I know that, but I don't feel like most of the people around me are aware of it.  I feel like everyone is trying to tell me to stay positive and hope for the best and listen to this story of so-and-so who did IVF and has a baby.  I think I need to mentally prepare all of you for the fact that my odds are horrible.  I have to somehow find the 1 in 8 egg in there that has good chromosomes...AND get it to fertilize...AND get it to occupy my womb and grow.  This is probably not going to work.  I need you to be OK with that, and to scale back your expectations a bit.

 

It will be a miracle if we have another baby. 

 

Anyway, I knew that, but it felt good to have a medical professional confirm it in a nice and understanding way.  I can't explain how good it feels to have someone validate the crap sandwich that I have been served in the DNA department.  No, I am not some outlier with terrible luck.  No, the universe doesn't hate me.  My eggs are doing exactly what they're supposed to do with lousy DNA, and I always had a very slim chance of having a baby, regardless of how good or bad I thought my chances were.  I am completely normal for someone with a balanced translocation.  1 baby and 6 miscarriages is normal.

 

I have never felt so happy to get such crappy news. 

 

But Dr Trunca can suck it for telling me my odds were 17 times better than they really are.  She made me make irrational life choices based on numbers that were not realistic at all.  If I had been accurately informed that the odds of having a baby were only 12%, I would've done IVF two years ago and saved myself a lot of heartache.   But here we are...and wish me luck.  Because really, I'm gonna need it; probability is not on my side.  

Hold your breath.  I leave Wednesday. 

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January 07, 2013

ALMOST 3

I will spend the month of February at Walter Reed doing IVF.  Wish me luck.

Can you believe BabyGrok turns 3 in a few weeks?


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December 12, 2012

DOING IVF THE ARMY WAY

Yesterday I flew to DC for my IVF orientation.  As with all things Army and fertility, it went poorly.


I contacted the Walter Reed program back in August.  They needed a letter of recommendation and any fertility work I had already done.  After they received it, they mailed me a "welcome packet."  I asked if they needed me to fax it or mail it back, and they said I should just bring it with me to the orientation whenever I came.

That was in August.

Since then, I have been in constant contact with their coordinator, continuing to get all the necessary bloodwork and testing done, since it all needed to be less than a year old and it's been three years since I started the process back before BabyGrok was born.  So while we were getting new sonograms and HIV tests and semen analysis and polyps removed and so on, I kept checking back with the coordinator to make sure that I was still on track to do the IVF cycle in January.  They kept assuring me that we were a go, that as long as all bloodwork was done by this week and we attended the orientation, we were fine.

So I bought a plane ticket and flew across the country to DC to attend a two-hour powerpoint presentation.  Oh Army, how annoying you are.

But it turns out that several of us at the orientation were misinformed as to how the process went.  Until you hand in that "welcome packet," no doctor looks at your chart.

Let me repeat that: No doctor in the program even knew I existed, despite all the communication with the program coordinator and the enormous amount of previous fertility and genetic work I faxed to them back in August.

So when I raised my hand to casually ask how having genetic screening on my embryos would affect my IVF timeline, the doctor did that thing where the cartoon wolf's eyes bug out and his jaw hits the floor.

The doctor takes me aside and explains that setting me up for PGD testing on the embryos generally takes two to three months.  Which means it's unlikely that I could be ready for the January cycle.

Oh, and my husband is going TDY after that, so he won't be around to try again in April.

So the "welcome packet" that got emailed to me in August, if I had filled it out and mailed it back, a doctor would've seen it back in August and coordinated with me to get all the genetic probes done to square me away.  But because the coordinator insisted that I bring it to orientation, and because she farted around and didn't answer my emails in time for me to attend the November orientation, I am stuck now with not enough time to get genetic testing done before January.

And in the course of our conversation, the doctor also asked if I was prepared for it not to work.  She told me that I needed to keep my expectations very low and that it was unlikely that I would get an embryo that we could use, and that I need to be prepared to give it at least three cycles before I expect success.

That's $45,000.

Now, if you have zero kids, no amount of money sounds like too much.  If I were as desperate now as I was in 2009, I would be willing to go for it.  But all of a sudden, I balked at the thought of spending that much money and the next nine months getting shots in the butt and taking hormones and basically living in DC while leaving the child I already have to go spend a total of 9 weeks in a hotel in DC.  All to try to have a second child.

I have been on this rollercoaster for SIX YEARS now.  We wanted to do IVF so we could stop the cycle of heartache.  So we could fast-track to success and be done building our family.  And now we hear that we need to be prepared to stay on the rollercoaster until next September, and oh yeah, the ride's gonna cost you as much as a 3-Series BMW.

So I thought I was starting IVF in two weeks.  Suddenly I was being told that I hadn't even been accepted to the program yet, that no doctor has reviewed my file, that we probably couldn't be ready to start in January, and that it wasn't even likely we would get a baby out of the process in the end anyway.

But hey, now it's time for you to pay the $500 non-refundable fee to reserve your space in the program!

I bailed.

We have a lot of thinking to do.

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August 24, 2012

35 AND NOT A GAMBLER

I will be 35 in six weeks.  35 is a dreaded number in the fertility world.

A few weeks ago, I was re-reading the book How We Know What Isn't So and discovered that I have fallen for the clustering illusion. Consider the following passage:

We showed basketball fans sequences of X's and O's that we told them represented a player's hits and misses in a basketball game. [...] One of the sequences was OXXXOXXXOXXOOOXOOXXOO, a sequence in which the order of hits and misses is perfectly random. Nevertheless, 62% of our subjects thought that it constituted streak shooting.
Note that although these judgments are wrong, it is easy to see why they were made. The sequence above does look like streak shooting. Six of the first eight shots were hits, as were eight of the first eleven! Thus, players and fans are not mistaken in what they see: Basketball players do shoot in streaks. But the length and frequency of such streaks do not exceed the laws of chance and this do not warrant an explanation involving factors like confidence and relaxation that comprise the mythical concept of the hot hand. Chance works in strange ways, and the mistake made by players and fans lies in how they interpret what they see.

Replace basketball with dead babies and I have a newfound sense of peace about the whole thing. I am terribly unlucky, but not unpredictably so.  I just really haven't had a large enough sample size yet to make statistical predictions...though Lord knows that a sample size of seven is plenty big when it comes to first trimesters.

And I thought reading that passage had given me the peace I needed to take chance out of the equation and use science to help get some better odds.  So I started researching IVF options.

Unfortunately, I am an all-or-nothing person.

I have long marveled at people who could "not try to get pregnant but just not prevent it."  The day after I had this conversation, I was all in.  Basal temps and charting and the whole shebang.  And I have lived this way, in building-a-family mode, for 5 1/2 years.  It's been exhausting...but I really don't know any other way to do it.  I yam who I yam.

I told people I was going to get the IVF ball rolling, just in case I needed it.  But the truth is, once I had considered it as a serious option, I was all in.  Again.

After researching options and having a local consultation, I discovered that the best option -- both financially and success-rate-wise -- for us is to apply to the ART Institute of Washington, the IVF program associated with Walter Reed.  (Heh, there's a reason their website URL is bestivf.org.)  So I have an application in and am hoping I get accepted into the cycle that starts in January.

January.

This is torture for me.

The couple of people I've told about this already have all asked me if going forward has brought me a sense of peace.  Now I can stop babymaking at home and just relax until January, when science will take over.

Not even close.

I hope it gets better with passing months, but this month has been agony, to skip the babymaking days on purpose.  I am consumed with wondering if this egg might be a good one and I am intentionally passing it by.  I cannot stop thinking about the potential-$15,000 egg traversing my body right now.  And we are just letting it go.  So we can PAY to make a baby.  In January.

Can you tell I'm a little hung up on the money?

I keep trying to tell myself that this money that we have saved up, we have it for our future...and our future is a lot less bright if we don't try to have another child.  So it's an investment in our future, made today, that will hopefully bring happy returns.

But I am not a gambler.  (Our favorite vacation destination is Las Vegas and we never gamble there.)  It kills me to think that we will fork over $15,000 just for the chance to get a 30% success rate.

January will be the most expensive and most stressful month of my life.

That is, if I make it to January without the stress of waiting until January killing me.

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August 11, 2012

RESTREPO

The husband and I watched Restrepo the other night.  I sat there numb with a choke in my throat the whole time.  From the moment the captain said, "When they told me I was going to the Korengal Valley, I didn't read anything up on it, I didn't want to, I wanted to go in there with an open mind..." until I fell asleep that night.

I thought about how many units this has happened to.  The willfully ignorant -- purposefully ignorant -- commander comes into an area, tells the "elders" to forget how things were done under the old unit and that this time, this time I will fix things.  And we will have cooperation and harmony and win your hearts and minds.  So we use whoever we can get to translate important policies -- my husband made the analogy that it would be like if the Germans invaded backwater Alabama and used Quebecois translators to talk to the natives --and hope that our message is being accurately conveyed.  Which it's absolutely not, because there is way too much cultural baggage that gets in the way of the words.  So some of them die, and some of us die, a year later the remaining guys breathe a sigh of relief and go home, and a new group of guys shows up, tells the "elders" to forget how things were done last year, and this year, this year it will work.


For a decade, we have been reinventing the wheel.  Led by people who decided not to study wheel-building because they thought their good intentions and gut feelings could guide them better than centuries of history and anthropology could.  

And the men under them died defending a valley that a few years later the US decided wasn't really worth the effort anymore and ceded it back to the Afghans.  Those grizzled old crypt-keeper, henna-bearded ingrates who care more about dead cows than dead humans.

I am jaded and broken.

I will never forget sitting on the arm of the sofa in my hotel room on Fort Knox, cheering as the Iraqis pulled down the statue of Saddam Hussein.  Back when I thought everyone in this world deep down wanted to live in freedom.  That the world deserved liberty.  That all men were endowed with the right to life, liberty, and the pursuit of happiness.

I just didn't realize that what makes many Afghans happy is to be left alone to bugger little boys and honor-kill their daughters.

A decade later, what I see is that most Americans don't even want liberty.  Not true liberty.  They will trade liberty for security nearly every time.  And if we can't get more than 15% of Americans to vote for personal liberty and responsibility, how in the hell did we think we could export that desire to the Middle East?

I really believed that what my country and Army was doing was noble.  But I was willfully ignorant too, ignorant that the task was monumentally too difficult to ever succeed.

And not worth it.

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August 09, 2012

SUMMERTIME WITH BABYGROK


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August 05, 2012

COUNTING MY LIFE IN WEEKS

For half a decade, my life has been lived on hold.


Five and a half years ago, I saw a help wanted sign in the window of a doggy bakery.  I thought that job would be so fun, but I was trying to get pregnant and thought it was a bad idea to take a job and then turn around and quit.

It would be nine months before I even got pregnant...and three years before I ever had a baby.  The doggy bakery was out of business before my pregnancy would've ever made a difference.

So many things are like that when you're trying to build a family.  You can't see a dentist when you're pregnant...and when you're trying to get pregnant every month for five years, you put off calling the dentist's office and scheduling an appointment.  I've been having some other minor pains and health issues, but I've put off seeing a doctor because I can't really take medication.  Heck, when I have a cold, I avoid taking cold meds just in case. For years.

If it hadn't been for the deployment, I would still be waiting to do Lasik.

I'm reaching the end of my ability to be patient, and I started the steps towards seeing a fertility doctor and potentially doing IVF with PGD.  (That's that fancy IVF where they pre-screen for the bum DNA.)  But insurance won't cover a dime of it, so I keep putting it off and hoping we'll just make another BabyGrok at home like we did three years ago.

But I wish it were as simple as "putting it off."  The truth is, I think about it every single day.  Contemplate picking up the phone.  Lie in bed deciding when I should give up and call.  And looking at the calendar over and over again, counting how many days remain before I can take another pregnancy test and see if the problem's been solved on its own.

And then that day comes, and the pregnancy test is negative, and all that's happened is that we've wasted another month.

But it's not like doctor appointments materialize on command.  So if I call tomorrow to make an appointment, it will likely take two or three weeks to be seen.  Which means I will have already tried again at home to make another baby before I even get in to the doctor...which means another month of death by hope that this might work on its own without having to fork over twenty thousand dollars.

I cannot wait to be done with this.  To stop looking at the calendar and counting my life in weeks.

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