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10.29.2012

Dear Doodlebug

Back in February, when I was pregnant with Oliver, I started writing "Dear Baby" letters to him.  Although I stopped writing them after my miscarriage, it has occurred to me several times since then that I still have a baby to whom I can write letters.  And so, this post begins letters to my daughter, which I have decided to call "Dear Doodlebug."

Dear Doodlebug,

As I write this, you are almost two years old.  Although we knew you would dramatically alter our lives, we really had no idea how much.  This time last year we were preparing ourselves to take you in for open-heart surgery.  We were definitely not expecting that.  Thankfully, everything went well and I am excitedly planning your birthday party.  Although you probably won't ever remember it, it means so much to me because it is your first birthday not in a hospital. Truly something to celebrate!

You like to throw us curve balls a lot.  You also like to throw tantrums a lot.  You are strong-willed and independent and have been most, if not all, of your life.  I find it's getting harder to look at that pouty lower lip and not just grin back at you because you look so darn cute.  I am, however, pleased that you are learning how to throw your arms around in frustration without hitting anyone.  When you get more verbal, I will try to teach you better ways to deal with your anger and to calm yourself down.

Just so you know, I wasn't very good at this either.  In this respect, you are a mini-me.  I threw some great tantrums in my day.  Luckily, I finally grew out of them, but I know I gave your grandparents a run for their money.  Your Grandma was very good at rubbing my back while I yelled myself out.  It was the only thing that worked.  Your daddy and I have used that trick with you a lot--especially when you were younger and more amenable to being snuggled.  But you laughter, smiles, giggles, and full-tilt running hugs more than make up for the tantrums.  You are amazing and wonderful and complicated.  And you are perfect just the way you are.  We love the you that you were, the you that you are, and the you that you are becoming.  We feel privileged that you picked us to be your parents and we'll do our best not to screw you up too badly.

Love,
Mommy

10.27.2012

A Glimpse at the Possible

This week we took Lil' Bit in for her routine echo-cardiogram.  The doctor was generally pleased with her growth and development.   The echo looked good--said her heart was very photogenic!  Her pressures are still roughly the same they have been for the past year.  It's frustrating that they have not gone down, but it's excellent that they haven't gone up.  In addition, the secondary characteristics they look at to see if anything is amiss all looked good as well.  Dr. S even downgraded her severity from "moderate" to "mild-to-moderate."  Not much, but we'll take it.  She'll go back in March for another echo and then he'll decide when to do a heart cath.  Depending on the results of the heart cath, they'll decide if they can start to ween her off the meds to see whether she can maintain her pressures with fewer meds.  Wouldn't that be nice!  Dr. S. also said we could expect her to have a pretty normal childhood.  That was wonderful news and we left feeling pretty good.

But the best part of the week was the surprise call we got on Friday from Dr. S.  He had spoken with Dr. T, who had done Lil' Bit's heart cath and who had several other patients also missing a pulmonary artery.  There was one woman they had been following for a while who was now 33.  She had both an absent left pulmonary artery and a VSD, making her comparison to Lil' Bit pretty close.  She also had some other issues Lil' Bit doesn't have for which she had needed surgery, but in terms of problems from the VSD repair and absent pulmonary artery, she had had none.  And the best part--she currently has an 8-month-old baby!  Although we had previously been hopeful for her future when we heard of a very active and athletic 13-year-old who had a missing pulmonary artery, to find out that, at this point, nothing is off the table for Lil' Bit's future is huge.  Getting this glimpse at the possible makes it so much easier to keep trudging through the complicated med schedule every day.  Lil' Bit is an amazing kid.  And, if she wants, she may get the chance to be an amazing mom.  Yes, it probably sounds crazy to be worrying and thinking about that for a kid who isn't quite two.  But to me, it puts her one step closer to normal; one step closer to being able to do anything she wants.  To me, it means the world.

10.22.2012

A Message From Elmo

As Phil and I sat with our grief and sadness and worked through our decision not to try again, we realized that we had been somewhat naive to think that we could make the decision ahead of time.  There is simply no way to make a decision of this magnitude beforehand.  In thinking about it, I realized that I had made at least two errors in my calculation.

1) In the back of my mind, I was certain it was going to work, so making the "we get what we get and we don't pitch a fit" agreement was easy because I assumed I would get what I wanted;

2) To the extent that I knew that it might not work, making the decision ahead of time was going to keep me from feeling grief (Ha!).  I wouldn't have to sift through the grief to figure out where I was--I had already done it ahead of time.

We talked back and forth and finally reached a point where we were both in agreement that we were willing to reconsider our decision.  We might still stick with it, but we could change our minds.  In this vein, we went to doctor's appointments with both the fertility doctor and my obgyn to get all of the facts on moving forward and stopping.  Then, we sat down to digest the information.  This was exceedingly hard for me.  At one point, I realized I didn't really care which decision we made, we just needed to make one so I could move forward.  Of course, this is a bad way to make a decision, but I am someone who loves certainty and planning and making a decision was the only way to get that--or at least the illusion of that.  See, our decision comes down to "no" and "maybe."  There is no "yes" option.  I hate that, but my hate doesn't change the fact that those are my only options.  I came to the conclusion that I wasn't ready to give up.  Yes, I hate the roller coaster.  Yes, I hate the uncertainty.  But, I truly believe I am meant to have another child and the only way to achieve that is to try again.

As I was coming to terms with whether I was willing to change my mind, Phil and I became aware of some hints we were receiving.  They weren't necessarily the universe telling us what to do, but the fact that they made us wonder meant that we had more thinking to do.  The two biggest of these gentle nudges came in the form of a television show and some laundry.

The evening after we met with the fertility doctor to talk about what another round would entail versus what was necessary to donate the remaining embryos, we were watching Elmo with Lil' Bit.  Sesame Street has started a new line of Elmo shows called "Elmo the Musical."  This particular episode--a new one--was called Circus the Musical.  In it, Elmo is "a monster with a dream."  He keeps trying to find a way to join the circus, but is thwarted by his inability to fill in for any of the missing acts.  He ends up having a discussion with a chicken, who tell him he needs to do what she does, "Just keep cluckin'."  Essentially, try and try until you achieve your dream.  Phil looks over at me and says, "Did Elmo just tell us to try again?!"  We laughed it off, but it did make both of us think.

Then, today, Oliver's original due date, we were scheduled to meet with my obgyn.  Phil picked me up and, on the way to her office, he told me a story.  He had recently gotten in the habit of washing his clothes and leaving various pins attached to this shirts.  One particular pin was a comma--a symbol in the United Church of Christ of the quote by Gracie Allen which it has adopted as it's own motto: Never place a period where God has placed a comma.  Phil began to wonder if, by stopping, we were placing a period where God had placed a comma.  I made a really bad joke about us placing a period after God had placed a "period," but it made us think more about it.

After the doctor visit, we went out to lunch to process.  We both reached the same place, but we kept tiptoeing around it in case the other one wasn't there.  We didn't want to impinge on the decision-making process of the other.  Ultimately, we both agreed that we felt led to try again.  We made no decisions about what would happen after another attempt.  Those decisions would have to wait until then.  We could only decide what we were going to do right now, and we both felt that we needed to try.

Now, you can probabaly guess that, once we had made a decision, I was ready to charge down the path.  But, I didn't.  I am reining myself in on the planning.  Why?  Because I ignored this nagging feeling I had last time that the timing was off.  I had planned it and this was perfect timing, my gut be damned.  So, this time, I want to go with the flow.  I want us to take our time and figure out how we'll finance another round.  I want us to wait and call when we're ready and see when the next available cycle is.  Now, once I have a month, I will calculate everything within an inch of its life as I always do.  But, until that point, I want to allow for more flexibility in recognition of the fact that God's time isn't necessarily my time.

So, to sum up this really long post in a few sentences--we're trying again, but we don't know when.  We are extremely grateful for all the love, support, and prayers we have received since all this began and hope you'll be so kind as to share it with us again as we make our way back to the amusement park for another ride on the roller coaster.

10.16.2012

An Addiction to Hope

It's been a rough week for me as, every other day, I have learned of another friend, relative, or co-worker who is in their first trimester of pregnancy.  And, although it may not be my first thought, I am truly happy for them.  Knowing first hand how horrible infertility is, I don't wish it on anyone.  Still, hearing the news when I am still raw and not yet through this month of loss (next week would have been my due date with Oliver), I just get angry at the unfairness of it all. I also get cranky because I hate being told no.  I am one of those people who will stubborn my way through to anything I *really* want and being told "no" only makes me work that much harder.  All of which helps explain why, late last night, I was reconsidering our decision to stop IVF.

Now, please understand, cognitively, I have no desire to try again.  I hate the shots and the roller coaster and the waiting.  I hate not being able to plan vacations or use leave time in case I need it for maternity leave.  I get anxious at the idea of having to be pregnant while Lil' Bit goes in for another heart catheterization next spring.  But, being bombarded with all these pregnancies, on top of viscerally feeling the loss of Oliver, and, at least emotionally, all I want is another child.

Finding myself confused about holding both of these diametrically opposed positions, I consulted my "IVF Bible"--The Infertility Survival Handbook by Elizabeth Swire Falker [I highly recommend it for anyone suffering with infertility!].  In it, there is a chapter on how to know when to stop, and she points out that fertility treatments are addictive:  "[R]eproductive technology offers perpetual hope of having a child.  It's almost impossible to walk away from that."  And she's exactly right.  You are forever asking yourself if the next time would be the time that worked.  In addition, there are stories of women who have undergone six or more fresh IVF cycles, and however many attendant FET cycles, before achieving their goal.  It's quite easy, especially for those of us who want to push through and do whatever it takes to get what we want, to slip into a never-ending cycle of treatments.

As I tried to explain all of this to Phil this morning--not because I necessarily want to renegotiate our agreement, but because I wanted to communicate with him where I was (after all, he doesn't know unless I tell him!)--I realized that I was stuck.  I am having a difficult time releasing the energy I have invested in having another child.  However, I am fairly certain that once I have my hysterectomy, I will be able to let go.  There are no more one-in-a-million shots at a miracle child.  There is no more possibility of changing our minds and trying one more round.  I will be physically incapable of achieving pregnancy.  Period.  Then, and only then, will I be able to let go of the energy I have invested in having another child.  Until that point, I am, for better or worse, irrevocably addicted to hope.  And nothing, not our agreement, not poverty, not my infertility, not even common sense, will stop me from hoping against hope that something will change and pregnancy will come.  Which, unfortunately, also means that my real healing may not begin until then.  Instead, every month, until I am proven wrong, I continue to have unreasonable hope that I could be pregnant.  Is it rational?  No, but addictions never are.  And, it appears that nothing short of impossibility will fix it.  Until that time, I still have it within my power to try and to hope against all hope.  And, as long as there is something within my power that I can do, I can't give up.  That's just my nature.  It doesn't mean I'm not going to try to to heal until that happens.  But, at the same time, I have to be honest with myself.  So, this is me, being honest about where I am; about being stuck; about being addicted--to hope.

10.07.2012

Moving Through Grief

We generally talk about there being five stages of grief:  denial, anger, bargaining, depression, and acceptance.  I have long known that there is no schedule for grieving and that people do not go through the same stage,s at the same time, in the same order.  What I never realized, until this week, is that one doesn't necessary "do" one stage and then do another, and acceptance doesn't only show up at the end.  And, it turns out, I cannot control when I go through or complete these stages.  [You're shocked; I can just tell.]

Anyway, here's a little look into my first week of grieving to explain what I mean:

Monday, when we first got the news, I started in acceptance.  I had known the negative result was likely.  Yes, I had held out some hope, but when the expected news came, I was at peace with it.  Mostly.  Sad to be sure, but I was somewhat prepared.  I was going to be okay.

On Tuesday, I experienced some depression, but I also did some bargaining.  "If you just let the beta results be different Wednesday, I'll do x..."  I also started trying to figure out what I had done wrong.  Maybe I hadn't followed the instructions just right.  Maybe I had picked up doodlebug too soon.  It felt like it was all my fault.

Wednesday's confirmation of the negative results brought acceptance again, but also anger.  I felt like I did when we were first trying to conceive and again when we got our infertility diagnosis.  Life was unfair.  Why did crack addicts have an easier time conceiving than I did?  It made no sense and I was feeling pretty ticked off.  Because having someone to yell at can make me feel better, being able to rant at the world in general turned out to be quite soothing in a backwards sort of way.

Thursday brought denial.  Maybe it didn't happen because we're supposed to have a "miracle" child.  I know chances are close to zero, but what the heck, right?  It could happen.  We just picked the wrong month to do the procedure.  Had we picked a different month, it would have worked.  Thursday also brought more acceptance.  I finally went back to work and was able to talk openly with people about everything without having a meltdown and bursting into tears at every turn.

By Friday, I was sure I had it handled.  Everything was under control.  I was calm and cool talking with people about it.  I was still sad, and still mourning the loss of the plans I had made for the baby I was sure was coming.  But, overall, I had accepted that this was how things were and had made great strides moving forward.
Saturday, I was too busy with a sick child to think much of anything, except, "Oh my goodness!  I am soo glad we're not having another one.  Could you imagine having to be in the urgent care; cleaning up the barf; staying up all night to hold her so she can sleep without coughing; etc., etc., etc. with a baby in addition?!"

Today, I headed into church.  I was not prepared for the overwhelming sadness and sorrow that hit me.  I had a meltdown of massive proportions, and it was a very visceral reminder that, just when you think you are healed, things can catch you by surprise and you can feel like you haven't grieved at all.  I was left raw and exposed when I didn't expect to be.  one walks to the front, takes bread, dips it into the juice, and takes the elements together.  It was World Communion Sunday and we took communion through intinction--where every.  I almost didn't go.  I was crying and I really didn't feel like parading my grief in front of the entire congregation.  But, it occurred to me that, really, there was never a more appropriate time to take communion than when I was feeling the most broken.  So I went.  Still, it was extremely difficult to allow that many people to see me that hurt.  Just thinking about it while moving forward in line made me cry harder.  I tried not to look at Phil, since he was in the middle of guiding worship, but that only made me more upset.  He exercised his pastor's privilege and moved to stand with me and hold my hand and we took communion together.  It was lovely in the middle of that moment to be able to have my spouse support me.  And, with the exception of one or two well-intentioned people who spouted hurtful platitudes, I received nothing but love and support from my church family.  I felt the church, through it's actions, really saying to me, "Peace be with you."  Though sad, I felt comforted.

So, where am I now?  Back in acceptance for the moment, but who knows where I'll be tomorrow.  Such is the nature of grief.  But, I'm getting there.  In my own way.  In my own time.

10.01.2012

Plan B

So, today was the big day.  Sadly, although not surprisingly, my beta test was negative.  In fact, it was not even close.  I could tell it must be practically 0 because they told me I could stop my meds.  I was right--it was a less than 2.  I will go ahead and have another beta on Wednesday just to make sure nothing strange is going on, but that's it.  We hit the top, took the straight drop to the bottom and pulled into the station.  We have officially ended our fertility journey.  I am sad that I am not pregnant, and I am sad that Lil' Bit will not have siblings, but I will not miss the roller coaster, or the shots, or the physical and emotional toll that trying again would require.

So, what happens now?  First, some tlc for ourselves.  FYI, it turns out that no amount of pre-grieving would have allowed me to stay at work and focus today.  And, since I no longer needed to save vacation time for maternity leave, I took the day off.  I went out to lunch with my bff and got lots of hugs and support.  I also went out and got myself a sassy new haircut to celebrate.  What is there to celebrate?  My new beginning.  Because this isn't just an end.

Second, I called my doctor's office and scheduled an appointment for discussing/scheduling my hysterectomy.  I am so excited about the potential end of all the pain and problems I had suffered for 25 years or so.

Third, I signed up to walk a half-marathon with my sister next year.  We had done it twice before and I had talked to her before the procedure was scheduled to set this up a plan B.  So, this afternoon, we both signed up.  Now, I can spend time training and getting in shape.

Fourth, we are filling out the paperwork to donate our remaining embryos to the clinic for couples who are waiting.  There's currently a 12- to 15-month waiting period and we want to help alleviate that wait for at least one couple if we can.

Finally, over the next few months, I will sort through all of the baby clothes and gear we have that we won't need any more and gift it or give it away.  It will be nice to release all of that stuff to make room for whatever comes next.

None of this is to say that we are not sad and feeling broken and raw.  There is much to grieve and I have no idea how long that will take.  But, honestly, knowing this was our last time before we started has made this much easier in so many ways.  There's no fretting about trying again.  We aren't stuck in a holding pattern.

And we know that we are lucky.  We are still parents.  We have an amazing toddler that we get to help become whoever she is going to be.  In that respect, we won the IVF lotto.  But tonight, I think we will hold her a little tighter and be just a little more thankful that we have her.  Because after all we have been through, she seems more fragile, more precious, and even more of a miracle.