The End of the Ride

Yesterday, we reached the end of our long, strange journey with ART (assisted reproductive technology).  Although my hysterectomy ostensibly signaled the end of our journey having children, there remained two embryos at our fertility center that needed to be taken care of and, yesterday, we finally made our decisions.

Back when we began this journey, we originally intended to donate our embryos to other infertile couples.  Having made 11 of them back in March 2010, we were sure there would be plenty left over to share with couples who needed them.  Then Mira was diagnosed with CHD, and then we had a miscarriage, and then a failed cycle, and then Patrick was born with an even more serious CHD and died.  Of the nine embryos we had used, only three ever implanted, only two ever became birthed children, and only one lives today.  We decided that we could not in good conscience donate our embryos to a couple in need knowing there was little chance either embryo would ever become a child and, even if it did, would, in all likelihood, have a complex CHD.  The infertility journey is so hard, so punishing on a couple, we simply could not put another couple through what we have.  You may think us selfish, but we think we were being kind.

The two remaining options were to donate the embryos to research and to simply take them ourselves.  We decided that we could not give them to research.  We have nothing against that option but found it was not something we could choose ourselves.  Whether it was because we had seen them as our potential children, or our concerns about the CHD aspects and whether the would be useful to research, it makes no real difference.  The result is the same.  We did not donate them.  Instead, we elected to pick them up (which makes them unviable almost immediately upon removal from the freezing process) and lay them to rest near Patrick.  

I also decided that I needed to name them.  Had they been a failed cycle, I would not.  However, because I removed that choice, that opportunity, I feel like I owe them something.  And that something is a name.  As they were conceived together, and lost their life potential together, I think of them as twins--one boy and one girl: Brent and Rain.

So we have reached the end of this journey.  Although others continue--parenting Mira and her CHD issues--this is the one that brought me here, to these pages.  It got me writing, thinking, sharing.  But I am glad to see it end.  I am ready.  It's time to move forward.  As I continue to recover from the loss of Patrick, I am healed by the end of this spectacularly long and difficult road.  There are fewer unknowns.  Fewer questions.  No regrets.  No what-ifs.  I am content with the choices we made--both for ourselves and our family.  I have a beautiful daughter who, at this very moment, is alternately yelling in frustration and hollering with joyful success at her Disney Princess Wii game in a style worthy of her father.  I have the memories of my beautiful son, who lives on through the smiles he shared with so many.  My heart is full.  Our journey a success.  It's time to leave the roller coaster. Time for other rides.  We'll see you around the park.

[Note: We have used this blog to share our journey and, as such, I feel that sharing these events is important. I think people need to talk about these things and not hide them in the shadows.  I think having a dialog is important in all areas of life. That said, this is a very personal and emotional issue.  This post is not an opportunity for debate or to attack our decisions.  We offer nothing more or less than an explanation for the choices we made.]

Coming Full Circle--How My Hysterectomy and Complete Infertility Made Me Pregnant Again

Almost five years ago, on October 28, 2009, I wrote a note on my Facebook page that ultimately began this blog.  This date sears my heart as I read it.  All I have been through in less than five years:  the struggles to get pregnant, miscarriage, failed IVF, two children, CHD diagnoses, open-heart surgeries, and the death of my baby boy.  We are 11 days away from what would have been his first birthday--the same day that will begin year six of our journey: October 29, 2014.

These past five years have altered my life, and me, in ways I had never imagined.  Back when we started, I honestly believed that just fighting to become pregnant would be the hardest thing I would ever have to face.  Instead, it's moving forward as a family of three after having been a family of four.  I am physically and emotionally exhausted.  I was not prepared for this journey.  I have been lucky for the support of friends, family, and my spouse.  I know that each one of these challenges has tested and destroyed other marriages.  That mine has survived all of them is something of a miracle, for which I am eternally grateful.

Speaking of miracles, we have been asked whether we believe in miracles and why we think Patrick didn't get one.  Here's the thing.  God did not look down and say, "Oh, it's the Hobsons, this can't happen to them, we'll fix it right away."  That's not how it works.  God does miracles in His own time for His own purpose, not on demand.  And the truth is, we had tons of miracles already.  Two successful rounds of IVF--miracle!  Our daughter's health in spite of her serious CHD diagnosis and open-heart surgery--miracle!  Patrick's birth--miracle!  The surgeon's ability to unifocalize Patrick's pulmonary arteries without a patch during the first surgery--miracle!  Ten months with the most adorable, cuddly, smiling boy--miracle!  That Patrick died is not evidence of a lack of God's presence or the lack of miracles.  It is not evidence that we did not believe hard enough, or that we sinned somehow.  It is not evidence of failure or inadequacy.  Patrick's death is proof of life.  To paraphrase Braveheart: Everyone dies; the task before us is to truly live.

I am still figuring out how to do that.  I am coping with survivor's guilt.  There are so many things we are going to be able to do now that we couldn't do if Patrick had lived--like my return to work.  But it's important that I find a way to move forward; to make my life meaningful.  Because maybe, just maybe, Patrick did me a great honor.  Maybe he sacrificed his time here so that I would not have to give up my career to become a full-time caretaker for him, so that we wouldn't have to split up the family, or potentially destroy the family we worked so hard to create.  Figuring out whether this is true is not important.  What is important is to figure out how to live authentically and honor Patrick's life as best I can with mine.

Which brings me back to my hysterectomy.  I am now wholly and completely infertile.  There will be no more children.  That part of my life is irrevocably over.  But I am not sad.  I am completely at peace.  Not only am I finally free of the physical pain and suffering my conditions caused me, I am free of worry, free of monthly reminders, free to take all of the energy that has been tied up in these other things and channel it into--or birth--something new.  Maybe a new me.  Maybe finally start to turn all of this into a book.  I am using this recovery time to try and figure it out.  What I do know is that I am excited to find myself pregnant again--not with child, but with possibilities.  And, as sad as I am, and will continue to be, about the loss of my baby boy, I can be excited about what is ahead; excited to move forward in this new phase of life; excited to figure out how best to honor Patrick's memory.

Don't Know Why

As we have shared the news of Jellybean's heart issues with people, we've have two main questions:

1)  Is it the same thing Lil' Bit has?  No.  If it was, doctors would be writing this up in medical journals right now.

2)  Do they know why both your kids have heart issues?  No.  There are lots of factors that can play a role in children getting congenital heart defects (CHD).  Below is our best understanding of some of those risks and why don't seem to be applicable.

Family History
This is generally the biggest factor, hence the big jump in probability of Jellybean having a heart defect once we discovered Lil' Bit had one.  However, to the best of our knowledge, there are no cases of a CHD anywhere in either my or Phil's family.  So, although Lil' Bit's having one increased the chance Jellybean would also have one, Lil' Bit had no increased risks.

Anti-depressant Use
First, an interesting fact:  The fetal heart is fully formed by roughly 7 or 8 weeks gestation, which is generally long before most people know they are pregnant.  Thus, things that occur later in pregnancy have no bearing on whether there are CHDs.  However, because I was taking my anti-depressant prior to and during that time period, and there is a link between the anti-depressant I have been taking and babies having CHDs, we were concerned about this.  However, the drug I took (my doctor just switched me to something new) is linked to a very specific type of defect which Jellybean doesn't have, and I didn't take any anti-depressants during my pregnancy with Lil' Bit.  I have had at least seven different doctors reassure me that this was not the cause.

Uncontrolled Diabetes
Children born to women whose diabetes was not well-controlled are statistically more likely to have a CHD.  However, because my diabetes is gestational, it is less-likely to be the cause of any issues.  My doctors reassured me this is generally applicable to women who are diabetic pre-pregnancy.  In addition, my A1C test at 3 months gestation revealed a nice low average blood sugar level of like 5.5 (well in the normal range).  Because this test provides an average blood sugar level for the prior 3 months, to the extent that there was any chance I had diabetes prior to pregnancy, it could not even remotely be considered out of control.  This was not the cause of either child's CHD.

Chromosomal Abnormalities
There are lots of chromosomal abnormalities that are associated with CHDs and, because I was 34 at the time the embryos were created, my kids were at a slightly higher risk of such abnormalities than if I had been younger.  Because we are unwilling to risk a miscarriage to have an amniocentesis done, we won't know until after Jellybean is born whether he has any such abnormalities.  We do know, however, that Lil' Bit doesn't have any and, because her embryo and Jellybean's were created at the same time, there is no additional risk for him based on my increased age during his pregnancy--the risk is calculated based on the age of the egg, which was the same for both kids.

IVF
This is the biggy, and it's somewhat controversial.  Initially, there was a fair amount of research that indicated a link between IVF, particularly with the use of ICSI, and CHD.  Subsequent research indicated that the increased correlation could be because of the increase in multiples (twins, triplets, etc).  Other research has shown that although there is an increased incidence of CHD among IVF users, it is because there is an increased incidence for couples who suffer infertility, regardless of the fertility method used to conceive.  Thus, whether Clomid, IUI, IVF, or natural conception after years of infertility, the incidence rate appeared correlated with infertility, not IVF.  We had seen this research and thought that since our infertility issues were largely structural--the result of blocked tubes from a ruptured appendix--rather than genetic or hormonal, we had a lower risk.  Guess not.  In any event, the current understanding is that children conceived using IVF do not have an increased risk of developing a CHD.

So, there you have it.  The only risk factors for CHD that might have some application in our case appear not to be the cause.  And, in truth, I'm not sure it really matters what caused it.  If it turns out I did something to cause it, would being able to beat myself up about it change anything?  No.  Would pointing the finger at IVF help?  No.  I think we would have made the same choices because the odds of any child having a CHD are just so darn small.  So, to the best of our ability, we're setting aside the need to know why it happened and just focusing on what we do from here.  It seems like a much better use of our limited physical and emotional resources right now.

Facing Infertility in a Facebook World

I had hoped to post this during National Infertility Awareness Week (April 21-27, 2013), but life got in the way.  Still, as many of my friends are giving birth and populating my Facebook newsfeed with adorable newborn pictures, and with me headed for the big anatomy ultrasound, I wanted to talk a little about what it was like for me on the other side of the feed.

When I got pregnant with Lil' Bit, I was so excited.  As did many of my friends, I changed my profile picture to an ultrasound image and was generally obnoxious as only pregnant women (particularly those of us who worked so darn hard to get that way) can be.  I justified it because I had EARNED it.  I don't know that I thought much about those on the receiving end of my posts--those who were happy for me, but for whom each of my posts was a reminder of what they had not yet been able to achieve.

Fast-forward to the past year, where I was faced once again with my infertility as I struggled with miscarriage and a failed FET.  As I chronicled here and here, I struggled as my newsfeed filled with friends' news of pregnancy and ultrasound pictures.  It hurt to see others getting what I wanted while I was being denied what I worked so hard and paid so much to achieve.  Even after I got the positive result from this pregnancy, the pain was still fresh.  And with that pain in mind, I began to wonder how best to move forward.  How could I balance sharing my good news with making it less painful for those who I knew were still struggling?  I ultimately determined that there wasn't much I could do because I can't anticipate what will hurt any particular person, given that they all have unique struggles.  But, there was one thing I could do.  I could refrain from changing my profile picture to an ultrasound image.  I don't know how it affects others, but for me, it was a constant stab.  It was one thing to see the pictures in my feed and know I wouldn't have to see them soon as they got bumped by more recent stuff.  But, once it was a profile pic, I saw it every single time I interacted with the person or they did anything that showed up in my feed.  So, knowing how difficult it was for me to be on the receiving end, I decided that I would not inflict that on anyone else who had similar feelings.

This is not to say that those who did or do it have done something wrong.  They had and have every right to proclaim their joy in any way that they want to anyone that they want.  I even did it last time with Lil' Bit.  This time around, though, I want to be a good steward to those who are still struggling and those who have yet to discover their struggle ahead.  I won't stop sharing my joy, but I can try not to make it unavoidable.  And please know, even as I struggle with my pregnancy and get frustrated with my shots, I know how lucky I am.  I know how many people deeply want a pregnancy, any pregnancy, and would take a high-risk one over none at all.  I know that pain.  Even as I carry my second child, I remember and feel that pain.  I have not forgotten.  To those of you who share the struggle, you are on my mind, in my heart, and in my prayers.

Insane Hopefulness

It is often said, though unknown who first said it, that the definition of insanity is doing the same thing over and over and expecting different results. By this definition, I am insane. Hopeful, but insane. Why? Because month after month I hold out hope that I can conceive a child the old fashioned way. That Lil' Bit can have a sibling without me having to get shots and be poked and prodded for three months before all the poking and prodding that comes from being pregnant. But, each month, I am heartbroken when I discover nothing has changed. Not surprised, mind you. Just heartbroken. And yet, I still hold out hope. Because, although it's improbable, it's not impossible. I personally know couples who had the same issue I did and managed to conceive. I know other couples who, once they used IVF, were then able to conceive on their own. I also know, however, thay my issues are somewhat different. Usually, those who successfully conceive after IVF are those who had unexplained infertility or miscarriages and whose bodies suddenly realized they knew how to work and did. When physical blockage is the issue, that's not something that usually changes. It can, it just usually doesn't. So, my logical, practical side knows that I am unlikely to conceieve without another round of IVF. And, if that's what we decide to do, we will. But the hopeful, whimsical, insane side of me thinks that maybe this time, we'll get a different result. For this month, there is no miracle baby. Who knows, though. Maybe next month. I just can't help myself. I'm suffering from hopeful insanity. Still, I think insane hopefulness is better than no hopefulness at all. And, don't forget, there's an equally prolific saying in my favor: if at first you don't succeed, try, try again. So, here I go.