Friday, February 21, 2014

Hope in Unlikely Places

The cycle continues.  About two to three months after a miscarriage, I find myself pondering and imagining about “next time.”  I start to ponder what my “medical plan” will be, and even let myself dream just a little bit of the uncontainable joy I would experience if I were ever able to hold another newborn child of my own.  Granted, our next pregnancy is at least 10-11 months away if not more, because we promised to take a break for at least a year.  Four losses seem to leave you no choice but that.  And if that weren’t enough, I am beyond terrified to get this implant cut out of my arm.  I already find myself worrying about that part even though it’s like a year away (get it together Amber, seriously).  Regardless, a mother’s heart is a fertile heart, and so I dream of when my miracle will come to me.

I’ve generally come to see clinics and doctor’s offices as places that usually deliver bad news.  Tracking my last four pregnancies and losses took place in a doctor’s office.  So, naturally, I’ve come to dislike them somewhat.  Bad memory triggers.  Who likes going to the doctor anyway, right?  I was feeling particularly somber today as I made my way to the InstaCare inside of the hospital for this sinus infection that won’t die.  I prefer saline/over-the-counter remedies to antibiotics- but too many days of pressure headaches motivated me to get a prescription.  The InstaCare is located just past the elevator that goes up to the labor and delivery/OBGYN floor.  So naturally, I passed by several women nearing their due date, as well as several tiny newborns nestled into their carseats.  I smiled a sad smile at them with a heavy heart and thought of my due dates past, and one that I had coming up in August.

I took a deep breath and put on my brave face and grabbed a magazine to flip through as I waited.  In that magazine I found a little boost of hope, even though I was surrounded an environment that is very painful for me.

Let me flashback for a second.  It was just last night I was discussing my next “plan” with Kevin.  I told him how next time we take a positive pregnancy test, I really want it to be between us and the Lord.  Not because I want to be irresponsible, but because no amount of medical intervention that we’ve done has made the slightest difference.  It never bought us any more time.  If it had given us even a few more weeks I would be right back in the office, but nothing ever changes in the slightest.  What the constant trips to the doctor has done, is help educate us.  We know what conditions I have, and what I don’t.  We know what our options are, and what we have tried.  Most of all, we know there is nothing they can technically “do” to save our pregnancies.  I have been poked and prodded and evaluated more times than I can remember.  I have tried aspirin with all kinds of varying timelines, daily lovenox injections, hormone therapy, HCG monitoring, etc.  Now we know those things didn’t change the outcome, all they really gave me was an insane amount of stress.  

This last pregnancy was the hardest.  I don’t think one can understand the stress of getting a test every 48 hours to find out if your baby is still alive, unless you have been through it.  Even the tests that came back well were insanely difficult.  They allowed me to take a huge breath of relief for one more day, even though I was still filled with worry and stress.  When I got the test back that told me baby had only grown 12% it was absolutely horrible.  The emotional exhaustion was too much.  I basically went home and waited for the life to stop, and then to lose it.  Finding out you are losing your baby alone in the bathroom is horrible, but perhaps at least a few weeks of hope instead of needles, calls from the nurse, and constant monitoring is a blessing. 

As far as medication, I still believe that aspirin is important for me to take for both me and a growing baby.  However, I think next time I won’t start on it until we find out we are expecting. That’s what I did with Jack and it worked.  The doctors told me being on aspirin while trying to conceive shouldn’t make enough of a difference to determine the outcome of a pregnancy, but if that’s the case, it shouldn’t matter if I take it beforehand or not.  Maybe my thinking is flawed here, but when you get to this point you have to listen to your gut.  I take the aspirin before a positive pregnancy test to decrease the risk of microclotting in the primitive placenta.  Starting it at 4 weeks is still very early, but I just have a feeling that the aspirin is perhaps interfering with the implantation process when I take it earlier.  There is no medical evidence to support this.  I’ve started on aspirin pre-pregnancy twice, and lost both.  I’ve started on aspirin after a positive test three times, and one of those was Jack.  In fact, my pregnancy with Jack was the latest I’ve ever started on aspirin.  Which tells me that it seems to be more of a preventative measure than something that really affects outcome.  The progesterone I used in my last pregnancy didn’t buy me any more time and I didn’t use any with Jack.  Though I’m not opposed to using it, it’s not medically proven or even recommended by my doctor for any purpose.

These are the reasons why I feel peaceful when I imagine our next pregnancy will just be between us and God.  If I make it to 6 weeks, I will practically run to the clinic, but the stress of imagining the every-other-day appointments with no change in outcome is simply too much.  Our next step is a fertility clinic.  I just can’t imagine being ready to jump into that world without giving my body one more old-fashioned chance.  Kevin agreed with my thoughts and felt peaceful about the idea of trying once more next year, using only aspirin once we find out there is a life growing.  If, heaven forbid, we lose that baby, I will surrender and work with a fertility clinic from that point. 

Enough of the long back-story, back to the magazine.  I was flipping through articles when something caught my attention.  An entire page of writing with a large title, “Recurrent Pregnancy Loss.”  What?!  Someone took the time to write about this in a normal magazine?  It talked about some basic statistics and then started talking about causation. 

First it discussed chromosome abnormalities which are the most common cause of miscarriage.  Then it discussed gene “translocation” which is one of the most common reasons for losing three or more pregnancies in a row.  It’s where one of the parents have part of a chromosome attached to another chromosome, which has somehow balanced out.  It makes it difficult to have a healthy embryo.  My doctor and I have discussed this.  Testing is extremely expensive and rarely yields a helpful result.  Even if you find out this is the reason, the only way to avoid it is to do IVF and screen embryos…and even then, no guarantees.  I think we are a few years away from going down this road.  If for no other reason, because it would be financially impossible.  Plus, I just can’t get over the fact that my very first pregnancy resulted in a healthy boy... if I really had a chromosome issue?  The statistics just don’t add up to me.  But I suppose it’s possible.

Next it discussed age and being an older mom (not my problem).  Then it talked about lack of progesterone even though this is not a proven theory.  We tried progesterone with no benefit noted.  It talked about uterine abnormalities, which is not my problem as it would have been noted with my pregnancy with Jack.  Next was thyroid problems.  Check.  I have hypothyroidism; however, it is well controlled with medication and technically should have no causation in my losses.  In fact, my thyroid usually is healthier while I’m pregnant.  Next was antiphospholipid syndrome, which my hematologist thought I had, but the test came back surprisingly negative.  Next is blood clotting problems.  Check.  Leiden Factor V, low protein C and S, MTHFR.  Check check check.  The article explained how these could be controlled with aspirin and heparin (similar to Lovenox) and increased live birth rates.  Tried it every time with no luck. 

Well here I was at the end of the article feeling pretty discouraged.  All of these reasons and solutions, and no new direction to go in.  Perhaps in the end we would depend on a simple miracle after all.  And then the last paragraph caught my eye. 




70% chance of a miracle.  With no medical intervention.  There is a 70% chance that our next baby will be born and held safe and warm in our arms.  I hope that the more times we try, our chances will only improve.  I am thankful for tender mercies such as this.  The next time I am pregnant, I hope I can tell myself "there is a 70% change that this baby will be born"  instead of "only one of my previous five pregnancies has been successful; my odds aren't good."  Though I know our next pregnancy is a while away, I felt peace in my plan as I read this.  I want to keep the start of my next pregnancy at home and out of the office.  I want to try and stay calm in the comfort of my home, the support of my husband, and with strength from prayer.  I know that our chances are still good of having a healthy baby with very little medical intervention.  I know that it will be better on me to have that stress and worry removed.  If it is God’s plan for medicine to be more involved, we will find ourselves in a fertility clinic and go that route after another loss.  However, I have peace for now in our plan and can look forward to it.  70%.  That number makes me smile.  God is aware of us.  I am thankful for this kind reminder of hope.  My miracle may not be my next pregnancy, or the one after that, but it will come to us somehow, someday.  May 2015 be a year of miracles.  Here’s to hoping and dreaming.      

Thursday, February 13, 2014

The 1%

Among all women, about 20% of pregnancies unfortunately end in miscarriage.  Less than 1% of women will have 3 or more consecutive miscarriages in their life.  While I consider myself lucky in many areas of my life, this is an area I feel particularly unlucky in.  1%.  How did I not end up in the other 99% somehow?  It is a lonely and desolate place.  Though there is support to be found from women who have ever experienced a miscarriage, it becomes a different trial when you have lived through it four times in a row.  There is support from couples who struggle with infertility.  But again, it is not quite the same.  That loneliness can sometimes feel very heavy as I keep fighting to deal with the mourning and emptiness I feel almost daily. 



However, I was grateful when I learned of a woman (a friend of a friend) who has a beautiful child in first grade, but has endured losses in all the years since the birth of their first child.  She is pregnant now, and the baby is healthy and well past the point of their other losses.  Not only was her story miraculous and inspiring- I was simply amazed that there was someone else dealing with it.  I hope I don’t have to endure as many years as they have to meet my next miracle. 

She wrote me and gave me a little advice- saying the most important thing is to keep trying, as painful as it is.  She affirmed that once your body has done it once, you can do it again.  It's so good to hear that- sometimes I feel like people will think I'm foolish for trying again and again.  Not that it matters what others think in these situations, but it's still helpful to feel supported.  With every loss I become less shocked at the loss, and more shocked that I ever had a live birth.  If my mom hadn’t gone against my wishes and filmed my son being born I might not even believe it myself anymore.  My first pregnancy had no real complications and resulted in a healthy and thriving child.  I don’t know what could have possibly changed so much within me in a few short years.  However, I know that it happened and my child was in fact born, and so I have to keep trying because I know it is possible.  It may not be probable, but my body has done it before.  I have to trust that it can do it again.  The trick is finding that patience to endure.    

Though recurrent miscarriage is not an extremely common, I have been blessed and have connected with people who are in similar circumstances.  People I never would have met normally.  Friends, working alongside the internet, have connected me to a support system that has blessed my life.  I want to give back to someone else if I can.  Just the other week, someone told me of a relative who has struggled with recurrent miscarriages and is very discouraged.  I gave her my blog address hoping to either connect or support her somehow.  If anything good comes out of something bad- it makes a difference.  I try to reach out to people I connect with through these networks.  People don’t always write back, and I respect that privacy.  Really more than “talking about it” I just want to show love to these couples.  I want them to know that they are loved and that I feel their pain.  I want them to know that they are not alone, even though it really feels like it when you are mingling with 99% of people who don’t really understand.

It is a challenge in the 1% to wonder why you can't just “plan your family” like "normal people" but I am trying to keep a new attitude in mind- which is that everyone feels like that in some way.  We all try to reach this "normalacy" and when we struggle to get there it can be frustrating.  Whether it be getting a degree, finding a good job, buying a house, finding a loving spouse, having children, finding fulfillment in hobbies, etc.  I don't think it's "normal" to just "have it all" without the struggle.  Whatever your dreams may be.  So when I'm laying in bed feeling broken and feeling like the odd one out, I try to remember I have things going for me in my life that someone out there is wishing they had, like a "normal" person like me does.  We all struggle. We have to embrace our struggles with faith and have joy in what we have found. 

Comparison is the thief of joy.  Most of the time, I am very happy with my life and all of my blessings.  It's when I feel that emptiness that my trials bring, and see so many others around me with that fortune I wish for, that I start to feel despair.  And so, I am learning to not compare. I am learning to see my life as my own, and different from anyone else's.  Envy does nothing but hurt me.  I know there will always be sadness in my heart when I sit in my OBGYN clinic surrounded by beautiful round bellies full with life.  But sadness and righteous desire can be different from envy.  I want to be more Christlike in this behavior.  I want to feel joy for others in their good fortune.   

I'm afraid that it's never going to get better sometimes; that I will lose every pregnancy I’ll ever have, but I don’t want to let that fear get in the way of feeling joy for others. 

 Elder Holland is so wonderful as he describes this principle when speaking of the biblical parable of the Prodigal Son.  Specifically in this case, he is speaking of the elder brother:

"He is haunted by the green-eyed monster of jealousy. One who has heretofore presumably been very happy with his life and content with his good fortune suddenly feels very unhappy simply because another has had some good fortune as well."  -Elder Holland


I know that we all feel lonely in some areas of our lives, and no matter what “percentage” we find ourselves in, stretching ourselves and cultivating Christlike abilities to feel joy for others will bring us joy and peace in our hearts.