Showing posts with label miscarriage. Show all posts
Showing posts with label miscarriage. Show all posts

Wednesday, October 15, 2014

Pregnancy & Infant Loss Remembrance Day

October 15th is Pregnancy and Infant Loss Remembrance Day.

Those of us who have experienced a miscarriage, stillbirth or death of a newborn think of our little angels all the time.  But today is a special day of remembrance, and a day to raise awareness.  Before experiencing my own miscarriage, I didn't realize how common pregnancy loss was.

It can be a frightening, painful, exhausting and very isolating experience to lose a baby.  Though nobody can take the pain away, women and couples experiencing such loss shouldn't have to feel alone.  Many people don't talk about pregnancy loss, for a myriad of reasons.  When I experienced my own loss last year, I didn't exactly want to publicize my own misery for my family members, friends and colleagues to hear about.  One of the reasons why I shared my story through this blog was to try to relate to other women who experienced similar loss to mine.  I thought if I could help just one woman not feel quite so alone, exposing my own fears, frustrations and grief for the world to read about would be worthwhile.  It turns out I did connect to several women, going through losses similar to mine.  Though we'd never met in real life, our lives overlapped in ways we'd each never imagined in our worst nightmares, and we helped one another cope.  {Ladies, you know who you are -- thank you for your support!!}  And through it all I learned that keeping my miscarriage a secret was not only unnecessary, but a disservice to other women out there who were going through it, and who felt like I did.  Miscarriage is more common than most people know {click to visit link}.  So I'm here today to say, you are NOT alone.
Source
The unfortunate fact is that more of the women in your circles than you realize have been through or will go through pregnancy loss at some point in time.  Some more than once.  There is absolutely no reason to be embarrassed or ashamed.  Many people won't want to or will have a difficult time talking about sad events like pregnancy loss, and believe me, I get that.  But the more we start talking about these statistics, the less alone our fellow women will feel if the unthinkable happens to them and they experience their own loss.

If you have experienced your own loss, you have my deepest sympathy.  Your angel baby is in my thoughts today.

Thursday, January 9, 2014

About Having Babies

The Huffington Post recently published an article entitled "8 Things We Learned In 2013 About Having Babies".  I won't repeat the whole list here, but there is one item in particular from that list that resonated with me:

#3.  Miscarriage is more common than most people know.

I certainly learned all about that fact last year, and I know many of you can relate.  According to the article:
When researchers with Montefiore Medical Center in the Bronx polled a group of more than 1,000 men and women between the ages of 18 and 69, they found that they grossly underestimated how common miscarriage, or the loss of a fetus before the 20th week is: More than half said it occurs in fewer than 6 percent of all pregnancies, but estimates suggest it actually happens in roughly 15 to 20 percent. Moreover, many respondents wrongly identified the major causes, citing stress, oral contraceptives and physical exertion, when, in fact, chromosomal abnormalities are most often to blame. The study wasn't meant to stoke fear, but rather to point out how much misinformation there is about miscarriage, and how that can leave the women and men affected by it feeling very alone.
When I think back to how clueless I was about miscarriage back in early 2013, and how intimately familiar I became with this fact over the course of the year, I wonder what I'd tell my old self if I could rewind the clock.

On the one hand, I can certainly appreciate the old adage "Ignorance is bliss".  While I was aware of the possibility of miscarriage, and even mentioned miscarriage-related fears to Hubby on a couple occasions during our first pregnancy, I was definitely in the camp of people who thought it only affected a small percentage of women.  I even remember looking up some chart that showed the percentage of miscarriage for different ages during different weeks of the pregnancy {for some reason the 5% sticks in my head as the statistical risk I thought I was facing}, and thinking that once I heard a healthy heartbeat and saw an appropriately-sized embryo during my 8 week appointment that I was probably in the clear.  What the hell did I know.

On the other hand, I wonder if I would've been more prepared for what I experienced had I known how common and what the main cause of miscarriage was.  Saying that I felt very alone would be the understatement of the year.  That's actually one of the reasons I started this blog, and why I'm so grateful to have gotten to know each of you who has been through this terrible experience -- I don't think I could've survived emotionally without the support you and others on loss message boards gave me!  I felt like I did something wrong, I was completely unprepared {and deeply frightened & scarred} by what my body was going through physically, and when I first heard the words "chromosomal abnormality" from my doctor I lost my breath and began crying uncontrollably.  I can't help but think that if I'd heard of these things before or had read or known more about miscarriage rates and causes, some parts of the experience wouldn't have been quite so frightening.  Experiencing a miscarriage would've definitely still broken my heart and left emotional scars, but perhaps if I had really known what I could very likely be facing, it would've been easier to handle.  

Yet still, I've experienced this second pregnancy to date through the eyes of someone who's been through the hell of miscarriage, and to be honest my prior experience has kept me from enjoying and sometimes even embracing this pregnancy.  Although I foolishly believed my first pregnancy was going to work out perfectly, those thoughts {wrong as they were} allowed me to look to the future with pure excitement, instead of constantly chasing worst-case scenarios and sometimes-irrational fears from my mind.  I've had a really hard time allowing myself to just be happy and to a certain extent planing for an actual baby to arrive this time around, and I wish with all my heart that weren't so.

I think what I would've told myself is:  You're NOT alone.  Sadly, there are millions of women who have gone through or are currently going through what you are.  You may have to search a little bit to find them, but they are out there -- they need you, and you need them.  But just because miscarriage is more common than you think, doesn't mean that tons of healthy babies are not born everyday, to people just like you.  The odds are still in your favor -- most pregnancies result in healthy babies.  Though it never hurts to prepare for the worst, you should ALWAYS hope for the best.

Tuesday, December 31, 2013

It was a . . .

Back in the summer when we underwent genetic testing and met with a counselor to determine the specific chromosomal abnormalities that caused our miscarriage, I asked the counselor if the tests showed the sex of our lost fetus.  She indicated that information was available, and at our request sent us a copy of the results in a sealed envelope, in case we ever wanted to know that information.  At the time we received it, Hubby didn't want to open it.  I knew I wanted to know one day, but at that point my heart was still in a million broken pieces, so I wasn't sure the timing was right either.  So, we've kept the sealed envelope in a drawer, close at hand.

From time to time I'd think of the envelope, and at one point later in the summer I decided that I'd like to open the envelope around the time our baby was due, December 25th.  We were upstate with family for Christmas Eve & Christmas Day, so that timing wasn't appropriate -- I wanted to unseal the information in private.  I also didn't know how I'd react.  But, over the past couple weeks I made up my mind that I wanted to open it before the year ended.  I know there are so many things I have in my life to be thankful for, and I want to make a conscious effort to focus on those in 2014.  I thought by opening the envelope before the year ended, I could try to bring some closure to the situation, and try not to focus so hard on what we've lost.

* * *

Back in May, even before I miscarried, I had a strong feeling that our baby was a girl.  I can't recall what initially led me to believe I'd soon be carrying a bundle of pink in my arms, but I think it was a random dream.  Then, when we vacationed in the Dominican Republic for our anniversary and received a little parting gift from our hotel of a faceless girl figurine, my feelings became stronger.  When I first saw that little faceless girl, I was convinced it symbolized the baby growing inside of me.  And, after our miscarriage when I came home and saw the little faceless girl in a blue dress and hat, I just knew she represented the baby we'd never meet.

* * *

Well, it turns out I was completely wrong.  The little baby we lost back in June was a boy.  Our lost boy.  I'll never forget him, and always wonder what he could have grown up to be.  But the truth is, I'll never know.

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My Little Angel

I never got to hold you,
Or kiss your little head
Or watch you sleeping soundly,
All snuggled in your bed.

I can't count your tiny fingers,
Or you even smaller toes
I won't see your smile,
Or your cute little button nose.

I know you are in heaven,
Where there is no pain or tears.
You'll never get hurt or sick,
In heaven there are no fears

And though I'm sad you're not here right now
For us to hold today
I know we'll hold you in our arms
When we're in heaven with you someday

© April Westlake

Obviously a part of me is still very sad, and I am sure I'll always wish for my angel baby.  But I am also grateful to have found out this information.  I have no idea why, but knowing this little tidbit of information, although it doesn't change a thing really, has brought me a tiny bit of closure.

Wednesday, December 25, 2013

Missing Our Baby

December 25th was the due date of our first baby, making this Christmas emotionally difficult for me.  I know I should be happy that we're currently pregnant again and have a new due date to look forward to, and I absolutely am -- but that doesn't erase the great sadness I still feel, thinking of our baby that was never meant to be and wishing instead that we were about to welcome him or her into the world.  When the doctors first calculated my due date as December 25th I was ecstatic that of all the days in the year our due date was Christmas Day!  I couldn't believe our luck, and couldn't possible have imagined or asked for a more perfect day to look toward.  Over and over I thought to myself what a true gift of love that baby would be!

Hearing Christmas carols on the radio and hanging stockings up by our fireplace brought back a lot of the feelings I felt back when I first miscarried and realized I'd never meet our first baby, and it's been a bit harder than I thought it would be to get into the Christmas spirit this year.  While I know I have so much to be grateful for in my life -- certainly more than I could even list on a blog -- some days it's hard not to focus on what we lost with that pregnancy.  Needless to say, this Christmas has been bittersweet... celebrating a new pregnancy while still mourning my first pregnancy. 

It might seem strange to miss a person I've never met, but I do.  I really do.  Especially during the past few weeks, when I'd once imagined I'd be preparing to meet my baby or possibly even have gotten the chance to snuggle him or her first the first time.

I wish all of you a Merry Christmas, and send lots of hugs to everyone out there missing a loved one.  The holidays can be merry and bright, but they can also be hard when you're missing the ones you love.



"Miss You Most (At Christmas Time)"
The fire is burning
The room's all aglow
Outside the December wind blows
Away in the distance
The carolers sing in the snow
Everybody's laughing
The world is celebrating
And everyone's so happy
Except for me tonight
Because... 

[Chorus:]
I miss you
Most at Christmas time
And I can't get you
Get you off my mind
Every other season comes along
And I'm all right
But then I miss you
Most at Christmas time

I gaze out the window
This cold winters' night
At all of the twinkling lights
Alone in the darkness
Remembering when you were mine
Everybody's smiling
The whole world is rejoicing
And everyone's embracing
Except for you and I
Baby...

Tuesday, September 3, 2013

3 Months

Three months have passed since I heard my doctor inform me that I was miscarrying.  I have now officially been "un-pregnant" for longer than I was pregnant.  It's weird, because in some ways it seems like just yesterday that my husband and I were hopping around our bedroom taking photos and staring excitedly at a simple blue plastic stick, yet it also seems like forever ago.

Emotionally, I am doing a lot better than I started out.  In June, I cried nearly every single day.  In July, I still cried quite often {probably too often for my husband's liking}, and there were many days where I felt that would always be the case.  In August I began to turn a corner, and although there were definitely still tears, hidden away in my pillow, typing at my computer, or while alone in the shower, there were on average more positive days than painful ones.  It's now September, and I am doing my best to keep moving forward... trying my best to remain grateful for the blessings I do have in my life, positive about our future, and hopeful that this month, or some month very soon, we'll be lucky enough to get pregnant again.

"We cannot change yesterday, we can only make the most of today, and look with hope toward tomorrow." - Unknown

I'm so very grateful for all the support I've received over the past few months; from my loving husband, my golden-hearted BFF, and my many online group chat board comrades out there on the world wide web.  I don't think I could've made it through this experience {mostly} unscathed without you.

Tuesday, August 27, 2013

Encouragement From a Long Lost Friend

I recently regained contact with a friend with whom I was once very close when I was younger, but lost touch with over the past 10 years.  I saw on Facebook that she was expecting a baby, so sent her a private message to congratulate her.  To my surprise, she responded by telling me that she and her husband were very excited to be parents, especially because they had experienced 3 miscarriages in the past 2 years.  Three miscarriages???  In two years??  My heart fell into my stomach and I began bawling.  I felt deep despair -- for her and her husband and their families.  But also for myself, and for anyone else who has been through this horrible experience.  And then I started thinking that if she could survive such a terrible thing THREE times, and still go on to try again and eventually have a healthy pregnancy.... maybe there was a little bit of hope for the rest of us?

She was very kind in her message and went into great detail about all 3 of her losses.  As I read, I cried and cried and cried.  I couldn't imagine how anyone could go through all of this and come out on the other side, still standing.  She ended her message by saying:

I wanted to share with you my (long) story because although it was really hard to go through, I did make it through and now I am pregnant!  I hope your journey is not as long and as painful.  Everyone would say to me after I miscarried that this is the way for nature to get rid of a pregnancy that wasn't going to work, or a baby that wouldn't have been healthy.  Nothing anyone said would help me to feel better.  Months after I would still randomly get upset about it.  Right now though, I can tell you that it is all worth it, and I don't think about all that I went through.  I'm just enjoying now and I am so grateful for this pregnancy.

and then...

Take care of yourself and think positively!  Good things happen to good people!  It's the way of the world and what you deserve!

Reading her words made it sound so easy to try to think positively, though thinking positively seems impossibly scary for me at this point.  But, after learning what this woman has been through, I do feel a slight glimmer of hope.  And I feel encouraged that if she could be so very strong and brave enough to try again and again and again, and to maintain hope that one day she'd get her miracle baby, that at the very least I should give it my best to try to follow in her footsteps...

Thursday, August 15, 2013

Not Broken

Have you ever instantly become drawn to a song, without knowing why?  When I first heard Pink's "Just Give Me A Reason" I involuntarily began crying as I listened to the lyrics.  The song is about a couple going through a hard time in their relationship, convincing one another to hold on and give it another try.  Does this apply to my marriage at the moment?  Absolutely not {thankfully}.  Then why was I so immediately smitten??  The tune is catchy for sure, but so are a lot of songs I don't feel such an emotional connection to.

The lyrics speak to me in a different way...about our miscarriage.  This experience has been so hard -- more physically and emotionally difficult than anything else I've been through.  At times during our miscarriage I wasn't sure I could, or wanted to, hold it together.  But the truth is, we're not broken.  We still have one another.  We still have our love, and our marriage.  Together we can, and will, one day try again.  Shortly after our miscarriage I often thought about whether I would always be too scared or too weak to ever try again, or whether our first pregnancy experience would forever taint any future ideas or dreams about starting a family.  I was already so in love with our little one, even though I'd never even seen more of him or her than a blurry sonogram photo.  Losing our first baby was so much to bear, and although I am sure the pain will continue to lessen over time, I don't think it will ever completely disappear.  But now that a couple months have passed, I've realized it's like the song says -- we're not broken, just bent.  And we can learn to love again.

Now every time I hear this song, I feel a little bit of hope.

Just give me a reason
Just a little bit's enough
Just a second we're not broken just bent
And we can learn to love again
It's in the stars
It's been written in the scars on our hearts
That we're not broken just bent
And we can learn to love again

Oh, we can learn to love again
Oh, we can learn to love again
Oh, oh, that we're not broken just bent
And we can learn to love again

Sunday, August 11, 2013

My Miscarriage Exprience

Have you ever heard that getting negative thoughts out of your head and onto paper {or in this case a computer screen} removes their power over you?  Well, this post is my way of investigating that theory.  I realized I've never written out my actual miscarriage experience.  As it was both physically and emotionally traumatic, I thought perhaps by writing everything down it might become less scary to recall or carry around with me as a part of my past.  So here goes...

Warning:  This post is a bit graphic and contains what some might consider TMI.  Proceed at your own risk!

There are multiple types of miscarriage... natural/spontaneous, induced through drugs, surgical.  In my case, I started miscarrying naturally, though was prescribed drugs to help the process along and ended up getting a MVA {a.k.a. Manual Vacuum Aspiration - similar to a D&C but uses vacuum aspiration instead of scraping to remove the tissue, and does not utilize general anesthesia so you're awake in the dr's office}.

When I started miscarrying, I was nearly 11 weeks along into my first pregnancy and didn't know any of this info.  Looking back, I don't feel that my OB gave me all the info I needed to prepare myself as much as possible for the experience, so I'm hoping by sharing my experience that I can help inform others' and maybe draw your attention to some different options.  Read how my scenario played out below.  {I've tried to keep the descriptions as "objective" as possible without a lot of emotional narration.}

Sunday mid-afternoon:  After getting out of the shower, I felt the urge to pee. I didn’t have any pains, but there was a certain discomfort in my pelvic area that made me want to pee before even getting my robe on. Looking down, I saw bright red blood come out in my urine stream and immediately my heart sank. I threw my robe on, screamed for my husband, hopped into bed and propped my feet up on pillows. The time was 2:30pm. I called my OBGYN’s emergency service line and anxiously awaited a return call. The on-call doctor happened to be the one I saw at my recent visits, and she returned the call within a few minutes. She asked whether I had fallen or had any cramps or pain {which I didn’t} and advised that unless I was soaking a pad an hour {which I wasn't -- the blood was really only coming out when I urinated} to wait until Monday morning to come in.  For several hours after that call I laid in bed, scared to death. I knew bright red blood could be bad, but I didn’t have any pains and the blood only seemed to be coming out when I urinated. Of course I spent the rest of the day searching for and reading info about miscarriage, and was generally terrified at the mere possibility.  I don't know if I was too gullible or desperate, or both, but I came across some posts online from women who experienced scary-sounding bleeding during pregnancies that ended up being totally fine.  And, we'd already seen a very healthy heartbeat at 8 weeks, so I tried to convince myself we'd also be fine.  After doing my online research, I slept with my legs up on a pillow and hardly bled on my pad at all at night.

Monday AM:  Woke up, checked for blood. There was a little bit on my pad but no clotting and no pains.... yet.  By the time I got to my doctor's office at 10am though I felt the cramping pretty badly {similar to period but more severe}, and felt the bleeding worsen. Upon arrival at the office, my OB confirmed the embryo was not detectable in the uterus and I was miscarrying. She advised me to try to let the process complete naturally, and sent me home with 4 pills of Methotrexate to take every 6 hours over the next 24 hours to help the process along. The pills caused my bleeding to worsen and the cramping to be VERY severe at times {especially for about 1 hour after each dose}. I've never given birth so I can't say for sure that the pain was like contractions, but it seemed like it to me. Thanks to the pain, I barely slept at all that night which honestly made everything a lot harder to handle.  My OB underplayed the pain I would feel from these pills; had I known I would've tried to time the pills differently so I could've tried to get at least some sleep during the night.  {Side note: I ended up passing a large clot-like tissue in the middle of the night which was about the size of a flattened prune, which for some reason I decided to put in a jar during my hysteria after seeing it because I think I had read something about doing that on a message board. This was VERY traumatic to go through at home, but the tissue sample ended up being used for lab analysis and it was determined that chromosomal abnormalities were the cause of my miscarriage.  So, although this was a very painful thing to have gone through and have seared into my memory, it helped provide me with information that confirmed the miscarriage was not a result of anything I did wrong.  Therefore, if possible I'd advise other women who have the opportunity to do this as well.  My doctor never mentioned the possibility that this could happen, which I feel was a very important omission.  Seeing something like that come out of me is something I'll never ever forget.  It was something I feel I should've been more prepared for by my doctor, not some random online message board I'd once skimmed after finding out I was pregnant.}

Tuesday: After all that physical and emotional trauma, my OB didn't think the progress was significant enough because my uterine lining was still "too thick" for her liking, so she scheduled me for a MVA for Wednesday AM and sent me home with more RXs to take "in order to prepare for the procedure".

Wednesday:  Had to take Misoprostol pill {plus some antibiotics} 2 hours prior to my MVA.  The instructions were to insert vaginally but luckily I had the guts to ask my doctor on Tuesday if there were any other possibilities, and she told me I could put it under my tongue.   {Another thing I would've appreciated her being more forthcoming about!}  At the time I didn't know the side effects/reasons for taking the Misoprostol; I thought it was required for the MVA because she didn't really explain any other reasons for taking it.  However, it had an effect on me similar to the Methotrexate, though without as much cramping pain {but definitely some!}. Since my own experience, I've read up on these drugs and I now know that both the Methotrexate and the Misoprostol are not necessary to take prior to a MVA or D&C -- they're usually used instead of the surgical options.  After taking them, it is also typically recommended to wait anywhere from 1-3 months before trying to conceive again, which was not disclosed to me by my doctor.  I don't know that I would've refused the scripts, but it would've been nice to have the information prior to picking up the pills from my pharmacy and being blindsided, while experiencing severe physical pain and sleep-deprivation.
{Read about my MVA experience here.}

*****

So, what started out for me as a "spontaneous" natural miscarriage ended requiring pills, more pills, and a surgical intervention to complete.  Those 3.5 days were exhausting.  The good news is that about an hour or so after the MVA procedure was complete, the cramping and pain stopped, which was a huge relief.  I was able to take an additional 2 days off from work, which allowed me to sleep, mope and cry at will, and watch TV to try to take my mind off of what I'd been through.  Asking for that additional time off was a good decision.

In sum, the miscarriage process can be hard on your body and emotions, and all treatment options have their pros and cons. It is a personal preference whether you prefer to be at home in private, whether there is someone who can stay with you at home in case of emergency, whether you just want to go the surgical route and get it over with quickly but with the caveat that there will be lots of doctors and poking and prodding involved, etc.

My experience was a combination, so I can now see the pros/cons of the different options. But, all of the steps I experienced occurred at the direction of my doctor -- I was in too much shock to really ask any questions or ask about other options, I just followed orders blindly and cried. The only thing I'm thankful for is that I somehow thought in a moment of panic to capture the tissue sample I passed at home in the middle of the night, because that was the only tissue able to be tested for genetic abnormalities. {There was no useful tissue collected from the MVA.}  That one event ended up being really helpful in my process because it provided some type of information and some form of an answer to explain what had happened.

My advice to anyone out there going through this is to take care of yourself, lean on friends and family for support, and follow your instincts.  Do what feels right for YOU and ask lots of questions until you get the information you need.  Once it's over, take time off from work if possible to rest and try to heal emotionally and physically after the medical process is over.  Nobody should have to go through this -- sadly, too many of us do.

Monday, August 5, 2013

Motherhood

"Motherhood is a state of both the mind and the heart, a sacred place that is yours no matter the distance between you and your child. Not even death can take it away." ~ Dr. Joanne Cacciatore

I live in a large apartment complex, so frequently share the elevator with neighbors from my building.  Recently, I shared the elevator with a little girl, who looked about 2 years old, and her mom.  At one point during the elevator ride from the comfort of her stroller, the little girl looked at me, pointed up at her mom and proudly announced "my mommy".  She then looked around, saw that I was the only other person in the elevator, pointed at me with a bit of confusion and asked "someone else's mommy?" several times, while curiously looking back and forth between her mom and me.  I couldn't quite make out what she was saying at first, but after the second or third time of her repeating the question, I caught on.  I can only imagine how my expression changed, from a friendly smile into a face of stone, likely.  The mom laughed nervously and I just stood there, speechless.  It felt like I was punched in the gut.  How I wished I was someone else's mommy.

Back in June, after I first told my BFF about our miscarriage, she sent me a message encouraging me to take whatever time I needed to grieve and to not let anyone tell me that I don't have a right to mourn my lost baby.  She went on to tell me that "I am a mommy now and no one can take that away".  I remember feeling so stunned upon receiving that part of her message.  Up until that point, I hadn't thought of myself as a mommy.  In fact, part of why I was so angry and scared is that I thought I might never have the chance to be a mommy.  But after thinking about it, I realized that I was a mommy... a mommy without a baby.  At the time, I didn't realize that it was okay to feel that way.  I'd never held my baby -- I'd never even seen him or her except for the shadow on the screen during my first ultrasound.  I hadn't even heard his or her heart beat, though the sonogram tech did.  Medically speaking I didn't even know if I technically ever had a baby; I knew I had an embryo and possibly a fetus {depending on various opinions of when the embryo becomes a fetus}, but could I legitimately say I carried a baby?

It was only after discussing with other women who had been through similar losses that I felt comfortable thinking of myself as a mother without a child.  That phrase sounds like an oxymoron, but in fact it perfectly describes how I feel.  Before my pregnancy and before my loss, I hadn't spent a lot of time thinking about miscarriage.  Of course I knew people who'd experienced miscarriages, but I never stopped to think about how truly horrible such a loss would feel.  I am ashamed to admit this, but I guess I always assumed that miscarriages that occurred in the first few months wouldn't be that  hard or that  traumatic.  I always knew it would be sad, but didn't know it would be life-changing.  I didn't know how utterly in love you could fall for someone so tiny, so fast.  Logically, how could the loss of a 10.5 week old fetus hit me as hard as the death of my 91 year old grandfather, whom I loved for literally my entire life?  I guess I used to assume that since you didn't "meet" the baby before an early miscarriage that it wouldn't be as devastating.  But it was.  It truly was.

Source
Coming to the realization that I am a childless mother in a way helped me admit to my feelings instead of trying to deny or rationalize them away, even if only to myself.  Only then did I feel like I could openly and honestly begin to grieve for my lost baby.  A baby I never did, nor will I ever, have the chance to meet has changed me forever.  In that brief period of 10 weeks and 5 days, I became a mother.  And now, a part of my heart will always belong to my first unborn child.

Wednesday, July 31, 2013

Silent Tears

Source


Today would've marked the 19th week of my pregnancy.  I wonder how it would've felt to reach "the halfway mark"...

I'm nearing the point where I will have been "un-pregnant" for a longer period of time than I was pregnant.  I wonder how that will feel...

I've already been "un-pregnant" for a couple weeks longer than the period during which I knew I was in fact pregnant.  Unfortunately, if anything that fact only makes me feel worse, not better.

I also wonder if or when my brain will stop automatically calculating weekly gestation milestones each and every Wednesday...  Eventually, time will run out.  I would've never been 52 weeks pregnant even if I hadn't miscarried, so I guess this counting ritual technically can't go on much past December.

Eventually, it will be time to move on... time not to forget, but to focus on something new.  I can't imagine it but I guess that's the goal of the grieving process -- processing and accepting what has happened in order to move on.  Do I even want to move on?  Honestly, I'm not sure.  Will time heal this pain?  Only time will tell...

Monday, July 29, 2013

Too Good to Be True

Source
I remember the moment I read in one of my pregnancy books that an estimated 25% of women don't get morning sickness while pregnant.  Most women would be thrilled to find themselves in that category, but I distinctly remember feeling uneasy upon reading that statistic.

You see, I just don't have good luck.  It could be the 2 mirrors I broke while moving into Manhattan 7.5 years ago; it may very well be something else.  But whatever the reason, luck is generally not on my side.  If 25% of women don't get morning sickness, that means 75% do, and those kinds of odds are rarely in my favor.  Nevertheless, I don't consider myself overly superstitious, so I tried not to focus on that fact too much and instead hoped for once I was on the right side of the odds.  But, there were several other reasons I feared this pregnancy seemed too good, or at minimum, too easy, to be true:
  • We got pregnant on our second try.  I know some women struggle for months and some for many years to conceive.  For as long as I can remember, even back to my teenage years, I've always had a deep-seated fear that I'd be unable to get pregnant.  To learn we got pregnant so quickly was very surprising to me after so many years of worrying.
  • Our baby's estimated due date was the 25th.  Not only is my birthday the 25th, but so is my mom's.  I know babies are rarely born on their due date, but the potential for this happening was pretty neat.
  • And not just any 25th... our baby was due on December 25th.  Christmas Day.  I can't think of a more beautiful way to celebrate Christmas than to welcome a new baby of our own into our lives.  I've always loved Christmas {and not just because of the presents!} and it's always been a very big tradition in my family for many extended relatives to gather from near and far.  The news that our baby was expected at Christmastime made the experience all the more magical for both my husband and I.  We were absolutely delighted to learn we were pregnant, and over the moon with excitement when we calculated our due date.  I went to numerous different web sites, repeatedly filling in dates, to be sure it was true!
  • We pulled off two YouTube-worthy surprise family reveals.  Our moms both live about 1.5 hours away {in different directions} and we successfully orchestrated the biggest Mother's Day surprise by inviting them both over for brunch, and then presenting them with matching "grandma to-be" t-shirts while recording their priceless reactions.  And, they didn't suspect a thing.  It was such a fun and memorable surprise, and the timing was perfect because we'd just had our first ultrasound 4 days earlier, so even had photos on hand to insert into their cards.  We even got a baby bottle of bourbon for my brother, so the new uncle-to-be wouldn't feel left out.  Then, a few weeks later, we surprised my aunt, uncle, cousin and 91 year old grandmother who live 7 hours away during what they thought was an experimental laptop video-conferencing for my job.  I prepared and sent via FedEx to my aunt four sealed envelopes, each containing a piece of paper with one of the letters B, A, B, Y.  They opened the envelopes simultaneously and put the clue together while we silently watched from our laptop.  We captured their wonderful reactions on video through the wonders of modern technology, and were so excited to be able to tell them our wonderful news "face to face", even though we couldn't do so in person.  This may not sound like a big deal, but it meant everything to me.  As I mentioned, my grandma is 91 years old.  She is the brightest light in my life and I felt so honored to tell her that she was going to become a great-grandma.  Her reaction was absolutely priceless.
I know these things all probably seem pretty petty, especially as compared to the incredibly serious and solemn occurrence of a miscarriage.  But at the time, these small details magnified the excitement of experiencing our first pregnancy beyond anything we could have imagined.  Everything just came together o perfectly.  Unfortunately, it turned out to be too perfect.  It was too good to be true.

Wednesday, July 17, 2013

Genetic Counseling Update

We met with a genetic counselor from NYU as scheduled on Thursday of last week.  She began the session by explaining that 1 out of 500 people in the general population have a balanced translocation, which predisposes them to conceptions with too much or too little information (i.e., an unbalanced translocation).  She then went on to state that although we were referred for genetic counseling due to the labs resulting from our miscarriage, she suspects it is highly unlikely that either my husband or I possess a translocation.  But, the genetic testing would definitively answer that question for us, and since more information is better than less, this is the reason my OB referred us for counseling even though this was "only" {I use that word begrudgingly here} our first loss.  I guess in many cases, due to either lack of insurance or lack of testable tissue samples, conclusive results are not often available for "first time" miscarriages.  I guess this means we should consider ourselves lucky that we have the opportunity to get more information about what caused our first loss?  I certainly don't feel that way.  I wish we we weren't in this position at all.  But I digress...

She sympathetically and astutely admitted that knowing the reason for the miscarriage or being tested ourselves wouldn't lessen the pain or sadness of our loss, and when she was done summarizing why we were sitting before her and how she could try to help us get information, she asked if we had any questions.  Of course the only question I could muster at that point was "May I have a tissue" since I was already crying, 5 minutes into the appointment.

Our counselor then summarized the lab report for us and explained that 20 cells were tested from our fetal tissue sample.

In 13 of the cells, there was a structural abnormality found known as a balanced Robertsonian Translocation of chromosomes 14 & 15.  A "translocation" is a form of structural abnormality where a portion of one chromosome is transferred to another chromosome.  There are two main types of translocations -- in a "Robertsonian" translocation, an entire chromosome has attached to another at the centromere.  Because this translocation was "balanced", all of the genetic information was present, but rearranged.
Source


Here is a good description if, like us, you're new to this topic {I've indicated with bold font the parts relevant to our fetal tissue results}:
Structural chromosomal anomalies consist of a defect in the structure of 1 or more chromosomes. Translocation is a type of structural abnormality in which parts of chromosomes end up in the wrong location.  Translocations may be reciprocal or Robertsonian. In a reciprocal translocation, pieces from 2 nonhomologous chromosomes have switched places with each other; in a Robertsonian translocation, 2 acrocentric chromosomes -- that is, chromosomes with essentially a single long arm rather than the more normally encountered long and short arms -- are fused together. The acrocentric chromosomes are 13, 14, 24, 15, 21, and 22. In a balanced structural chromosomal anomaly the amount of chromosomal material present is normal, but the configuration is abnormal. An individual carrying a balanced rearrangement would usually not have any phenotypic effect, except for the possibility of impaired fertility and reproduction. Structural chromosomal abnormalities occur in about 1 of 500 persons. These structural defects may be passed from parent to child; therefore, when a structural anomaly (balanced or unbalanced) is found in a fetus or in an individual, karyotype analysis of parents and possibly other relatives is indicated.
This explains why we were referred for karyotyping.  But, we did manage to have the wherewithal to ask the counselor whether Robertsonian translocations could be sporadic mutations (i.e., not inherited) and indeed they can be.  So, we're hoping that's what happened here and that we will not experience this abnormality in future pregnancies.  However, since all the proper genetic material is present in a balanced translocation, it would not cause a miscarriage.

***

In 7 of the cells, there was a numerical chromosomal abnormality found known as a "trisomy", which is the presence of extra chromosomes resulting from segregation errors during cell division.  In other words, there are three copies of a particular chromosome instead of the normal two.  In our case, our fetus had "Trisomy 14".  This is known as an "unbalanced" chromosomal arrangement because there is either too much or too little information present.  As with most trisomies and all unbalanced arrangements, this abnormality is not compatible with life.  Here is an example of what a trisomy looks like:
Source
The slightly reassuring news here is that numerical abnormalities are sporadic (i.e., not inherited), and they do not usually recur in subsequent pregnancies.  According to one source, "In the case of a numerical chromosomal anomaly in a fetus, parental chromosomes are usually normal, so karyotype analysis of the parents is not indicated. The recurrence risk for a chromosomal anomaly following the diagnosis of trisomy in a pregnancy is thought to be about 1%."  I hope this statistic holds true and we are not unlucky enough to experience this abnormality again in a future pregnancy.

***

After meeting with the counselor, we each had one vile of blood drawn and are now anxiously awaiting the results of the karyotyping, which should take approximately 2-4 weeks.

Please keep your fingers crossed for us...

Sunday, July 14, 2013

So tired.

This weekend I drove upstate to my aunt's house for a visit with my extended family.  Keep in mind that most of them do not know about my pregnancy and miscarriage experience.  This isn't because I'm ashamed or don't think it's appropriate to discuss the miscarriage, but moreso because I never got the chance to share the good news with them that we were expecting, and so didn't want their first exposure to our decision about growing our family to be negative.

When I got there, some of my family members commented on how tired I looked.  It was true, I hadn't slept well the night before thanks to a pulled muscle in my neck.

I am so tired.

I'm tired of being sad and tired of being angry.  And I'm tired of pretending that I'm not either of those things.  I'm really tired of crying, but also so tired of trying to hold my tears in.

When we first experienced our miscarriage in June, many kind people I turned to for support expressed their sympathy and encouraged me that things would get better with time.  I wanted to believe that, but when we got the call earlier this month about the genetic testing results, everything suddenly got worse, all over again.

Some happiness researchers suggest that acting the way you want to feel has a big impact on how you will actually feel.  Unfortunately in this case, neither acting happy nor acting un-sad is working for me.  I'm just all the more tired from plastering on a happy face while I got about my days, and I'm not sure how much longer I can "fake it till I make it". 

I really hope I can get back to my "normal" self soon, whatever that is.  I've tried really hard to get back to my typical routine, start once again to exercise consistently, eat more healthily, and spend time doing activities I enjoy.  And when I'm doing those things, I feel almost like my old self.  It's the in-between times and the quiet times at night as I will myself to fall asleep without placing my hand on my stomach or shedding tears that are the hardest.  Trying to lead a "normal" life is just so tiring.

Wednesday, July 10, 2013

What to expect post-MVA

Disclaimer: I am NOT a medical practitioner and the below instructions are NOT intended to replace any instructions you receive from your medical practitioner; these should be referred to only as a general guideline.  They were provided by my OB prior to my Manual Vacuum Aspiration (MVA) procedure; however, every patient and miscarriage is different so your doctor may recommend additional/different instructions for you.  I decided to post the guidelines my OB provided as a general resource since there was limited information about what to expect after a Manual Vacuum Aspiration procedure when I searched for it -- I thought this general information might be helpful to someone considering a MVA procedure.

Post-MVA (Manual Vacuum Aspiration) Instructions

  • No sex, tampons, douching, swimming or tub baths for 2 weeks.
  • You might experience some mild cramps.  However, contact your doctor immediately if you experience strong abdominal cramps.
  • You may have no vaginal bleeding until your next period begins, or you may bleed moderately for as long as two weeks after the procedure.  The bleeding may also intermittently stop and then start again.  All of these bleeding patterns are normal. (Sanitary pads should be worn until the bleeding stops.)
  • The bleeding should not, in any one day, be heavier than a normal period and it should not continue beyond 2 weeks.  If your bleeding is heavier than a normal period or lasts longer than two weeks, contact your doctor.
  • Some women will develop a discharge during the next few weeks.  If an irritation or foul smelling discharge persists, contact your doctor immediately.
  • Your next regular period should begin in 4 - 6 weeks.  If you do not have a period within that time period, contact your doctor.
  • Return to the office for a follow-up within 2 - 3 weeks after the procedure.
  • Continue to eat normal balanced meals.
  • Continue taking pre-natal vitamins if you plan to conceive again.

Monday, July 8, 2013

Only One First

It's been a little over one month since our miscarriage and a part of me still doesn't (want to) believe this happened. I am so upset that this happened to us but it's especially hard that it happened to our first pregnancy.

Thinking about it, there are few things in life that can so easily cause so much pure joy... and learning that we were expecting a baby was certainly one of them in our case.  We hadn't told many people, but the few we had were, like us, simply giddy at the news.  My husband and I were over the moon with delight knowing that we would become a family of three later this year.  To have had such a thrilling experience interrupted so abruptly was emotionally painful, apart from the actual pain we experienced from the occurrence of the miscarriage.  It still is a huge source of anger for me.  It's just not fair.  We hadn't even had the chance to share our terrific news with all of our loves ones before the news turned terrible.

On the other hand, those we did share the exciting news with were so supportive!  It broke my heart to have to bring their hopes crashing down to Earth from Cloud 9.  I immediately regretted sharing the news with them in the first place.  This may sound petty, but I have all these great photos and some really heartfelt video clips of how we we creatively shared the news with both of our moms and my brother (with personalized matching t-shirts during our joint mother's day celebration!), my 91 year old grandma (who has been patiently waiting for a great grandchild to come into her life and who literally prayed to God when I told her the news that she would still be around in December to meet the baby), my aunt, uncle and cousin (who were great sports about agreeing to participate in a "top secret" video-conference with me to "beta test" a new product related to my job - that was my cover for getting them all on the laptop together for filming) -- who were all SO happy!  I should smile at the thought of these memories, not feel overcome with sadness.  I should be organizing the photos into scrap books and creating a video montage of the exciting news as it's spread through our families, to watch on a special 1st birthday, or to show to our future baby.  What am I supposed to do with all of those photos, videos and creative ideas now???

I feel like this miscarriage experience completely ruined my idea of "pregnancy" and ruined the excitement of any pregnancies I may (hopefully) have in the future.  Will I ever be as blissfully hopeful again?  If I am lucky enough to get pregnant again, will I be filled with dread and fear 24/7?  Will we feel comfortable telling anyone about it, if there is a next time?  That sounds like an awful way to think about the future, but that's what I do think about.

There will only ever be one "first" pregnancy for us, and this was it.  Even though it didn't work out as we hoped and dreamed, that's it.  No rewind button.  No do-overs.  This horrible experience is the only "first pregnancy" we'll ever have, and although our baby is gone forever, it feels as if my anger and disappointment about how this pregnancy ended will always haunt me.  It's just not fair.

Friday, July 5, 2013

Genetic Counseling

Since Tuesday's phone call, I've been trying to wrap my head around the idea of genetic counseling and testing.  Of course one of the first things I did after speaking with my husband is turn to a trusted online support group for help and information.  Luckily, I received some very good responses that helped me to stop assuming only worst-case scenarios (even if only momentarily), so I thought I'd share some of this helpful and wise advice:

Counseling
  • Seeing a genetic counselor isn't the same as needing genetic testing. It's just talking with someone who knows more about this sort of thing than our OB, and can answer exactly the kinds of questions we have: What exactly was the genetic error in this case? How likely is it to happen again? What are the statistics for it being a random error? Should my husband and I be tested? 
  • My OB might be required to send us to genetic counselor because we did tissue sample analysis of the miscarriage product and came back with a result indicating this abnormality.  (It may not necessarily be because we are in some path for persistent genetic defect.)
  • Seeing a genetic counselor can be a good, reassuring experience because they can put things into perspective. (Seeing one doesn't always have to be a bad thing.)
  • The genetic counselor will have had extensive training both in genetics and probability to really explain what is happening. There is a lot of genetics information on the internet but just enough to get one to the "shoulder of knowledge" where you know enough to scare yourself but not enough to fully understand the situation.
  • Genetic counseling is not something to be afraid of.  Most doctors really do not know very much about genetics and genetic issues, but genetic counselors do!

Testing
  • We'll need to decide if the information from the test would be useful to us. If we'd rather not know, or if we wouldn't do anything different based on the test results, then we might not want to get tested. If we would do something different, or if having the knowledge would help us even if we don't change any plans or actions, then we should get the testing done.
  • With a translocation, it could be that the mutation happened in the embryo, or it could be that me or my husband have the mutation as well. Genetic testing can tell us which of those is the case.  If it turns out that neither of us has a translocation, then our odds are pretty much the same as average and we can proceed with future conceptions without a cloud of dread hanging over our heads.
  • If the mutation did come from one of us, then any particular embryo could have about a 50-80% chance of having either too much or not enough genetic material. We'd still have a shot at a healthy pregnancy conceived on our own, but our risk of miscarriage or chromosome problems would be high. So, depending on the results of the genetic testing, we might decide to get IVF with pre-implantation genetic diagnosis, in order to attempt only getting implanted with embryos with good chromosomes. This would reduce any future miscarriage risk (but of course IVF has its own drawbacks).
  • Just because we don't know of any inherited chromosomal abnormalities in our families doesn't mean they don't exist. The only way to know is to test, and knowing means that if we want to do prenatal testing for a future pregnancy we will know what to ask them to look for. (CVS/amnio does not test for "all" issues; only a handful of common ones are routinely tested unless there is reason to ask for specific additional testing.)

Bottom Line:  Step away from the internet searches for now, focus on meeting with a counselor and see what the testing results really say.

I'm still so sad and angry though that this happened in the first place.  Having to meet with the counselor makes it feel even more real when I'm having a hard time accepting what has happened.

I keep trying to remind myself that about 30% of known pregnancies end in miscarriage. While this was our first, it doesn't necessarily mean we won't ever go on to have a healthy baby.  Most miscarriages are due to a chromosomal abnormality and most are never even sent for genetic analysis, so we have information that many couples would not get, or wouldn't get unless they had several miscarriages.  I know I should be grateful for this information and the option to meet with a counselor after our first loss, but actually feeling that way is easier said than done.

Wednesday, July 3, 2013

Robertsonian Translocation

Yesterday afternoon my OB called to let me know that the labs from my miscarriage tissue are back and the results show a chromosomal abnormality called Robertsonian Translocation.  She also advised  my husband and I to meet with a genetic counselor, and that we may need to undergo genetic testing to see if we are "normal".

Immediately, I panicked.  Hearing the words "genetic counselor" scared the life out of me, and I called my husband in tears.  We both quickly did some Google searches, which caused only more fear and confusion for me.  I frantically checked baby blogs and message boards, searching for information and any bits of hope I could find.  I know it doesn't help to think of worst case scenarios but that's all that's been running through my head.  I'm petrified that I'll never have a successful pregnancy and desperate for info that points to the contrary.  The problem is, I don't even know what I'm looking for just yet.  There are apparently balanced and unbalanced translocations (I'm not sure which one was discovered in this case), and any prognosis about future pregnancies depends on whether my husband or I are carriers.  I am assuming this is why the counseling was recommended.

I guess it is possible that it was a random error, and I guess that's what I'm hoping for; however, the fact that my OB referred me for genetic counseling makes me nervous because when I initially brought the tissue sample in to be tested, the doctor said most times the chromosomal abnormalities are not indicative of any issue and testing is not typically needed until 2-3 miscarriages or over age 35. But this was my first miscarriage and I'm only 32?!  My OB did not get into details on the phone yesterday besides mentioning the presence of Robertsonian Translocation abnormality when she called, so I don't know if she has any additional information she didn't share with me that has caused enough concern for her to refer me to a genetic counselor for testing, or whether such a referral is routine for such abnormalities.

Although I am scared to death to find out whether the translocation was a random error during cell division or whether it was inherited (i.e., we are carriers) and therefore will affect any future pregnancies, I know I should want this information.  Knowledge is power, right?  The problem is... more information is not going to change the fact that I am desperate to get pregnant again and birth a healthy baby.  What if this wasn't a fluke and we are carriers?  What if we discover that our chance of having a healthy baby is low?  Is that something I will be able to handle emotionally?  Honestly, I'm not sure I can.

I feel like this is a never-ending nightmare that is only getting worse instead of better with time.

I know there is nothing I can do right now but wait to meet with the counselor, and see whether genetic testing is necessary, but the waiting is killing me (and it's only been a day).  For now, I am going to stop searching the internet and baby chat boards for info, and try to keep an open mind until we meet with the counselor next Thursday. I guess the best case scenario would be for this translocation to have been a fluke mutation during cell division and not genetically inherited from my husband or me, so I will hope and pray for that outcome.

Tuesday, July 2, 2013

One Month

"Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity."  ~Author Unknown

Today marks one month since our miscarriage started.  June 2nd was the beginning of the end for our first little baby-to-be.  This entire experience has been traumatic, but I think the hardest part was having to say good-bye to a baby that we never even had the chance to say hello to.  How do you mourn someone you've never met?  In the weeks we knew we were pregnant, we dreamed so many dreams.  We pondered the gender, brainstormed some names, researched doctors and hospitals and baby care classes, fantasized about snuggling up under the covers as a family of 3, and imagined what the greatest Christmas gift in the world would look like.  We hoped and planned for a future that will never be.

Although I don't expect this aching hole in my heart to ever fully heal, I thought that I was at least on the path to recovery.  But looking at the calendar today ripped any sense of progress up into pieces.  How can it be that I've been not-pregnant for a full month?  I thought as time passed, things would get easier.  But for some reason, realizing that much time has passed sort of makes me feel worse.  I know that a part of me will always ache for our little baby that never arrived; I just hope that as more time passes it won't always hurt this much...

Friday, June 28, 2013

AF is here

Well, it looks like Aunt Flo has arrived.  On the one hand, I'm relieved -- I guess this means my body is hopefully OK and trying to get back to "normal".  On the other hand, experiencing menstruation after being pregnant is a harsh reminder that I'm no longer pregnant, in addition to being a very vivid reminder of the phsyical miscarriage process.  I've never been fond of having my period {I'm sure many women feel this way} but this time it's much worse than a mere inconvenience.  It feels as if I'm physically reliving my experience all over again.  Will it always be like this?

And just in case getting my period isn't reminder enough that I no longer have a baby growing inside of me, I was posed a really difficult question to answer during a routing dental cleaning today.  "You're not pregnant, are you?!" my dental hygienist exclaimed while she worked. Apparently my gums are puffy, which can be caused by hormones.  I silently shook my head and somehow managed to hold in my tears until I left the office.

Nope, I'm not.

Thursday, June 27, 2013

Awaiting AF

Source
For those who aren't aware, "Aunt Flo" is a euphemism for your period.  It's also referred to as "AF" in reproductive community boards, as I've come to learn.  Now that I have the terminology down, I have only one big remaining question...

Where oh where is my Aunt Flo?!

My OB advised before my MVA that my regular AF should return within 4-6 weeks.  But, I generally have shorter-than-typical cycles, so I've been expecting to receive it sooner than that.  In fact, if this were a regular cycle, I probably would've received it by yesterday.  I don't know why on Earth I thought the timing here might be predictable - nothing about this experience makes any sense to me whatsoever.  I'm not even sure why I'm so anxious to get it; I certainly don't need any more reminders of the pregnancy I lost or the awful miscarriage process.  I guess maybe I'm hoping that when AF arrives, there's a chance I might feel slightly "back to normal" again?  {Whatever that means.}  That, and the sooner it comes, the sooner we can "try" again.  I know I can't, and wouldn't ever want to, replace the baby we lost -- but losing this pregnancy has reinforced for me how much I really want to be a mother.

It figures the one time I actually want my period to arrive, it's nowhere to be found...
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