Wednesday, July 31, 2013

Silent Tears


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

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.

Thursday, July 25, 2013


We finally got the much anticipated call from our Genetic Counselor, and we're normal!  {Chromosomally speaking anyway.}  Our karyotype results show that my husband and I each have 46 normal chromosomes, with no translocations.  That's good news.

It means the chromosomal abnormalities that caused our miscarriage were not inherited; they were "de novo" or new, likely due to errors during cell division.

It doesn't mean that they won't occur again; it's certainly not impossible, though from the research I've done so far, it seems improbable that we'll experience a chromosomal abnormality twice in a row.  As we've come to realize, there are no guarantees -- but I'll happily accept this prognosis.

This has been the longest 13 days of my life.  Who am I kidding... it's been the longest 53 days of my life.  Although hearing these results don't change or lessen in any way the loss of our first pregnancy, confirming that the miscarriage was not due to any inherited abnormalities does, finally, give me some sense of hope back.

We still have a few unanswered questions, I plan on doing some more research online, and we'll likely place a follow-up call to the Genetic Counselor to obtain more information; but for now I'm going to enjoy this small bit of relief.

Tuesday, July 23, 2013

Royal Baby

In case you haven't heard, it's a boy!  Being a hopeless romantic, I've been following Will and Kate's love story over the past several years with the rest of the tabloid-reading population.  It's not just their fame, fortune and royal standing that attracts my attention... I am intrigued by how truly in love I believe them to be.  Against the odds, and despite much external interference, a "commoner" and a real live price fell in love and got married.

It's likely that others of you out there, like me, believe actual love for one another should be the basis for and of all marriages.  Unfortunately, and especially in the crazy world of celebrities, it seems that's not always the case.  These two, on the other hand, appear genuinely in love with one another.  I don't know for sure that they are, but it consistently appears so from the outside.

I respect the fact that they took their time dating before walking down the aisle and that they've taken strides to retain some normalcy in their very privileged lives and to ensure the protection of their private time together, and I love that they seem to only have eyes for one another when they're together in public despite the millions of eyes and numerous cameras that follow them.  By historical royal standards, they've even taken their time to adjust together as royal newlyweds before heading down the road to parenthood.  It seems the wait was very worthwhile.

The happiness and excitement displayed on their faces as they introduced their new baby boy to the world today was absolutely beautiful to see.  They don't look like royalty.  They don't appear to be anything other than a couple of glowing new parents enamored with their little one.  As they should be.  I can only imagine how relieved, joyful and hopeful the Duke and Duchess are about their new arrival.

As I've come to intimately understand over the last several months, having a baby is a true blessing that should not be taken for granted.  It is one of the most important moments in life, and they are so lucky to be able to share this experience with one another.  I would give anything to have a similar photo featuring my husband and me as new parents with our own baby.  I dream of and try to remain hopeful that one day we'll have the opportunity to embark on a new journey together, as a family of 3.

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.

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:
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:

  • 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!

  • 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...
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