All Tricks and No Treats

Halloween is probably my favorite holiday.  Not for mountains of candy like it is for most kids and many adults, but for the chance to dress up and play a part for the evening.  Many of us have big parties to go to where we tend to drink a little too much and revel with our friends.  It is a break from the boredom, stress, and responsibilities that generally come with being an adult.  I tend to spend months planning and often making parts of my costume for the year.

The fun has definitely been sucked out of Halloween the past couple of years.  Last year we had our post IVF recap meeting with our RE the day before our party.  I did not take the news well that our eggs were poor quality and that they suggested going through yet another IVF cycle to try to get better eggs.  I wasn't able to stop crying long enough to get my makeup and costume on so that kind of ruined going to the party.  I also made Mark hand out the Halloween candy.

This year we just didn't have a Halloween party, so the costume will go unworn for yet another year.  If we really wanted to, we could have planned one, but since it was too close to getting back from India we passed.

The trick or treating was another matter.

After finding out that I just had yet another pregnancy loss, I felt that Halloween was a little too soon and a little too much to handle.  Just the thought of seeing a bunch of children running around in their adorable costumes felt like a knife through my heart - seeing it in person would probably ensure a teary breakdown. We decided that we would leave a bowl of candy on the porch and go to dinner and a movie to make sure that we weren't home during trick or treating.

Unfortunately, not being home for trick or treating did not protect me from all of the sadness that Halloween brings.  Oh no.  The onslaught also spills into work.  Halloween is a big deal where I work - there are treats, a costume contest and trick or treating in the afternoon.  Because the possibility of children could extend to the entire day and not just during trick or treating (based on prior experience), I decided that it was just safer to work from home and avoid the entire day to begin with.

I know that other infertiles have the same feelings about Halloween, Holidays, Family Gatherings, etc. etc.  An infertile friend told me that they had a year that they also weren't home on Halloween.  Depending on where we are at, we may be able to get past our own sadness and truly be happy for all of the children that everyone else seems to have no trouble having.

So while trick or treating, when you pass the home with no lights on don't judge them so harshly.  Yes, they may be cheap assholes who just don't want to spend the money on candy, or they may be a childless couple who sees every costumed child as a reminder of the child they may never be able to dress up for Halloween.

Sorry, Try Again.....

I woke up this morning and Mark said that we got an email from India - the beta is now negative.  He gave me a hug and said he was sorry.  I got up and read the email myself and started to process.  In my mind I was thinking - I knew it - and was sorry that I had been right all along.

What this means to all of you not versed in infertility speak is that we were pregnant, and now we are not pregnant - we had an early miscarriage. 

A few people know about everything and they have been being wonderfully supportive.  A couple keep telling me that I need to be more positive.  Well, it is easier to take bad news when you weren't overly positive about it in the first place.  When you get good news you are then pleasantly surprised.  Unfortunately, I tend not to be pleasantly surprised that often - especially in the fertility department.

Despite my self-protective nature, I am taking this news harder than I thought that I would.  I thought that since it is not happening to me, and that I kept telling myself the pregnancy is only theoretical at this point, that somehow this news would be easier to take.  Somehow my protective shell would keep me from being incredibly sad, feeling disappointed, and breaking down into tears.  Turns out my shell is not as strong as I thought it was.

We can try again in 10-15 days if everything resets for our surrogate.  We also should start looking into what we need to do to ship our frozen embryos (if needed), since I have read that can be a process in and of itself.

For now I will try to keep my chin up and be as positive as I can.

But, deep down I fear that the remaining six embryos will suffer the same fate.....

 

Positive?

We received our initial beta test results today - 28.6.  While this is not an absolute negative, it is not overwhelmingly positive either.  At a gestational age of 5 weeks and a fetal age of 3 weeks (I will discuss this in a later post - I didn't get it either and kept calculating the due date wrong), a normal HCG level is anything from 18 - 7,340.  Once an embryo has implanted the HCG level should double (or nearly double) every 48-72 hours.  They will be repeating the beta in two days to see if the HCG level is rising appropriately.

Right now we cannot be certain of anything - positive or negative.  We get to ride the beta roller-coaster for a while.....

The 2WW becomes the 3WW

We have not yet heard from India.  We were supposed to get the first BETA results on Tuesday.  We sent an email yesterday.  The reply we received today was that we will receive the test results on Monday.  Monday!?  WTF!? 

I guess people weren't kidding when they said that the only thing that runs on time in India is the trains.  I admit that we felt our fair share of "India Time" while we were there.  We quickly learned that "five minutes" could actually mean anything from 1/2 hour to 2 hours.  We learned to not be in a hurry to get anywhere and to never expect appointments to start on time.  However, we are back in the states now and are no longer on India Time - things are supposed to happen WHEN they are supposed to happen.

We are trying not to read into this.  I fear that the first BETA wasn't conclusive and that they are waiting for a more conclusive result.  Mark thinks that they just haven't done the test yet.  Mark is probably right.  We need to try to be patient and wait to see what Monday brings.

"Part of the healing process is sharing with other people who care." Jerry Cantrell

Up until recently, I have been pretty quiet about my infertility.  For a number of years I simply wasn't working towards a baby - either by trying to get pregnant myself or trying to get someone else pregnant.  So, why focus on an issue that isn't an issue at that moment?

While getting ready for my first IVF cycle I found out about Resolve - The National Infertility Association and all of the wonderful services that they provide - their website, publications, online community and even local support groups.  I stalked a while on the online boards - gleaning helpful information here and there.  I finally posted a couple of times and even found a small group of women who were also pursuing surrogacy in India.

The online community has been invaluable to me.  In a world where infertiles are the minority it is so nice to talk with other women who are having fertility issues, some even your own same issue!  And, there are rules - you need to be nice and supportive or your posts will be deleted and you could get kicked out of the community.  And, there is the concept of "MENTS".  You use MENTS in a post when you have good news or bad news that could be sensitive to some readers - births or miscarriages.  It is a great system.  It allows you to pick and choose what you want to read or are able to read - some days are better than others.

Lots of us there wish that many other things had MENTS.  Take Facebook for example.  It is full of pictures of babies and children and happy families with babies and children.  While I am, and most other infertiles are REALLY happy for our friends, many times while we are forcing the happy smile we are also sad for ourselves.  Facebook is also tough in that you never know what is going to pop up.  The day after we found out that our friend couldn't be our surrogate I happened to look at Facebook before work.  A big ultrasound picture popped up.  Too late, I saw it.....my heart sank.  At that moment all I could feel is how I may never have one of those of my own.  I had to redo my makeup that morning.

A few people in the Resolve online support community talked about going to local support groups.  Some of them had good things to say, some bad.  I guess like all things it just depends on who is in your group.  I thought about going to a support group, especially last fall.  That was a dark time for me.  We had gone through a cancelled cycle and a less than stellar IVF cycle which resulted in the doctor suggesting that we try AGAIN for better egg quality.  The last thing I wanted to do was try again.  I just wanted to cry and feel sorry for myself and feel like a big fertility failure.  Yes, a support group probably would have been helpful.

I recently saw a post again about support groups.  I looked on Resolve and found two local groups.  I reached out to the contacts and found out that one was meeting today.  I RSVP'd....

I was a little nervous about the whole thing.  Outside of this blog which was also a recent endeavor I haven't shared a lot about my infertility adventure.  You worry that your story isn't that bad or that you haven't suffered enough, or you could be on the opposite extreme and "win".  In the end though that is not what it is about.  It is about being supportive of other women and men who are also going through fertility issues.  And they in turn are supportive of you.  They understand what you are going through.  They understand how hard it is to be optimistic about something where you have suffered failures.  They GET IT.

I plan on going often.  I wish I had gone a long time ago....

October is Pregnancy and Infant Loss Awareness Month

I admit that I have been pretty focused on my own stuff at the moment and and slowly starting to peek my head out of my shell and get caught up on what is going on in the world around me.  One of the things that came to my attention was that October is Pregnancy and Infant Loss Awareness Month.  It began in the United States on October 25, 1988 when President Ronald Reagan designated through a Presidential Proclamation that the month should be recognized as National Pregnancy and Infant Loss Awareness month.


October 15th is Pregnancy and Infant Loss Remembrance Day, which is a day of remembrance for pregnancy loss and infant death, which includes but is not limited to miscarriage, stillbirth, SIDS, or the death of a newborn.  The day is observed with remembrance ceremonies and candle-lighting vigils, concluding with the International Wave of Light, a worldwide lighting of candles at 7:00 p.m.

I missed my opportunity to light my candles, as such I am lighting them now.

I haven't thought much about my losses for a long time.  They so long ago (13 & 14 years ago).  They were also babies that were never meant to be in the first place.  My doctor told me that I would never have children, so when in 2000 when I found out I was pregnant, the miscarriage that soon followed was expected.  I admit that it still hurt.  For a few short weeks I thought that maybe it had a chance.

The second loss is more difficult.  That loss was induced.  In 2001, shortly after coming moving to the twin cities, I found out that I was pregnant.  I was shocked.  The first pregnancy occurred because I stopped taking the pill - I was told I was never going to get pregnant.  This time I was taking the pill - although admittedly not as regularly as I should.

Almost right after I found out I was pregnant I started having problems.  I started feeling faint a lot.  I almost passed out while driving one day.  I was also having a lot of pain on my right side - my uterus is right-sided.  One day the pain was so bad we went to the emergency room.  I was sent back right away for an ultrasound.  They were concerned that I had an ectopic due to my symptoms.

The good news was that it was not an ectopic.  I could tell from the ultrasound technicians face that was the only good news.  For a few moments I saw my baby on the monitor, it was clearly in distress, it was also clearly malformed.  We were told that I was not in immediate danger and that they would send the results to my doctor for a full diagnosis.

Luckily I had found a doctor right after moving who specialized in high risk pregnancies.  She had a patient with a bicornuate uterus who had recently achieved a live birth.  It was, however, not a severe bicornuate case and that type of uterine abnormality has better pregnancy stats than a unicornuate, but she was nevertheless hopeful that someday we would achieve a live birth of our own.

This was not going to be that time.  There were several things that were not in our favor this time.  First, the baby was malformed, it had so far developed arms but not legs.  This could have been due to my uterus shape, this could have been due to exposure to nicotine and alcohol (I had no idea that I was pregnant and had some bad habits at age 26).  Babies with congenital limb deformities often have difficulty with normal development and struggle with developing motor skills, need assistance with daily activities, cannot independently care for themselves once they are older, are limited in movement, and can even develop emotional or psychological issues related to physical appearance.

But wait, there's more.  The position of the baby in my uterus was less than ideal.  Instead of being centered or in the main body of my uterus it was "up in the horn".  Placement of the developing embryo is especially important with uterine abnormalities.  This also was pointing to the fact that my uterus didn't seem to be stretching properly, one of the unfortunate side effects of uterine abnormalities.  My symptoms were pointing to a very painful pregnancy, a pregnancy that most likely was going to lead to either a uterine rupture (which is life-threatening to both me and the baby), a second trimester pregnancy loss, or a very preterm baby with severe abnormalities

For my health, and for the fact that this baby just really didn't stand a chance, we decided to terminate the pregnancy.  When I say "we", I should really say "I".  My ex-husband was against termination.  It didn't matter to him the facts that were clearly in front of him.  He was willing to put my life on the line for the possibility of a child.  I was not.  Some days I feel like a horrible selfish person for this decision, but other days I realize that it would have been even more selfish to leave a child with disabilities without a mother.

I admit that I have spent years stuffing this memory deep down in the core of my being.  I have told myself over and over again that this was the right decision.  Not only would this child, if somehow the pregnancy lasted long enough for the child to be born alive and viable, have severe disabilities, it would have been born into a very volatile and broken marriage.  Even so, I still feel very sad, and I still feel very guilty.  When I stop to think about it, I start to cry.  I am crying now.

“When a child loses a parent they are called an orphan. When a spouse loses his or her partner they are called a widow/widower. When a parent loses their child there isn’t a word to describe them.”

It Could Always Be Worse.....

So it has been a little rough getting back into the swing of things after being gone for two weeks.  First, jet lag is no joke.  Last night is the first night that I finally slept all night and didn't wake up randomly at weird times.  It also takes a while to get the house back to normal - laundry, getting the fridge restocked, going through mail, paying bills, etc. etc.  And then there's work.....ahhh work.

I have the less than ideal situation where I am the only person in my department.  It was not always this way, but that is another long story.  As the only person in my department, there is no one there to cover for me as no one else does what I do.  So, in order to keep the wheels from coming off the bus, I was answering emails and working as much as I could at the hotel at night while we were gone.  Unfortunately there is only so much that you can do remotely and somehow new #$% decides to go wrong once you've got something else under control.

This also holds true for the female body apparently.  Guys you may want to stop reading now.

I was working late as I am still digging our from under a big pile of doo doo at work.  I was actually glad of this as at least there was no one else around when IT happened.  I am sitting there and all of a sudden I feel something rush out of me.  I try to calmly, but quickly make it to the rest room to figure out what the heck is going on.  There I discover blood, lots of blood, lots of bright red blood.

Needless to say, it was a bit unsettling.  While unsettling, I didn't think it seemed life threatening.  I remember something about you not needing to go to the doctor unless you are bleeding through a pad an hour, so I figure that I'd best go home and monitor for a while before I decide to freak out and go to the doctor.  I also decide that these underwear are probably beyond saving and hope that my jeans make it through this ordeal.  Oh yeah, right through the jeans too.

Now I realize that some women have to deal with this sort of thing month after month.  I have fortunately been spared this until now.  I have enjoyed very light, very regular periods since they started.  My periods only last 3-4 days, I don't need more than slender regular tampons, and I have pretty mild cramping and just a little headaches.  The week before I get bloaty - but not like 10 pounds or anything.  So 1) getting my period an entire week early and 2) having a bloody disaster are not the norm.

I know that some of you are thinking that I won the lottery of periods.  Yes and No.  Yes from a general life standpoint in that it is really nice to know when your period is coming and that it really isn't that bad.  While the regular period is also great from a fertility standpoint, the light periods ARE NOT.  The light periods are because I tend to have a very thin lining each month.  Thin linings are bad from a fertility stand point.  VERY BAD.  Inadequate uterine lining results in lower pregnancy rates and miscarriages.  It could have contributed to my earlier losses.

While I was waiting to see if I was meeting the criteria for a doctor visit I did a little research to see if I could figure out what was going on.  It seems that the IVF hormones really do a number on your body.  I read several accounts of crazy heavy periods at strange times post IVF.  Most clinics recommend taking off at least one cycle in between IVF attemps - mostly because it takes a while for your body to get back on track after the hormones.

Turns out that despite the heavy flow I am not in the danger zone.  I'll just need to make sure I don't wear anything nice the next few days.....