a year long miscarriage

Warning, this post is LONG.  I have decided to try and get through the rest of my story {as it is up until today} in one post.  Now that it is 2013, Graham and I are both ready to have this be THE year.  Although we will never forget the past two years, as they are a part of who we are today, we do want to start with a clean slate {so to speak} as we begin trying again.  We are more focused on looking forward! 

That is why I had briefly thought about not writing about any of this past year, but I realized that updates going forward may not make sense otherwise!  So, here it goes.

Essentially I have gotten everyone caught up through my second miscarriage which happened in December of 2011.  It took {almost exactly} one year before I was pregnant again with the miscarriage that happened on Thanksgiving Day of 2012 {the official “medical” date, but by this point we knew the outcome}.

After the second miscarriage, we discussed what we would like to do prior to getting pregnant again.  Our initial thinking was that my thyroid acting so sporadically once I was pregnant was most likely a main contributing factor for the miscarriages.  Therefore, my OB wanted to see that my thyroid levels were in the normal range {and seemingly stable} for three consecutive months before we started trying again.

We never imagined how UNstable my thyroid was going to be and it took almost a year before we were given the “okay” to start trying again {it took us two cycles to get pregnant once we were back on that course}.

The most frustrating part of trying to get my thyroid stabilized was that all we could do was wait.  We had to let at least a month go by between checking my levels…one single month started to feel like an eternity.  However, each month we tested, my levels we became more and more confusing.  My body wasn’t reacting to the dosages I was being given.  Even if my meds were taken down {and therefore my thyroid levels should have been going up}, my levels would still go down. 

After three months of unexplainable results, my OB recommended I see an endocrinologist.  She wanted the endocrinologist not only to get my thyroid stabilized prior to getting pregnant, but then also monitor it during pregnancy {because obviously my thyroid was “finicky”}.  The problem was that I couldn’t get into her recommended endocrinologist until August {this was in March}.

So, I went back to my family practice doctor in the meantime.  He was going to continue to monitor my thyroid levels monthly until it was time to see the endocrinologist.  By June, he was also nodding his head in agreement that I definitely needed an endocrinologist. 

However, I was finally able to get some good news.  He referred me to see one of the endocrinologists at his hospital {rather than going to the one in Madison}.  This Endo {how I will now refer to the doctor} was able to get me in much earlier than the August appointment in Madison, and my OB was okay with the referral, so I secured the appointment right away.  FINALLY, I felt.

During the time with my family practice doctor, and then once seeing my Endo, I was starting to feel like we shouldn’t JUST be looking at my thyroid prior to this next pregnancy.  After explaining both of the miscarriages to these two doctors {how far along I was, etc}, they were both not 100% convinced that my thyroid would be the ONLY thing to check on.  Both of them mentioned clotting disorders and because of this, I started to change my thought process as well.

Now, understand that my OB had also asked {after the second miscarriage} if I would like to do the Recurrent Pregnancy Loss {RPL} panel testing…the testing that would check for any clotting disorders, among other things.  She said most times they wait until after a third miscarriage to do this testing, but given my history, she would be okay with doing the testing now.

Originally Graham and I declined the testing thinking that if we got my thyroid under control, making sure we could rule that out a a reason for a miscarriage {for the most part}, then we would do the RPL panel if I had a third miscarriage.

However, the closer we got to actually being able to try again, and especially with my Endo now suggesting that my thyroid was probably not the main factor, I changed my mind and wanted the RPL panel.

Tip for today:  You can change your mind.  Luckily I have a very good relationship with my OB, so when I called and told her I had changed my mind, it was not an issue….but even if you do not have a long history with your doctor, do not ever feel like you can’t change your mind or ask questions!

Given that the RPL panel was just blood tests for me and Graham, it {all of a sudden} became a no-brainer to do.  I was now convinced MORE data would be better going into the next pregnancy….and I am so glad we decided to do the panel!

Graham’s tests came back with flying colors.  All of the chromosome testing they do with the male portion of the RPL panel {all blood tests} came back perfectly normal.

My tests, however, came back with a different story.  So much so that we had to go in and actually have an hour long appointment with my OB {rather than just finding out the results over the phone}.

They took 11 tubes of blood from me {yes, it was that many because the testing was going to be done in labs all over the country with how my hospital handles the RPL}.  It was discovered that I have a genetic flaw….I am heterozygous with the Factor V Leiden genetic mutation.  They also found that I was positive for having antiphospholipids present in my blood {this positive was confirmed with a second test 12 weeks later}.

What does this mean?  Well, I have the same clotting disorder my family practice doctor and Endo both thought would be worth checking into prior to getting pregnant again.  Now, this genetic clotting thing may most likely never cause me issues outside of being pregnant.  I am not taking any sort of medication {while not pregnant}, for now it is just something I keep in mind for the future if I do start having heart issues, etc.

However, having this genetic flaw and the antiphospholipids present during a pregnancy DOES require additional meds and care.  The problem lies in the fact that my body is more prone to producing clots and even if I have a miniscule clot present in my blood while not pregnant {and it not causing an issue}, that itty-bitty clot can EASILY block the placenta and baby from getting the blood that it needs to grow while pregnant. 

With this news, things were all starting to make sense.  With both of the first two miscarriages, the fetus was developing, just not quite enough and not quite fast enough……I honestly felt like it was a miracle we did this RPL panel because finding this was going to allow me to go into the next pregnancy feeling a bit more confident things would go okay.

Once I got pregnant, I discovered what it truly meant to have this clotting disorder while pregnant.  I have to give myself a shot of Lovenox every day in my belly and I have to take a baby aspirin daily.  Both of these things are meant to thin my blood and hopefully prevent any clotting {even those miniscule, otherwise non-issue clots}.

I have never had to give myself a shot before, but I have had PLENTY of blood drawn in my life, so I thought I could handle it.  Let me tell you, it is a lot harder than you think once you actually have to prick yourself.

The shots aren’t great to have to give yourself, but they aren’t terrible after the first few are over {they just sting for a few moments afterwards}.  But, just like my OB warned me, even after only taking seven shots I ended up with HUGE bruises….I can’t imagine what my belly will look like after giving myself a shot during an entire pregnancy.

Let’s just say I will never have the bare naked belly pregnancy pics posted anywhere!

With being on blood thinners, and being an overly-cautious person, I also knew I would be living in a bubble for nine months.  All I could think was that I would get into a car accident, scrape myself badly, the paramedics wouldn’t know I was on blood thinners, and I would die.  On top of that, traveling long distances, and being away from home, can be very stressful.  Stress is not good during a pregnancy!  So unless my OB was going to be traveling with me {in case I did start to miscarry while away}, Beaver Dam was the place I would remain!  My feelings were that if I couldn’t sacrifice nine months of my life, then what was I doing trying to have a baby.  So unless it meant missing something that was a once-in-a-lifetime thing, I was going to stay close to the hospital, close to my doctor, and away from accidents.

Now that we had a plan in place with the Lovenox shots, and my thyroid was stable after almost a year of monitoring, we were given the official go-ahead to get pregnant.  Once I got a positive pregnancy test {like, immediately}, I would do a thyroid level check and get the Lovenox shots/baby aspirin regime started.

With this plan I thought, “not a problem, I can and will be totally on top of pregnancy testing, and we will know I am pregnant as soon as humanely possible.”  I couldn’t imagine the possibility of not being able to start the shots late, or not have my thyroid checked and meds immediately adjusted in preparation for the pregnancy.  But, that is exactly what happened.

When I was supposed to start my period the month I found I was actually pregnant, I had this weird brown spotting instead.  It lasted for five days and then I ended up getting what was believed to be my actual period.  Also, up until this heavy bleeding started {on 14dpo}, I was still getting negative pregnancy tests, so why wouldn’t I think it wasn’t our month?

About seven days after the heavy bleeding had started {so I was on what I thought was day 7 of the new cycle}, I started having that weird brown spotting again.  I knew something wasn’t right, but was going to see how the day progressed.  I really just thought my cycle might be acting funny because we were trying to keep my thyroid levels on the lower side of normal in preparation for a pregnancy.  Then, mid-morning I got really nauseous and ended up vomiting.  I thought I had the flu and was not happy.  But, by dinner time I was feeling better, so I thought it was just a weird 24-hour bug that I may have caught.  That was, until my breasts started to hurt…and bad.  By this point, I knew something was up.

So, at 5:30 pm {after my OB’s office was closed for the day, of course}, I took a pregnancy test.  I do not know why I did this {I really didn’t think it was possible, but I was out of answers for the weird symptoms I was having}.  It was clearly positive.

However, instead of being excited, I was terrified.  I knew we hadn’t started the Lovenox right away and who knows what my thyroid was already doing.  I spent the night mostly in tears.  All I could do was take a baby aspirin and wait until 8:00 am.

In the morning we confirmed the pregnancy with my OB and got my beta and thyroid levels checked.  My thyroid was still doing okay but my betas were on the lower side.  However, until we go the follow-up check on them 48 hours later {to see if they were doubling}, we couldn’t put any emphasis on the low level.

So, I started the Lovenox shots and patiently waited 48 hours.

To our surprise, my betas doubled 48 hours later.  This had NEVER happened in any of my past beta checks, so I started to become cautiously excited.  However, that was the last time they doubled.  From that point on, the checks showed them increasing, but not by nearly enough.

The real trouble, however, started about a week later when I started having severe cramping pain and bleeding.  They had me come in for an ultrasound.  This ultrasound wasn’t to see the pregnancy itself {with my low betas we knew we were probably not going to see anything}, but it was more so to check out everything to make sure there wasn’t another reason for the pain.

That is when they found a very large cyst on both of my ovaries.  Cysts can be normal during pregnancy, but the one on my right ovary was to the point of being too big.  On top of that they found that I had bleeding in and behind my uterus.  Do not ask my how they saw bleeding behind the uterus, I still don’t get it, but that is was I was told.

I was immediately taken off the Lovenox as surgery was a possibility within the next day based on the ultrasound.  I was to have another ultrasound the next morning to determine if there was more bleeding {that signaled I was bleeding internally} and that meant I would need immediate surgery.  Because the pain had been subsiding a bit throughout the day, and my OB was the one on-call for the night, she let me go home {with her cell phone number} instead of staying overnight at the hospital for observation prior to the ultrasound that next morning.

The morning’s ultrasound ended on a positive note!  Although I still had blood pooled, it hasn’t increased and the ovary on my right side had decreased in size….so it was assumed that the cyst had ruptured causing the pain and bleeding.

But given my continued low betas and continued red bleeding, I was not to take the Lovenox any longer.  My OB was worried another miscarriage was imminent {and being on blood thinners if you are going to miscarry would NOT be a good thing}.  So, she said if my pain stopped, my betas started to at least get close to doubling, and we could confirm the pregnancy on an ultrasound, I would be able to start the Lovenox shots again.

The outcome on the day that I went in for the ultrasound hoping to confirm the pregnancy with was a lot more than I could have ever guessed.

The following statements came out of my doctors’ mouths {yes, at this point I have a “team” of doctors}:

“I have only ever seen this in pictures at medical conferences”

“I have never seen this in a real life situation”

“In 30 years as an Obstetrician, I have seen this only one other time”

What they found was that the pregnancy had implanted at the very top of my cervix {basically where the uterus meets the cervical opening} and this pregnancy was being “diagnosed” as an ectopic cervical pregnancy.

My OB’s recommendation was an immediate D&C.  If an ectopic pregnancy {and it only needs to be a speck of a pregnancy} ruptures, it can do serious damage.  My OB was concerned that with the pain I was having, even waiting overnight may be an issue.

But I wasn’t ready to let go.  The beta check that morning showed that my betas has met the bare minimum increase…they hadn’t doubled, but it was the first check since the very beginning where my betas showed promise.  Given that a cervical pregnancy was so rare, I wasn’t sure I wanted to just give up.

I wanted to know if what they saw on the ultrasound could be something else, and if it was still just too early to see a normal uterine pregnancy.  They said it could be another cyst {although they did not believe it to be}, but that was all I needed to have doubt and to want to try as much as possible to make THIS pregnancy be the one.

So when I wasn’t on board for an immediate D&C, my OB wanted to do immediate “exploratory” surgery.  She said we would look everywhere but the uterus and just make sure the pregnancy wasn’t somewhere else that they couldn’t see on the ultrasound.  Her thinking was that if the pregnancy was still ectopic, but in my tubes {instead of this cervical ectopic they were leaning towards} just hidden behind the cysts on my ovaries, we would at least be able to find it given the pain that I was in. 

Basically because my levels were not rising appropriately and I was having pain and they could not see a pregnancy in my uterus, they believed I had an ectopic pregnancy….so this exploratory surgery would rule out it being somewhere they couldn’t see on the ultrasound if what they saw in my cervix was a cyst or something else.

But, I wasn’t on board with that either.  Surgery is surgery.  I do not care if it is just laparoscopic surgery…I was scared to have surgery.  My thinking was that we should only do surgery if necessary, and that I wasn’t okay with taking any chances on surgery just to “explore”.

Tears had started to be shed by this point and it was now past business hours, so I had to make a decision.

So, I asked if we could wait until morning.  If my betas came back and were no longer starting to show a positive/healthy uptick, I would then be okay with doing the medicinal route for ending an ectopic pregnancy.  I was still given this option for treatment because the size of the cervical pregnancy was still small enough, but she said that even a couple of days from now, and especially with the level my betas were reaching, it may be required to do a D&C if we waited too long.

The next morning I had my betas checked and because of the results, I went in immediately for the Methotrexate to be administered and to get the Misoprostol.  I have already told the part of the story about what it was like to go through treating this miscarriage, given that this was a pregnancy unlike the other two, so I will not make this post EVEN longer….but, if you missed it, you can get caught up here.

There it is folks.  That is my story up until now.

The thing that is leaving us really hopeful {still} after this third miscarriage is that the way that this pregnancy went was just bad luck.  According to my OB, having the pregnancy implant where it did {to be considered an ectopic cervical pregnancy} was most likely not related to anything with the last two miscarriages.  She did also note, however, that after a person has three miscarriages in a row {regardless of the type}, there is only 50/50 chance, statistically speaking, that the fourth pregnancy will go full-term.  After a fourth miscarriage, the chances of going full-term drop to below 20%.  Also, because I now had had one ectopic pregnancy, the chances of having another one {statistically speaking} were much higher.

Speaking of statistics, just to emphasis how rare a cervical ectopic pregnancy is.  According to my OB, there is only a 2% chance that a pregnancy will be ectopic {for someone who already hasn’t had one}.  Out of those 2% of ectopic pregnancies, there is only a 2% chance it will be a cervical ectopic.  So, out of 10,000 pregnancies, there is only a chance that 4 of them will be a cervical ectopic pregnancy.  Just…bad…luck!

Therefore, after a long talk, Graham and I have decided to try one last time.  If I miscarry, then we will officially sign the adoption paperwork, but we are hopeful that this next pregnancy will be the one to go full-term.  That 2013 will be our year. 

We really do believe in our hearts that if this past pregnancy had implanted in my uterus, there would have been a different outcome.  Of course, we will never know that for sure, but it is what keeps us hopeful.

We have realized, however, that either way {the pregnancy goes full-term or we adopt a child}, given how a pregnancy could go even after a successful one, and in looking at the cost and risks in adoption, we will most likely be looking at an only child.  But boy, oh boy, will that child be SPOILED ROTTEN!

Another hopeful sign in helping us decide to try again was that throughout this last pregnancy, my thyroid only increased slightly {whereas with the last two, during the same amount of time, my thyroid had already shot up 12 and 8 points}.  Essentially my thyroid {although constantly monitored} ended up being a non-issue.  So, my OB has given up the go-ahead to start trying after one regular cycle as it appears my thyroid is still stabilized. 

We are still waiting on that one regular cycle to happen, but it has only been six weeks since the second dose of Methotrexate and Misoprostol, so unless I get to it being more than 8 weeks past this time, I am not supposed to worry.

The other thing we will be  handling different with this next pregnancy is that we are going to be outwardly excited, right away, with anyone we know and not just with our close immediate family {which means updating here!}.  We know that this will be our last pregnancy regardless of the outcome, so we are going to get as many of those excited and hopeful feelings as we can get.

So, stay tuned!

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