Blood letting commences September 26, 2008

Today was the first appointment with the RE.  This was at the University of Minnesota and, although they did not have their stats broken out by RPL patients vs not, he did share that there is a 50-50% chance on being able to diagnose what is causing the recurrent miscarriages.  For the 50% that do not receive a diagnosis, 2/3 have a child without medical intervention.  For the 50% they can explain, they are able to successfully treat 90%.  Huh.  Now that I add that up, that means 43% need to pursue other options to create a family.

So he explained that there are 6 categories of causes.  One he discarded right away–underlying medical conditions such as diabetes.  He felt patients already present with that, so it wasn’t of concern.  The remaining causes were genetics, structural, hormonal, antibodies and blood clotting.  In this area, he felt they all shared equally at 20% of the causes.  (Some areas with high pollution or genetic backgrounds may have stronger tendencies to one or another.)  Here is a basic description of each:

Genetic–this involves karotyping of the parents to look for abnormalities

Structural–this would be a problem with the shape or tissue of the uterus

Hormonal–this is the basic hormones needed to sustain a healthy pregnancy

Antibodies–there are various antibodies in your system that can see the baby as an invader, similar to having an organ transplanted

Blood clotting–this can cause problems in the placenta

Since we’ve already had a karotype of the two of us that came back fine and Turner’s is seen as a genetic fluke, he said we’d hold off on additional testing specific to genetics at this time.  He changed his mind when I said my biological mother went through menopause by 40.  He said menopause can demonstrate problems with the x chromosome and we should do the additional testing now to look for mosaicism.  With the basic karotype, they look at a few cells for abnormalities.  With mosaicism, most of your cells can be fine, but some show abnormalities, so they then have to look at several hundred cells.  It is much more detailed and costly to run the test, but the treatment may include PGD with IVF.

Other than that, his main areas of concern were hormonal and antibodies.  I’ve had some abnormal thyroid results, but repeated tests have shown I have antibodies that attack my thyroid, but it is fine overall.  He wants to re-run tests on both of those.  There were also some antibodies that have not been tested before.

He didn’t get into treatment for most things and will discuss as results come back.  I gave 11 vials of blood today and the plebotomist (sp?) said I may have set a record for the most vials at once.  Not sure how I feel about that.  I like his drive to get to the bottom of this, but does that mean I’m a dire case???  

He also did an ultrasound today.  The good news is that everything looks fine and there are no remnants from the last pregnancy.  Additional good news is that I’m about to ovulate any moment.  Earlier this week I had a couple days of high temps (ovulation confirming temps for me) and I was a little worried about our timing.  Although there is an evil part of my brain that says to get pregnant, I really could not deal with that right now.  Off to buy some more sponges.

Next steps:

• Call on first day of period
• Schedule day 3 testing
• Schedule sonohistogram from day 6-12
• Schedule appt two weeks after period to discuss test results and treatments

I’m a little hopeful.  Just a little though.  It seems like I’ve been tested so much already and it hasn’t actually proven anything.  But he’s an expert.  Maybe he’ll find something the OB hasn’t found yet.

As far as the environment in the office, everyone was so sweet and it was great not seeing all those pregnant bellies!  I did find myself looking out of the corner of my eye and wondering why everyone else was there?  What heartache had they had?  Were any early pregnant?  Scared?  Did they have hope?  And that guy here by himself, I bet I know what he was there for….

I wonder if people do that at jail too–look around wondering what they did to get there.

Scrambled eggs=fried brain? September 23, 2008

I don’t know if my eggs are scrambled, but something feels mixed up after this many miscarriages.  And now it is affecting my brain.  All I can think about is sex.  Ok, I also think about food, the dog, work and houses.  But after months of not wanting anything to do with sex, now I WANT it and I think there is some sick, twisted part of my brain that is egging me on….”come on, just get pregnant again.  You know you can.  You can be pregnant all the time!”  

Seriously.  What the hell is wrong with me?!?  

Miscarriage has complicated sex.  Either I’m recuperating from a miscarriage and don’t want it because it leads to another miscarriage.  Or I do want it once the hope kicks in and I think this time it will be different due to some “voodoo medicine” like progesterone or levothyroxine.  (No offense to those using either for legitimate reasons, but mine were basically “it can’t hurt.”)  And then when I do get pregnant, hands off!  Not only am I tired, but sex leads to spotting, and then I’m a whole lotta crazy.  So it has been a year of sex being about everything BUT wanting to be with my husband.

So now I want sex.  And it is a whole different level of desperation, derangement and possibly delusion.  

Hee hee…I wonder if folks will stumble across this expecting something a little more graphic and risque?  Sorry to disappoint.

Do recurrent miscarriages due to chromosomal issues predict continued problems? September 22, 2008

That is the question foremost in my brain lately.  Now that I’ve had 4 m/c and one is confirmed as being due to chromosomes, does it mean there is a fundamental problem with the make up of our eggs or sperm?  And that to continue to pursue pregnancy will lead to continued loss or a baby with some sort of problems?

Here is a study that shows that with each m/c due to chromosomal issues, your chance of another m/c goes up by 13%.  I’ll be asking about this at our RE appointment.  http://www.ivf1.com/miscarriage-risk/

I don’t post this to scare anyone.  There are probably other studies that show different results.  I just want to be as informed as possible so we can make a smart decision on whether to pursue medical treatment, how much to do or if we just go down the path for adoption.

A baby girl September 19, 2008

We got the results from the karotype from the d&c today.  She was a girl.  I already knew that.  I felt it.  My brain told me we should have a boy for all the logical reasons (only males being born in my husband’s family), but one night I had my hand on my belly while reading a book and I got this overwhelming feeling.  It was like this huge rush went through me.  And something said to me “it’s a girl.”  I told my hubby then that I just knew.  Even today he considers it a guess, but it was bigger than that.

We also found out she had Turner’s syndrome, so I’ve been searching the web for info.  It is when the set of x chromosomes is not complete and it causes physical problems to varying degrees.  What is confusing is that babies can be born with it, so was there something else going on that caused our baby to die?  The nurse said there was nothing else on the report.  So there is lots of info on the web, but there was one site about people born with it that was helpful–turnerssyndrome.org I believe.  Apparently 1 in 2500 girls is born with it.  But (supposedly) 98% of pregnancies with this end in miscarriage.

Those are the facts I’ve found out.  But as always with miscarriage, it is the emotional side that is the hardest part.  So here is what is tough–I wasn’t expecting it to be so difficult to know what went wrong and that she was absolutely a girl.  It makes it so much more real and therefore raw.  She was my daughter.  She would have had her daddy wrapped around her finger.  She was supposed to wear pink frilly things, get cooties, giggle, have crushes on boy bands…or girl bands….whatever.  I don’t care.  But she was supposed to BE.  

But the positive things are that we know, without a doubt, that there was nothing we could have done to prevent this from happening.  I think when you have miscarriages, you tell yourself to believe it wasn’t you, but there is a part of you that still feels guilty.  It doesn’t make it hurt less to lose your baby.  It does make it easier on you to have that sense of relief.  And I wonder how we would have dealt with a child with potentially severe disorders? It sounds like it is definitely something where a woman can live a full, happy life, but may have some difficulties.  But there was the potential to have more severe problems as well.  

How would we be as parents to a child with serious problems?  Is it somehow a blessing that we’ve lost our babies, but they would have been severely handicapped in some way if they had been born?  I can’t shake the feeling that all four losses have been due to chromosomes.  Two were very early when the initial development is occurring, so I have to believe that was the cause.  Now we know this one was as well.  The stats get worse and worse as “advanced maternal age” creeps up.  Maybe we’ve missed our opportunity to have a good, healthy sperm meet a good, healthy egg.  I’d rather have someone tell me that than “keep trying and one of these times it will work.”  No more sunshine up my butt, please.  Give it too me straight.  After this past year, I’m pretty sure we can handle just about anything.

10 days post-D&C September 16, 2008

I’m super bloated, gassy and have dark clumps of tissue or blood clots in the toilet.

V crabby

Little victories September 11, 2008

I’m trying to stay positive and find some things to give me hope or make me happy.  (Although I’m certainly not happy.)

So here goes….

• My boss agreed I can work 4 days a week for awhile, which will free up time for appointments and give me more time to be away from people and pretending
• I’ve worked out the last two nights (with the other three miscarriages, my coping mechanism was wine and ice cream–neither one really helped)
• I’ve buttoned two pairs of size 10 pants the last two days
• In reality, even though I’m at work for hours upon hours, I only work for a small portion of that time.  My big, almost work related accomplishment this week has been completing an application for an MBA program.
• I’ve contacted two REs to set up appointments.  One is set up for Sept 26.  The other place hasn’t contacted me, even though I left a message Monday and emailed them yesterday.  That might make my decision pretty darn easy.
• I requested two books at the library about miscarriage so I can educate myself even more before my appointment(s) with the RE.

That’s it.

A long year September 8, 2008

It all started a year ago today.  I didn’t know it at the time.  But today was the LMP date of my first pregnancy.  God, we were so naive then.  After the miscarriage, we saw the silver lining of “at least we know we can get pregnant.”

Color and mood…miscellaneous ramblings September 8, 2008

I spent the weekend painting the kitchen a happy, bright goldish-orange called Saffron Thread from Sherwin Williams.  It was such a juxtaposition to be engulfed in this warm, cheerful room while tears are streaming down my face and I’m wishing I had died so I could hold my babies.  I should paint the whole house in something that says “bitter.”

About 48 hours after the D&C, I started having some cramping.  A few hours later, I was shivering and just couldn’t get warm.  My hubby said I was super pale too.  I finally started bleeding and the cramping stopped.  I was finally able to sleep last night too.  Now that is all I want to do.

All my friends suck ass.  I finally heard from one of them this morning with an email to work.  Yeah, because I want to hear how sorry you are while I’m trying to keep it together and function.  Maybe they don’t know what to say.  Maybe it is because my husband tells everyone I don’t want to talk about it, but they can still say sorry.  Maybe they think I deserve it since I keep getting pregnant (based on medical advice!)

I should make a correction.  I have a couple of friends who have had miscarriages before and they have been supportive.  They just don’t live here.  And I’ve had wonderful support from my online friends who have experienced this.  I don’t know what I’d do without all of them.

In an attempt to feel like I am doing something proactive, I’m going to call a couple of reproductive endocrinologists today to set up consultations.  Part of me doesn’t want to ever be pregnant again.  But the night before I found out I was pregnant this last time, I promised myself I’d try until March.  That would be the last time I could get pregnant and deliver before 40.  So with the wait and additional tests, I figure we have one more shot at a viable pregnancy.  Maybe two if I have another chemical pregnancy.  I want to make that shot the best it possibly can be.  Maybe IVF with PGD (genetic testing on the embryo) would give us the best chance?

insomnia September 7, 2008

Before the D&C, I was waking up in the night to pee and sometimes up for a couple hours.  My brain was filled with thoughts of the new house and wondering about the pregnancy.  Now I’m just up.  When I try to make up for it with a nap, I can’t sleep either.  Fri night I even took a sleeping pill from my doc and still was up for 3 hours in the middle of the night.  How am I going to function at work tomorrow???

Four pregnancies and four miscarriages September 6, 2008

At 12w3d pregnant, we went to a morning appointment for the NT scan.  I was nervous.  I had been unsettled and not confident about this pregnancy for 2-3 weeks.  Maybe that was just normal given all the previous losses, but I’d like to believe that my body was preparing my brain for what was to come.

She started the ultrasound, zeroed in on the baby and didn’t say anything right away.  The words “where is the heart beat?” kept rolling through my brain like a scrolling marquee, but before I could voice them, she said “I’m so sorry.”  The baby was measuring at 8w4d and had no heart beat.  Again, another loss at the end of the first tri where I’m carrying a baby inside for weeks after it has died.  It definitely hurt and there have been many tears shed, but the crazy thing about each miscarriage is you feel more and more prepared for the worst and the pain isn’t magnified by the shock.  I would have been more surprised if they had said “look at your healthy baby measuring right on time!”

So I didn’t feel very hopeful that day.  First of all, the doc at the NT scan told us that even after 4 losses, you have more than a 50% chance of having a healthy baby.  That wasn’t reassuring.  Then in the afternoon, we had the 12 week appointment with my clinic.  I met with a different doc than I normally do.  She was wonderfully compassionate and took action to schedule a D&C so testing could be done on the baby.  But she did say that we’ve already had all the testing and there really isn’t more that can be done beyond testing the baby.  Our answer seemed to be to just keep trying and hoping for the best.  After 34 weeks of pregnancy in the last year, all in the first tri and all ending in the loss of our babies, I’m not sure I can do that.

So the D&C was yesterday.  I was anxious about it and even wondered if there was a chance I wouldn’t make it.  It certainly feels like I’m already dead on the inside.  My regular doctor walked in like a woman at the starting line of a race right after the gun goes off.  She was ready for action.  She confirmed that we’d be testing the baby, but also said she wants to try additional tests that “the experts don’t think are helpful, but it might tell us something.”  So 3 vials of blood were taken yesterday and we’ll be doing more in 6 weeks.  When I brought up seeing an RE and the testing they can do on embryos, she supported us 100%.  She said if we want to see 5 other doctors, that is fine and the more brains working on this, the better.  She also said there is more detailed chromosomal testing that can be done on me and my husband, but she hasn’t looked into it in 5 years and at that time it wasn’t very helpful.  So she’s going to see the new research on that to see if that would help.  I feel better that she isn’t just accepting that it is bad luck.  She also feels there has to be something occurring and it is just a matter of uncovering what it is.  I have the feeling she likes puzzles.

So the D&C itself was not bad.  I react strongly to medication and puke when coming out of anesthesia.  So they gave me 1/2 to 1/4 of what they normally administer.  On the one hand, that means I was a little more conscious for the procedure and remembered what happened.  Honestly, it wasn’t bad and it was super fast.  On the other hand, I feel my recovery has gone much quicker than it would have.  I was feeling like myself within 8 hours of the procedure.  I’m now getting close to 24 hours later and I’ve had no cramping (although the only time I ever have had cramping is when I’ve had a natural miscarriage) and very little bleeding.  I bought all these giant pads, but will probably only need liners.

I’m still a bit torn on if it is better to have a natural miscarriage or D&C.  Once I knew the baby had died, there was no question what I was going to do.  I did not want to wait for the inevitable.  Physically the D&C was not bad at all.  But I did feel guilty before the procedure–it was my baby after all and, if this is the only way I can ever hold him or her, I should hold on as long as possible.  I had to remind myself that the baby was already gone.  The other thing that is a little strange is that it doesn’t feel as final.  With a natural miscarriage, you know the baby is gone.  You feel it and you see it.  You go through various physical stages, which I think might help progress the emotional stages.  With the D&C, I don’t feel any differently now than I did a couple of days ago still pregnant.  It is a more “pleasant” experience (but still super sucky), but maybe the full reality hasn’t hit yet?

There is more to say about the grieving process and the reactions of other people, but I think that is all for now.