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What’s new

24 Sep

After our last heartbreaking loss, a long break from blogging and a lot of  confusion and soul searching about next steps we are back to trying again.  In August we went ahead with another IVF cycle.   Since we transferred and lost the only two that had tested chromosomally “normal”  back in May we had to start all over again.  We tried a few different things this time hoping for something better.  The two big changes were a new test and a new diet.

For this new cycle we requested chromosomal testing on Day 5/6.  In our first IVF cycle in April we tested on Day 3 (per our Dr.’s recommendation) and since then multiple sources have advised that that type of testing is not reliable.  Even though our IVF Dr. has a lot of confidence in Day 3 testing, he seems to be pretty alone.  The theory is that there just aren’t enough cells on Day 3 to get enough information.  In comparison, on Day 5 there are hundreds of cells and more evidence that the tests are consistant and reliable.  In any case, just surviving to Day 5 is a test of embryo health in itself.  So we agreed to to move ahead for another cycle with the same IVF Dr. but this time with Day 5 testing, which meant that we had to do a frozen transfer instead of fresh stretching the whole process out over multiple months and upping the number of steps, expenses, etc.  The lesson I learned, don’t bother with Day 3 testing.

The second twist we added was a change in my diet.  I gave up gluten, dairy and coffee and followed a pretty strict PCOS diet for the time leading up to the egg retrieval.  Despite all the things I’ve done on this journey, this was by far one of the most intensive.  Since I had a real goal with a deadline I was able to manage it, but it was still very challenging.  In addition to my own natural temptations for all things bready/cakey and creamy it was challenging.   My IVF Dr. recommended “cutting down” on dairy and carbs because of my diagnosis of polycystic ovaries, but it was really my idea to go cold turkey like that.  It was one of the few things I had heard might help so I figured it was about time to try something since I was feeling desperate for any action I could take to up our chances.  Since egg quality and embryo quality are the likely suspects with women of my age it felt actually empowering to do something active and take control of my diet.

It was hard enough on my own, but in social situations, travelling, going out to eat, etc. it became something I had to address.  At first I was really shy about what I was doing, but people got curious and it just made it easier to be up front.  I just said I was giving up dairy and gluten for “fertility-reasons” and that was pretty much all I had to say.  One thing I learned- people love talking about foods they are avoiding and why.  And for the first time friends and family could actually “help” me on this journey by making suggestions for gluten-free, dairy-free alternatives.  So much of this journey I am on my own, so whenever someone voluntarily prepared or offered gluten-free/dairy-free foods (esp. desserts) I was so touched.

So what happened?  At the time of our retrieval we were able to collect 16 eggs, a higher number than our first cycle.  Of these 11 made it to Day 5 for testing.  An astonishing 50% came back as chromosomally normal!  He warned us in advance that we should expect only 30% at the most and I was prepping myself for an even lower number.  So in the end we had a higher number of embryos retrieved, with higher quality (more making it to Day 5) and a whopping 50% normal rate which is statistically way above what you would expect from someone of my age.   With such high numbers we didn’t get any clarification about why we are having so many losses, but it did at least help give us confidence that something is working right and we can put the thoughts of an egg donor to rest for now.  Since the only big change in the protocol from last time to this time is my gluten-free/dairy-free diet, my Dr. is crediting this with upping our numbers and quality and as a result I am (sadly) still on the diet.  Perhaps it was just a coincidence, perhaps it made a difference, who knows…

With 6 embryos banked,  our Dr. recommended that our best chances were still with a surrogate.  However, given that there were more than 2 banked he thought it was reasonable to give my body one last shot at baby making.  So that is where we are.  We transfered a single embryo last Thursday.  Per his recommendation, we didn’t want to waste more than one of our supposedly perfect embryos on my iffy uterus.  It made it out of the thaw ok (something I was worried about) and is hopefully making magic in my nether regions as we speak.  Our first beta is this Sunday and I am praying for some good news.

This second cycle was a lot less dramatic than the first.  I got over my bitterness giving up natural conception, something I thought we had going for us.  And I knew what to expect with the injections and procedures.  Instead of wallowing in “poor  me” I felt like I had matured to just take it and move ahead.  After considering egg donors and surrogates, “conventional” IVF seemed so normal and gave me hope that maybe there was still hope to carry my own genetic baby.  At this moment, both doors are still open and I have been able to delay that decision.  Surrogacy is still out there as an option, (a very complicated and expensive option), but I couldn’t go there without at least giving this one last shot.

How important is biology?

25 Jun

Coming back after our Maui vacation it was really hard to face all this again and even to come back to blogging.  For a week I felt like I was a different person and was able to take a real break from the grief and stress.   It all started right up again when I returned.  Just like before, when my mind wanders it goes straight to the grief/stress/feelings of hopelessness.  After my one week break, at least I know there is another side of me in here that can be happy and relaxed and isn’t defined by the events of the last 4 years.  Because of this I came back feeling restored with batteries recharged and much better prepared to face the ongoing and seemingly long road ahead.

So here I am looking ahead and considering our options.  Before we left our IVF doc recommended we move on to surrogacy or egg donor suggesting those as more likely to work after my 6 losses.  Shock set in, tears were shed and the fantasy of the miracle of bearing my own biological child one day died.  Since then I picked myself up and started shopping for donors and surrogates and have now entered the world of the donor agencies, screening profiles and taking stock of how much all of this stuff costs and how much just goes to the agency itself and lawyers.

On Friday (two days ago) I had a follow up with my original RE, the one I had my previous 3 natural pregnancies (via monitored cycles and Femara).  She and I have been working together now for over two years.  After seeing her so much over the years (and her seeing so much of me, ALL of me, from ultrasounds, 3 D&C’s and 1 laporoscopy, + other visits) I have a deep trust for her and I think she knows me and my body better than anyone (even me).  In our discussion she took another perspective and felt like surrogacy was maybe a bit farther than we needed to go.  She suggested looking at 5-day chromosomal testing with an IVF cycle.  The thought is maybe with 5-day testing we could actually get more embryos than we did with the 3-day testing we did for our first cycle.  According to the research, some that look abnormal on day 3, may look normal on day 5 and vice versa.  Of course, this raises the question of why didn’t we just do 5-day testing the first time!  Our IVF Dr. seemed to think the pros of doing a fresh cycle outweighed the cons of the 5-day test that requires freezing.  So here is the plan, we are moving ahead with another cycle with 5-day testing.  PRAYING for lots of embryos.  If we get 4 we will put 2 in me and leave the others for a surrogate.  The beauty of frozen (if we have any that survive) is that we don’t have to decide everything right now.  However, if we only get 2, I might not want to risk them being implanted in me. Or maybe we will find out the embryos are all abnormal and won’t waste time on a surrogate.

Meanwhile we met with a surrogacy/egg donor agency on Saturday.  It oddly gave me a lot of optimism about our options if we want to go that route.  We started talking even about egg donors.  That process is so much less expensive and more manageable compared with surrogacy.  Also there are way more donors.  Both my IVF doc and my RE seem to think that maybe I can’t carry MY embros, but there is a chance that maybe it would work with a donor.  the reasoning is that we tested positive for something called DQ-alpha.  My husband and I have a high match (we aren’t genetically different enough).  Because of this (the theory goes) my body doesn’t recognize the embryo as a baby (which triggers a pregnancy response) and instead thinks it is a strange part of me and kills it off.  If that is the case either egg donor or surrogacy would solve it.   Surrogacy is a safer bet, but a way huger deal.  It all comes down to what is more important, the genetic relationship or the pregnancy/birth experience.  So that is the choice swirling in my brain right now.  I have little information to go on to make the decision and very few role models of people who were successful with either one after recurrent loss.  In fact for recurrent loss I am only familiar with two outcomes- miraculous inexplicable success that just randomly happened OR adoption.  Do you know of any other outcomes?  Also I don’t know of any cases of egg donor or surrogacy successes.  They are rare enough, but particularly rare after recurrent loss.

Meanwhile I am praying that I will get inexplicably lucky and have success without having to make this choice.  Don’t we all pray for this?  I don’t know anyone else who was debating between these two.  Normally you have one issue or the other and the choice is that or adoption.  Mr. Star is still squarely against adoption leaving me to choose one hard thing or another.  Tomorrow night is our wedding anniversary (8 years!) and we are spending it appropriately at the Stanford Seminar- “Options for Building Families” which explores all these third party alternatives.  It is perfect for us because we are basically exploring them all.  I am going to make a leap and guess that all the panelists are happy with their decisions and love their children.  I’ve never heard anyone say I wish I hadn‘t adopted or used an egg donor, etc.  I think when the baby arrives and the bonding starts your brain responds and you really are genuinely thrilled with the outcome.  Hopefully a healthy does of amnesia comes in as well helping you forget the pain you experienced getting to that point.   In a way I feel like whatever works in the end is what was meant to be and I will be genuinely happy with whoever the child is that results.  In the meantime I struggle with having to make difficult choices of what path to take, hoping for the one that after such a long journey leads us to the shortest and least painful path.

I wish i was a seahorse

2 Jun

We had our follow up consultation with the IVF doc yesterday.  I left the fall feeling crest fallen.  He advised that given our history that it wasn’t worth it to try again.  He thought it would be a waste of time.  Instead he recommended that our best shot at biological children was with a gestational carrier.  He confirmed what we thought all along.  There is something wrong with me that we currently have no treatment for.

The alternative to the gestational carrier would be to try IVF with an egg donor.  From there Mr. Star and I debated the pros and cons of each.  Since it sounds like our embryos are fine (as far as we know) the gestational carrier makes the most sense.  Also I think in the long term, having the biology will outweigh the carrying/giving birth connection.  At this point I think my embryos would be safest in anyone other than me.  Hell, I think even Snookie could be a good surrogate at this point.

While I had suspicions of this all along I also had deluded fantasies that if we just kept trying one of these days something would work.  Even now I have fantasies that we will get pregnant naturally and magically have a healthy full term baby.  I’d heard so many anecdotal stories that ended with this.  Why couldn’t that happen to us?  The statistics seemed to be on our side, at least in the beginning.  70% of women who have had 3 losses go on and have a healthy pregnancy.  Remember that?  Once it gets to 6 losses the odds are down to only 40%.  So after 10 are your chances only 0%?  Maybe statistics in this case are not very helpful, or even applicable.  The statistical odds of having 6 miscarriages are so low that I don’t think anyone can really explain what someone in that situation can expect.

Changing gears really feels like giving up, especially considering how long we’ve been on this path.  Part of me is grateful for his honesty and not getting our hopes up for another try that would also end in failure.  Maybe this is just what we needed to finally stop trying and give up on having a baby the “normal” way.  Normal at this point just means I conceive in some way or another and carry to term a biological baby.    Giving up natural conception to IVF was a huge blow.  Now giving up the pregnancy is the next.  Logically we should have gone to adoption years ago.  But Mr. Star didn’t and still doesn’t think we are at that point.  And I had my own struggles with the concept of having a biological mother out there who is “the real mother”.  So we are left with two options both super expensive and both assuming a major loss for me either to my biology or to my role as the carrier.  And it goes without saying that both are giant blows to our bank account (and my ego, what’s left of it that is).

To top it off, after this dismal phone consultation I had a rough rest of the day.  I had an appointment to see a my new counselor for the second appointment but somehow I mixed up the time and arrived 30 minutes too late.  The receptionist told me after I arrived (and drove 25 minutes in rush hour traffic) that she needed to reschedule and that I was late.  I thought I arrived right on time and was more than ready to have a chance to talk about all this stuff going on for me with someone.  Instead I felt like I had the reverse of counseling. I got back in my car totally upset and angry and now having to drive 25 minutes back home in rush hour traffic knowing the whole drive was a waste and it was my fault.  To top it off, they told me that she had to go because “she has to pick up her daughter”.  I barely know this person, but now I already know she is a mom with a young daughter.  I can’t help but think of this the next time we meet.  I really don’t want to know this about my c0unselor.  Seriously!

And finally we had plans for dinner with friends.  They brought their 2-year old with them and I just spontaneously burst into tears.  It was totally awkward and everyone was averting their eyes and trying to change the subject to something funny.  Normally we get together afterwards to hang out, but they didn’t even bring it up.  It was like I was left out to dry with my grief and burned a bridge at the same time.

Slightly more pregnant

7 May

My HCG is now a whopping 36!  Up from 18 two days ago.  While it may be a stretch, I am officially calling this pregnancy #6.  Given the super low beta, it has the most unpromising start of them all.  I test again in two days.

For comparison I checked out my past first Betas, which considering my current situation seem quite impressive.

  1. 155902 (Feb 2008)
  2. 139 (April 2009)
  3. 1709 (August 2010)
  4. 517 (January 2011)
  5. 625 (June 2011)
  6. 18 (two days ago)

I know numbers don’t mean everything, but I had taken some comfort in them in the past.  Even though I know nothing is for sure, I was able to feel somewhat celebratory in the past at least for the brief periods while I was pregnant and before the ultrasounds started.  This time I feel like I am grieving the loss at the same time that I am still taking all the steps as if we were pregnant.

The worst of these steps  is the dreaded nightly progesterone injections.  In addition to being painful I seriously think the hormones are making me unnecessarily moody.  These days I have only two moods: angry or sad.  At their worst they fluctuate from rage to depression.  It feels like its been years since I felt true joy or happiness.  While I know rationally this isn’t true, it just shows how skewed my perspective has become.   Is it the drugs?  Is it my circumstances?  Maybe a combo of both.  The reason I blame the drugs is because the last time I remember feeling positive was right before I started taking them.  It was right after the transfer when I knew there were 10 embryos and I started believing that maybe this is going to work, maybe this time things would work out differently.  When I learned that 8 were gone and we had only 2 to implant I just took a nosedive and really haven’t quite made it back up since.  It was right after that that I started the progesterone overload.  I am taking it 4 ways- 1 injection, 1 oral, 2 suppositories.  It seriously feels like overkill, but my Dr. confirmed that he wants me to keep it up as long as things are progressing, even if the progress is at a snail’s pace like mine.

So in short, I am pregnant, but unable to have optimism.  It just feels all too familiar like those ambiguous ultrasounds of the past where I was told to come back in two days because things didn’t look right.  There are cases where things turned around, so we now have to hope we are one of those.  Give my track record it’s too hard to have hope unless everything looks on track or better.  One slip and I assume it’s just a sign that things are about to go south.

Alone in Happy Land

24 Jan

We just came back from a weekend away from friends at Lake Tahoe.  It was both wonderful and really hard.  As the only couple without kids I struggled as they joyfully introduced their kids to snow and happily snapped photos of them in their extremely cute snow suits.  Meanwhile none of them know what we are going through for the past four years trying to start a family.  Since they’ve had kids we’ve kind of moved apart and stopped talking about real problems.  While it is great that they want to be so positive all the time and their lives seem to be zipping along nicely, it makes me feel completely isolated.  My choice is to paste on the smile and join the happiness or be alone.  It seems clear that if/when our story ever changes that they would be supportive and happy for us, but when it comes to pain and grief, we are expected to just deal with that on our own.  At this time I feel like I need supportive friends more than ever, and instead I find myself feeling bitter that I have to bottle myself up until I have good news.  Anyone relate?

Note- We are crossing our fingers again this month after 2 negative cycles.  Hoping this month (our last month of trying naturally) finally leads to a BFP!

Back from Uruguay and Hope for This Month

7 Jan

We arrived back in California from our 2-week Uruguayan adventure on Thursday (20 hours of travel!) and I am SO glad to be back.  While it had its moments, I really struggled with being the good wife and daughter-in-law in a foreign country where I was expected to just fall in line and follow along everyday.  For someone who is used to spending most days alone (I work from home alone in my house) it was a real adjustment to spending every day with a minimum of 5 people and having to come to an agreement before doing anything like choosing a restaurant or when to go to the drug store.

As the only non-native Spanish speaker I was at a real disadvantage always requiring some assistance or translation.  For example when I wanted to buy pantiliners I needed to bring my MIL to communicate with the sales person.  The pharmacies there are tiny stores with all products behind the counter, so you have to go in asking for exactly what you want and then negotiate with the sales person-  boy , I missed Walgreens!  Thank goodness I wasn’t buying anything even more personal or embarrassing (like a pregnancy test)!  Fortunately I brought all my OPKs, prenatals, progesterone supplements and other supplies from the US.

To bone up I actually had private tutoring which did help quite a bit, but I still felt miles behind.  This isn’t my first time living abroad.  Actually in college I lived for a semester in Athens, Greece because I was passionate about Ancient Greek Art and Architecture.  The program was in English and I just used my English and basic Greek phrases from a phrasebook to get around with my other English-speaking American classmates.  I regretted not learning a foreign language though, so the year after I graduated I applied for a job in Duesseldorf, Germany to be an au-pair for a family with 3 kids putting my high school and college German classes to the test.  With no English classmates I really had the immersion experience and to this day my German is still better than my Spanish.  Looking back I remember how I was filing away lessons for the future noting how I would raise my own family completely oblivious to what was ahead of me.  So naive.

The good news is all the family drama in Uruguay kept my mind well away from the bigger matter at hand- making a new family member of our own.   This is our second month of trying since we got the green light from the Beers Center.  I still have another week or so before I will get any results, but I am already pessimistic as I’ve had some bleeding.  It started on the plane trip back and Mr. Star is convinced it is related.  My first miscarriage happened right after a plane trip and ever since he is convinced that the change in air pressure is dangerous.  Every doctor we’ve talked to has confirmed there is no risk, but you know how your brain can cling to these superstitions based on coincidental personal experiences.  Meanwhile I had Sushi for dinner last night and a cup of coffee this morning, so clearly I am not heading the do’s and don’ts list.

It is exactly 4 years ago that we started TTC.  I NEVER expected that we’d be still going at this thing in 2012.  It is probably better that I had no idea.  When I start adding up the years of trying and the number of miscarriages and then throw in that I am turning 39 this summer I go into MAJOR panic.  It’s my worst nightmare realized.  Now I am just trying to remind myself that maybe, just maybe, I am actually close this time, maybe it is just around the corner and there is no reason to panic.  Maybe this month will be the month.

We’re back!

28 Nov

So after a long hiatus from trying and failing we are back to trying again to get this family started.   Since it’s been so long since I’ve posted I feel like I should give a recap of what’s been going on.  After 5 consecutive pregnancy losses (each at 8-10 weeks) we dragged ourselves to the Alan Beers Center in August to look at possible immunology causes and treatments.  According to their nurses they have an 85% success rate, that is IF you follow all their recommendations.  So we bit the bullet and went for it.  After spending thousands on blood tests we were told I had elevated Natural Killer Cells and low Leukocyte Antibodies.  Based on this we were advised to go to Mexico twice for Leukocyte Immune Therapy to treat both issues.

We did it (see previous post) with two trips to Mexico and got retested to see if our levels improved.  Our test results came back today and (drumroll) our numbers are excellent now!

  • LAD
    Before :19.7
    Now: 95.9 (Excellent!  We were just shooting for 50 to be in the “healthy” range.)
  • NK Assay 50:1
    Before: 21
    Now: 14.5 (normal, no longer elevated)
  • NK Assay 25:1
    Before: 11
    Now: 7.1(normal, no longer elevated)
The only test number that is still in the problem zone is my CD56 ( These are the NK cells in the uterus) They went from 19 to 17.8 (and should be 12 or less).  Because we have elevated CD56, they want us to do an infusion of IVIG if/when I get a positive pregnancy test. This is supposed to help”calm” my killer immune response in the uterus during pregnancy.  I am not at all excited to do this one as IVIG still creeps me out a bit plus it is pricey, $2500 per infusion.
I started Femara this month to up my odds (my last three pregnancies happened in month 2 on Femara).  Here’s hoping we get lucky in the first few months again.
On the emotional front I’ve just been crashing.  The anxiety from waiting for all the treatments and tests and wondering if any of this makes any difference and if we we will EVER have a healthy baby is back in full force.  Sometimes it was even hard to read others’ blogs on the subject which is why I stayed away.
January will mark our four year anniversary for trying for a baby.  With each loss I felt my own level of confidence and satisfaction with life just plummet further.  Four years later, this whole thing has gone from fun to a complete nightmare full of humiliation, heartbreak and a constant fear of time running out.
Right now I am trying to think positive, relax and get into a low stress mode that is more conducive to baby making.  According to my fertility friend calendar my peak day will be on Thursday of this week.