Testing testing, 1, 2, 3...

I had blood work drawn four times this week.

I think that might be a record (during pregnancy itself, not IVF with its daily draws).

Join me for a week of pregnancy blood letting, if you will.

On Monday, I had blood drawn for a new test I had heard about from someone in the comments section.  It's called the MaterniT21 Plus test and is offered by Sequenom.  The test is not yet available in New York State, but somehow my hospital has a waiver, or gets a waiver for each patient, or something. It tests for Trisomy 21, 18, and 13. Now we should be in the clear for all of those, because this embryo (fetus?) had all chromosomes tested by microarray before we transferred back. But...I know there is a small error rate on the microarray....and we're very unlucky people. Since the test is noninvasive, we figured no reason not to get it, just to be sure. Our plan is to avoid amniocentesis and CVS, which are invasive and have a small risk of miscarriage, unless something super scary turns up in the next several weeks that seems to suggest one of those is necessary.

Let me pause to note how strange it feels to type "in the next several weeks," as though I'll still be pregnant then. I'm kind of living in both realities right now, the "imminent miscarriage" place, and the "things might just be all right" place. A little bizarre, but true.

Funny too that I would ever consider foregoing CVS and amnio. This is a big surprise to me and not what we thought we would choose. I'm generally a need-to-know person. But honestly we feel this pregnancy is so precious and delicate that we don't want to do anything that could even potentially damage it.

The MaterniT21 Plus test takes a couple of weeks to get results on. Ten business days, I think. I would be absolutely fine with having a down syndrome child, if I knew I could carry him/her to term. We're looking for a child who can live, not a perfect child. My fear is more another loss. Trisomies 13 and 18 aren't usually compatible with life (or with life past the first year). We might not continue a pregnancy with one of those disorders. But I know the chances of any of those being a problem are very slim. This is supposed to be a euploid embryo, and our clinic has a very good track record with their testing, but we just want to be thorough.

Tuesday, at 10 weeks 3 days, I had my progesterone and estrogen tested, which I was a little nervous about given the bleeding episode over the weekend. But the levels came back okayish with estrogen at 852, up from 833 last time (that's with two Vivelle patches) and progesterone down to 28.13 from the last result of 57 (that's with one endometrin suppository and only 1 /2 cc progesterone in ethyl oleate, instead of the previous 1cc). My nurse in Denver said to keep all meds the same and retest Friday. 

Thursday I went to the high risk OB area of my hospital and had my blood drawn for the nuchal translucency screening test. I knew they would be testing my beta HCG and another protein called PAPP-A (pregnancy associated plasma protein A). HCG is higher than average in trisomic pregnancies and PAPP-A is lower. 

It was a little saddening to fill out the nuchal screen blood work paperwork. Have you had a pregnancy with trisomy 21 previously? YES. Have you had other aneuploidies? YES. Monosomy X, Triploidy, Trisomy 16. I had to write down the side of the page because there wasn't enough room for all of the problems we've had. They also asked the savvy question of whether this was an IVF pregnancy and if so, what was the age of the egg at the time of retrieval. Nice. So we get to shave almost two years off of our odds. The egg was from a "young" 38 year old me, not my current "young" 40-year-old self.

I was shocked when the the nurse said the nuchal blood work would only require a finger stick (really? Why all these previous vials of blood to test my HCG then??). They pricked my finger, which proceeded to gush like a fountain, making it quite easy for the nurse to fill her row of paper blot circles with my blood. What can I say, I'm on lovenox. I'm a champion bleeder. We got the job done, and then some.

Which brings us to today....Friday....and another progesterone and estrogen check. Results coming later today. I will add them here when they come in. Hoping the progesterone hasn't dropped any lower. The estrogen seems to be hanging in strong, even rising a little bit, which makes me smile.

Thank goodness I work at a hospital. If I had to commute to get this done this many times, I would have an awful lot of explaining to do at work. As it is, I can duck out quickly and am not even missed. Job perks I didn't think of when hired.

Next ultrasound live baby check is Monday. And then...if the baby is still alive, the nuchal ultrasound is scheduled for Thursday. Feels like an important milestone. Not sure why. 

I sent my mom, who lives across the country, a framed ultrasound picture this week that should arrive tomorrow and knock her over with surprise. She doesn't know we even did the FET. We will be telling Will's sister in person on Easter morning. That's it for family telling for a while - we'll tell our other siblings, and my dad, later. These are all of the "most intimate" people. Our moms, his sister. We've always told them every time we're cycling, so keeping things mum this long has been very different. 

Wow. Really hard to believe time is still passing and that as far as I know, we are still pregnant. How lucky am I? Pretty damn lucky. Unbelievable, really.

Mo

  

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The Colorado genetic counselor rocks

Thanks for all of your blogoversary wishes. We are ready to look forward to the coming year - and hope that there are fewer disappointments and more successes - please! Loved your comments reminding us to focus on what's important - our love for each other, and to be mindful of the accomplishments the last year has contained. We're with you guys - may this be the last year that this is an infertility blog!
So, finally, to fill you all in on the rest of the Colorado visit...
Our last meeting of the day was with Danielle, the genetics counselor. I'll be honest - I really didn't want to go to this. I mean, I spent an hour and a half with an M.D. geneticist in New York just a couple of months ago. What could this counselor possibly add? That said, once we met Danielle, I liked her immediately. And what she had to say perked up my ears rather quickly as well. We were drawn to Colorado because of their microarray technology. She said, however, that after reviewing our files, she'd spent the day meeting with the scientific director and making calls on our behalf because she felt that microarray wouldn't be enough for us, given my cancer treatment history and the fact that our losses have included both trisomies and polyploidies (overachievers, us!).
Basically, she said that microarray can only detect trisomies. Apparently, the way the technology works, microarray looks for alterations in the patterns of chromosomes - so one more or one less of a particular chromosome, a heterogenous problem. Microarray does not pick up polyploidy - because in this situation, there is an extra set (or sets) of every chromosome. And so the test reads it as normal, since it's a homologous defect across the entire set.
Who knew?
But surely, we're not the first couple to ever cross the Colorado Clinic's threshhold who's had a polyploidy plus a trisomy? I asked this, and Danielle assured me that although it is unusual, we are not.
But she said in our case (lucky us!), they were worried the polyploidy problem (usually a 1 in 1,000 occurrence) might have a tendency to repeat.
Hearing this, part of me was like YES! Finally, someone agrees with us that there is something unusual here - that these silly population statistics may not apply to us! This part of the information was super validating and welcomed. At the same time, I also had a Oh no, we are so f*cked up sort of reaction.
Bottom line, according to Danielle, we will need to do both microarray and FISH screening (the type of screening they use in PGD) to look for both trisomies and polyploidies. Because they do not want me to transfer embryos back thinking they are normal and then find out that they aren't normal after all. So they want to do a single biopsy of each blast (should we be so lucky to get blasts), split the tissue from each blast and send half of it for FISH and half of it for microarray.
Sounds good, right? The only problem is that each of these tests costs approximately $5,000. So it would add an additional $10k on top of the usual ridiculous IVF fees.
Ha. Ha. Ha.
Before we both fainted, Danielle quickly said that the Colorado clinic would never expect us to carry all of this cost and that they were already negotiating with the labs involved to waive fees so that we could have both tests run for no additional cost. In fact, she waived her $150 fee that day to get us started down the road of savings and said they were going to figure out how to shave $5,000 out of things somewhere so we don't foot the bill.
This was our final appointment of the day and we after we finished speaking with Danielle, we got into our rental car and drove directly to the airport to catch our flight home. What a way to finish out the day.
Our final impression was Wow. They are really thorough and have thought about our specific situation and what would be best for us. They are really looking out for us. Needless to say, we were impressed.
We'll keep you posted on what they're able to work out for us.
Mo

Meeting with the Colorado wizard

The first thing that struck us as we walked in the front door of the Colorado clinic was the attention to detail - each magazine, every plant, every tile - down to those around the edges of the walls, was perfectly positioned. There was no clutter, not even on the receptionists' desks. Information flowed efficiently between staff members. It was obvious that someone had put a lot of thought into everything from the design of the building to the systems of how various levels of staff communicated and how patients were funnelled through the clinic to reach their appointments. It was quite something.

After meeting briefly with a nurse, we were led into a consultation room. One entire side wall was lined with copies of research articles available for patients to take. Immediately this gave the sense that this clinic desired us to be informed about our situation. In detail. Which is very different than my New York RE (who I love, but who tends to be rather vague on the details, leaving me to go dig them up myself in the medical library).

Dr. Schl. entered not long after we sat down, wearing scrubs beneath a lab coat. And he got right down to business. We filled him in on everything that had happened between the February phone consult and now. Two more IVFs, two more miscarriages, diagnosis and surgery for stage III endo, etc.

And he basically toed close to the line of what he had said before on the phone with us in February. Except he said now we have a bit more data from the two additional miscarriages. His basic message was that we probably don't make any normal embryos, and that whether this is due to my treatment for cancer or some other factor is something we’ll likely never know. He said that through cytogenetic testing, we've been able to demonstrate these abnormalities three times, but that the only way to know across the board for sure is to look at the embryos themselves.

He was complimentary of our clinic here in New York. Said he knows all of our doctors and has respect for them and that if we’ve done five cycles at the clinic we've been at with no baby to show for it then we probably won’t end up with a baby with him either, because they’re really good at my clinic. I appreciated the confirmation that our clinic is one of the top ones, but of course, hearing that we’re likely screwed was not exactly what I was hoping for.

He spoke calmly and in a low tone throughout the meeting. He seemed pretty unflappable. He wasn’t nervous, wasn’t trying to sell us. In fact, at first, Will and I thought he was trying to dissuade us. He said something to the effect of “You’ve done 5 IVFs. No one can say you didn’t try.” This meeting was the first thing scheduled in our day of appointments and we looked at each other and considered just calling it a day and catching an earlier flight back.

Ultimately, though, Dr. Schl. stated that it was reasonable to give things one more try and that this would give us very important data - and maybe a baby. He seemed to think it was much more likely that we would end up with data leading us to choose donor egg, but left open room for him (and for us) to be surprised. And basically he said we’ll have good information no matter what happens if we cycle. If we cycle and I don’t even make blasts, he says that’s our answer right there – go on to donor – our eggs are too damaged to even get to day 5. If we do get to blast, we can test them and then we’ll know what we’re dealing with. He also said that it was difficult in my case to know if I can get to blast because my clinic has only ever tried to go to blast the first time with my eggs (and that cycle I did transfer two blasts and get pregnant). Especially since we’ve done coculture the last two times, which can only grow embryos to day 3, we really don’t know what my embryos are capable of. Interesting. What I most liked to hear, though, was that if I have a good number of eggs and don’t make any blasts in the Colorado clinic, then we have our answer. Maybe not an answer we like, but an answer.

When we asked him his thoughts on doing a high dose IUI, he said he thought it was not a good idea. That if we didn't get pregnant, we wouldn't be able to pinpoint why and if we did get pregnant we were just rolling the dice again - and he suspected we would likely miscarry again and spend months in the getting pregnant, being pregnant, and becoming unpregnant process. He felt that with IVF with microarray, we can get a good batch of embryos, know that they've fertilized, and see what happens exactly. It was honestly helpful to hear his opinion on this. It was fairly convincing.

The other interesting thing that Dr. Schl. said was about our most recent loss, which was a triploidy (three full sets of chromosomes instead of two). Since this was most likely caused by two sperm fertilizing an egg, we were told here in New York by multiple sources that this is a totally random event that won’t recur and has nothing to do with our chances. Dr. Schl. disagreed, saying that it is still an egg issue and that my egg allowed two sperm to enter, meaning that it was defective. He also thought that given that this is coupled with our other aneuploidies, and given my cancer treatment history, we might be more prone to polyploidy than other patients. Great.

Throughout the meeting, Dr. Schl. only cracked a smile once. I told him that our clinic was aware we were headed out to see him and that they were willing to monitor my cycle in NY. And then, when I told him I thought they were probably more than happy to do the monitoring so that I could stop messing up their stats and instead start messing up his stats, he smiled. It was brief, but it was definitely there.

So that’s the what’s what. Not exactly hopeful. But it’s where we are at. It was sobering to hear Dr. Schl.'s take. Not as devastating as it was a year ago, and not unexpected. But it wasn't easy, either. The fact that we could even sit across a table from someone telling us that it is likely that we will not succeed and not burst into tears is amazing. Just a year ago, we were still so, so hopeful, and were devastated when we spoke to Dr. Schl. by phone. This time, we just nodded and sighed in resignation. What a difference a year makes.

Wow - this post turned out to be a lot longer than expected. Sorry about that.

More on the rest of the work-up soon, in particular the meeting with the geneticist.

Mo

Home again, home again: Back from the one-day work up

We've returned from the Rocky Mountain clinic, and I have much to say about our journey, which will likely trickle out over the course of a few posts.

While out west, we saw a brewery called "Rock Bottom" and I thought, that's fitting. That's why we're here - we've hit rock bottom in this Trying To Conceive business.


We're so close to our absolute nadir of hope that we flew halfway across the country for potentially our last shot at having a genetically related child. We have long heard of this fabled Colorado clinic and had done a phone consult with their director way back in Feb. 2009. At that point, he had been quite sobering in his opinion, but had recommended a comprehensive chromosomal screening called microarray as our best option if we wanted to try one more time with my eggs.

To recap everything between the phone consult and now, we've done two more IVF cycles at our NYC clinic, planned to go out to Colorado twice, but gotten pregnant both times, and subsequently miscarried both pregnancies. So it feels a bit crazy but really kind of cool to actually finally make it to the one-day work up. We brought all of our information with us, curious to see what this clinic and specifically their head doctor, Dr. Schl. would have to say.

What a whirlwind trip - there was really not a moment of downtime. Will and I were both pleasantly impressed with the Colorado clinic's professionalism and efficiency. And honestly, at this point, I'm a bit cynical and am almost looking for something to criticize. So it was quite something that consistently we found this clinic to be really on their game.

For example, throughout the day of appointments, everyone we encountered had read my chart and knew our history. This clinic definitely gives an impression of knowing what they are doing. And when we met with Dr. Schl., he was perfectly pleasant and very informed and articulate, despite his reputation for not having the best bedside manner. He didn't sugarcoat anything, not a morsel of it. But he wasn't overly harsh in the way he delivered what seemed to be his honest opinion either.

Below is our schedule for the day. It was pretty back-to-back and well-organized. Lots of information presented and many tests and some procedures done. I expected this to all be (yawn) redundant (and I therefore predicted I would be annoyed) and some of the things were redundant of course, but there were a number of interesting things we discovered (in bold below):

9:00 - 9: 30: (but it ran longer): met with Dr. Schl (will post details in a separate post. Very interesting chat).

9:30-10:00: met with laboratory people and signed many consents.

10:30-11:00: very detailed ultrasound for me, semen analysis for Will. Turns out I have three fibroids that won't affect anything. According to some kind of doppler scan, I also have blood flow resistance to my uterus - for which they recommended 8 sessions of electro-acupuncture before embryo transfer. Who knew?

11:00-12:00: met with IVF nurse for full hour of education on how things work at this clinic in terms of contact with staff, cycling, testing, etc. Cool to see how they do things as compared to my clinic (more on this later). Geesh - this clinic really wants us to be informed - they presented us with a full binder of materials and literature - this is more info than my clinic has ever given me across two years of treatments.

12:00-1:00: lunch (was supposed to be a half hour but they had mercy on us).

1:00-2:00: met with IVF nurse for another full hour for education on genetic testing required for heritable diseases, required communicable disease testing, medication administration, etc. Good Lord, these people are thorough in their written materials and presentations (hmmm...does someone on staff have obsessive compulsive personality disorder, perhaps? Across the board, the attention to detail was...actually a little scary...but also kind of comforting.)

2:00-2:30: lots of blood work, plus was offered and accepted the chance to get the H1N1 shot - cool! - it's not available at my hospital yet. Don't have it in front of me so can't remember everything that was ordered in terms of bloodwork, but at least two things were new: AMH testing and CMV antibody testing. Will be curious to see results.

2:30-3:00: office hysteroscopy with Dr. Schl. Hurt less than I thought it would. (Given that this cost $645, I was slightly annoyed that as expected, everything in ye ole' uterine cavity is normal). Structural problems are not our problem.

3:00-3:45: met with genetic counselor (thought this meeting would be totally redundant and annoying, but it turned out to be quite useful and surprising...so much so that I will tell you about it in a separate post).

We arrived home very late last night, picked up our puppy, and dropped like dead people into bed. Right now Will and I are trying to dig out from all that went on in our work while we were away and emotionally process everything we heard. As well as attend to Ms. Moxie who had to go to (gasp! she's just a puppy!) a pet sitter while we were away.

Everything we saw and learned gave us a lot to think about. I promise to post again soon when I can. Bottom line, at the moment, we are anticipating we will likely give this IVF with microarray thing a try. It may or may not help us, but at least we'll know. And maybe then we can move forward. Or, even better, although probably unlikely, maybe IVF with microarray will actually work and we'll end up with a baby. Wouldn't that be something.

Mo