Regroup with the miscarriage wizard

Today was the follow-up appointment with the reproductive immunologist, a.k.a., the miscarriage wizard. I stand by my first impressions from the last appointment - this guy is a nutter. Will has taken to calling him the "mad scientist." Throughout the meeting with the doctor, it was hard to get a word in edgewise, he couldn't seem to remember who I was and had to review my chart in front of me to remind himself of my history, he kept mixing up Will's and my professions, etc. Sigh. He may be brilliant, but he does a poor job of making good impressions. Both of us almost felt sorry for him.

As for the test results - there were some abnormalities. Not surprising, I suppose. If you take enough tests, you're bound to find something, aren't you? The wizard was not good at all at explaining the significance of them in any kind of convincing way so Will and I will be doing the research to educate ourselves. But basically, it turns out that the following immunological tests are "not normal":

antiovarian antibodies

TH1:TH2 cytokine ratio

natural killer cell assay

leukocyte antibodies

DQ Alpha antigen

The gist of it is that these immunological issues can supposedly impact implantation negatively and also lead to clotting issues (although all my thrombophilia indicators are normal, go figure). So the wizard recommended baby aspirin and lovenox + either prednisone, intralipids, Humira, or IVIG. He was really pushing IVIG specifically, but as I've said, he wasn't exactly instilling confidence in Will or me. (After the appointment, Will turned to me and said rhetorically, "Would you ever let him touch your baby if you had one?" Ah, no.) Honestly, I'm not sure if I'm willing to do IVIG. Apparently, you need 2-3 treatments (per pregnancy) at $3,700 a treatment - the first one of which is before you know if you're pregnant or not. And the treatment is collected blood products, which is also not thrilling. Combine all that with the fact that this is a very controversial treatment, and, well, I'm just not sure I'm signing up for it.

Needless to say, we'll be reviewing the literature.

Hmmm....so remember how I was wondering if going to this doctor might be opening a can of worms? Well, consider it opened. We'll see where we go from here.

To keep things stimulating, it looks like we ARE headed to Denver next week for the one-day testing on Tuesday. Flight booked, hotel reserved, rental car rented. We'll see what they have to add to the mix. This should be interesting...

Mo

Limbo

It's strange, but since our latest loss at the beginning of August, I have felt that I don't know which way to turn.

None of the options feel good or right to me. And therefore, for once, we haven't leapt right back into another IVF cycle.

I feel, in fact, like we've just been standing still for the past almost three months.

But I guess that isn't true. In that time, we've met with the geneticist and gotten the endometrial function testing, and gone to see the reproductive immunologist (follow up appointment is in two days, finally), and we are scheduled to go to Denver for the one-day work-up next Tuesday. I hesitate to type that last item because I've scheduled that work up several times before and we've never actually kept the appointment. But I think this time we are actually going to go.

Reading all that, it seems that we've actually been pretty busy with all these testings and consultations. Which makes me wonder, why do I feel so stagnant?

I think it's because when I look at all of the options, I am just stymied. We're thinking we may do an IVF cycle in Denver. But I feel pretty much completely hopeless about it. We're considering doing some high dose IUIs here in New York, but I feel pretty lackluster about that too. We're thinking of attending an adoption conference in November, but I'm not that jazzed about that. And we've been entertaining some donor options, but again, bleh.

It feels so strange to not feel driven forward, as I have for the past two years, in our quest to have a baby. We still want a baby desperately, don't get me wrong, but the urgency has changed. Which I think is only because I'm really beginning to give up on the idea of us succeeding on our own. And yet I continue to be underwhelmed about the other options: adoption or donor. So I'm in this in-between place.

Neither here nor there.

Basically, in limbo.

For three months we've been in this information gathering place with this testing, these specialists. I'm beginning to think that at the end of it, the path won't be any clearer than it was before.

Except perhaps maybe for one thing.

Perhaps I'm moving closer to the beginning of acceptance.

Perhaps I'm starting to let the reality sink in: that there will be no certainty; there will be no definitive answers.

Hmmm.

Mo

Hallmark reject #5: the clothing line

Branching out into miscarriage announcement apparel - transformed from pregnancy announcement apparel. (Who even knew there was such a thing?!)

What do you think, coming soon to an RE's office near you?

Found in the medical school library: Labor pain scale

I spent part of this fall feverishly reading through the obstetrics section of the library at our local medical school to try to make some sense of our multiple IVF failures and five consecutive miscarriages. I didn't come up with great answers for our situation, but I did come across this little pain scale. As soon as I saw it, I knew that I just had to share it with you.

Because this, ladies and gentlemen, is a visual analog of how much it freakin' hurts to have a baby, found in an obstetrics textbook (btw, primipara means first baby and multipara means you've already had a child):

Now, as you know, Will and I would do practically anything, including amputate digits, if we could successfully conceive a child who could live.

But I have to say, it amused me to no end (and ok, I'll be honest, it slightly terrified me, too) to see that should we actually ever succeed at this venture, it may come close to feeling like I'm amputating a digit to have our little loved one join us in the world. Thankfully, it looks to hurt a little less if we get some training ahead of time (not surprisingly, it looks like fear increases pain). And of course, this is without an epidural...

From where I'm sitting now, terrible labor pain seems like a pretty damn good problem to have, ya know? But yowza!

Those of you who have been there, done that, does this pain scale reflect your experience?

It was worth it, right?

RIGHT?!

(hello? anyone?)

Mo

Even more Hallmark rejects

What to send to the friend who has a genetically abnormal miscarriage?

I know, you're stumped, right?

Herewith, the debut of the first and so-far only e-card to acknowledge the chromosomally abnormal miscarriage. Sure to cause dismay to all who receive it.

But hey, at least it is some kind of acknowledgment.

What do you think: send on to Hallmark or keep it under wraps?

Mo

Puppy at 11 weeks

We are convinced she is the most adorable puppy ever. And as you will see, she is growing by leaps and bounds!

With her stuffed red lizard:


Lying on Mo's tummy:


And sleeping with her little lamb:

Ah! Heaven!

A day to remember

The wrong post went up earlier today. It will be re-posted next week at a more appropriate time. Sorry about that. For today, no jokes. Just taking this day to remember the losses so many of us have endured.
As you've no doubt noticed, Will and I have been in a place of late where we have been choosing to laugh instead of cry. We have been making many wry jokes around the house this past month or so and we've introduced the Hallmark rejects cards here on the blog, which we've also found quite entertaining.
But beneath our off-color humor is a deep sadness at the loss of our five pregnancies. A sadness that is with us also, much of the time.

Yesterday I was speaking with my RE about where we might go from here and as we discussed the possibility of PGD, I told him that if the point of a PGD cycle is just to keep me from miscarrying again, then I don't need PGD. That as hard as things have been, I am grateful to have been able to be pregnant each and every time.

Obviously our goal is to have a baby who lives. That is the hope. But maybe Will and I don't get to have that. Maybe all we will ever get to experience is the joy of glimpsing our children a few times on ultrasound, their hearts beating, their limbs moving. If that is all we get, I will accept that. I would rather have the chance to experience our children, even in this small way, and then suffer losing them, than never have them at all. Even if we never get to have a live baby.

So I told the RE that. And he got a little choked up and said that that must be a really hard thing to say. And I guess it is, but it's where we are at.

These pregnancies, these miscarriages, are our children. And I am glad we were able to have them in our lives, even much too briefly.

Thinking of each and every one of you who has lost a pregnancy or infant. Today. And every day. Thoughts especially go out to my Hodgkin's buddy m., Susan, Niki, Echloe, Lisa, MeKate, Alexis, Natalie, NoodleGirl, Megan, Michele, WiseGuy, Michelle, Luna, and Infertile in the City.

Mo

Your endometrium is like a fruit cake...a slightly abnormal fruit cake

I finally connected with my RE to get the results of the endometrial function test.

Apparently, the biopsy results showed mild glandular abnormalities; i.e., the "fruit cake" of my endometrium is not looking quite as it should. Specifically, there was one marker present (cyclin E) that is only supposed to appear during the early secretory phases of the menstrual cycle (days 5-19), but in my endometrium, was present much later, during the time when implantation would occur. Which can negatively impact an embryo taking root.

My RE said the level of the abnormality was "mild" and so he says he is inclined to take the news "with a grain of salt." (Grain of salt on the fruit cake of my endometrium. Me thinks this is too many metaphors!) The cyclin E abnormality could be due to morbid obesity (except that I'm not overweight), or infection (not the case), or endometriosis (hey, I have that!), or stress (that too!). Since I've already had a laparoscopy this year to remove endometriosis, there is really not much else to do on that front. And stress, well...I'll do what I can, but it's ubiquitous, you know?

Bottom line, it's unclear what to make of the results, sigh. But the RE doesn't think we should give up on the old uterus just yet - or at least not because of these results. Again, I'm left wondering a bit why we did this test. But I guess the answer to that is to make sure there were no glaring abnormalites. And there weren't. My fruit cake was only subtly off, not grossly malformed.

So that's, I suppose, good news?

The Yale researcher who does this test has a twitter feed called placenta talk. The intro page has quite the graphics, if you want to click over. Who knew the placenta was, um, actually a little gross?

The immunology results we had drawn from the wizard are still outstanding, so we'll see what further murkiness that adds to the picture in a few weeks.

Meanwhile, Will and I will continue to mull and muse and sit in the trenches processing things. Which these days takes place on a mostly nonverbal level. Which is OK by me. For once, I'm out of logic, out of scientific notions, out of problem-solving ideas. Just plumb run dry of everything. So we're just going to sit here where we are for a bit, until we feel like picking ourselves up, dusting ourselves off, and trying something* again.

Mo

*"something" potentially being high dose IUI, IVF with CGH/microarray, donor egg, or adoption.

Another Hallmark reject*

*Inspired by actual family member comment after miscarriage #1.