Plan B and C and...

So today we are pregnant. At least a little bit pregnant. 4w4d, but who's counting? Only maybe pregnant, right? No beta has been drawn since Monday, so it could all be over by now. Maybe the IVIG killed the embryos. Hopefully not. Of course, I haven't felt anything cramps-wise in almost 12 hours, so you never know.  Ok, I do think I know sometimes. This never, ever works out for us. This is our seventh pregnancy in less than five years. Yowza. And last I checked, no live children. Still, it could work out, right? Maybe. But hard to tell. Hard to figure out anything, really.

That happiness I felt yesterday? Elusive, I tell you.

Ugh.

It is tough to believe in even the moment here sometimes. This all still doesn't feel very real most of the time. (I find myself weirdly experiencing the feeling of being over the moon and in simultaneous disbelief and denial.) And it feels very necessary to try to protect myself as much as possible. So that if everything falls apart (negative thought - when everything falls apart), we are ready to move forward toward having a child.

So we are moving ahead with our alternate plans - donor and gestational carrier - so we don't get left high and dry when this silly delusion I've been having that I'm pregnant reveals itself to be a fantasy.

So where are we at with our alternate plans?

There is a wonderful woman I've mentioned before who came to us and offered to be a carrier if we need it (unbelievable, really) - she has sent all of her medical records to the Denver clinic and they are reviewing them. She will be able to go for a one-day work up in May or June 2012...three months after she finishes breastfeeding her youngest daughter. We still have two euploid embryos and one no result embryo left, which we could potentially transfer to her. It's also possible I might do one final fresh IVF cycle to see if we could make anything more decent/higher quality for her to carry if I lose this pregnancy. So that's percolating.

We're also still in the process of screening potential agency egg donors...and this process continues to move at a glacial pace. We're pre-screening them ourselves rather than have another donor fail the stringent standards of the Denver clinic, because boy, that sucked.

Here's where things are at:

Donor #1 (E) - the twenty-three-year-old donor we loved with great AMH, 33 resting follicles, low E2 and FSH...but the inversion on chromosome 9 - we have asked a great clinic here in NYC if they would let us cycle with her and do CCS, eliminating of course all aneuploid embryos...They are thinking about it and talking to their geneticists and getting back to us.

Donor #2 (R) - a scary bright twenty-something physician - has a great AMH and is FINALLY expecting her period after going off the pill in December. So once that happens, we will get antral follicle count, FSH, E2 drawn. If that's all good...we'll go on to genetic testing. She's almost too good to be true on paper (dad's at NASA, sister's a Rhodes Scholar, etc...), so we're also seeking some confirmation of her narrative., just to make sure she really is who and what she says and not trumping some of this stuff up. To clarify on this, we'd be fine if half of the stuff wasn't true, but if she was being untruthful, THAT would be very concerning. We'd like to tell our child real things about their donor, not some made-up fantasy.

Donor #3 (K) - Has great AMH, good FSH and E2, good but not stellar AFC, is now undergoing genetic testing. This is a boatload of stuff because she is half-Jewish. Her personality and interests are also not so similar to mine (she's an aspiring actress. I'd rather hide in the closet than be the center of attention any day)...still trying to figure out if that matters.

Donor #4 - Seemed like a great match on paper for my personality and interests and she is super bright, and young, and is already a mom, so we know she is fertile. Her dad committed suicide, so that was a bit nervous-making, but there is no other psych history in the family, so we decided we could deal with it...Unfortunately, she has decided she is not interested in donating at this time, so she is out.

So those are the back-up plans, and the back-up plans to the back-up plans. Sigh. Probably seems really weird if you haven't had a ton of miscarriages, but, well, we are weird and we have had a ton of miscarriages. It's so strange and almost out-of-body all of this, both the being pregnant, and the being sure it can't last, and the trying to be ready to take big alternative steps if we need to to move forward.

I wish I could tell you this all brought me peace, but it doesn't. I am a bundle of nerves right now. I am so trying not to get sucked into believing in this pregnancy and getting my heart stomped on again. Trying to not think about it, or not feel too much about it really. I just don't want to get burned again. I feel like with each loss I've lost a little piece of myself. I hope it's not permanent. I hope I don't have to lose any more. I hope that having back-up plans helps make things a little less risky. I don't know that it does, but I'm hoping.

Mo

Photo: Management Briefs

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Crawling out from beneath it

The past few days I've been at a conference. The same conference I was attending last year when I started to think I was losing our sixth pregnancy, which unfortunately turned out to be right.

It is hard and sad to be here again (although geographically in a different location). Hard to be reliving some of the aspects of that looming loss, and hard to swallow that we are no closer to having a family, and hard too to acknowledge that I've lost major faith that any avenue could or would work for us.

One of the things that is most difficult about our latest disappointment with the failed egg donor situation is that it just completely derails us about what steps to take next. And I am terrified that because it took me nearly a year to get on board with going with E. the egg donor that it may be hard to emotionally regroup and also hard to take the practical steps necessary to move on to whatever is next.

Because I'll tell you, I do not want to be in a hotel room a year from now still no closer to having a child. I've had that thought for years now, that the next year will be different, that we will find a way out of this, but I have to, WE have to, find our way out of this.

And so emotions be damned. I'm moving forward. Tentatively, but forward, trying to figure out what could be next. I can grieve as I move.

I've been in continued contact with the potential gestational carrier, who is just a lovely, lovely woman. The major frustration there is our clinic. They want the carrier to have three periods post breastfeeding (which she is doing until February) before they will do a one day work up, and THEN they said it will be another four months until we could try a cycle. Of course assuming she passes the frigging screening process, which I'm growing concerned no one does. And even bigger, assuming she still is open to doing this as it moves from a romantic notion to an actual possibility. Oh, and of course, clearing all those hurdles, she might not successfully get pregnant with our embryos. Ugh!!! So this is a wonderful option, but there are still many ways it might not work. And it also feels way way too far off in the distance to hang my hat on.

I talked to my sister, who offered a couple years ago to give us some of her eggs, and God bless her she is still offering this. So we'll probably start having her screened with some preliminary bloodwork to see if she might pass the stringent Denver standards. See if her chromosomes line up, check her FSH, get an antral follicle count. She is remarkably blase about all this. Remarkably no big deal, which is lovely. As we do all that, we can keep talking together - all three of us - about what this would look like and whether it's a beautiful idea of how to make a family or the most convoluted mess-your-kid-up-before-they-are-even-born idea we could pursue. And again, I doubt she'll pass the screening, because, hey, maybe no one passes the Denver screening. Or maybe I'm just jaded.

We're talking to the agency we used about whether they have someone else we should consider for a donor, someone who has donated before or at least had all the screening, who meets our other criteria. They don't think they do. One zinger they shared is that our clinic is the only one they have worked with that does karyotypes on the donor. Really?! Is that such a rare thing? So everyone else is flying blind on this? (would love to hear your experiences on this. seems a bit crazy to forego this karyotype screen). It is financially very steep to go to another agency at this point. And honestly, I'm just feeling soured on the whole agency thing in general now. Feels so risky financially and timewise. Sigh. Denver has their own donor pool, but it is tiny. Only 57 women or something. And they only show pictures from ages 2-7. So we will look at it, but I don't expect to find what I'm looking for (remember previously I looked across the entire United States and found a measly two donors I felt comfortable with). Sigh.

The Denver clinic is having a meeting about our case today, to give us advice on how to proceed. Schoolie, the head of genetics (who is also an embryologist), and the genetics counselor. I will share more news on this when I have it. It is a nice gesture - and probably won't, but maybe just maybe could lead to some clarity on which of the many roads to take.

And that's it. One thing is very clear to me, for today at least: I am just not going to sit beneath the weight of my grief for another year. I am NOT. I am crawling out from beneath it, even though I don't know what direction to crawl in. Hopefully we'll find ourselves at a destination sooner rather than later.

Mo

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More process...and finally a decision

...Continued from my last post...

Because neither donor egg nor surrogacy felt intuitively right, I began to think that I just needed to surrender and accept that I wasn’t going to have that feeling, that maybe this would be one of those times in life when you use your head, leave your heart and gut out of it, and jump.

And in signing on with a surrogacy agency we jumped. We had our plan. Or so we thought. Only thing was, the further we looked into it, the less comfortable I felt.

As surrogate profiles came in slowly, one by one, I looked at them in front of me and was just filled with fear. None of them had the information I felt I needed to choose someone to carry my child.

On the questionnaires, there was a single question that asked about the carrier’s religious affiliation. So one GC was “Baptist,” another “Christian,” another “Pentecostal.” But honestly, we don’t really care what someone’s religious affiliation is. I’d be much more interested in a Likert-type item, such as “How religious are you on a scale of 0-10?” [With zero being anchored as “I am not religious at all” and 10 being “I am devoutly religious, with thoughts of religion filling most of my waking hours.”] What would my ideal answer be? Probably somewhere between 0-7.

Everyone appeared to potentially be falling on the very religious end of the spectrum, although this was based on their personal statements more than anything. And this seemed a little comforting (maybe the religious ones would have more social support? maybe they'd feel more grounded?), but it also scared me a little. I was raised Catholic but am not practicing so avidly these days. Would it bother me if someone quoted scripture to me when we talked? (maybe) Would I get offended if someone tried to tell me that my cancer or our six losses were “God’s plan”? (probably) What if the person was so religious that they wouldn’t terminate if we had a terrible problem like anecephaly? We don’t want to terminate, of course. We want a child! But not one born without a brain. Watching something like that unfold, and being helpless to stop it, and actually going into significant debt to make it happen, sounded horrible to me. Unlikely scenario, I know. But we've been pretty unlucky in the past! Around and around in my head went all the What Ifs.

The GC’s lifestyle was also really important to me. I wanted to know what their diet was like, were they physically fit? How well did they take care of themselves? But there was a single item on the questionnaire about diet that read simply, “How would you describe your diet”? Choices were “Excellent,” “Good,” “Average,”…etc. Problem is, all but one of the profiles listed their diet as “Average.” And I was left wondering, what in the world does “Average” mean? Being Mo, I didn’t think good thoughts. I thought… "standard American diet…hmmmm…what are they eating? French fries? Kraft Macaroni and Cheese? Popeyes?! There's no nutrition in that!!" More fear.

The other thing that we realized was critical for us was the person being in a stable home situation. We didn’t want someone in the middle of breakup, or the stress of a new relationship, or trying to date, move in, move out, etc. while dealing with pregnancy. And unfortunately, things for the potential GCs didn’t look so great on that front either, but again, information was scanty.

What I learned reading all the profiles is that a lot of things I told myself I could get over and weren’t that important to me were in fact Really Important To Me. And that there was no way to glean this information unless I interviewed each of the candidates myself. Which felt overwhelming. And made me start to resent the role of the agency. We’d be going into great debt to compensate this person - and the agency - and yet none of the things that were most important to me were answered in a way that felt satisfying.

Add to that the seemingly strong possibility that the whole venture wouldn’t even work, because our embryos, albeit chromosomally normal, are not typically developing and may be unable to produce a living child….and, well….

I felt defeated.

Much bigger than this though, and more surprising, was the surging feeling of loss that overcame me. This rush of grief at the idea that I would never be pregnant again. I began tearing up when I saw pregnant women, thinking that I would never have that, never experience it, something I’ve fantasized about since I was a child now completely taken out of the realm of possibility.

And for what? When I thought about it, we actually don’t really have great evidence that I can’t carry a child. Two out of three REs we’ve talked to since the last loss have said chromosomes normal or not, there is likely something fishy with my eggs. We have the one chromosomally normal miscarriage. Which apparently happens sometimes. All the others that were tested were aneuploid.

So I mulled and mulled. All the while we kept reviewing GC profiles. The feeling of loss grew so strong that I found myself asking Will to promise that after we used our embryos with a surrogate that he would agree to us trying an egg donor cycle because it was just too crushing to imagine I would never ever get to be pregnant and give birth. I wanted to at least be able to try. 

Will, wonderful husband that he is, heard the desperation in my voice and said if it was that important to me, we'd find a way to do it. 

And then I started to wonder, if using an egg donor felt truly acceptable, why would we do things in that order? Why do gestational carrier and then egg donor? Wouldn’t it make more sense to use an egg donor first and answer the question of whether I can carry a pregnancy? If I can, no surrogate needed. If I can’t, well, then maybe it wouldn’t feel agonizing in exactly the same way. Maybe then it would feel like this is the way that it is, something more defined and real and therefore easier to accept.

At the same time, I had continued to read about and reflect on our two egg donor candidates. I’d had one take the Myers Briggs Type Indicator and the other one had taken it previously on her own. They both had excellent health histories, were both very smart, both had my skin tone(ish) and hair color. Both were extraordinarily verbal, avid readers, and into the sciences. One was a little older and proven, perhaps a little more intellectual. One was very young and not a prior donor, but enthusiastic, athletic, and grounded. One was a bit of a hippie who wanted to be a museum curator. One was a psychology undergrad now going for an advanced degree in mathematics. One lived in the South. One lived in the West.

I can’t say exactly when the moment hit, but one day there was a rather distinctive shift.

There it was, finally. The “right” feeling I’d been searching for and missing. It was here. I walked around for several days with this feeling wrapped around me, trying it on for size. Was it going to pass as quickly as it came? It didn’t. And it’s been a few weeks now, and it hasn’t. I wasn’t sure exactly how, but one of the egg donors had really become “the one" for me. The other one is really good too, don’t get me wrong, but something about the one we chose clicked right into place. And with the selection, so did my questions about being a mom of a child not related to me; those concerns now seemed remote and not so relevant any more. I felt actually excited about moving ahead with this donor and hopefully bearing a child from her egg.

Will had been checking in with me daily – ok, more than daily - and was in full agreement. We had a decision! Egg donor first, and then surrogacy if needed. If we need a surrogate, hopefully we’ll have some frozens left from the egg donor and can use those in tandem with our own frozens. They won’t be of the same origin, but that really doesn’t feel like it matters much anymore.

I don’t know exactly how it happened, but I feel confident that we will make one – hopefully big – happy family of whatever size, composition, order and method of arrival need be.

If things go well, we will have an egg donor baby around October or November 2012. One way or another, we can make a go of it with the Mo and Will frozen five after that. And the one thing I am absolutely sure of? All babies arriving on the scene will be loved and cherished however and whenever they get here. 

Mo 

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Deciding: the process

First things first - I am astounded that so many of you are out there still reading this blog after all this time. I am so touched - and a bit shocked - to see your comments. So, thank you for sticking with us. I know it hasn't been a fun read for quite some time, if it ever was. It means a lot that you're still reading.

I promised to try to convey our decision making process....it's been a long one...but here goes....

In terms of trying to figure out where to go after our sixth loss, we've had many options on the table as you know: gestational carrier, donor egg, donor embryo, and sometimes adoption (although adoption has felt like a whole other enchilada with different stressors, rules, and uncertainties, and therefore not the choice for us right now).

The two options that we've been most closely contemplating at this point in time have been using donor egg vs. using a gestational carrier with our own frozen embryos. And deciding between them has been more difficult than I can articulate. I think a lot of it has been due to the fact that we - and our doctors - still don't know what is going wrong. Whether there is something terribly wrong with our embryos (even when they are chromosomally normal) or whether there is something terribly wrong with my body, making me unable to carry a child to term.

We've been round and round and round the different options. I've been researching them, trying each different choice on for size, trying to find the option that seems like the right one to begin with. Typically, my decision-making process involves gathering scads of data to figure out what makes sense rationally and then waiting for some intuitive process to occur to narrow it down from there and feel confident in my decision. Will is much easier than me about all these things. He doesn't question things like I do, doesn't exhaustively research. In fact, if he'd been in charge of this decision, it would have been made long ago, more impulsively, and probably would have been to transfer our embryos yet again into me and see what happened. Problem is, I couldn't do that again, not with our track record. And once Will thought about it a bit, he agreed that it probably wasn't really a very prudent plan.

So in choosing between using a gestational carrier or a donor egg, I tried to get a sense of what each entailed, what we'd be giving up with each choice and how hard that might be, what we'd potentially gain from each choice and how cool that would be, how expensive (my oh my) and uncertain (sigh) each choice would be. I spoke with a couple of friends, I read everything I could get my hands on, I made pro and con lists, I slept on it, I talked to a professional about it. Problem is, even after exhaustive research, neither a gestational carrier with our own embryos nor an egg donor with my body stood out as "feeling" exactly right.

We perused surrogacy forums and databases. We even signed on with a surrogacy agency and had them start looking for a carrier for us. We simultaneously contacted our current and former clinics and got some names of egg donor agencies and began a search across the U.S. at several egg donor agencies with the parameters we thought most important to us in selecting an egg donor.

We narrowed it down to two egg donors at two different agencies. And we began looking at gestational carrier profiles that were sent to us.

And although none of the gestational carrier profiles seemed to be the exact right fit, we figured we would most likely move forward with a gestational carrier because it seemed to make the most rational sense to use our own embryos first..... Meanwhile, Will was ready to move forward with anything. He told me he'd be happy with either egg donor. And as we looked at each gestational carrier profile, he said he'd be fine with each of those as well.  As is typical of Will, he was ready to choose any and every option.

And me? I was scared to commit to any option. I kept waiting for the "right" feeling to come.

(to be continued)

Mo


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To Molly and Caroline

We wanted to take a moment to respond here to your comments on Mo's last post, as you left no way to reply to you directly. We are not sure where you come away with the impression that we see adoption as “inferior” or “second best” to any other family building option. (Although clearly you see some choices as superior to others.)  

We are fortunate to come from large extended families that are multicultural and multi-ethnic.  Like many families today, these families have been built in numerous, creative ways. Many of our nephews and cousins came into this world the traditional way. Others came through alternative pathways: several through IUIs and meds, four by IVF, two through surrogacy, and two through adoption.  Luckily, all of the children are loved individually and it makes no difference how or when they came into our lives.  And we do not judge their parents as less than for whatever choices they have made to be able to have children.

Adoption isn’t a lesser choice. But we would also like to point out that surrogacy and egg donation aren't lesser choices either. And adoption, while a wonderful choice, is by no means an easy or certain path; we would strongly argue that it is not "easier" than medical interventions - just different. (Those who have pursued both, please feel free to chime in.) To clarify, we have not been considering combining egg donation with a gestational carrier – those are two separate pathways we have contemplated. But we know two couples who have used an egg donor combined with a carrier and we would never presume to judge them for this decision.

Mo's posts, we believe, reflect the fact that we are conscientious and careful in all of our choices.  It may not be evident to some, but for many reasons that have nothing to do with love, adoption is not the best option or may not be an option at all for a given couple.  It is a complex process for sure and one that we have thoroughly investigated. Some details are private.  

We appreciate everyone's support. It hurts to be misunderstood and even more so to have others jump to conclusions regarding our intentions in loving a child.  

Mo and Will

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