Follow me on the crazy, hopeful, discouraging, funny, and ultimately successful (one way or another) path to parenthood while facing infertility.

Sunday, November 15, 2015

Did We Put Ourselves In This Position?

It's been an emotional week, a time of heaviness and weighing of decisions and incredibly strange existential crisis type discussions. In my last post, The Elephant in the Freezer, I talked about how we have this impossible decision to make with our remaining embryos. I mean, not impossible, but one that has casualties no matter what. Or if not casualties, then complications. Discussing it for over a week has resulted in a lot of tears, some epiphanies, and the overwhelming sense of unfairness to our situation. The question that keeps haunting me in the back of my mind though is, did we put ourselves in this position?

Part of the complication in this ongoing discussion stems from the fact that both sets of embryos have donor material involved, and it's not the same gamete for the two sets. Part of it is because the egg donor/Bryce sperm set are 2PNs, and so they are frozen but upon thawing could prove to grow out to...nothing. These things together make donation hard. We can't grow out the 2PNs and then refreeze whatever makes it without acknowledging that we would very likely take a large hit on quality, and these embryos did not come from a successful cohort. So we really don't know how many we are dealing with here.

A year ago, when we were realizing that our time to keep doing the IVF thing was running out and my body was putting nails in our pregnancy coffin faster than we could pull them out, we started thinking about the frozens more seriously. Our hope was to transfer them all before January, use them up before committing to adoption. We had a great plan. And my uterus laughed and laughed. When it became apparent that we weren't going to get to the point where my body was hospitable for transfer anytime soon, we made the decision to put the embryos on ice until a later date and move forward with adoption. That enough was enough. That we wanted to be parents, and I wanted to no longer be a pincushion/wand receptacle.

At some point, Bryce had a conversation with a friend who has a different religious viewpoint than we do. Bryce said what a difficult position we were in, and his friend said, "Well, I would never have put myself in that position in the first place."

Granted, in typing it now that sounds super judgy, and I don't think it was intended to be because this friend and his family have been nothing but supportive to us throughout our infertility journey despite knowing that they would never have chosen IVF due to their religious beliefs. But that statement just sticks and sticks with me.

Because yes, when you sign up to do IVF and fill out the scads of paperwork (which is quite frankly DWARFED COMPLETELY by adoption paperwork, but it's still a fair amount of signing), one of the things that you agree to is that you will be able to make decisions about any remaining embryos. Including in the event of your death, your husband/partner's death, or both of your deaths. And through the clinic where we started (and I think the one where we ended, too), donation was not an option laid out neatly on the original paperwork. If you wanted to donate your embryos, you would have to arrange that yourself through a third party.

One such third party is Snowflakes Embryo Adoption Program, which is a part of Nightlight Christian Adoptions. Their program allows for people to donate their excess frozen embryos, through an actual adoption process. They do accept  donor material-created embryos, which I was somewhat surprised about, but they don't say anything (that I saw at least) about 2PN embryos. There is a pretty comprehensive guide for "Placing Parents." (The irony of this terminology does not escape me.)

Before I get too deep into this option, which is intriguing to say the least and worthy of its very own post, I want to explain a bit about "getting into this situation." Because while yes, we are in this problematic quandary because we chose to do IVF, and because we have excess embryos, we were very careful about our decisions to try to prevent being in this very situation.

The fact is, I don't see these embryos as excess. From the beginning, we were (perhaps naively) utterly sure we'd have success with IVF, be lucky enough to have frozen embryos for a sibling, and then be done. IVF was explained to us as a likely solution for our issues with IUI (and impossibility with "natural" conception). My PCOS would work in our favor, and I would produce a zillion eggs and likely good embryos.

Except that didn't happen. I was shocked when our first IVF cycle didn't produce blasts and didn't produce frozens. I thought frozens were a given. I had a ton of follicles, but my mature eggs were way fewer and the number that fertilized and grew out were even more scant.

I thought it was a fluke, and when the cycle failed I was devastated but we tried again, and our follicle-to-embryo attrition was WORSE. Again, no frozens. It seemed that worrying about frozens was kind of silly, in our case at least.

Then we tried a new protocol and I DID get frozens, but more importantly I DID get pregnant. Unfortunately it was a wonky ectopic, something I'll never understand as they put the embryo in my uterus, not my tube, and so I lost both the pregnancy and my right tube. A double hit. But I had frozens. And hope that I could actually get pregnant in the right spot, next time.

The frozens didn't work. The new fresh cycle didn't work. But that one, again, created frozens... and the frozen cycle resulted in my first bona-fide uterine pregnancy, one that we thought was the end of all this nonsense.

Except it wasn't. I miscarried. I broke apart. I started feeling like maybe this wasn't going to happen, after all.

At this point, three years in, we had NO FROZENS. None. We were making a decision without complication, just a boatload of grief.

And we decided to do an egg donor cycle, to believe that things weren't working out because my genetic material was "too old" at 36 and it was failing us. So we chose an option where the egg age was nearly 10 years younger, and proven with pregnancies resulting from all previous cycles (with other couples, other uteruses). We had a phenomenal cycle where we had three blasts to transfer, three blasts frozen, and for some reason, six embryos thawed as fertilized day-one embryos, or 2PNs (2 pro-nuclei). The blasts didn't work. The frozen blasts didn't work. We wanted to make some new decisions.

We did not, however, transfer the 2PNs at this time. We figured we could freeze them and figure out what was going on, since the donor's eggs also didn't work so maybe it was a different factor. So maybe this is where we first made the decision that led to the current problem we're having. It just seemed like the 2PNs were such a gamble, such a bizarre thing to do since it was false numbers... we didn't have six embryos, we had six STARTS at embryos. They probably wouldn't actually become six embryos, especially given our track record of whittling. And since they were amorphous and the rest of the cohort didn't make it after transfer, we just didn't want to transfer them yet.

So we did our second opinions and we landed on doing a split cycle with donor sperm at a different clinic. Half the eggs retrieved would be fertilized with Bryce, half with our donor. We were able to transfer the ones that were all our genetic material. They didn't make it.

Which left us with five frozen blasts. (I think it was five...I'm kind of thrilled that I don't remember with great clarity.) I think we transferred three last September, that (of course) didn't make it, and that left us with two remaining frozens that were my eggs and donor sperm.

And then we tried like the dickens from October to the first days of February to get them transferred. I couldn't make it work. I realize this is personalizing it quite a bit, but in the end it all came down to my uterus in the end, so it IS personal. I had the hysteroscopy in October that revealed the Asherman's Freddy-Kreugering my top third of my uterus, and then an HSG in November that showed we were okay to start but the scarring was still there. And then I had the fluid and the poor lining and I got cancelled in December. And then the same thing happened in late January, and when I tried to salvage a retrieval out of what was obviously not going to result in a transfer, my estrogen crashed and I got nothing.

But I still had embryos. Frozen embryos that I COULD NOT TRANSFER. Embryos that weren't excess, but rather homeless. We seriously bandied about the possibility of gestational carrier for about a day before determining that we couldn't make that work for a variety of reasons and we didn't want to do it when we could decide to move forward with adoption and ACTUALLY BECOME PARENTS. It might take a while, but we wouldn't be gambling anymore. We would keep the embryos on ice and maybe try for a sibling after we became parents, after a break, after having some space from the physical and emotional hell that is IVF.

In this arrangement, we ALWAYS planned to use the embryos. Until I got far enough away from IVF to realize how awful it truly had been, how abusive to my body and soul it had become (not that I regret doing it, not at all, but it became unhealthy after a while and I no longer cared how hard I pushed my body as long as there was the possibility I could become pregnant). The thought of doing that again became something that filled my eyes with tears, instantly.

However, having the frozen embryos meant that I didn't have to 100% believe that I would never be pregnant. There was still a very small chance that some amorphous thing could change and I could get pregnant in my early forties with an amalgam of embryos from different sources and have the best of everything -- have our first child through adoption, and then provide that child with a sibling and have the chance to be pregnant. It is incredibly difficult to realize that in actuality, this is a fantasy. That in reality, after massive amounts of deliberation, it seems that transferring those embryos to me is a terrible idea for a whole host of reasons.

What makes me think my uterus will suddenly be hospitable? That my hormones will do what they're supposed to do to prep and sustain a pregnancy? What makes me think that I can survive another round of injections and driving an hour and fifteen minutes for monitoring appointments? What makes me think that statistics will turn on their heads and I will suddenly reach success THEN when I couldn't do it in my thirties? Would I survive another miscarriage, especially knowing that I WILLINGLY CHOSE TO TRANSFER EMBRYOS INTO A KNOWN DEAD ZONE?

There's hope, and there's realism, and there's fantasyland, and then there's trying to decipher one from another when it's all mushed together in this sticky mess we've landed ourselves in. Or have we?

YES: We chose IVF. We chose to keep going. We chose to continue past when most people would have made a different choice. We created these embryos. We put ourselves in this position.

NO: We thought ahead of time how we would settle out embryos, and we decided that we WOULDN'T HAVE ANY leftover. Our intent was always to use them all. And at some point, that choice was taken from us. Maybe we should have stopped before moving on to donor material. Maybe we should have tried gestational carrier once my uterus revealed itself to be a formidable culprit. Maybe we should have transferred those 2PNs at our first clinic before moving on to another one and to an entirely different donor adventure. Having no way to foresee just how awful everything would get, just how impossible this whole venture would be... we planned as best as we could, and so we did not intend to have "excess" embryos to contend with. It was a risk we knew was possible, but we did everything we could to avoid being in the precise position we're in today.

The question of what to do has become more sticky, now that we are in a place where it is pretty much decided that I won't be transferring these embryos to me, ever. I still do not believe that discard is a good option, which leaves us with donation. And in donation there are additional sticky questions, best answered in a different post. I do like the option of giving these little embryos a shot in someone else's uterus, without them making their way back to us, if only that it a) doesn't destroy them, b) doesn't destroy me in the process of trying to transfer them to my defunct uterus, c) gives someone else a shot. There's interesting ethical dilemmas there, too, not the least of which is that we'd be donating someone else's material in both sets of embryos, and that most embryo donation/adoption programs have political views that don't jive with ours. So much to think about, so many things to consider.

The one thing I do feel pretty certain about is that although we put ourselves in the position of doing IVF that resulted in these tiny ethical dilemmas, we did EVERYTHING we could to prevent this very position that we are in. There was no way to anticipate that every single freaking thing that could put a roadblock up would happen, things mystifying even to our medical team. Somewhere in the past seven years we broke a mirror or something, because this series of unfortunate events led us right here, to this difficult choice that results in a lot of soul-searching and a not a small amount of mourning. It's hard to realize that every choice we made up until this point led us here, with the help of some atrociously bad luck.

The choice I don't regret whatsoever is leaving this medical arena and pursuing another avenue to parenthood. One rife with ethical dilemmas of its own, but we can hope that maybe we'll be thrown a bone and the series of unfortunate events that plagued us throughout our IVF journey will end there, that we may have a complication or two but nothing like where we've been. I am excited for adoption. I am mourning the loss of a fantasy while anxiously anticipating a beautiful reality that is much less amorphous, although for the time being just out of our grasp.

9 comments:

  1. Oh, Jess. I am so sorry. Truly. I don't have any good advice, except to continue to search your heart and don't make a decision until you feel at peace with it. As you have realized, the further away from a situation you get, the more clarity seems to happen. Take your time making a decision. My initial feeling is to leave the embryos for the time being, because maybe your choice will be different after you have brought home your baby through adoption. I know storing the embryos is costly, but for peace of heart might be worth it. Sending prayers to you to help in this decision. Many hugs.

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    1. Thanks, Charlotte... we probably will store the embryos for a while, we are looking into proration as we explore embryo donation/adoption. I think coming to grips with them not getting transferred to me has been the hardest, but ripping the bandaid off that decision is freeing. I couldn't take breaks between IVF cycles that were too long for this reason too--I hated delaying the inevitable. Thanks for your hugs!

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  2. Oh boy, that is a conundrum with no easy solution. Screw the judgy religious friend, tho. You came at this with the best of intentions, and it's your moral compunction that leaves you with a dilemma, whereas others would feel little attachment to embryos and might discard them more easily. I can certainly identify with the "ghostly Bermuda triangle" sentiment and the ponderous what-now questions hovering over frozen embryos. The 'frozen' factor, fortunately, gives you time to make a decision you can live with in the long-term while some clarity of perspective (hopefully) reveals itself. XO

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    1. Thanks for your commiseration... it stinks to be in these positions but it's helpful to know that others "get it." I didn't feel particularly judged by the friend, but it did set off a feeling of, "How have our choices led to this moment?" that I wanted to explore. Thanks for the love, we'll figure this out sooner than later while continuing to keep those little nuggets on ice.

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  3. Yes, I agree with A about the judgy friend. You don't need to justify how you got to this situation to anyone. I hope that time will give you the answers you need.

    PS. I know about ectopics (volunteered on an ectopic site for six years), so if you want a brief explanation of how you can have IVF and an ectopic (it happens), feel free to email me. Or I can add it here - I just don't want to take over the post which is about something else.

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    1. Feel free to add the ectopic info either here or on my microblog post... I would love to hear more since it wasn't really explained in detail to me at the time and was presented as "less than 1% chance" that that could happen. Insanity. I don't know if this came up in your information, but the celia on my right tube was pointing the wrong way, so maybe it was a baby sucker? Or maybe I just wanted to blame that part of my anatomy? :) Thank you for your thoughts. To be fair to our friend, it was a one-off statement that wasn't followed by any further discussion and I don't feel like I owe him an explanation, I felt like I wanted to explore that line of thinking for my own self. To look at our choices and how we got to this impossible situation that we tried so hard to prevent. Thanks for the support!

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  4. Oh Jess. 😞 Nobody can possibly anticipate everything that will happen, every single circumstance that can lead to an ethical dilemma. Your friend is right that if one chooses not to to do IVF, one will not face these decisions that you do. But his beliefs may someday put him in other dilemmas that you won't necessarily face. Life is not safe. I hope you continue to work thruogh this.

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    1. It's so true that life is not safe, that there are so many ways that you can be put in a quagmire. I feel like we're deep in the muck and looking for just the right stick to haul us out, but we'll always be covered in a thin layer of muck. I am a control freak, admittedly, so I like to think that I tried SO HARD to anticipate all outcomes, and we have the t-charts and tree diagrams to prove all our hard work planning the unplannable. :) We are slowly discussing our way into options that we can live with... here's hoping they are actually viable options. Thanks for the support and the love!

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  5. There is no right answer, and I am so sorry that you are facing this. Love you.

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