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

Wednesday, November 6, 2013

Consult #1: Questions, Possible Answers, Possibly More Questions Than Answers

Well, hello strangers!

It has been a rough couple of weeks and I am tired. I have been starting and saving and ultimately not posting incomplete posts for a little while here, because sometimes I just can't bring myself to write about where we are right now. There have been periods in my life where I didn't write in my journal, because it was too painful to see what was happening in writing (see about 3-4 years of my 5 year first marriage). I kind of dropped down into that mindset again because I just CANNOT keep writing that things aren't working. I have a new journal and I wrote in it with hope during our last FET cycle, and according to my journal it's still September and I'm still waiting. I am so tired of writing the words "It was negative" over and over and over again.

And here, in this internet world, I haven't really delved too much into where we are. It's too hard. It's a little personal feeling. And the truth is, I don't really have a clear cut answer.

Our plan consists of this:
1) Complete three 2nd opinion consults with other clinics, preferably before the end of November. Complete orientation with a local adoption agency. Gather information on all possible options.
2) Make a plan for what to do with our 6 2PN embryos sitting in the freezer.
3) Don't do anything with said 2PNs until February at the earliest, because we desperately need a Fertility-Free Holiday and we want December and January to belong to US. Not uncertainty and heartbreak and drugs.
4) After 2PNs are thawed and grown and transferred, either dance a hestitantly joyous dance and call it good, or realize that we are at a big fat fork in the road and make a difficult decision. Continue down this path that has been largely unsuccessful? Or blaze a new trail into the world of domestic infant adoption and learn a whole new language and way of being hopeful and expectant with a new kind of uncertainty.

Pretty good plan, eh?

Today we had our first consult, with CCRM in Denver. Over the phone, as I don't have a transporter handy. It was very, very interesting. I really wasn't sure what to expect. Or what to hope for. Or how I would feel with pretty much anything that would be said. Did I want them to come back and say "pregnancy is a long shot for you?" so that I can put this all to bed? Maybe. As hard as that would be, for the love of all that is holy, I would love for SOMEONE ELSE to make the decision that we've had enough and that hope is fleeting and this is just not going to happen for us. Because if there is a good chance that there is something missing that could be a gamechanger, I just don't think I can put it to bed without peering under that rock and clearing away what lies beneath. Did I want them to say "we've had a bunch of patients JUST LIKE YOU and they are all bouncing their bundles of joy on their laps RIGHT NOW?" Maybe. Of course that probably means more treatments and more punishing my already punished body and, yet again, no 100% guarantee of success, so possibly more flushing money out to the depths of Lake Ontario.

What did we get?

Interesting, interesting stuff. We have been questioning whether or not sperm could be an issue. We have been told it is likely not an issue, that chromosomal abnormalities in sperm are likely not our issue, and so we have concentrated on MY eggs and MY uterus. When really, in addition to my uterus (which has been photographed and poked and prodded and tested within an inch of it's little 8cm life), sperm is the only other constant. We did donor eggs and had similar results. In fact, we had a lot more fertilized eggs, but our ending number of blastocysts was not stellar. 4/15 that were allowed to culture and grow out, and only 3 of those resulted in good quality blasts. The rest either arrested or did what embryos do when they don't make it to Day 5. And then there's those 6 that were frozen on Day 1, those enigmas that may or may not amount to anything, really. So, uh, remind me again, why isn't sperm a factor? Oh, yeah, according to CCRM, that was TWO out of the THREE possibilities they threw out there. 1) Chromosomally abnormal sperm due to translocation, identified through karyotyping (which we haven't had done). And/or 2) Fragmented DNA in the packaging of the sperm, testable through a screening they do in office in Denver. INTERESTING. Both of these result in a) poor implantation rates and b) early miscarriage. Both things we struggle with, despite having stellar SuperDonor eggs at our disposal. Hmmm. And, if I may add, feeling very frustrated, things I have asked about and been pooh-poohed by our current medical team. Harrumph. Now, I realize that we are talking one out of 3 consults. But this clinic is apparently the best in the nation. So I am pretty sure that I can take what they say seriously. We will be testing for these issues. It doesn't mean that's what's going on, but OH MY GOD it would be so exciting if we had an actual answer. Of course, at a price. Losing Bryce's genetic component would be a big loss, but he has so much more to offer than sperm. Nurture over nature. I would pee myself if this was our silver bullet. What's this #3 possibility? That perhaps I don't produce enough of a protein in my lining that is the essential ingredient in an embryo implanting in the uterus. An issue identified through an endometrial biopsy (ow ow ow) and then treated with the super Lupron time release shot over two months. I have never heard of this, have you? The protein is called "integrin?" Apparently a relatively easy fix. If that's something going on.

Oh, and the recommendation for our little 6PNs was... thaw them all. Grow them out to 5 days. Do not transfer anything earlier than 5 days. Risk losing them all because chances are they won't do anything if they aren't blastocysts anyway. (This is not the opinion of our current team...they say grow to Day Three, Day Five is too much of a risk.) Oh, and karyotype first, because if we do have the translocation in the sperm, then chances are those embryos are no good. Even if we did get pregnant with them we would likely miscarry and if we didn't miscarry then we'd pass the translocation on. Do I want to do that? Do we want to give the gift of infertility to our future children? NO NO NO. So, now we have to figure out a) when to get the karyotyping done and b) how to say, "yes I'd like to grow my 2PNs out to Day Five fully realizing that they may all arrest and we have nothing to transfer." Gargh.

So there you have it. They would like us to fly out to CO for a day-long workup for both Donor Egg and my eggs. Because, oh, my eggs aren't totally off the table necessarily. If it's a sperm issue. So then we get to switch around our genetic mourning. I've done pretty well mourning my eggs. How to deal with the possibility of reintroducing them into the pot and mourning Bryce's sperm? WHY DO WE HAVE TO DEAL WITH THESE HARD QUESTIONS AT ALL? I am so frustrated. We are so frustrated.

And, if you haven't noticed, we are also looking into domestic infant adoption. For information. To see what this agency has to offer and if we have a better feeling from them than we did from a different agency, whose seminar we went to two years ago and left us feeling hopeless. However, just so you know, WE WILL NOT DO THESE THINGS SIMULTANEOUSLY. We are hunting and gathering right now. We are searching for information so that we can make an informed decision. Adoption is NOT a fertility treatment. We will not be filling out paperwork and putting ourselves into adoption so that, while we're "not thinking about it," we will get pregnant. It is unbelievable how many times I have heard that. I need to put medical treatment behind me before I can commit to adoption. I am very open to adoption, more so than I've ever been. We're tired of all this. We realize, WE WANT A BABY. We want a child in this house. We are tired of being just the two of us and two tiny furry beings. We want noise. We want chaos. We want another outlet for the incredible love we have to give. And we are so, so tired of the emptiness. But, we want to enter into adoption with a clear mind and heart.  Actually, I should revise that. Bryce could go now. I am the one who needs to feel more resolved. I am the one who is finding it difficult to let go of this hope that has not exactly served us well. I want one more try. It's like crack. Expensive, body-punishing crack. (Oh wait, that sounds like actual crack, although I think that's cheaper than gonadotropins...) The possibility that there is a fix and we could have the experience of pregnancy and that whole piece of the human condition that has been so elusive to us is just so...addicting. How can I close the door when there's still hope and the possibility of an answer and a treatment that will make this dream come true? But, at the same time, how can I keep torturing us with this uncertainty while there is another way to become the parents we dream of being? Tough times. Tough questions. No good, solid answers.

So, once the 2PNs are gone, and we are either happily pregnant and hoping we stay that way or yet again in this lonely drifting boat, we have to decide. Further treatment, or move onward to adoption? If we choose further treatment, we have to put a number on it. We can't invest a lot of money into another try. That's the thing with the possibility of a sperm issue--donor sperm is WAY WAY cheaper than donor egg. Maybe we give that a shot. We have two more consults to go and the adoption orientation to absorb. We have more information to gather. We don't have to make a decision until later. We are off until February (well, one consult is in January because we didn't want to do anything in December and November was booked). Why, why, why must this all be so exhausting? I hope that we can survive this exploration process. I hope that we get more answers than further questions. I am so grateful for our togetherness and open hearts...I don't know how I'd survive all this if we didn't have such a strong relationship. Here's hoping there's a resolution of some kind looming on the horizon...

10 comments:

  1. You are always in my thoughts. Especially now as you sift through all these directions to take. Sending you many thoughts.

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    1. Thank you so much... I appreciate it!

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  2. Well, I'm overwhelmed just reading that so I can only imagine how you must be feeling right now. I am glad that you are taking time for you over the holidays and trying to make through what we both know is going to still be consumed with thoughts of our "maybe someday" family. I'll be interested to hear what you learn from the other two consults.

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    1. Thanks, Aimee! I will be sure to share the thoughts we receive from all three doctors... still reeling a bit from the last conversation. Yikes. I hope the holidays can be a respite despite the spirit of babies not born yet that hangs over our shoulders...

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  3. I like that you have a plan. And that you are taking some time off, and being slow and careful and methodical in gathering your information before deciding on next steps. I also remember that feeling... telling myself I'd stop after the second IVF.. and then the last IVF... and move to adoption, and then not being ready to let go till I had explored all the possibilities.

    None of this is fair. I want to see a happy ending for you guys so badly. Good job in your approach and best of luck.. I will keep following and hoping for good news this spring.

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    1. Thanks! I know, we've totally overhauled our original plan 8 ways to Tuesday and now we are just really really unsure of what the future will bring. It's scary because I feel like we're at the end of our rope and deciding in which way to jump. I appreciate your thoughts and support! A happy ending is coming our way...maybe just not how we originally thought. Such is life, though. I like this plan, too...

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  4. I'm thinking of you and still following along your journey. I'm SO glad you had a phone consult with CCRM. THEY are really the best! I don't know if you still follow my blog or not, but that is where we ended up.. and it was our best cycle ever... ON A LOT LESS MEDS! My local clinic kept increasing my meds when in fact i needed less! The ODWU is good... will give you a lot of information. I was happy that they did all of their own test... in a way starting out fresh and figuring what needs to be done. Anyways... I could go on and on about how great they are. We have our daughter because of them. If you need another invite for my blog (I have tons of CCRM info on it), just comment back on here with an email addy I can send you an invite too. I don't know if your on Facebook, but I can also add you to the CCRM group...

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    1. Thanks, Mel! Yes! Please send me an invite, I haven't been able to get into your blog and I thought you had disappeared... How refreshing to know that you HAVEN'T disappeared and you have a daughter! What is ODWU? I am on Facebook... Is your email still the same from when I sent the meditations? I can send you another email through that if that works... THanks for the info!

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  5. I'm glad you are feeling some relief, and creating paths for yourself, arming yourself with information and doing everything you can. Always kind of baffles me why REs don't focus a wee bit more on the male. I mean--why not? I don't get it. DH had his karyotyping done at the very beginning (normal) but we're doing it again, just in case there was some error in the first test (unlikely, but you never know). His two fragmentation tests came back normal, as well. If you find out any other tests that are recommended for sperm, would you let me know? Out here rooting for you. Always.

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    1. Thanks, lady. Yes--I do feel a little sensitive about the apparent complete focus on lady parts. I think those were the only two tests--karyotyping and the fragmentation of DNA 'packaging' test. Rooting for you too--why must things be so incredibly hard?

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