Friday, November 9, 2012

Confession

This post has been a long-time coming, slowing being drafted in my head over the last few months. So much to say, but the information was unclear and confusing, hence I wasn't ready to share what was happening out of fear of giving inaccurate information. But also out of fear that I would appear two-faced and flippant in my decisions. It's time, though. Things are moving and because so much will be happening soon, it's important to be open and honest. Part of me hopes that by sharing this too that somehow this information may potentially be useful to others.

Let's start with June 22, 2012. The day Grey and I learned our Hail-Mary FET had failed. The day, that despite mentally preparing ourselves for, still broke our hearts. The day our biological children died. I remember being curled up in a ball on the floor, sobbing uncontrollably with Grey. How could this have happened? How could everything have gone so wrong? It was  clear that our REs were in the dark as to why treatments weren't working. "Bad luck" they had told us. "Just a matter of trying again." But neither of us had the strength to continue. The pain from loss was too great and both Grey and I felt unheard by others as well as by each other.

We made one of the best decisions in that moment and started marriage counseling. We both knew that things were bad, but the extent to which wouldn't become clear until months later thanks to David's and Dee's help. Death does this to people, robbing them of the world they knew; the life they had hoped for. Without help, death can do destroy everything.

As we healed, Grey and I made the decision to stop treatments and to start the adoption process. We were excited about this new road, as it gave both of us a sense of equality in the expansion of our family. So we did what any couple does when they start down this road: we researched options, talked with other couples who had adopted, made plans for interviewing agencies and talked about what we envisioned for our family. After lots of talking, we found an agency that we both really liked. One that emphasized open adoption and provided lots of support for birth-parents, birth-grandparents, adoptees and adoptive parents. Everything was in place and we managed to secure one of the last spots for an August seminar to start the process and hoped to do a homestudy by November.

Then a gigantic monkey-wrench was thrown into the mix. The agency learned we were planning on relocating in a year. Faster than you can blink, the door to adoption closed. "Relocate, get settled and then we can talk" they all told us. Our independent adoption option dried up too, with the social workers failing to call us back. We were back at square one.

In hindsight, the decisions from the agencies makes complete sense. Their goal is to be able to place children in a home that is stable and one that a child can thrive in. Hence any potential adoptive couple needs to be in a state where they are not relocating. Add in the fact that open adoption requires birth parents having the opportunity to see their child, and moving makes things especially difficult.

Still, I had a hard time accepting this. While in Boston in July, I was still scheming. "What if we find an agency in Massachusetts?" I reasoned. No go, as they also wanted us to be settled first. I finally had my breakdown on the Freedom trail, where it finally became clear that it was time to admit we needed to wait.

All hope seemed lost as we climbed the steps to Bunker Hill. As Grey read the placards, I stared off into the skyline, hoping for a sign. It was then I saw the double-rainbow that brought me to my knees. The one that brought peace to my heart. The one that gave me the strength to do my interview the next day, to survive a wedding with Grey's family and even to go to New York to see friends who were expecting a baby in October (and an unbelievably adorable pregnant woman to boot).

That double-rainbow was on my mind when Grey and I went to visit Jay. Opening my mind to the conversation ahead.

For those of you who don't know Jay, I highly recommend clicking over to her blog and reading a few posts from 2010. A veteran IFer, she's been through her fair share of hell navigating the world of fertility treatments and stroller nazis. Jay was one of the first blogger ALI bloggers I found and her humor was instantly contagious.

What makes Jay extra special is that she decided after MJ was born to do something to help those who were still in the trenches. In July, 2012 she wrote a post about quitting her job so that she could work with Fertility Authority (http://www.fertilityauthority.com/)A darning move for anyone, let alone a new mother, but Jay is committed to helping those who are trying to resolve, wishing every single one of us a happy ending to our journeys.

So it wasn't a surprise that during our meeting in New York, she did this with me too.

The reality is, Grey and I still have two high-quality embryos left from our fresh-cycle last December. I've been terrified to talk about them, convinced that any attempts at FET would result in losing them. So I did the thing that scared and wounded animals do: I avoided the topic. When asked about children, I happily talked about our plans to adopt and how we were excited by the prospect of moving to a new city. But never the embryos. It hurt too much to think about them; the idea of destroying/donating them made me physically ill. Hence, I was stuck. Stuck with how to proceed, scared of losing those last bits of hope.

Jay did something different. While Grey went off to find some water, she turned to me and asked me point-blank about our embryos. She told me she knew how scared I was, but that she still had hope. And then she reminded me that Fertility Authority was set up to help someone like me. That if I gave the word, she would have the team there discuss my case and find an RE for a second opinion. No calling on my end, no having to answer lots of questions, no having to work our way through a maze of paperwork.

Though I initially waffled on the idea, the conversation stuck with me. And as I reflected back on our time on the East Coast, the image of the double-rainbow haunted me more and more.

Finally, I wrote Jay and told her to make the second opinion appointment happen. Within a few days it was set up: new clinic with an RE who specializes in repeat pregnancy loss. Outside of providing insurance information, all Grey and I had to do was show up.

I panicked. Panicked hard core. How could I do this again? Walk into a waiting room filled with other women who so desperately wanted babies knowing what I knew? How could I trust that any of this would be different? After all, we are unexplained. There's no reason I can't become pregnant, so what will be different this time?

It took Jay several emails to talk me down. In that moment where all I wanted to do was hide, she wrapped me in love from afar and gave me a bazillion reasons for why I should meet with the doctor. Finally, with David's and Grey's help, I agree to put my trust in things that were moving forward. Finally, I set up a formal appointment to see the new RE, Dr. Smile.

At the beginning of September, we had our first appointment with Dr. Smile. As promised, Grey and I didn't need to fill out miles of paperwork ahead of time (just a few bits of information when we arrived) and we were back to see the RE within 15 minutes of arrival. Sitting across from her, she reviewed our history with us, providing ample amount of tissues to get me through the first 6 months of 2012.

What we determined during the meeting is that I should have been on PIO for my FETs. Crinone isn't enough and it's likely that's the reason I miscarried in April. Something I had suspected, but was told couldn't be the case. We also talked about my response to meds, fertilization rate and even survival rates during the thaw. She was very impressed our embryos were so strong, leading her to a similar conclusion that both Grey and I had come to: problems with implantation.

Then Dr. Smile did something I wasn't expecting: she suggested RPL testing, providing all the insurance codes so we would not be billed. Walking through each of the tests, she talked about her reasoning behind which ones to perform vs. ones that weren't useful. In the end, both Grey and I were karyotyped and I had an APA panel and anti-thyroid hormone levels checked. We were sent out front to schedule a follow up appointment with a very optimistic Dr. Smile telling us she had hope for us regarding all of this working out. Cue the knot in my throat.

4 weeks later, Grey and I returned for our appointment with Dr. Smile. Joking the whole way up, we both fully expected the results to come back perfect and there to be no change in treatment. The conversation about the karyotypes was relieving and amusing; apparently no patient has requested images of their chromosomes and I was super excited when they promised to mail us the results.

And then Dr. Smile got a serious look on her face. Opening the folder of results, she looked me dead in the eye and said the words I never thought I would hear: "we found something."

Antiphospholipid Antibodies (APA) are a group of antibodies that bind to phospholipids (the molecules that make up cell membranes). Their presence has been associated with recurrent pregnancy loss during the first trimester as well as stillbirth, preterm labor and preeclampsia. You can find more information here. Most recently,  there has been some suggestion that elevated APA could be a cause of unexplained infertility. The issue, though, is that there isn't any good data about this (supposedly there's a paper that refutes this, but I've yet to find a reliable reference, so please let me know if you do!). Still, Dr. Smile believes there's a connection. And with the result that I am weakly positive for one of the antibodies, she believes it warrants a course of action.

So, as of today, Grey and I have a calendar for one final FET during the first week of January 2013. I start BCPs this weekend and am scheduled to begin Lupron at the beginning of December. In addition to PIO and Estrogen, this cycle will be supplemented with baby aspirin and Lovenox. Embryos are scheduled to be transferred from our old clinic to the new one within 3 weeks.

I am completely and utterly terrified. I haven't stopped crying since I received the calendar and am so frightened of all of this failing once again. In addition, I feel like a liar. The guilt of backing off from adoption when we said we were done with this path makes me question myself as a person. I feel like I've been deceiving everyone around me for selfish gains.

Grey is scared too. Holding me the other night, he told me that he wishes he knew the answer to our misery. And then he told me about the dreams he's been having of our daughter. How much he loves holding her, singing to her and watching her play. About how she has whispered her name in his ear. It's that hope of making that dream a reality is giving him the courage to try again. To finally break out of the limbo we've been living in face the pain and possibility of grief all over again.

This is our Jabberwocky. All this fear and doubt.

So tonight, I am confessing the sin of silence in hopes of finding support. This is my call for help. Even now, I'm shaking at the thought of starting meds once again, suffering the side-effects from the treatment and even all that can go wrong. I'm terrified of losing these last two snowbabies, of them dying and leaving our hearts permanently broken.

35 comments:

  1. I knew it! Well I kinda half way knew it. When you mentioned you had a secret, I thought you went ahead with FET and it was successful. I know you are scared and unsure, but I think this is wonderful news and so happy to hear that you guys are going for it. Also a plus, the doctor actually found something that explains your losses and can give you medications this time to help. Oh Cristy I am rooting for you all the way! I hope that you and Grey get this gift.

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  2. Oh, Cristy, I'm rooting for you too! The doctors have a plan this time and medication to give you. I know you're scared but we're here for you!

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  3. I'm so glad you wrote this. And I am so glad you are moving forward with this attempt. I can only imagine what this feels like. The mixture of fear and hope you are both dealing with. But I'm so glad you're doing it. We are here cheering you on through the meds and the craziness.

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  4. You have the strength to get through this! I will certainly keep you in my prayers!!!

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  5. I so SOOOO hope this is the answer you needed to get your positive result. Jay is an angel...she really and truly is....I miss her blogs, but know her work at Fertility Authority is so much more important....you are living proof....I know you are scared. I can empathize. We are HOPEFULLY doing an FET in January/February. I'm terrified it will fail like my previous one. I will be hoping and praying for you...I'm so proud of you and Grey for taking the chance....that double rainbow means something....

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  6. Oh Cristy, my heart goes out to you. Never feel bad about changing course! This is an up and down journey and you are closer today than you've ever been to your little baby. Good luck with the prep. I have so much hope for you and Grey. Hugs.

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  7. Do NOT feel guilty about making a decision that you feel might give you a chance at a take home baby. Never feel guilty about carving out your own future. I for one am so happy you've decided to go ahead and give your last 2 embryos a shot. Dr. Smile seems wonderful. I can imagine how scared you are...RPL does that to us. It makes us scared to hope. So I will hope for you.

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  8. I can only imagine how scared you are Cristy. You definitely don't need to carry the burden of guilt with you as well. It is okay to change your mind. I'll be praying for you that this FET works. hugs.

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  9. Cristy I am just thrilled to hear this news. Never for one second does going for this FET make you selfish or dishonest. You have been given new information and a new protocol! This is an amazing development and those embryos deserve a shot. I am sorry that this is such an emotional rollercoaster for you, but what if it works!? I have been worried about you because I tried to get a hold of you a couple of times, but this explains some of the silence. I can't wait to hear the results!! No guilt, just hope. You hear me?

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  10. You are always allowed to change your mind, one way or another. I'm rooting so much for you guys and your little embryos. This wasn't an easy decision for you, I know that. But to have some answers and a new protocol to go with it is giving new hope that it can work out in the end. That's why we go through it after all. Many hugs as you work through all emotions while preparing for this treatment. It's hard but I know you will get through it.

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  11. I understand how terrified you are to go through this again. But the fact that you're going forward with it despite your fears, to give your embryos a chance at life, shows what an amazing mother you are. It feels as if this was something you had to do, or the what-ifs would have haunted you forever.

    I'm so glad you got a second opinion and that your new RE has been so thorough in her testing. You've got a great plan going forward. Don't worry about feeling confident or hopeful - we'll all carry that for you. And we'll all be here to support you through this. *hugs*

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  12. Taking a new path on this journey is never an easy decision. Sending many many vibes to you as you head in this new direction. Really hoping that this works out for you!

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  13. I know you have been through so much pain and loss but i think it's great that you did the research and are trying again. With this new info, i think you have greatly increased your chances and if you have two embryos left, you may as well try to use them!! GL!

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  14. It sounds like you have in no way rushed into this decision. I absolutely think that if it feels right, it must be the right thing for you to do. I will spend the whole of January with every digit I have crossed for you.

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  15. This is an AWESOME blog and I am SO excited for you! Also - the whole round of testing - I believe anyone undergoing IVF should have this done.

    My AWESOME doctor ordered me a cocktail of tests yesterday after our WTF appointment from our first (and only) IVF failed cycle. I have the list of tests they are doing on my blog, but the APA is one of them. I have no idea IF I'm positive for anything (obviously it's why we are testing! lol) but I am SO BEYOND INSANELY grateful that my doc is doing these tests after only ONE failed cycle instead of making me endure another failure without SOME more information.

    I can totally relate to how terrifying all this is - but I have learned, even after only one devastating failed cycle...all you can do is keep moving forward. I refuse to give up my dream of being a mommy. :)

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  16. Oh Cristy, I am both so excited and anxious for you! Your "confession" is hardly an indication of sin, and it in no way makes you a liar. Each woman/family has her/their own journey. This is another part of yours. I will be hoping and praying for you throughout.

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  17. I agree with the others...it was my first of two thoughts...DO NOT FEEL GUILTY about moving forward/changing decisions!!! How amazing you have some sort of answer as to why! I can't imagine how scary this is for you! I'm rooting for you!! I hope this is it!!

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  18. I'm so glad that they found something that might be causing the problem. I wish you the best of luck and hope that soon you'll be pregnant.

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  19. Cheering you and Grey on as you embark on this adventure. It sounds like your new doc is fabulous and will be doing everything she can to make this work. Relax and enjoy the process -- looking forward to hearing all about it!

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    1. I don't know if I would equate "enjoy and relax" with IVF (or any fertility treatment for that matter), but I do appreciate the sentiment.

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  20. I've told you how I feel about this and I am 100% behind you both in this last attempt. I think you have a great support system here and we will help you through this. Those embies need you to stay strong and we'll throw all the hope we have at them. Many many hugs my friend. Call anytime you need to be talked through things. I'll hope for you.

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  21. Cristy, I am really excited for you. I know it is taking a lot of courage and guts to make this attempt. I am so happy to hear you've found a doctor you trust - that is a huge deal and can definitely make cycling itself more emotionally tolerable (and ultimately, hopefully, successful!). Sending lots of good vibes your way. I'm rooting for you.

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  22. I think this is wonderful - hoping and praying it results in a take home baby!!!! Dr. Smile sounds great.

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  23. I got goosebumps reading your post... and a feeling like this will work for you came over me. I know how hollow those words are.. I kinda cringe when people say similar things to me "I just know things will work out for you"... like they are some kind of fucking clairvoyant. Anyways, I had that sense come over me and I hope, for what it's worth, it's right.

    And minds were made to be changed... don't feel bad.

    Hopefully, 2013 will be a hell of a lot better for both of us. xo

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  24. I understand you're terrified, but how wonderful that you're giving these two little embryos a shot! It sounds like you have a great team and plan in place, and I hope so much for you that this will be it. Hugs.

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  25. Of course it's scary, but anything worth doing is (I try to remind myself). It sounds like your new doc is on top of things, and I have a really good feeling about this!

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  26. I am so thrilled that you are giving this another shot. I wish you could let go of this guilt - no one begrudges you for wanting a biological child! Secretly I think you always knew or at least hoped this would happen. I'm glad you saved those two good embryos for a chance with this new doc and protocol! Good luck with the meds, I know they take a toll on you. Perhaps the silver lining is that you already know what's coming? Hopefully it won't be as bad this time. Love you!

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  27. I am supporting you all the way... please don't feel that you have deceived anyone! Everyone has the right to change their minds and try again, even after they've given up/chosen another path. And the new diagnosis could make ALL THE DIFFERENCE for you! I can only imagine how scared you are, but hang in there and keep the faith. As always, I so admire you for your bravery in the face of something like this. Stay strong - I am sending positive thoughts and prayers your way.

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  28. You have 100% of my support. Please don't feel guilty for wanting to try again, scary as it must be. The heart wants what it wants.
    A new doctor and a new perspective sounds like the right way to go about it.
    ~Keisha~

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  29. I am grateful to Jay for helping you clarify your desires and get started on the journey you are drawn to. And that you have new information to incorporate into your decision-making!

    I can't make your wish come true (I commented after you at Mel's) but I will be here cheering for you from now through January and beyond.

    XOXO

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  30. I had an inkling that your secret might have something to do with your embryos. As I was reading through your post I thought perhaps you did the transfer already. Please, please don't feel guilty about wanting to try again! These are your embryos, and if the thought of destroying them or giving them for research makes you sick, then that means only one thing. Since the whole adoption process is on hold until next year, and the wonderful Jay (BTW thanks for introducing her blog to me last year, she's such a joy to read) and the team at Fertility Authority, the last two embryos deserve a shot. So do your hopes of a biological child. I know this is scary as hell, but you have new weapons in your arsenal this time around. Dr. Smiley sounds wonderful and I'm so happy that she did the tests for you (you've wondered about the issue for along time). Please feel free to post about your progress, we'll be here every step of the way! Lots and lots of hugs!

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  31. I am actually sooooo happy to read this. I knew you had those embies and until you made some decision about them.....you would have never been able to take any next step. I think if I were in your shoes I would do the same thing. I know the emotional investment is huge and it is scary.....but living with the "what if" while your little embies chill for an unknown amount of time would probably be a tough daily dose of emotion and wonder over a longer period of time. I totally support you in this...it doesn't mean you don't value adoption and still consider it an option to build or expand your family;....you are just changing course for awhile and that is totally okay. good luck. Lots of cyber support and hugs coming your way.
    kd

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  32. Well done! I can't imagine how scary this must be so hats off to your courage. Please never feel guilty for a decision, this is your and Grey's life and future and only you two are entitled to an opinion and a choice.
    I wish you guys all the very, very best!

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  33. You should never have to apologize for changing your mind and making a decision that feels right for you and your family. In fact, I applaud your courage to do so and your ability to continue to hope. I agree that a change in doctors and the support team does wonders and am glad that you have found a group that you connect with. I know this won't be an easy journey, but know you've got a lot of support surrounding you.

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  34. Name it. Own it. Conquer it. Mazel tov on this brave and exciting journey ahead of you.

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