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.
Listen Up and then BE HEARD!
3 hours ago