What Is

by Kathy on January 24, 2011 · 8 comments

in Abby, Bob, Decisions, Frozen Embryos, Hope, Molly, The Future, Transitions

It has been a very emotional week for me for a variety of reasons. I will likely post about some of the reasons here in the days to come, but for now I want to share about just one of them. I got a call this morning from the director of the stem cell research laboratory at the university where we have agreed to donate our three remaining frozen embryos. He needed to confirm “one last time” verbally over the phone that I understood what we were agreeing too and didn’t have any more questions. I was feeling very emotional inside, but did my best to keep it together during our conversation and succeeded. I managed to refrain from breaking down until I hung up the phone. Then I gave Bob a ring to give him a heads up that he was up next. The Dr. said that he needed to get the okay verbally from both parties involved and thus would need to speak with my husband as well before they could more forward with the process to formally request the embryos be transferred to his lab.

The Dr. had finally received the paperwork that we had signed and submitted last June to the fertility clinic that we did our Assisted Reproductive Technology (ART) cycles with in 2007. I haven’t blogged much about our choice to donate our three frozen embryos as it was a very difficult decision for us, one that we did not take lightly and wasn’t looking to invite anyone elses opinions or feedback on subject. That said going through with this will officially put an end to this chapter of our life. We are committed to being done with ART. We struggled with what to do with our frozen embryos after our daughter Molly’s birth and death in April 2008. As you may recall, Molly grew from one of the four frozen embryos that were created during our two unsuccessful fresh IVF cycles in 2007. She was the first frozen embryo that we decided to try to sustain a pregnancy with after our first three failed ART cycles.

Our initial intention, after Molly’s death was to finish what we started and try again with our three frozen embryos in late 2009 or early 2010. However we were encouraged and welcomed the opportunity to take a break (from ART cycles) in 2008 after everything we had been through emotionally and all that I had experienced physically after our pregnancy with Molly. We decided after our journey with Molly that we did not want to ever do another fresh IVF cycle. However, we felt a great sense of responsibility to give our frozen embryos a chance at life, to possibility implant, grow and develop inside of me someday.

Meanwhile, we had been told that after a four or five months of giving my body and mind time to recover from my pregnancy and c-section to deliver Molly, that it would be okay to try on our own to conceive again or at least to be open to life. We found that ironic after all we had been through dealing with secondary infertility and pregnancy loss over the previous four years. We really didn’t think it was possible, especially because our Reproductive Endocrinologist had given us a 1 – 2 % chance of conceiving on our own when we first consulted with him in February 2007. However, we never gave up hope that it was possible to conceive and sustain another pregnancy on our own and chose not to use protection or try to avoid conception starting in the Fall of 2008.

Miraculously we somehow managed to conceive again in late December 2008 which amazingly brought our third child, our second daughter, Abigail to us with a healthy heart and safely into the world in September 2009. Though in our heads and hearts I guess we knew that it was technically possible to conceive and sustain another pregnancy on our own, we were genuinely surprised when it happened. As I shared here extensively throughout our pregnancy with Abby, it was a scary and uncertain time for us. I know that is very common for a subsequent pregnancy after a loss, regardless of if the cause of the baby’s death was accidental or due to congenital abnormalities.

Early on after Abby was born we tabled the discussion of what to do with our three remaining frozen embryos. However we did decide almost immediately that we did not want to allow for the possibility to conceive again on our own again (if at all) until we had made that decision, even though we still believed it was highly unlikely that it would or could happen. We knew that we would need to decide if we wanted to try to use the frozen embryos or not eventually, but we were overwhelmed (in a good way) with the new member of our family and it was not the time to broach that subject. I was nursing Abby on demand and knew that it was a fairly reliable form of birth control, as well as the fact that in those early month post-partum with the sleep deprivation and all I didn’t have much interest or energy to have sex.

Abby did not sleep through the night until she was 8 months old and my first post-partum period didn’t return until around the time of her first birthday. So we had some time to work through our thoughts and feelings regarding the future of our family and whether or not it made sense to us to try to expand any further. In early 2010 I contacted our fertility clinic to inquire about our options with the frozen embryos were we to choose not to try to use them ourselves. I found out that we could donate them to the fertility clinic for them to essentially practice with or they could discard them. Another option was to donate them for stem cell research to a highly acclaimed Midwest university that they work with. The last option was to give our embryos to another couple who would adopt and try to use them.

I did a lot of research about each of the options and Bob and I spent a lot of time thinking, discussing and soul searching about which made the most sense to us. As I shared in my Omega and Alpha post around this time last year, we even met with a pediatric geneticist to get her medical opinion in regards to the odds of whether any of our remaining embryos might develop congenital heart defects, like Molly had, if we were to go forward with trying to use them ourselves (or donate them to another couple). She advised us against both using the frozen embryos and/or trying again to conceive on our own, as she believes that what Molly had could have been genetically passed on to her through either a dominant or recessive gene that Bob and/or I are carriers of. Knowing that her autopsy found no chromosomal abnormalities, the pediatric geneticist agreed there was really know way to know what factors contributed to Molly’s congenital heart defects, however she felt strongly that it was more likely to have been genetic, than “one off.”

So we decided that it didn’t make sense for us to take the chance of sustaining another pregnancy with a child who could have anywhere near the congenital abnormalities that Molly did by trying again with using our frozen embryos and made a soft decision to not try to have any more children on our own. We thought it would just be too much for us emotionally, for me physically and also for the potential baby(s) in question, not mention how devastating it could be for our two living children (one of whom had already lived through losing a sibling). Likewise, it then did not make sense to us to pass that chance of a pregnancy/baby with severe congenital heart defects on to another person or couple for embryo adoption, who likely had already been through a lot physically and emotionally on their journey to build their family.

Though we appreciated the option to offer our embryos to our fertility clinic to practice in hopes of getting that much better at the processes and procedures that allow them to be successful in helping other couples conceive and sustain pregnancies who otherwise might be unable, we did not decide to do that. In the end we were most comfortable with the choice to donate them for stem cell research, as we believe it gives the best opportunity for “good” to come from their creation and existence, other than our trying to use them ourselves to expand our family and finish what we started years ago when we allowed them to be created and cryopreserved for the future.

Part of what made this stage of our journey, deciding the fate of our frozen embryos, yet another emotional roller coaster was that we first requested the paperwork in consideration of donating them for stem cell research in March 2010. We read the paperwork, did more research and finally made the decision to donate them in June. We invited good friends over for dinner one night, one of whom is a notary and they witnessed and notarized Bob and my signing the paperwork to donate our frozen embryos. Shortly thereafter I sent the paperwork in to our fertility clinic and though it was a very emotional time for me back then to wrap up another chapter in our life and on our journey trying to expand our family, I worked it through and thought we were done. The decision had been made. The paperwork had been submitted. End of story, at least I thought so.

I touched base in August 2010 to “confirm” that the paperwork had been received and to ask if our embryos had been transferred to the university for stem cell research. I found out at that time that the fertility clinic’s main office had flooded that summer and they were having some issues administratively as a result, which include them being backlogged on lots of paperwork, including what we had submitted to donate our frozen embryos for stem cell research. I spoke with a number of staff members at the clinic including the director of the embryology lab numerous times in the days and months to come. I just wanted to move on and be done with this. I also ended up talking with the director of the stem cell research program at the university where we wanted to donate them a few times, as well as having extensive discussions with his assistant.

As it turns out there was more to the process than just our signing the papers and having them notarized. We needed to talk with the director of the lab to make sure we understood what we were doing and didn’t have any more questions about the process and how our embryos might be used in the future for their research. When I realized this, combined with the hold up with our paperwork at our fertility clinic, I tried very hard not to see this as a “sign” that we should reconsider our decision and maybe try to use the frozen embryos ourselves after all. I did even more research about our options and revisited all the reasons we made our decision back in June. Ultimately Bob and I recommitted to our decision to donate our three frozen embryos to stem cell research this Fall. We were told we would hear definitively when it was time to transfer them from our clinic to the lab.

Many more months passed and we did not hear from either our fertility clinic or the university’s research lab. I often wondered what was happening, but was busy with the holidays, parenting, our life in general and didn’t have it in me to check in during that time. Though I wanted this all to just be over, I also wasn’t feeling up to rehashing it all again, if that was what might happen. So I had resigned myself to wait and see. I probably would have picked up the phone sometime soon if I hadn’t gotten the call this morning.

I wasn’t expecting to hear from the director of the university’s stem cell research program this morning. When I woke up I didn’t realize that today would be the day that I would finally be saying goodbye to our three frozen embryos, to the time and the love that went into their creation and the hope that their mere existence represented to the future of our family. I don’t believe that anybody really grasps that in the early stages of infertility treatments and ART cycles. So here we are, wrapping up another chapter in our life and the story of our family.

I feel blessed and grateful that we had the resources and the opportunity to use ART to try to expand our family when we (especially I) so desperately wanted to have another child. I also feel sad that things didn’t turn out differently. I wish that Molly had been healthy and born into this world under other circumstances. I wish that she could have come home with us and gotten to live her life here on this Earth a lot longer, instead of getting an express train ticket to Heaven. I wish that we had more optimism and confidence that our frozen embryos if we tried to use them might implant and develop into healthy babies and sustainable pregnancies, thus adding more wonder and life to our amazing family.

That said, I understand that we (and I) can go crazy entertaining thoughts of the “what ifs” and need to do my best to live with, honor and appreciate “what is.” “What is” in my life now includes the incredible blessing that is my dear husband Bob, who loves me in spite so many of my neuroses that I have developed on this journey to make sense of how our family has come to be. “What is” in my life now also includes my two beautiful, intelligent, quirky living children who love me unconditionally and another very special child who I believe is watching over all of us from Heaven. “What is” in my life now are so many awseome friends and family members who have supported, encouraged, cared and prayed for us all these years that we struggled with secondary infertility and pregnancy loss, as well as new friends that I am meeting and developing relationships with. “What is” in my life now are a wide range of opportunities to go forward with all that I have learned from our journey trying to build our family and to hopefully be able to help others who find their paths to have children not going as they hoped or expected they would.

Thank you for reading, for your thoughts and prayers, for abiding with me and for helping me to continue to process and make sense of my experiences on our road to become Four of a Kind with our Queen of Hearts in Heaven. I hope that wherever this post finds you today that you are able to move from focusing so much on life’s “what ifs” to making the most of “what is” in your life and family.

{ 8 comments… read them below or add one }

1 Jess January 24, 2011 at 12:42 pm

What a big big decision! I think it's foolish for ANYONE to judge other people's embryo decisions, let alone people who have not been there…but of course that's the reflex of anyone, so it's good you made the decision somewhat quietly imo.

Onward, Christian soldier. 🙂

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2 loribeth January 24, 2011 at 2:04 pm

You obviously put a great deal of careful thought into this decision. Whatever you decided, it was not going to be easy, I'm sure. And your message about moving on from the "what ifs" to "what is" is a good one for many of us to adopt, I think! (((HUGS)))

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3 Beautiful Mess January 24, 2011 at 9:41 pm

Oh sweetie! I think you made the right decision because it felt right to you and your husband. I can't imagine all the emotions you were feeling while on the phone and when making this decision, but you did what's best. That, my friend, is something to feel very proud of. Good for you, hon.
*HUGS*

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4 Mattie January 25, 2011 at 3:54 pm

I just wanted to send you big (((HUGS)))!

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5 Knock knock - it's cancer! January 29, 2011 at 11:33 pm

Oh wow, you have an incredibly inspiring blog here – I added you to my blogroll.

It is never easy making these types of choices. I am positive you did what is right for you and your family.

I am glad you are taking the time to write and share this, it is an amazingly touching story. (I've been reading trying to catch up and familiarize myself)

All good thoughts to you,

Michelle

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6 Kathy February 25, 2011 at 8:05 pm

Jess – Yes, it is/was a big decision and I appreciate your thoughts and kind words. 🙂

Loribeth – Thank you for your comment, encouragement and hugs. I am glad that you liked the idea of trying to move from asking what if towards appreciating what is. 🙂

Beuatiful Mess – Thank you for your support and validation. That means a lot to me. 🙂

Mattie – Thank you for the big hugs! I can always use them, but especially at times like this. 🙂

Michelle – Thank you so much for your kind words, for adding me to your blogroll and a very belated welcome to my blog! As you know, we have been communicating a lot lately and so it was interesting for me to come back and read one of the first comments you left for me.

I am so grateful that you found me and my blog and that our journies somehow managed to intersect at this particular time in both of our lives. You and your blog are such an inspiration to me and I am humbled that you feel the same about me and my blog. 🙂

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7 Esperanza December 6, 2011 at 3:12 pm

I'm here (again) from the Time Warp. I don't know what I didn't comment on this when I first read it. I must not have known what to say. I still don't. I can't imagine how hard it was to make all these decisions and come to a place of peace. I really can't imagine it. I'm very impressed by all the work you've done, with your husband, to figure out what is best for you. I wish you didn't have to make all these difficult decisions but I'm glad you feel confident in your choice.

Thank you for sharing this again. I can understand that it was very hard to put yourself out there and explain the choice you made regarding your embryos. I'm sure it helped others who are walking a similar path and when our blogs can help people that feels like an extra blessing.

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8 jjiraffe December 6, 2011 at 7:18 pm

What a brave and sad and thoughtful post. I can imagine how difficult it must have been to make this decision, but I can feel the certainty and peace that came from thinking this out so thoughtfully, carefully and thoroughly.

I must echo Esperanza here and say that I know that you have helped others with this post and I can tell from the comments that indeed you also inspired people. Which I think is the best we can do as bloggers!

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