July 28, 2014

Dreams, Interrupted

There is something that has been on my heart for quite some time. I have been gaining courage to share what has been bubbling beneath the surface, but I haven't yet. I think part of it is fear. Of what? Fear of sharing a very personal part of our lives. Fear that maybe someone will say something that will hurt my feelings. Fear that maybe no one will read it or respond to it at all. Fear that it's too sad or too raw or not enough and yet too much to share on this blog. But, fear is so overrated. I am tired of fear. This is my place to write and if anyone actually reads it and it helps or inspires even one person, that is enough. Truthfully, though, it really helps me to get the words out. And I think that is what really should be enough reason for me to write.

I want to emphasize that the purpose of this blog was to help heal my broken heart after losing our cherished twin boys. Then, it evolved. It evolved into a way of connecting with others, making friends, and even the unexpected blessing of helping others cope with their own battles. I really miss all of those things that don't necessarily happen when I'm not writing. With that said, this is my journal that I hope to look back on it years and years to come, and you are very much welcome here if you come with a positive, encouraging spirit. And, as we teach our kiddos in school, if you don't have anything nice to say, please don't say it at all.

I didn't want to write this post because I didn't want to have to. I actually began drafting it last year but I kept putting off hitting the publish button for one reason or another. I wanted to have more joyful news to share and I kept waiting and waiting for that to happen. Now I just want to get it out there knowing that when I have good news to share, it will bring me so much joy to do so here. But, for today: I haven't written about our tremendous struggles with infertility. First of all, I hate that word. It's terrible. But it's real and our file that is hundreds of pages thick says that it's something of which we have suffered. I have gained so much hope and comfort from reading about the stories of other women going through similar struggles and I admired them so much for putting their stories out there for the world to see. I'm going to put mine out there in an effort to try something different, and to ask for the prayers of anyone out there who might be reading. I believe, now more than ever, in the power of prayer.

If you are already bored, or this isn't your cup of tea, please stop reading! I won't blame you. ;)

So, it all started with a "baby-to-be"moon. Blissfully married for almost a year, we decided we wanted to take a vacation, become pregnant on said vacation and would return carrying our first child. Easy, right? I went off the pill in July 2010 and we went to The Dominican Republic in August. We thought we had it all planned out. This was our first taste of the saying, "we make plans, God laughs".

We did not become pregnant in August and I went to see my doctor soon after to make sure everything was okay. I've never been a very patient one {actually, I guess four years later, I'm doing alright with that whole patience thing}. After some investigating, my amazing and very proactive OB thought it looked as though I had PCOS and sent us onto a Reproductive Endocrinologist (RE) to be checked out further. After many tests, he confirmed PCOS, which, in a nutshell means I have a lot of eggs in the basket {good news} but my body was not maturing and releasing those eggs each month, or in any sort of reliable fashion. {not so good news} We quickly realized that PCOS is very common and, thankfully, something we could work with. With a little {or sometimes a lot} of help, women with PCOS become pregnant and have babies everyday. We thank God for this.

That fall of 2010 was tough. We knew we had a road ahead of us and didn't know where it would
lead. We could have never imagined what was in store for us. Before starting any treatment, our RE
put me back on birth control which helps calm hyperactive ovaries down. In January 2011, I had a hysterosalpingogram (hsg) to make sure my tubes were clear and that my uterus was not oddly shaped. Tubes were clear, check. Uterus was slightly heart shaped, called an arcuate uterus. We were told it was slight and nothing to be concerned about. More on that later in the story. We were given the clear to start treatment.

We tried one round of clomid and my body didn't respond at all. I was not in the mood to try with any more of that so my doctor moved us on to injectables to help mature an egg and then do an IUI to help boost our chances of becoming pregnant.

Well, we did our first IUI on February 15th, 2011-- the day after Valentine's Day. On March 1st, we found out we were pregnant! Our first IUI! I even remember someone saying to me, "well, that was easy!" Little did we know..On March 14th, TJ's 30 birthday, we found out we were expecting identical twins. One embryo had split and from that moment on, life would never be the same.

As you well know, we lost our precious babies on June 2nd, 2011. I won't go into those details again now, but it was, and continues to be, the most painful experience we have ever lived through.

The only way to try to heal our broken hearts was to keep trying to build our family.  As soon as the doctors and we felt we were ready, we tried again. We did another IUI in August, September, one cancelled cycle in October, November and December. On Christmas morning, we found out we were pregnant with what would be our precious Kate. I maintain to this day that having Kate in our lives for the precious short time we did, allowed her to work wonders on our hearts in a way only she could. I miss her every.second.of.every.day. I wanted so desperately to meet her, to hold her, to bring her home with us. And yet, we lost her late in the first trimester. Heartbreaking.

I should pause here and say we don't know why we lost our twins and our baby girl. Afterwards, we had genetic testing done and our babies were chromosomally normal. This added to our devastation because we did not have answers. I have been tested for everything under the sun and every single test has come back normal. No explanation. So painful. We brought our puppy, Bailey, home as an attempt to bring some joy into our lives. She did.

After losing Kate, we were every bit as determined to try again. This time, our doctor wanted us to try IVF. We agreed it was time and had high hopes it would be successful. Well, on Friday, April 13th, 2012 we had our first egg retrieval. I woke up from the procedure to learn my doctor retrieved 11 eggs. I cried and cried because I didn't think that would be enough. We held out hope until we received the call the next morning with our fertilization report. We were hopeful we had some embryos that had fertilized and were growing. We received a very unpleasant phone call from our doctor who broke the news to us that we had complete fertilization failure. None, Zilch. A complete failure. My doctor, who at that point had earned the name "Dr. Doom and Gloom" told us he wasn't sure IVF would work for us, and that maybe there was something going on with my eggs that was causing this. Cue the panic attack. No one has once told me we wouldn't be able to have children and had we not already been pregnant, I believe we might have heard a different story. So, that was emotionally, physically, not to mention financially, draining.

To our surprise, Dr. Doom wanted us to get back to where we had began and try the IUI route again. So, try again we did. We tried an IUI in June and became pregnant, only to face heartbreak days later as my levels began to drop. We decided to do one more IUI in July and we received a late surprise that it, too, had worked. Thank God! We called that little one our little Fighter. He or she just kept sticking around and even through an early bleeding scare, which I was sure I was miscarrying, we found out it was implantation bleeding. I went on bed rest for a few days and it stopped. Sadly, a week later our fears were confirmed when we found out our little fighter was no longer developing. And, at that, I'd had enough. I could not go back to our clinic because we just had too many sad memories there and I couldn't stand my doctor's approach and bedside manner. He is a very talented physician and has helped us in many ways, but it was time to break up.

So, we finally left. We switched to the clinic down the street to a doctor who is nationally recognized for his work. He ran some more tests including an "advanced recurrent pregnancy loss panel" and, no surprise here, all tests came back normal. I guess I should celebrate the fact that nothing turned up on these tests, but in a way it made it harder, because it left us still without any answers and even more questions. This doctor, after taking a break for four or five months, wanted us to move ahead with IVF again. He could not understand why we had complete fertilization failure last time at the other clinic and wanted to see for himself. So, prior to getting started with IVF, I had a trial transfer done to make sure everything was all clear. It turned out there was still some retained pregnancy tissue from our last miscarriage months earlier and I was scheduled for a D&C. When I woke up from surgery, my doctor excitedly held my hand and told me, "I found a septum in your uterus. I removed it. This may explain what happened with the twins." All I heard was "may be what happened with the twins" and I immediately started crying. Up until this point, I've never had anyone tell me anything like that. What was called an "arcuate uterus" before, actually turned out to be a "sub-septate" uterus. While the septum was small, it actually is a very big deal that it was there. I'm obviously not a doctor so I won't get into all of the details and implications, but know that septums can be responsible for recurrent pregnancy loss. Let it also be said that we will never know for sure if it was what caused us to lose our babies.

We decided to go ahead with IVF, but we knew we'd pursue a frozen embryo transfer to allow my body to heal from surgery for a few months. We could still proceed with the retrieval portion of IVF, and wait on the transfer part. We went ALL out for this retrieval, so as not to have complete failure as we did in 2012. Unsure as to if IVF would work for us, we pulled out all the stops. Every option, we added it. Our doctor put us on a different medication protocol and we were hopeful. I woke up from the retrieval to hear my doctor give me news I couldn't imagine: They had retrieved 33 eggs! Last time, they had retrieved 11. (I know more is not always better but we were all happy with this number). Then, the wait began. It would be 24 hours before we heard the fertilization report. How many of those eggs had been successfully fertilized and became embryos? Last time the number was 0. This time, the number was 22. 22! This was a huge milestone for us because it showed us that my body could do it, that IVF was a possibility and that something we had done had worked. We knew we weren't going to go ahead with a fresh transfer so we waited and received the report day after day that many of our embryos were still growing. To spare you some of the specifics, we were ecstatic to have 5 perfect embryos at day 5 and 6. In our mind, we were thrilled to think that all five of those embryos would grow to be our babies that we'd bring home from the hospital. It was such a gift and we felt like everything we'd been through had led us to this point.

In March 2013 we transferred one embryo. It didn't take. We were devastated. In May we did another IUI. It didn't work. In July we transferred another embryo. It didn't take. We were devastated. In September we transferred two embryos. They didn't take. We were devastated. Going through the IVF process is different than the IUI process in many ways. An embryo is already created, and in our beliefs, a life is already created. Therefore, a grieving process occurred after each failed transfer. If you're doing the math, then you realize that we have one remaining embryo of those precious five created. We haven't transferred that one (yet) because we have a lot to figure out as far as to why it didn't work with the first four. We were, once again, emotionally drained. I don't want to focus too much on the financial aspect of all of this, because while it has been a big strain on us we are fortunate to even be in a position to try these expensive treatments without any help from insurance. And, there is just nothing, and I mean simply nothing, that would stop us from trying to make this work.  Physically, though, anyone who has gone through IVF knows what a toll it takes on your body. Going through it three times in one year was a lot.

Then, we moved to New York. A fresh start. Soon after getting here, we jumped into a new clinic which we were not so impressed with, by the way. We tried two IUIs there and while they didn't work, we came to some important realizations as a result. My new acupuncturist whom I have been seeing weekly since December, helped us realize that my body has been through so much in the past {almost} four years. I have not allowed it to heal, to break. In fact the words came out of my mouth " no, no we don't take breaks. We just keep trying. " She helped me see that taking a break from the hormones, the clinics, and ALL of the stresses involved in both would help us tremendously in long run. We have been so focused on becoming pregnant that so many other things have taken a backseat. The greatest gift we've given ourselves in 2014 is the gift of a rest. We have spent our time focused on being healthy, enjoying one another, exploring our new city, and really just being right where we are on our journey. I have become empowered, and for the first time in years we are trusting ourselves and my body to know what's right for our family. It wasn't really a choice. It was the thing we didn't know we needed to do.

So, that is where we are today. It's real and it's not pretty but it is such a huge part of our lives that I felt it was important to include in my little blog space. Though it has been such a struggle, my husband and I are trying to overcome it in all of the ways we know how, and even some ways that we're not aware of yet, I'm sure. Faith plays the largest role in all of this. Without it, I'd fall to pieces. I ask for patience, for endurance to keep climbing, for hope, and for the ability to find joy in our everyday lives. We are very fortunate to have a circle of people who love us and support us and who follow our journey even though they may not have gone through something similar themselves. Along the way, we've seen glimpses of hope and reminders to hang in there. This is not where either of us ever imagined we'd be, but we also understand that our story isn't finished.

If you find yourself in the midst of infertility, I'm so, so sorry. I get it. It's awful. If you've lost a baby, at any stage, my heart aches for you. It's something no one should have to endure, and yet so many do. Maybe your story is like mine, and you're struggling with both. Or, maybe you are experiencing life after infertility. Maybe you've gone on to successfully build your family after months or years of trying. Maybe you've not gone through any of it yourself but I'll bet someone you love has. You might not know what to say to them or how to support them. Whatever it is,  please share your story with me. And, thank you for reading mine.

"God can do anything, you know. Far more than you could ever imagine or guess or request in your wildest dreams."


Annie said...

Oh friend, you are so brave for putting this out there in YOUR blog space! Sadly I know too many gals our age that have had to deal with that ugly word infertility. Some are still going through it, some have been fortunate enough to have had a child. I know from the bottom of my heart that you all will overcome this. You two are strong cookies and will power through, despite the heartache, tears and sadness that you have been through. I cannot imagine. xoxo

Anonymous said...

Thank you for sharing your incredible story on your blog. As your friend, I imagine that it was a big step to share the journey with the world. Although we miss you in the Carolinas, I have seen the period of rest that you've given to yourselves since last Fall through your blog and FB. Your pets, your restaurant choices, your nail polish fun, and your shopping have helped me know that you are enjoying life in The Big Apple. Even the name of your blog points toward a positive and healthy mindset. You have discovered so many sparks that are igniting all sorts of healing while pouring grace into all the broken crevices. I also know, that as believers in Jesus, we can follow Him as He gives light for each day. I love John 8:12 which has been a focus for me this summer: "Then Jesus spoke to them again, saying, "I am the light of the world. He who follows me shall not walk in darkness, but have the light of life." What I love about your story, is that you have followed Jesus and He has continued to give light. Light to illuminate direction for your life and to allow you to rise from the shadows when darkness tried to take its grip. I know that God must be well pleased with how you have trusted Him to orchestrate all of the details. I will pray that you will continue to follow Him, and in doing so, He will light your path allowing you to see his perfect plan for the future. You have encouraged me today. Again, thank you for sharing your story, my friend. Love, Lisa M.

Anonymous said...

Margot, Thank you so much for sharing your story. You are amazing and brave and strong. This was something that I really needed to read right now in my life. Thanks again for sharing.

Rachel said...

How brave and beautiful of you to share your story, Margot! I pray that this time of rest is exactly what your bodies and hearts need.

Jess at Just Rainbows and Butterflies said...

You are not alone and my heart aches for you. So many of my friends have this same story and the questions that are left unanswered are so painful sometimes. Thank you for sharing your story and I'll be praying that God shows you how your story can and is affecting others.

lesliemcguire said...

Margot, wow, what a long road this has been for you all. I can not imagine the pain and heartache. I know God has a great plan for you and your family! Continued prayers for you all.

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