Our Last Losses

Our fourth experience with miscarriage and loss is one you may not think happens as much. It was 2014, two years after we lost John and Cynthia, and the same year I suffered a chemical pregnancy then four months later an eight week miscarriage.

We pivoted our focus off me in late August to our gestational carrier. Our contract was complete and we were ready to transfer two of the four strong embryos from my February retrieval. We drove to Colorado to meet her in person for the first time, feeling more hopeful than we had felt in years. We were changing variables (that we could control) now and trying with someone who had a better pregnancy track record than me. This had to work right?

After an excruciating two week wait, we found out she was pregnant and had every reason to feel as though this time it was actually going to happen. I remember visiting my family in Michigan when our GC was 6 weeks pregnant. We had just found out and I felt lighter and happier than I had in a while. Looking back you can see it on my face in the photos we took that weekend. Then, that Sunday, as we were packing up to drive back to Chicago, we received a text that our GC was experiencing some bleeding. In that one second the weight of our past (and ongoing bad luck) dropped back onto us as we drove home in silence.

We found out shortly after that our GC was experiencing a rare occurrence called Subchorionic bleeding (also known as a subchorionic hematoma) where an accumulation of blood in the uterine wall happens. They say it can begin sometimes from implantation tearing. And if the hematoma (blood clot) gets big enough, it steals all of the blood flow from the babies and they die.

So basically, when we should have only been finding out that our GC was pregnant with twins and hearing heartbeats ... we found out she was pregnant with twins....but that the hematoma was growing and we would likely lose them. Which we did.

Even talking about it now, we can’t believe all of this happened. Every time we picked ourselves back up we would get knocked down even harder. And even though this loss didn’t physically happen to me, it was just as hard, if not worse. We were states away from our GC with even less control... just staring at our phones waiting for updates. Our babies came into this world through us and we were nowhere near them when they left.

As the process moved forward I felt like I was floating. We distantly watched as someone else went through a D&C for our lost babies. And when you have a carrier that miscarries you ofcourse have to pay them for the pregnancy leading up to that point and to have a D&C.  I say that knowing it makes complete sense and they deserve it... but if I‘m being honest, it still feels like another kick to the gut. It did give us comfort that our GC was on her journey to truly help us. And we know she felt the pregnancy joy and loss as hard as we did.  

So I end this pregnancy and infant loss awareness month with our last losses. We lost four pregnancies and six angel babies in total. I still to this day can’t believe it and will grieve the brief joy we had for all of them for the rest of my life. ❤️

Our Story

Last year, through my current job, I had the opportunity to participate in an incredible program at the Experience Institute in Chicago. It’s an after work program set over the course of 6-8 weeks that gives you the inspiration, tools, structure … and confidence to pursue and tease out a personal goal or idea you may have. When I started I knew I wanted to turn my family building pain into some sort of purpose. When I ended the program, I had the foundation set for a blog. This culminated with a storytelling evening where I was able to share a little about our journey to start our family and why I am doing this. I can’t even being to tell you how vulnerable I felt … and I am still shocked I wasn’t crying on the floor like a baby. :) I am proud of myself for doing this program, presenting to a room full of people a very personal story … and continuing over the last year to build and evolve my blog. If you have time, please take a listen to learn more about why I am doing this.

The chicken or the egg?

A lot of people asked me after we lost the twins, why would you try to get pregnant again if the same thing could happen? How would you survive that grief all over again? Well you never shake that fear or PTSD. And in the beginning I didn’t have an answer ... all I knew was that I had to keep moving towards our goal and I would seek out any tools I could to help get me there.

When I went into preterm labor with my twins I was evaluated for a cervical cerclage immediately.  However, since I was having contractions, I was told it was too dangerous and my cervix could rip apart from the stitches. We all know what happened after. I delivered and lost them at nearly 22 weeks. 

Doctors at Northwestern in Chicago really had no definitive explanation for what happened to my body. By the time we all discovered what was happening, my cervix had shortened by nearly half of what it was, my uterus was ballooning (a sign of delivery), and unbeknownst to me, I was having contractions.  They didn’t know which happened first. The pre-term labor (contractions) which caused the shortening. Or the shortening that caused the pre-term labor. I was left with little to no answers and anxiety-filled fears that this could happen to us again. 

Almost a year later I was processing my grief while still desperately trying to get pregnant again through IVF (with no success) when I was introduced to a woman who had just suffered a similar loss. She told me about the TAC (trans abdominal cerclage) and the world renowned Dr. Haney and his team at University of Chicago. Dr. Haney says that the TAC has a greater than 99 percent success rate in preventing pregnancy loss among women with an incompetent cervix. While it’s more invasive (c-section incision) once you are healed you can be a lot more active during your pregnancy (than with a cervical cerclage). Also the TAC is permanent and can sustain multiple pregnancies. Needless to say, we made an appointment immediately to be evaluated and see if I qualified. 

When I met with Dr. Haney (who had reviewed my medical records prior) he said, without a doubt, that I had an incompetent cervix. In his eyes the shortening happened first which caused the pre-term labor. His confidence washed over us as he diagnosed me and told me I was a candidate for the TAC.  

Dr. Haney typically recommends a pre-pregnancy procedure but you can also have it done up to 13 weeks if you’re pregnant. Since I didn’t know if I could even get pregnant again, we decided to wait. And if we were blessed at some point, I would have the surgery in-pregnancy. We left his office with the game plan on how it would work if I got pregnant and  I tucked my new tool away until I (hopefully) needed it.

I had a couple of pregnancies that didn’t make it in the next year, so we then moved on to using a gestational carrier to have our twin girls to term. ❤️ Little did I know, almost 4 years after that appointment, I would be back at Dr. Haney’s with a progressing miracle pregnancy and a TAC  surgery that was needed to get me to term. 

Please look for part 2 next Sunday, where I’ll share more detail around my in-pregnancy TAC experience. I’ll also collect some information and resources to help anyone who may be considering this procedure. 

When His Part is Over

Of all the John Hughes movies I saw growing up, my favorite was one that didn’t gain as much popularity as others; She’s Having a Baby starring Kevin Bacon and Elizabeth McGovern. It’s a mostly funny, sometimes dramatic movie that tracks a couple from their wedding day to having a baby, bringing it all to life through the husband’s panicked point of view.  Not only did I love the movie but I also was a big fan of almost every song on the soundtrack. In fact, it was in this movie that I heard and was incredibly moved by the ethereal tone of Kate Bush as she sang “This Woman’s Work.” Her voice and the lyrics paired with the intense drama of a scene where a seemingly ‘normal’ delivery starts to go awry is enough to make you cry for hours.  I hadn’t thought about this movie scene and song for years … until very recently. And when I revisited it, the power of it all crashed down hard on me in a deeply personal way. Who knew that a few decades later I would identify with this scene and song so differently, but with a tragic ending?  

What moved me to my core was not only the emotion of the scene and the song, but the powerless light it casts on the husband as he is left staring at closed doors knowing his wife is enduring life-threatening complications with her delivery behind them. There was a point, right after my delivery of the twins we lost, when I was unknowingly hemorrhaging. Since I was covered with blankets, the doctors and nurses did not realize what was happening until I got thirsty, lightheaded and began shaking uncontrollably. In that moment my blood pressure dropped so dramatically everyone (including D) was kicked out and I was quickly wheeled into emergency surgery. I will never forget the look on their faces –  my mom’s, my dad’s, and especially D’s – as they rushed me past them on the gurney, through the dark hallway. We were all thinking, hadn’t we been through enough trauma already? Looking back, I am still left speechless over everything that took place and I think a lot about how helpless D must have felt, processing what was happening to both me AND him, but having to stay strong for all of us.  So as I listen to this song again with a new, very personal, perspective, I cry for different reasons. Kate Bush has captured how all of us felt that night, especially D.

It's not me. It’s you.

It was 2013, the year after we lost John and Cynthia. I had received the green light to try to get pregnant again that January, so we dove head first into IVF the minute my cycle allowed.  Our first attempt was going to be a FET (frozen embryo transfer) using one of our remaining embryos from the same batch that created our twin angels.  At this point in our journey, getting pregnant had even more pressures attached to it. At its core, it was still about starting our family as soon as possible, but it was also quickly becoming a lifeline I desperately needed to rescue myself from my PTSD and grief.  And all of this knowing that even if I was able to get pregnant again, there would be all new pressures lurking around the corner that could overwhelm us as I tried to stay pregnant.

Carrying this with me, I remember holding onto any glimmer of hope as I started my injections and pills. I would tell myself things like, “you got pregnant once, so your chances are strong,” or “you’ve been through enough hell already, good karma is coming your way.” But, unfortunately, I was wrong. And once again we found ourselves on the IVF roller coaster as each month rolled into the next and it became evident that my body was struggling.

That year I attempted seven variations of IVF (from FET’s to retrievals/transfers) and one surgery (more another time on that). My husband had urged me several times to slow down and consider finding a new doctor, but I pushed back. I was like an addict that had to get pregnant. Even considering hitting the pregnancy pause button to search for and consult with a new doctor made me sink back into my now all too familiar pattern of grief and panic. That is, until after the thousands of dollars spent, the cattle call fertility center visits, and the repeated agonies of all those two-week-waits, for all the wrong reasons my doctor actually did something that helped us break through our cycle of failures. After respectfully inquiring why, after a cycle that provided us with 15 fertilized eggs, only two had survived through testing, our doctor saw fit to coldly tell me “well, maybe you’re just getting old?” I slumped when she said this, especially given the shared journey I believed she and I had been through together while under her care.  In hindsight, it was precisely the push my husband and I needed to pause, reflect, gather what strength we had left in us and formally break up with her.

Now I realize there was actually a huge shift in our journey with this decision that began to move us towards positivity and hope again. We were able to get in with a new, prominent doctor in Colorado before the end of the year (Dr. Schoolcraft at CCRM). While we were adding travel expenses to our building IVF debt, we told ourselves we would rather spend more for one successful IVF as opposed to bleeding out money for seven unsuccessful like we had just done. Fortunately, our decision was validated the minute we walked through the doors for the clinic orientation and we were treated like human beings. In fact, it was in our meeting with Dr. Schoolcraft that day where he ironically said he wouldn’t have a job if it wasn’t for women my age trying to start their families. It was so refreshing, I could write an entire post about all of the positive differences we experienced. The most important one to note for now, though, is that even though we still had a long road with some setbacks ahead of us … we had 100% success (and stronger IVF results) with every single procedure we attempted with Dr. Schoolcraft.

Have you struggled with whether or not to break up with a doctor before? How did you make the decision? I would love to hear your stories.

Things I Now Know Are True

Immediately after we lost John and Cynthia in 2012 we received an outpouring of calls and cards from our family and friends. Every single one of them touched and humbled us while also giving us strength to move forward. But the most remarkable was a letter I received from one of my closest friends, Jenny. Hard to believe, but she had been through this kind of loss twice before with her sister and her sister-in-law.  What was most profound about the letter she wrote me was how the words came to her. It was almost like she was being guided to write them. I believed it then and I believe it even more now. And if this blog is here to truly help others, I have to share these words forward. I wish I could share them with every person who has lost a child. Here is the letter:

Things I Know Are True

People will say and do stupid things during this time.

• They don’t mean to add to your pain.

• Some will be your closest friends and family.

You will place blame on yourself even though logically you know none of this is your fault.

• Welcome to motherhood!

• No one will be able to tell you any differently.

Everyone who loves you will try their hardest to help you through the waves of pain, loss, regret, anger, blame and sadness.

• They will want you to be better right away for their own comfort.

• These feelings are part of YOUR process. Don’t rush through them or feel pressure to be okay for anyone but yourself.

Your babies will always be your children. You’ll keep their memories in your heart forever.

• You will honor the day of their conceptions, the day of their birth, and you’ll remember them always and forever. In time these memories will be happy ones too.

Your children were blessed to have you both as parents.

• The entire time your babies were with you they felt your love, appreciation and protection.

• This fostered their souls and allowed them to feel safe under your loving care.

• They will now do the same for you.

Hundreds of thousands of parents have gone through experiences similar to yours. Hundreds of thousands of parents will go through this in the future. It’s not their fault.

• Its not your fault either.

• You’re not alone.

You’re stronger than you think you are; you’re stronger still because of this experience.

• You are a remarkable woman.

• You are a nurturing, loving mother.

The First Mourning

I woke up early and it took me a while to realize I was actually awake. I was in our familiar bed but in an unfamiliar room in our new house. I slowly climbed out of my sleepy haze as panic started to spill into the pit of my stomach. The week’s events were flying at me. I put my hand over my belly and the most gutting realization came at me - I was no longer pregnant. My twins were gone. I replayed the events from the hospital. Being told I had to prepare to deliver my babies but they would be too young to survive. Hearing their heartbeats for the last time. Naming, baptizing and holding John and Cynthia until they were gone. Burying them. Then having to move into the home we bought to raise them in. Now we were in that home - and it was empty.

I was always a go-to-bed-early, get-up-early, morning person. But this was the first time in my life when I didn’t want to go to sleep because I knew I had to wake up and remember. Every. Single. Day. People often ask us how did we survive all of this? Well it obviously wasn’t easy but you just do it. You put your feet on the ground every morning and just keep going. Eventually, time starts to insert itself and create enough distance from the rawness that you are able to let hope and possibility seep back in again. After all, at least in our case, we wanted a family of our own more than anything. So we had no choice, we had to keep pushing forward.

How have you continued to push forward when facing the toughest moments of your journey?