Going Home with Only One: Loss when pregnant with multiples.

Today’s guest post is from Darla by way of her blog, Ten Times As Long. In it, she reflects on fears surrounding her twin pregnancy when she knows she’ll only be taking one of her daughters home. This post contains themes of loss as well as ultrasound and pregnancy photos. Thank you Darla, for letting us share your post with our community.

Friday, August 26, 2016

Fearful

(Warning: this post may get a little heavy at times, but these are the realities we’re facing.)

With only about two months to go until D-Day, it’s really starting to sink in that we’re going to be having our baby girls soon. And that we will only be bringing one of them home with us.

And y’all, I am so scared.

Not just about labor, although I have enough mom friends to be more than a little freaked out about labor and all the postpartum goodness that goes on. I’m full of so many other fears. So in an effort to alleviate some of those fears, or at least ease my mind a bit, I’m going to spell them all out here. Fully recognizing how irrational many of them are.

  • I have 8 weeks of pregnancy left, give or take. It took only about two hours for my entire world to fall apart when we found out about Cate, so 8 weeks is an eternity on that timeline, and I’m terrified that something will happen to Olivia during that eternity. My biggest fear, for whatever reason, is her getting tangled in her cord.

    olivia

    Olivia

  • I’m scared of being pregnant forever. Not literally, obviously, but longer than traditional “full term.” Not because I’m uncomfortable or TOBP (an acronym my doctor used: Tired of Being Pregnant). But because the longer I’m pregnant, the longer I’m literally carrying the weight of my dead child. Not only is there this mental weight that I’m carrying, but there’s a physical one, too, and it feels like it’s impossible to move through the grief while I’m still carrying that weight.
  • I’m scared of not being pregnant long enough. I know right now that Olivia would be in relatively good shape no matter when she comes, and really my fear isn’t about pre-term labor. It’s about saying goodbye to Cate’s physical form. I’m terrified of the moment Peter and I have to say that we’re ready to say goodbye and that they can take her from us.
  • Before we even get there, though, I’m really afraid of the what-ifs regarding Cate’s delivery in particular. Olivia’s will go as normally as a routine delivery can go. But Cate? No one can give me an answer. We don’t know how she’ll come out, no one can give us an answer on what she’ll look like. Will we even be able to hold her? Get her little hand and footprints? Will she even have hands or feet? What about her sweet face? I need something to remember her by, and while I’m sure every doctor we’ve talked to is sympathetic toward our wishes, they just can’t say for certain that we’ll get that. And it’s devastating.

    Cate.

    Cate.

  • The fear of holding my baby girl is overwhelming sometimes. Which makes me feel terrible. But I have no idea how I’m going to feel, how she’s going to look, how I’m going to react to her. So many feels, and I’m so scared that I’m just going to fall apart right when my girls need me the most.
  • Going home? With only one baby, when we were planning for two for so long? How am I going to handle this? I still walk into the nursery sometimes and think about how there should be TWO cribs in there, TWO names on the wall, TWO sets of clothes. And now we’ll have to take ONE baby out to the car in ONE carrier and put her into ONE crib that night.

    At 31 weeks.

    At 31 weeks.

  • I’m afraid this is always going to hurt. And not in the time will make it less painful way, but in the full-on, can’t catch my breath, heart breaking because Peter just asked me “why us,” feel like I’m going to fall apart way. Because I don’t know why us, and I never will. And not knowing makes it that much harder to move through this and get to the other side of the gut-wrenching pain and into the dull ache because my heart is missing a piece.
  • What if that hurt turns into full-blown PPD? I’m already at increased risk because of my general depression and anxiety. Losing part of a pregnancy only increases that risk. I’ve already requested that Peter and my mother be on close watch, as well as my therapist, but I’m so scared for myself, for Olivia, for my marriage, for everything.
  • I’m terrified that people will forget Cate. Olivia is going to bring such joy to our family, and I know we’ll all be so focused on her and on loving her. But what about Cate? She needs love, too, even though she won’t be here on earth with us. I’m scared that, as time goes on, people will forget she ever existed, and I can’t stomach that. I need to remember her, I need everyone to remember her, because she was real and was here and will always be a part of our family.

I have so much anxiety going into these last two months that it’s almost stifling at times. I feel like I can’t catch my breath, and when I do catch it and I feel normal for half a second, I feel guilty for feeling normal when none of this is normal. Peter and I met with a hospital nurse in charge of “special deliveries” earlier this week, and every time I looked over at my husband, I thought to myself, “We’re just babies ourselves; we shouldn’t be discussing burying our baby.”

To those of you who have dealt with me during these times, thank you. Thank you for the distractions, thank you for the loving messages, thank you for talking about our girls and remembering that Peter and I are the parents of two beautiful little babies. Thank you for reassuring me. Thank you for letting me talk, vent, cry, talk about morbid things like funeral arrangements with you. You are all such wonderful people, and I know our girls can feel your love all around them.

Darla began her blog, Ten Times As Long, back in 2012 as a way to cope with the sudden surge of anxiety and depression that had plagued her since high school. She found that writing about her experiences and emotions in a way that is raw, unfiltered was her way of facing her problems head-on. The blog has followed her through unemployment, marriage, infertility, pregnancy, and now pregnancy loss. As Suzanne Collins wrote in the third installment of her Hunger Games series, Mockingjay, “It takes ten times as long to put yourself back together as it does to fall apart.” This blog is Darla’s way of putting herself back together, piece by piece.

 

 

#startasking What did my infertility teach me about parenting? – Marissa’s perspective

We love infertility lists, and this is an incredible one! It comes to us by way of Marissa, an ART of Infertility participant and collaborator. Thank you, Marissa, for sharing your story with us.

Elizabeth

5 Things Infertility Taught Me About Parenting

This is a post I never imagined I might write . . . After fifteen assisted cycles (7 IUI & 8 IVF), two surgeries, three failed attempts to adopt, and a cautious pregnancy, my husband and I welcomed our first son earlier this year. Only then did I begin to allow myself to consider not only what it would feel like to have a child but also to become a parent.

I am absolutely certain that I am different as a parent because of my infertility experience and changed as a member of the infertility community because I am parenting. I am as certain that I could have never imagined the growing gratitude that I would now feel for our infertility journey! These are (the top!) five things infertility taught me about parenting:

1. You Are Not In Control (And That’s Totally OK!)

Being out of control was one of the most frightening aspects of infertility for me—being carefully in-control was my go-to response for everything new and scary. Getting a PhD, no problem! Moving cross-country four times in my twenties, I can do that! IVF, bring it on! My mom came with us to my first RE appointment and took a picture of me standing outside of the office to save for our baby book. A year later my husband hid the empty little book with the single photo after I’d thrown it across the room in a mixed-up burst of mad sadness. I hated how happy I looked before I knew the storm that was brewing. I hated that there was nothing I could do guarantee that I would become a parent. I hated that I couldn’t change my body and how it worked (or didn’t). I’d changed so many aspects of my life (my home, my job, my diet, my lifestyle) in attempts that felt naïve and futile. I felt cursed, and I wondered if I had done something to cause this awful burden.

Infertility crushed not only my dreams of what my life would be like but also my usual ways of making sense of the world. Before infertility, I expected that hard work produced results. After years, failures, losses, and mounting costs, I began to seriously doubt my life beliefs. I became clinically depressed. I developed anxiety. I fought accepting that effort did not equate outcome. I had to be forced to let go. I grieved the sense of order that had previously shaped how I saw not only my life, but also how I saw others’ lives. As a teacher, this was especially devastating. It was a double blow: I lost my vision of my future family and my purpose in my career. I struggled to differentiate between what I could control and what I could not. With the help of a thoughtful therapist (who was also an infertility survivor), I found I could not control outcomes but could control my responses. Each week, in a sketchbook, I would draw my plan of action—my mantras for the week, the cycle, the loss, heck— even the hour on very bad days. And I had a lot of very bad days. Days when I cried in my classroom in front of my students. Days when I felt like it took effort for me to breathe. But, a few days (or hours) were not so bad. I began to find strength and purpose through connecting with others. Instead of focusing inward on my own pain and fears, I began to focus outward into the infertility community, in my support group, and on events like RESOLVE’s Advocacy Day. I began, once again, to see positive outcomes from my actions.

Participating in the infertility community restored my faith in myself and in what I might accomplish. I might not be able to will myself to become a parent but I could use my voice to speak about my experiences, create art that responded to my emotions, and advocate for others to have the right to pursue their own dreams of a family.

Giving up some control opened me to experiences I could not envision. It re-energized my teaching, and helped me to see my students with greater empathy. It forced me to focus my attention on the present, and to act proactively without immediate gratification. Of course, now it is easy for me to see how absolutely essential these lessons are for the experience of being a new parent. Trying to control is a natural response for many people to new and scary experiences, like parenting! While my impulse is still to control, I have learned to be content with doing the best I possibly can at any given moment. While I still hope for certain outcomes, I don’t punish myself if things don’t go the way that I expect. Even more so, I have encountered the most wonderful surprises that I might have missed had I continued to live in such a rigid way! There seem to be thousands of books focused on parenting and baby care—particularly sleep—that promise ‘results’ within strict structures. There are so many mixed messages, and so much pressure. It is a familiar feeling for me, but my perspective has seismically shifted. Instead of trying to control and living constantly with the image of a perfect future, I am working to focus upon enjoying the current ride.

2. Your Child Is Not You

Early on in our infertility experience, when we began to pursue domestic infant adoption (which was not successful for us), I had to face the idea that my becoming a parent might not involve my own or my husband’s DNA. Even after a career that involved working with vulnerable populations of young children in which I contemplated adoption frequently before experiencing infertility, I had taken for granted that when I chose to have children, my genetics would be part of the equation. I had to admit to myself that part of my vision of my future family included children who might resemble us in appearance and in interests. Beyond these worries and fears, we faced the loss of control (see #1) over our potential future child’s earliest start in life. When we were cycling, I spent so much effort trying to control every aspect of my own body in preparation for pregnancy—I changed my diet, gave up caffeine and alcohol, did yoga and acupuncture (even though I still HATE needles even after the hundreds of shots I’ve given myself). I even ate the pineapple (you must know what I mean!) When we faced our first adoption situation, all of that changed. The expectant mother was seven months along, and had no prenatal care. She was denying her pregnancy and was using drugs and alcohol. Within the 24 hours we had to make our decision, we embraced the possibility that our child might be nothing like us. We had no idea who they would or could be. We took the plunge. And we were crushed when the expectant mom texted us that she had chosen to parent her child.

We knew then that we would love the child who joined our family, no matter who they might be (or become). I had always said I would feel that way when I was asked. And when you are pursuing adoption you are asked a lot if you could love ‘someone else’s child.’ Even though I always answered yes without hesitation, I was still afraid there might be a difference for me. A difference of expectations. A difference of fear.

Once I had grieved that difference and confronted those fears, I began to see a new possibility: That I could never know who my child would be.

That I would learn who they would be as they became themselves. Worries have turned to delight for me as I watch my son discover his own capabilities and interests. He has challenged me to accept him as himself and not as my vision of who my child should be. Because of this, I can choose to respond to my son with love and with support, a practice that I strive to maintain each day.

 3. All Seasons Of Life Both Grow And Strain Relationships

Infertility affected every single one of my relationships: My family, friends, my husband, and my work. Infertility is generational: I felt as devastated that my parents would not become grandparents as I did that I would never parent. Like many infertility patients, I started trying for a family when my friends did. My Facebook and Instagram feeds became minefields. I quietly unfollowed almost everyone I knew (or at least it felt that way) when the daily deluge of pregnancy announcements and baby pictures suffocated me. I even temporarily left my infertility support group when it became clear that I would be the last member without a child. It had transitioned to a new mom’s group and I felt left behind. I was too jaded to join a new group to be the living reminder of the worst-case scenario. Who does 8 IVF? Who ‘fails’ at adoption? Even our therapist cautioned it might be time to ‘move forward.’ As friends’ babies grew into toddlers and preschoolers, I bought birthday gifts through full body sobs at children’s stores. I wanted so much more from those around me. I wanted support, I wanted acknowledgment. I wanted care. But I was in an ugly place. I couldn’t even remember what my life had been like before when I still felt possibility.

But, there were a few high points: When we went public with our online adoption profile, we received an outpouring of support. We felt some of the silent stigma of treatment temporarily lifted. A few friends even came forward with their own struggles to offer solidarity. Yet, one, two, three adoptions failed, and we could not continue. It was the darkest time of my life. We could no longer afford the monthly fee to continue to host our profile. I’d known this for a while, but I kept hoping. A few days later, I went to the mall to buy a gift before a family birthday party. I was walking around the food court when I felt a gush. I was having breakthrough bleeding cause by a medication I took after treatment. Blood soaked through my dress, poured down inside of the tights I was wearing, and pooled around in my shoes. I lied on the couch in the Macy’s bathroom and called my mom to bring me new clothes. I felt so ashamed that she would see me in that state. My rock bottom. The very next day we chose to cycle ONE last time. Actually, my husband decided. I was livid with him. How could he put me through this? How could he possibly understand the physical toll? How could he still have any hope? I went through the motions of the cycle, plagued by anxiety. The night before the transfer, I had a glass of wine. That morning, a cappuccino. When I began to feel sick a few days later, I worried that I’d gotten an infection from the transfer.

It never occurred to me that I felt sick because the cycle was successful. I hadn’t had any morning sickness with the last pregnancy. I spent the next few days wearing Sea Bands and in a state of suspended animation. When I began to bleed a few weeks later, I thought I knew what to expect. It would be a loss and we would be grateful we’d only told our parents. But, it wasn’t a loss. It was a subchorionic hematoma. One that healed. An earlier than usual ultrasound revealed a single small blob with a rhythmic heartbeat. And, just like that, it seemed like our journey might end.

Except I wasn’t ready at all. I had spent so much time feeling isolated from family and friends that I was not sure how to repair the relationships. My husband and I had battled infertility for the entirety of our marriage (we chose IVF in lieu of a honeymoon). We had to learn how to relate to one another when we weren’t in crisis mode. And, how would I tell my closest infertility friends?

Would my identity as an infertility advocate continue to be valid if I was a parent, too?

The process of becoming an infertile parent has not been easy. There are no roadmaps for the seasons of life, and I have found that each season affects relationships. Some are strained, some grow in unexpected ways. A few friends who were close when I was struggling (and who are still journeying) have now distanced themselves from me. I don’t take it personally, and I try to be open should they need me. I better understand the pain my parents felt because of my struggle as I experience the impulse to protect my son. I no longer expect my life to be one smooth, predictable journey, and I try to weather all of its seasons as thoughtfully as I can. I try to be the friend that my friends need, not the friend that I want them to be to me.

4. Life is Both Precious And Fragile

Before my first pregnancy, I had never lost anyone close to me. I hadn’t confronted my own mortality. I had never truly grieved. And I had no idea what a process it was. My grief was messy, raw, and just when I thought I was feeling better, it was totally unresolved. How could my baby die? How could I love and yearn and long for someone who was as big as a sesame seed? Well-meaning friends said things like “at least it was early,” and “at least you know you can get pregnant.” But this was a real child to me. And it was gone. And we would never learn why. And there was no model to mourn for them or to remember them. And everything reminded me that my baby was lost.

During our fourth IVF cycle, I felt sick after my retrieval. I’d had mild ovarian hyperstimulation syndrome (OHSS) before but I felt worse this time. By early afternoon I was struggling to breathe. We went to the ER. I was in so much pain I was fading in and out of consciousness. Doctors told me my left ovary had burst, filling with blood and fluid, and pushing on my diaphragm. They explained that I’d likely have emergency surgery to remove one or both of my ovaries, and that they needed to transfer me to the University Women’s Hospital. They hadn’t decided yet if I’d go via helicopter or ambulance. I turned to my husband and vowed we would NEVER do IVF again! I’d risked my life, and for what. ONE stupid egg! I was transferred to the hospital, and made it through the night with the support of fluids and without surgery. As l recovered, I questioned whether I wanted to become a parent enough to risk my own health.

When that egg, now a blastocyst, was transferred after my recovery, I committed myself to treating the experience differently. If this was to be my only time with that single embryo, I would enjoy each and every moment. I didn’t want to spend the whole time we had together obsessively peeing on sticks. I wanted to take them to experience life, and to enjoy our time together. It was a definite change of intent for me. I began to see both how precious and how fragile that small, new life could be. And instead of only grieving the brevity of our time together, I began to cherish it. They were coming with me everywhere anyway, so I went to my favorite restaurant, I went out with friends, I went shopping, I went to visit family members. I wanted their life, no matter how short, to have meaning. And I wanted to remember them. We did ultimately lose that one little embryo (and several more) but with each subsequent transfer, I became better at relishing that short time rather than lamenting it. I was grateful for it. I tried to embrace the same attitude with my family and friends. I began to reach out, and to transform in this connection. Instead of waiting for family and friends to support me, I began to give without expectation. I made time to spend time with those I loved. And, we began to celebrate the lives of our babies during the time we had with them, and after they left us. We have memorials throughout our home that commemorate each loss. We dug out that baby book, and we filled it. We took photographs and we made art pieces. We acknowledged that we create the meaning that their short lives have for us. And we take this day-to-day sense of gratitude with us into parenting. We were already parents.

Now, as I am parenting a living child, I remind myself daily to consider the challenges and the joys within a larger frame. Things still get hard—not as hard as in the darkest moments—but hard nonetheless.

I take a moment every day to visit our small memorials, like the photo below, to remind myself why I am doing this and what it means for me, and for our son. And I am able to move forward from there.

 

A photo taken during the memorial of one of the babies Marissa miscarried.

A photo taken on Coronado Island during the memorial of one of the babies Marissa miscarried.

 

5. You Have A Voice (And A Responsibility To Use It)

And, finally, the last and one of the most important lessons that I learned was that I have a voice. And I have a responsibility to use it. Before infertility, I was the definition of soft-spoken, even though I am an artist. People even questioned if I would succeed as a teacher because my voice was so soft! I scoffed at them because I saw myself as strong and as plucky! I have struggled to conjure up that image of myself when I feel anything but. But, I could not stand by during our journey. I could not be silenced. I needed to speak out, and to share, and to connect. I began in a small way, by making art about my feelings about our experiences.

One of the first pieces of art that Marissa made around the experience of infertility.

One of the first pieces of art that Marissa made around the experience of infertility.

It was a safe way for me to open up the conversation, and to begin to share. The infertility community nourished this voice, and pushed me to use it. Being a part of Advocacy Day, being a part of the ART of Infertility, being a part of my support group—they all provide me with a sense of purpose greater than myself. Knowing my voice has helped me to overcome some of the worries and fears every new parent experiences, too. I know that I can and will speak out, and seek help, and know that I am not alone. And that has made all the difference. We can only end the stigma and the silence if we are willing to speak out for ourselves and to share our stories.

Thoughts on Male Factor Infertility from Chas

Today’s blog post is from Chas. I had the opportunity to interview Chas and his wife, Audrey, for the project back in December. If you’ve seen our exhibit in person, you may be familiar with his reaction to being diagnosed with Male Factor Infertility. Thanks, Chas, for sharing your story with us!                                                                                          Elizabeth

 “We would have cute kids!”

That was the line I said to my wife while we were in college. Forward? Sure. Did I mean it? Yes. Did I know it would take 3 years and 7 IUI’s to finally have a child? Definitely not.

My wife and I wanted to do the things that we felt we had to do before we had kids. You know: get married, careers, buy a house, travel, etc. It wasn’t until my college roommates had their first child in May of 2012 that we sat down and said, “We want a child. We want to experience that kind of love.”

Flash forward 3-4 months of trying, we both felt something was wrong but due to our medical coverage we had to wait a full calendar year of trying to conceive before diagnostic tests could be run. In June of 2013 we were finally referred to our reproductive endocrinologist and the tests began. All of my wife’s tests came back with nothing wrong with her, but I was a different story.

DSC_5682s

Low motility and low sperm count. That is what my semen analysis (SA) read. I was angry. How could this happen? I have never done illegal drugs, I can count on one hand the times I had smoked a cigar, I workout, eat well, take care of my body, What the hell? Did I do my fair share of the college bar scene? Sure, but it’s not like I drank a fifth of Jack Daniels a night. This had to be wrong. Then the next SA three weeks later had the same results. I couldn’t wrap my head around it. Why me?

DSC_5470s

I was diagnosed with unexplained male factor infertility.  When I was diagnosed with male factor infertility I truly did go though the 5 stages of grief. At first I wanted more SA’s because I was a red-blooded American male and nothing could be wrong with me. Denial. Then when all 5 those SA’s came back the same I was angry at myself, and my body for failing me, with my anger directed towards anyone who crossed my path. I would snap at the littlest things and pick fights just to fight. The anger really stayed for a long time. After that came the bargaining: if I take these infertility vitamins and change my diet that should do the trick. It worked for other people it had to work for me. When the vitamins and diet change didn’t work the depression set in. This is when things got pretty bad. I was truly numb to the world. I disconnected from my wife. She would ask me a question about my day and I would give one-word answers. I couldn’t find the joy in the things I use to love doing. I didn’t want to be around anyone, I just wanted to stay home in the dark. After our 6thIUI failed during National Infertility Awareness Week 2014the acceptance finally started. My wife had posted something on a social media site that she didn’t know other people could see, outed if you will, our struggle to have a child to our friends and family. The cat was out of the bag so to speak.  After that only love and support followed from our friends and family. With that love and support we did a picture for NIAW and we also made a team for the Northern California Walk of Hope.

Chas_NIAW Having to watch my wife take pills and get injections probably was one of the worst parts of the whole IUI process.  The pills gave her hot flashes and I handled that pretty well I think. I always had something to cool her down. The injections were hard to watch. I know IVF injections are more extensive but watching her give herself Menopur injections sucked. Watching her do the pain dance, as we called it, always got to me, but the bruises afterwards would bring tears to my eyes. I had to helplessly stand by and watch as my wife had to go through this for something my body was failing to do.

The infertility community as a whole has been so amazing. My wife and I have met so many amazing people going through the challenges of infertility. I don’t think I have ever met that many people that truly pull for you to succeed in that capacity. There is such a kinship in the community that you really do have to experience it and cannot be qualified into words.

If putting my story out there can change one man’s mind for the better about Male Factor Infertility I would feel I accomplished my goal for this blog. Unfortunately, there really isn’t research and support out there for MFI. Why is it on rise? Chemical age? Maybe, but there is no concrete proof. This is especially true for unexplained MFI. There is no need to feel ashamed and disconnected from your partner no matter the diagnosis you are in this together.

Chas_Preg