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.

 

 

Medical Tourism – IVF Abroad

Darla, traveled to the Czech Republic for donor egg IVF and is today’s guest blogger. This post does contain an image of a pregnancy announcement as well as talks about loss. Thanks, Darla, for sharing your story!

An Unexpected Journey

“Journey” has always been the word I’ve used to describe our battle with infertility. (I’m also very deliberate in the use of the term “our battle” because, while it’s most likely that my eggs were the culprit, I can never forget that my husband was by my side through it all, and he is just as battle-worn as I am.)

Our journey to growing our family was an emotional one that tried to takes its toll on our relationship; a physical one that definitely took a toll on my body; a spiritual one that found me begging on my knees for a reason that a loving God would put us through this.

And for us, it was a literal journey. Practically to the other side of the world. But more on that shortly.

When we were told our best chance for success was using donor eggs, we considered it for a brief moment, but realized to do that here at our home clinic would require years of saving, and of waiting. We thought about living childless, but my heart could only take that for about, oh, a day. We looked into embryo adoption, and even had a wonderful and selfless woman reach out to us and offer us her embryos, but it quickly became apparent that it was very important for my husband to feel connected to our children in some way.

Our research into donor egg IVF led us to something we first brushed off as crazy: traveling abroad for an IVF cycle. The number one place to go for donor egg IVF cycles abroad is the Czech Republic. So we laughed and said, “Thanks but no thanks” to that idea, and kept researching. And our research kept bringing us back to a trip to the Czech Republic.

A dear friend of mine, who I met through an online infertility community, was dealing with a similar situation to ours at the time. She texted me one day and asked if I’d heard about this Czech Republic thing. I said I had, but before I could say we just weren’t on board, she said, “I think we’re gonna do that!” Her excitement about it was infectious, so I asked her to share her research.

Before I knew it, I was emailing clinics in Prague and other Czech cities to ask for more information about their program. My husband was intrigued, too, and he started making spreadsheets to compare stats. And one night, I sat in a bubble bath and he sat on the floor next to me. We ranked all the stats of the clinics abroad, and our own clinic in Texas. We averaged the rankings. And we found our clinic. I’m pretty sure I cried the next day as I emailed the coordinator at Zlin IVF and asked for an available transfer date in February. I KNOW I cried when she responded with the date that our babies would be put into my womb: February 9, 2016.

The time leading up to the trip was a crazy mess of coordinating with clinics here for meds and monitoring, planning a two-and-a-half-week jaunt through Europe, and talking friends and family down as they mildly freaked out about what we were doing.

Czech-trip

The trip itself was a whirlwind. We went to places we’d only ever dreamed of going: Florence, Vienna, Prague. We were standing outside one of the most famous classical music venues in Europe, the Musikverein in Vienna, when we got the call that our donor had 12 mature eggs retrieved and 9 had fertilized. I’ll never forget standing in the rain with my husband outside this gorgeous building and crying over these embryos. We’d never gotten this far before. And though that number was down to only two by the day of transfer, we were so grateful for this chance, and we had faith in our two “little embryos that could.”

Family-photoTwo days after returning from the trip of a lifetime, I told my husband over dinner at one of our favorite restaurants that I’d caved, had tested, and he was going to be a daddy. A week and a half later, we found out that both our little ones had decided to snuggle in!

And now, we take each day as it comes and remind ourselves that we’re farther each day than we’ve been before. Being pregnant after an infertility battle is a battle in and of itself, but like I tell myself daily, “Today I am pregnant, and I love my babies.”

Update:

I wrote this blog originally back at the end of March when I was 10 weeks pregnant. We found out not long after I wrote this that we were expecting two little girls who we named Olivia Adele (baby A) and Catherine Sophia (baby B). We spent 14 glorious weeks as the parents of twins, 11 weeks as the parents of our twin girls. We had dreams for them, we had a picture of our life as a family of four.Announcement

And then, sadly, the unthinkable happened. At our 20-week scan, we found out our precious Catie-bug was very, very sick. She hadn’t developed normally – she had an encephalocele on the back of her skull (which turned out to be an open neural tube defect), a very large cleft lip/palate, small brain structures, and one doctor classified her head size as being in line with microcephaly. We were devastated to say goodbye to little Cate on June 22, 2016, a day shy of 22 weeks’ gestation. I am now carrying my sweet little angel and our survivor, Liv, and hoping and praying we make it to October with no further issues. While our hearts are broken for our loss, the excitement we felt at finally finding a way to become parents and our joy in our daughters is not dampened. This is all just a part of our very unexpected journey.

Pregnancy Loss Cards bring Healing

Infant and Pregnancy Loss Awareness Month is technically over but I hope that its effects are long lasting. During October, I had the opportunity to talk to Dr. Jessica Zucker and calligrapher, Anne Robin, creators of a new line of pregnancy loss cards. The story of how art and writing has brought them healing, and how they hope their cards will bring healing to others, is below. Please be aware that the story does contain descriptions and themes of pregnancy loss.

Elizabeth

On a Thursday in October three years ago, Jessica Zucker was 16 weeks into her pregnancy when she began miscarrying at home. She was there alone and describes the experience as incredibly painful, intense, emotional, and horrifying. “I have these memories burned into my mind and my heart. Having her fall out, having to cut the cord, looking at her, putting her on a towel, and putting her in a bag.”

While her husband rushed home, Jessica was hemorrhaging. Fortunately, he made it in time to get her to the doctor but the amount of blood loss she was having made an un-medicated D&C necessary. That night, she drank wine and ate chocolate in bed. Jessica explains that grieving the loss of her daughter was made even more complicated by the fact that she herself also could have died. She wonders how she mustered the strength to make it through. “My grief would just come out. I would be driving somewhere and I would just start bawling or even screaming at the horror of how things happened,” Jessica said.

deeply-sorry-4

As a way to process her grief, Jessica, a clinical psychologist who specializes in women’s reproductive and maternal mental health in Los Angeles, began writing about loss. At first, she wrote about the politics of pregnancy loss and explored why we live in a culture where we can’t talk about the experience of miscarriage, where women somehow feel ashamed about their experiences. Then, last October, during Pregnancy and Infant Loss Awareness Month, Jessica initiated #ihadamiscarriage and went public with her own story in a piece she wrote for the New York Times. She explains that it’s helped so much because she’s connected with such wonderful women in the loss community around the world. “I feel my greatest way to honor my daughter, to honor our brief life together, our brief connection, has really been through my writing and I think that’s been the way that I’ve actually healed.”

“I feel my greatest way to honor my daughter, to honor our brief life together, our brief connection, has really been through my writing and I think that’s been the way that I’ve actually healed.”

Wanting to fill a void in the cultural conversation and in the marketplace surrounding pregnancy loss, Jessica decided to create a line of cards; to create something concrete and meaningful as a way to connect after a loss. Research shows that, after miscarriage, women are blaming themselves, feeling guilty, and feeling incredibly isolated. “My hope is that the cards convey messages that help women feel seen, feel validated in their experience, feel understood, and inevitably feel less alone because the card sender is thinking of them.” Jessica explains.

She also thought the cards could provide a sort of go-to guide for people who wonder what to say after someone they love experiences loss. They want to say the “right” thing, but many times don’t know what to say so they stumble.

love-you-5

Jessica knew which messages she wanted to convey through the cards but needed help designing them. She reached out to calligrapher, Anne Robin, who also has experience with pregnancy loss. “There were three (miscarriages) at different stages, all within the first trimester. One of them was at 12 weeks, one was at 11 weeks, and then two babies that we found out at 20 weeks had severe inter-cranial hemorrhage.” recalls Anne. “They realized there must have been some kind of genetic problem but they couldn’t find it.”

Anne was told by her geneticist to “just try again.” “That’s easier said than done, obviously, but I was pretty determined and felt like I needed to, like I couldn’t NOT try again, and again, and again, until it finally worked.” Anne recalls.

Eventually, it did work, and Anne now has a 4-month old son. As a way to memorialize her babies, she has a little box she keeps ultrasounds in, along with letters she’s written to them, and other mementos. “I still wanted something very physical so the one thing I did and I do really kind of cherish is had a new necklace made with a ‘C’ for my older son, that’s cut out of a circle, and then for the two babies that we lost much later, kind of the two that felt more real to me, I have these kind of empty rings. It’s something that I always have on me and it feels special and now my baby holds onto it a lot. He’ll have one of his fingers through the rings so that always feels really symbolic to me.” Anne explains.

grief-knows-5

Anne also used Pregnancy and Infant Loss Awareness Month last year to share her story publicly, creating a series of prints around the topic of pregnancy loss that were available for purchase, download, and use, on her website. She wanted to do something else this year and was looking for a project when Jessica approached her about doing the artwork for her pregnancy loss cards. “I finally had this baby in June and was interested in kind of coming full circle. Last year I was doing this all at seven weeks pregnant and totally terrified.” Anne explained, adding that, this year, she had a little bit more peace about her experiences and felt like she could really invest time and heart into the process.

I was pretty determined and felt like I needed to, like I couldn’t NOT try again, and again, and again, until it finally worked.”

To get started, Anne had Jessica look at her Instagram account to send her a list of fonts she liked and they brainstormed ideas. Realizing they both have an affinity for Mid-Century Modern design, Anne moved forward with shades of turquoise, mustardy yellow, and brick red, following a color scheme falling within that design aesthetic. “I didn’t want to make them super bright because I felt like they should be more muted because of the subject matter,” Anne explains.

Once a general design plan was in place, Jessica let Anne run with it.  “I love everything she does so it’s kind of ridiculous. I told her, you go for it, this part is all you,” she said.

What resulted was a series of pregnancy loss cards featuring honest messages, and gorgeous calligraphy. While some of the stronger language may not resonate with everyone, Jessica hopes that there’s a card in the series for everybody and wanted to convey a sense of consistency.

pregnancy-after-4

With messages including, I’m here for you always and I love you like crazy, Jessica explains, “I’m trying to underscore the point that I’m here for you right now because this happened and then next week we can hang out in this uncomfortable space together because this is part of life and where a lot of growth, unfortunately, happens.”

She adds that rushing grief doesn’t help anybody and ignoring it most definitely doesn’t either. “I think it’s incredibly important to try to resist judging one’s grief and that we should really shy away from comparing and contrasting grief or loss experiences.” The card stating grief has no timeline expands on this theme. “Women shouldn’t have to worry that they’re going to make somebody uncomfortable or that it’s inappropriate somehow to talk about their loss. That they should feel well within x amount of time,” Jessica says.

It was important to Jessica to have a card for pregnancy after loss, and she describes the baby loss/still birth announcement in the collection as stunning and so meaningful and important.

Both Jessica and Anne have been completely overwhelmed and excited by how well the cards have been received. “At first we were literally talking about printing 25 copies of each card. We had no idea the press we were going to get and the reaction that people would love them so much.” says Anne, adding how nice it’s been that people have been expressing gratitude that the cards are now available.

loss-announcement-4

Working on this line of cards has been an important part of Jessica and Anne working through emotions surrounding their own experiences with loss and it seems that the cards are definitely fulfilling Jessica’s goal of delivering honest and truthful messages, filling a gap in the marketplace, and sparking a discussion about pregnancy loss. She explains, “We have to embrace that this is part of trying to create life and women shouldn’t feel that they have to be quiet about it.”

Jessica’s hope is that future generations grow up in a landscape that is incredibly different when it comes to these important and normative issues, saying, “It can be like a rollercoaster ride. you can be laughing one day or one hour and, the next hour, screaming about your pain and that’s okay.”

The Psychological Benefits of Support Groups and Mindfulness for Women Choosing ART (Assisted Reproductive Technology)

Ivy Margulies, PsyD is our guest blogger this week and shares some fascinating info on the benefits of support groups and what you can do if one if not available to you. Thanks so much for sharing with us, Ivy!

The Psychological Benefits of Support Groups and Mindfulness for Women Choosing ART (Assisted Reproductive Technology)

In reviewing existing research on the psychosocial factors associated with the use of in vitro fertilization (IVF), it is patently clear that strong social support is helpful in reducing the anxiety, stress and fear in women deciding to pursue this path.  To illustrate further, a recent study by the Mayo Clinic (2002) found women who attended group sessions prior to a cycle of IVF were significantly less anxious during the IVF treatment when compared to women who did not participate in a support group.

5452083663_c42f3f0f20_o

As a clinical psychologist and facilitator of infertility support groups, I have witnessed first-hand the psychological benefits associated with the reduction in stress and anxiety that takes place when women come together and share their intimate journey of infertility.  Moreover, when women allow themselves to feel emotionally vulnerable in a group they immediately feel heard and seen by others traveling the same uncertain journey. They are no longer invisible as they pursue having a much wanted baby.

In general however, most women going through infertility treatments keep it to themselves and are less likely to share or seek social support during this time in their lives.  Many couples don’t particularly want to tell people about it which compounds the embarrassment, shame and stigma they may be feeling.  Many women report feeling defective; not “normal” when compared to their peers who are able to conceive easily.  This compounds the common feeling of being socially isolated, particularly when research tells us social support is critical for women and their partners who are going through infertility.

Scientific evidence strongly confirms that emotional well being along with various forms of health benefits are in direct correlation to social support.  Women experience positive emotions when they have supportive interactions with other women who are going through the same experience.

5737376239_1dc3bf592c_o

However, positive results can also be achieved when women (and their partners) use mindfulness techniques.  Defined by Merriam-Webster as a mental state achieved by focusing one’s awareness on the present moment, mindfulness allows for calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations. Further more, it can be used as a therapeutic technique to help people with any number of distressing feelings and situations as well as beneficial in the practice of meditation.

Mindfulness has myriad applications.  An interesting finding on the benefit of using mindfulness is that it can be used in place of a support group (or in conjunction with a support group) when there either is no support group in your area or if you personally prefer not to partake in a support group experience and can be implemented this way:  If you take the time to close your eyes for ten to twenty minutes, minimum per day, and imagine that you are receiving unconditional, loving support from your family and friends as it relates to your infertility, you can elicit a similar benefit of reducing symptoms of stress and anxiety as if you were participating in a group therapy process.  In addition, there is a reduction in feelings of distress and self-criticism, just as there is when you participate in a support group.

5452084355_48f7bf76e6_o

I am encouraged by this finding which confirms that continued practice in mindfulness based techniques can be used as a tool that you can implement simply by exercising the power of your mind which once trained, can be used in any number of other anxiety provoking situations in your life, not only those associated with IVF.

 Ivy Margulies, PsyD of Angels Born Still is a clinical psychologist in Santa Monica, California specializing in maternal mental health, including stillbirth, miscarriage, infertility, postpartum mood and anxiety disorders, and infant loss. Dr. Margulies brings mindfulness and awareness to the mind-body-spirit connection through meditation, visualization, and breath work.

In addition to Dr. Margulies’ clinical practice, she is a death midwife, assisting and helping educate the family on processes associated with the transition of life into death, at any age. The work Dr. Margulies does is designed to create a sacred space for parents who have experienced perinatal death for reasons that are unknown and make no sense.  She is dedicated to improving the care and information families need in the hospital.

Dr. Margulies is a member of the Los Angeles County Perinatal Mental Health Task Force, working to reduce the stigma and shame around maternal mental health issues while raising awareness of the #1 complication of pregnancy and childbirth.

 

She can be reached at ivy@drivymargulies.com or through her website www.drivymargulies.com