IVF and A New Beginning

Today’s guest post is from Paula Campos who we met at #asrm2016 in Utah last week. Paula’s own infertility journey led to creating the app, Naula. Thank you, Paula for sharing your story! 

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Paula Campos

When I was a kid I was certain that I was going to be a doctor. My Dad always told us
he wanted to go to medical school and he was always very meticulous. He cleaned our knee scabs, cuts and everything else that required a wound dressing change with perfection. His frustration became a momentary dream for me. When asked what I wanted to be when I grew up, I was quick to say that I wanted to be a doctor.

Last week I almost felt like one when I attended the American Society for Reproductive Medicine (ASRM) Scientific Congress & Expo in Salt Lake City, I spent three fantastic days learning about infertility, checking the latest and greatest technology on embryo transfers and attended some insightful panels on infertility advocacy and legislation changes, research and the emotional rollercoaster that patients experience while going through fertility treatments such as In Vitro Fertilization (IVF). I am not pursuing a new career in medicine, I was there because infertility is part of my story.

I am married to the man that I met when I was 10 years old. We were best friends before becoming life partners. We always talked about having kids, two maybe three! So we started working on that a few years after getting married. A year passed, then another year, then another year. I was having trouble figuring out when I was ovulating so I went to see my physician, she told me it was a good idea to check in with an specialist so that is what I did.

I went to a couple of different Reproductive Endocrinologists for a consultation and they all told me the same thing, I had low ovarian reserves. Their recommendation was to start IVF immediately. I was in denial for a while but time (and eggs) was running out. Picking a doctor was no easy task. I ultimately went with the one that gave me hope and comfort: Dr. Vicken Sahakian. On my second consultation I left the clinic with a print out calendar with my protocol, a lot of paperwork with instructions, and tons of questions in my head.

I went online and looked for videos to watch, specifically how-to videos and egg retrieval procedures. How to inject Follistim, Lupron, Menopur, Gonal-f! What is the egg retrieval like? How long does it take? I was stressed, overwhelmed and on a mission to find a mobile app to help me track all of my medication and appointments on a timely manner. To my surprise, I couldn’t find anything that was close to what I needed so that’s when the idea of creating something came to mind.

I could use my expertise and creativity to give women a useful tool and help make their journey less stressful. Experiencing the struggles first hand was the inspiration to create Naula. While going through the treatments I also cofounded The Glue, a full-service marketing agency specializing in creating meaningful and beautiful experiences. With Neille’s (my business partner’s) full support, encouragement, wisdom and endless patience, we designed, developed and launched Naula, the best fertility treatment mobile app in the market.

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Campos created Naula, an app for managing fertility treatment cycles.

Naula was created to help women just like me, going through Assisted Reproductive
Technology (ART) treatments, manage medications and appointments. Keeping
everything in one place was key. It includes the most common treatments IVF, IUI, Egg Freezing, Egg Donation and Surrogacy. We compiled the best instructional videos and added step-by-step instructions with custom illustrations one tap away from your fingerprints. Users get reminders and alerts on their phone no matter where they are.

The ability to instantly add medications and appointments to an easy to use calendar, provide a bird’s eye view of the entire protocol and privately share with loved ones was very important.

fertility-treatment-appHaving gone through IVF three times, we added a feature that allows users to duplicate a treatment which saves a lot of time. Most importantly, security and privacy was top priority, all of the data transfer and personal information is encrypted and protected.

Infertility is a heavy topic. Emotional support and empathy is not as available as anyone might expect. And, I think for most women and men not being in control is what makes this so hard. It took me about three years to be able to openly speak and write about this. I never imagined that I would be going to a reproductive conference, let alone make a product like Naula. It gave me a new perspective about getting pregnant,making a baby, having a family, adopting and also none of the above. My IVF treatments ended but my journey is not over yet. Creating Naula gave me a new beginning and I will get another chance to write how my story ends.

Our Misconception: Chris and Candace Wohl

Our Misconception: The Story of Candace and Chris Wohl
by Jalen Smith

Earlier this year we had the pleasure to sit down with The Wohl Family as they shared their story and long journey to parenthood through gestational surrogacy.

Candace and Chris are a married couple living in Virginia that has struggled to conceive. Candace underwent 5 IVF cycles between a 2 year period, after 6 failed IUIs.

“Each bead represents a shot,” Candace told ART of Infertility’s Maria Novotny, when showcasing a piece of her artwork. The process of having a baby has been a process hard physically, emotionally and financially for the family.

Chris and Candace chose to string a bead for each shot Candace endured.

Chris and Candace chose to string a bead for each shot Candace endured.

“We were judged and told by family and friends to not fundraise, that this issue should have been kept private, we were even told to just adopt.” said Chris. The couple’s story is a popular one within the infertility community and was featured on an episode of MTV’s “True Life” in 2013.  “It was such a seesaw of emotions, from hope to despair from hope to despair,” said Candace. “There was point where we wouldn’t let ourselves get our hopes up just to be let down again.” MTV did a good job of capturing and telling the emotional heartache involved with infertility. “It was hard for us to watch as we had to relive our last failed IVF.”

The Wohl family eventually found hope in surrogacy. In March 2013 the couple began to start the process to pursue other means of child birth. After finding a surrogate in June 2013 the couple then began the contract signing process and had to wait an additional six months for pregnancy insurance clearance. “The waiting was hard for us, the not knowing if it would work out this time.” In October 2013, they transferred their two remaining embryos to their surrogate.  The following month, the couple received the news that they were pregnant, the beta was positive.

Candace wanted to tell her husband the good news that they were pregnant in the best way possible. She shared with us the story of the dusty onesie. “After my first IUI, I was confident and I went out to buy this onesie and card to share with my husband that we were pregnant.” Similar, to those other vulnerable yet monumental moments in life like marriage, she wanted this moment to be special. She wanted it to last. After 6 failed IUIs, Chris had still not seen the onesie, not until that celebratory day in November 2013. “It was one of those things that I held onto, I couldn’t let it go, I’m glad I didn’t because I was fortunately still able to share it with him.”

“It brought it all home to me that she really has endured so much” said Chris after hearing and seeing the dusty onesie story for the first time. The fact that she had kept it for so many years and had taken so many “beads” was a telling story of their struggle for him.

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Chris and Candace with the dusty onesie.

“What people don’t understand is we were trying to adopt, there were a lot of people that didn’t agree with surrogacy when it first came out,” said Candace. “We realized early that we had to get tough skin.” To share their story of surrogacy was at first difficult, while the Wohl family can be considered well known members of the community now, the option to choose this route to start their family was troublesome for them.

“If you would have asked me 7 years ago that we would be doing this, I would have not believed you,” said Candace. At the time the couple was in full belief that they would be able to carry a baby to term but years of surgery and failed treatments denied these hopeful parents time and time again.

When the parents to be accepted surrogacy it did come with lots of doubts and concerns for the future. For Candace is was like watching a quarterback play football and she was watching from the sideline. “You hope they can break the tackles, you hope nothing gets in their way on the game winning drive but all you can do is cheer them along.” Candace said. It was a very vulnerable place for her to be, in one in which all she could do is watch and place her hopes for motherhood in the hands of someone else. Chris and Candace were in the room with the surrogate while she was giving birth. Candace held her leg while she pushed and Chris cut the umbilical cord. While their daughter’s birth certificate did not initially feature either of their names, they immediately bonded with her.

Many forget to mention the struggles infertility have on men or many feel the struggles of infertility are not a man’s right to feel bad. The couple briefly talked about this in their sit down with us. After all, it was his wife’s body. But Chris during his sit down with us shared his thoughts on the process. “I was the parent too” Chris said. “My gender is a strong yet vulnerable one, I could never know her full pain but I was there for her the entire ride.” Chris felt that taking a back seat was not an option for him.

Ultimately the couple’s fears of lack of emotional connectivity, lack of compassion from doctors and guilt were lost once their daughter was born in 2014. “All of the worries I had were lost once she was here, I never felt closer to anyone,” Candace stated.

The Wohl family fought a lot on their journey to parenthood, it was never easy, but what they want to do now is educate others. Educate hospitals, doctors and lawyers so that the next couple does not have the complications they did. “It all starts with education,” Candace closed.

To learn more about the Chris and Candace’s story read their blog at ourmisconception.com

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.

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    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.

 

 

Artwork Wednesday: An Apple and its Seeds

Back in 2014 at Advocacy Day in Washington D.C. Maria and Elizabeth developed art packs. These packs were designed to provide an outlet of freedom of expression and healing to those affected by infertility.

Did you receive one of our art packs in D.C. and have an artistic story that you want to share that you haven’t shared with us already? We would love to feature your piece in one of our future #ArtworkWednesday posts.

If you’re unable to complete your project, that’s okay. We understand that creating artwork can be intimidating. However, it’s more about the process of setting aside the time and giving yourself some space for a creative outlet than the results.

Recently Elizabeth Sobkiw-Williams created a piece from one of those art packs. Read her personal story and view her moving artwork below:

Elizabeth Walker's untitled piece from one of the Advocacy Day art packs.

Elizabeth Sobkiw-Williams’ untitled piece from one of the Advocacy Day art packs.

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Elizabeth Sobkiw-Williams

mixed media – yarn, watercolor

I once had a child ask me why an apple had seeds, and I told her that they could be planted and new apples would grow. In that moment I felt like something in nature had gone wrong with me. I was like an apple with no seeds, an anomaly, an end of the line. There would never be a piece of me that would be a part of the world.

I always look for the unique in nature, something to remind me that I am not alone in my struggle. And beauty can be found in these imperfections.

The Intern’s Perspective

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Hello all, you don’t know me but I hope by the end of the year you will. My name is Jalen Smith, I will be working with Maria and Elizabeth this year as their Social Media and Communication Intern for The ART of Infertility. I am currently an undergraduate senior studying journalism at Michigan State University in East Lansing, Michigan where I will graduate in May 2017. I come into this internship with a vast array of experience in communication/writing related positions. Here at MSU, I have worked with various campus media outlets including VOICE Magazine as their Vice President and Content Editor and The Black Sheep where I work currently as a Staff Writer. In addition to my experience in the media, I am also a member of the living learning community RISE (Residential Initiative on the Study of the Environment) program where I served as a peer mentor and working towards a minor in Environmental and Sustainability Studies in addition to my major. I am originally from Detroit, Michigan where I attended the award winning Cass Technical High School and served as a Public Affairs/Communication Officer for their Junior ROTC program

Enough about me though, I am super excited to be working with the project this year. This past weekend, I had my very first opportunity to see some of the artwork in person and truly get a feel of what this organization’s message is. The event took place at REACH Art Studio in Lansing, Michigan about a 10 minute drive from East Lansing. At first glance, the artwork was a lot to take in, I needed a moment of retreat to take in the context of the art I was seeing.

One of the many new pieces on display from Art of Infertility at the exhibit.

One of the many new pieces on display from Art of Infertility at the exhibit.

Having said that, the art was engaging, it was powerful and it was compelling. I particularly enjoyed certain key pieces that included Elizabeth’s own piece titled, “Crib with Medication Boxes.” It really spoke to me, the amount of trial and tribulations this disease has caused so many. It made me think about the families, the mothers, the fathers, that were heartbroken, made to feel “less than” because of their inability to conceive. It made me think about some of the small things in life some of us take for granted. “What comes easy for some does not come easy for others.”  A lesson in the realities of infertility for millions across this nation and quite frankly, across this planet was a hard pill to swallow. The art exhibit also had lots of other interesting pieces from many other artists and had a thought provoking outlook in the sector of cultural rhetorics.

Elizabeth Walker's piece titled, "Crib with Medication Boxes" Was one of the many featured in the show from Art of Infertility.

Elizabeth Walker’s piece titled, “Crib with Medication Boxes” Was one of the many featured in the show from ART of Infertility.

The concepts in which these rhetorics exist for me is still a confusing concept to grasp luckily Maria will be able to coach me through them this year. There are several different themes associated with the rhetorics of this event. For the Art of Infertility most of the artwork exist in three of those categories: activism, body, and unity. Activism is something that for me stands out as a core theme of this organization. The ability to spread awareness, start conversation and engage and bring together people of different backgrounds to discuss an issue that has long lasting physical, mental and emotional trauma. I’m so thankful that I have been given the opportunity to work with this team this year. To help create engaging content that will allow the voices of the voiceless to be heard. Looking forward to an academic year of purpose! Until next time! Hello again!

Maria Novotny and I discussing other artist's pieces during our visit to REACH Art Studio.

Maria Novotny and me discussing other artist’s pieces during our visit to REACH Studio Art Center.

Myth – You’re No Longer Infertile Once You Become a Parent

Becoming a parent after dealing with infertility cures childlessness but doesn’t cure infertility. Today, we hear from Lauren of Rainbows & Unicorns, a site about parenting after pregnancy loss and infertility. She reflects on mothering her daughter who was born after donor egg IVF. This story originally ran during National Infertility Awareness Week 2016 and does include an image of parenting. Thanks for sharing your story with us, Lauren!

I scoop up my toddler and carry her upstairs to begin our bedtime routine. Diaper, pajamas, teeth, goodnight Daddy, books, and then — my favorite part — songs and cuddling.

She lies on my belly, her head against my chest. “Saaah!” When one song ends, she looks up and asks for another. And another. And another. Eventually my little ball of energy goes limp in my arms. I hold her for a few minutes, treasuring her chubby cheeks and the smell of her sweet, malty little head before kissing her goodnight until she wakes up to nurse at four in the morning.

Lauren with her daughter at bedtime.

Lauren with her daughter at bedtime.

Although singing the same limited repertoire until my throat hurts and not having more than a five-hour stretch of sleep for almost two years grate in different ways, I remember how it wasn’t always like this. In the tough moments — like trying to console a teething child having an hour-long exhaustion tantrum at 3 am — I somehow find inner strength. I get to do this.

I am a mother thanks to many people, including a younger mom who donated her eggs so that I could experience the same joy she felt when she held her son for the first time.

It wasn’t joy that I felt when I met my daughter. By then, I’d been through too much to let myself feel anything so big. After miscarriage, infertility, being told I would never have a healthy genetic child, and a high-risk pregnancy requiring me to deliver via planned cesarean, I couldn’t allow myself to believe that I was finally a mom. Not until I heard my daughter’s first cries. Not until I held her. Not until she was furiously suckling did it dawn on me that I was out of the trenches.

But am I really a regular parent now? Parenting after infertility is a strange place to be. As I like to describe it, “I’m no longer in the trenches, but I’m covered in mud.”

The grief of infertility is hard to remember. Like the face of someone you loved a long time ago, it’s hard to recollect its features in detail. That is, until a whiff of their perfume, or a pregnancy announcement, or an innocent remark from someone who has no idea why the question “When are you having another baby?” causes your heart to quietly crack a little.

“I’m no longer in the trenches, but I’m covered in mud.”

For many parents like me, we’ve left Infertility Island but we’re moored offshore somewhere else. Play dates with other parents — so many blissfully unaware of everything that can go wrong before, during, and after conception — can have moments that are hard to navigate. How do you relate to another parent who casually announces she plans to get pregnant in March so the baby is born before Christmas? What do you say when someone asks when you’re having another baby? How do you casually explain egg donation when asked where your daughter’s red hair comes from? In time, the answers come.

Don’t misunderstand; none of this is as hard as trying to have a baby. But when you’re a graduating member of a club you never wanted to join, you’re caught between two worlds: the one you had to leave once your child arrived; and the other everyone else assumes you’re in.

I have my “rainbow unicorn” (if a “rainbow” is a baby born after loss, I surmised one born after infertility would be a “unicorn”) and she fills my days with more joy than I thought possible. But joy and pain aren’t mutually exclusive. What a lot of people don’t realize is that having a baby resolves childlessness — not infertility.

You’re caught between two worlds: the one you had to leave once your child arrived; and the other everyone else assumes you’re in.

Even though we’re parents, we’re still infertile. Unless we fall into a small lucky statistic of spontaneously conceiving after infertility, if we want a second or third child we will have to submit to the invasive, sometimes painful, and always expensive tests and protocols we endured a few years before — this is equally true whether you do infertility treatment or adopt.

If we want a second child, we’re lucky to have eight chromosomally normal frozen embryos to choose from. All we have to do is pick a date for transfer. Most of my infertile comrades don’t have leftover embryos, either because they didn’t do IVF or, if they did, they didn’t have any embryos left over. It struck me the other week that some of my friends are going to have to go through the whole TTC thing all over again. They have my full support and admiration.

For me, parenting after infertility has given me some unexpected blessings. First and foremost, I have this amazing little girl in my life. She’s affectionate, smart, talkative, mischievous, and healthy. We might not share DNA, but we share a sense of humor, a love of Marmite, a dislike of tomatoes, and we’re both pretty tall with big feet. Most importantly, she’s here, and she couldn’t have been created any other way. My journey to motherhood was filled with more pain than I thought I could bear, but I’d do it all over again to have this sweet child that I get to call my daughter.

Eighteen months into this parenting gig, I am more or less at peace with a whole lot of stuff that I never thought I’d be able to accept.

I have a chromosome disorder which means genetic children aren’t possible, so I chose egg donation to build my family. I can say that openly and joyfully now that I’m a parent. I can be open about the way my daughter was conceived because the irrational shame of not being able to reproduce has dissipated.

Breastfeeding has been tremendously healing in this respect. I wasn’t expecting much, so I was surprised that it came to me so easily. Being able to feed my daughter they way I hoped has restored faith in my otherwise broken body. My body can’t make a baby that will live, but it’s pretty damn good at growing and feeding them!

Over the last year and a half, I’ve spent days looking into my nursing daughter’s beautiful eyes fixed on my face — the same eyes I admired in our donor. Not recognizing any of my family of origin’s features in my daughter was, at first, strange. Sometimes she looks like her dad, sometimes she looks like our donor. To my surprise, I like seeing our donor’s influence. It’s reassuring to see something of the special woman I chose to replace my DNA reflected in my daughter.

Eighteen months into this parenting gig, I am more or less at peace with a whole lot of stuff that I never thought I’d be able to accept.

You might say I had a crash course in comfort levels, though. My daughter’s hair is a deep red, and every time we’re out three people, on average, stop us to admiringly ask if red hair runs in my family. At first the question made me wince. I didn’t know how to answer the question without also sharing the circumstances of my kid’s conception. I’ve got good at saying, “Nope! But isn’t it beautiful?” When pressed, I explain, “Red hair is a recessive gene, which means both genetic parties have to carry it.” In this way, I’m able to acknowledge my daughter’s genetic origins while not divulging too much to a stranger if I don’t feel like it.

I guess that’s what parenthood is about: constantly being surprised and having to readjust expectations, all the while practicing patience, kindness, and even finding the funny side when something’s gone wrong.

And in that sense, my infertility journey prepared me well.

Lauren is a mother via egg donation, after miscarriage, infertility, and a massive postpartum hemorrhage. She writes about her journey to motherhood and what it means to be a non-genetic parent at OnFecundThought.com. A London-born, Southern Spain-raised writer and artist, Lauren lives in San Diego with her husband and their toddler. Follow her on Twitter at @DEIVFmama and Instagram at @onfecundthought.