Breastfeeding after IF – Natalie’s Story

August is National Breastfeeding Month. Breastfeeding may not be the first thing you think of when you hear the word infertility. However, there are a variety of ways that barriers to breastfeeding/breastmilk and the disease intersect. Throughout the month, we’ll spend some time exploring the topic. In today’s post, Natalie Higginbotham shares her experience with breastfeeding after infertility, including the challenges that she encountered due to polycystic ovary syndrome (PCOS). This post does contain a picture of a baby and parenting. Thanks, Natalie, for sharing your story! 

Breastfeeding After Infertility
by Natalie Higginbotham

Soon after my son Atticus was first born, I remember a flurry of nurses and medical staff trying to help him breastfeed while I was in the recovery room. I had just come out of a cesarean section, and was very loopy from the medicine I was given to help relax. A nurse held an oxygen mask to my face telling me to take deep breaths since my blood oxygen level was taking longer than normal to come back up. All I could focus on was my new baby boy, trying to make sure he had the opportunity to breastfeed. One of the biggest concerns I had going into my c-section was the possibility of it negatively affecting my ability to nurse.

After I settled into my private room, one of the first nurses to visit us was a lactation consultant. We’d met once before in the Breastfeeding and Baby Basics Class. She came in and congratulated us. She proceeded to say how she was just in another mother’s room who was in the same boat as me. Apparently, polycystic ovarian syndrome  (PCOS) and c-section births do not coincide with an easy breastfeeding journey. Due to hormonal imbalances, some women with PCOS have difficulties maintaining an adequate milk supply. With so little going in my favor it was important she visit often during my hospital stay to give me the help I needed. She instructed me to pump after every feeding, and to pump every couple of hours – even in the middle of the night.

Luckily, my body responded well to all that pumping. My milk supply came in after I got home, and I seemed to have no issues nursing. I have a few friends who needed to stop nursing early on, due to the pain or other problems. I was so happy that overall, I didn’t really have any excruciating pain or issues that kept me from nursing Atticus.

Natalie and Atticus - Breastfeeding after InfertilityFor me, breastfeeding was about so much more than just feeding my baby. After years of not ovulating and abnormally long cycles from PCOS that led to failed cycle after cycle; breastfeeding was my opportunity to let my body do something right for once. As it turns out, my body finally knew what to do and did it well. I found it very rewarding to be able to nurse and bond with my long-wished-for baby. His conception and birth didn’t go as planned, but at least I was able to provide him with nourishment like I hoped for. I went from being angry at my broken parts to proud and happy with my body’s ability to do something right for once.

Coming up on fifteen months of our breastfeeding journey, infertility’s influence is still present. I am trying to wean my reluctant toddler. Nutritionally speaking, it is perfectly fine and he doesn’t need to nurse. However, he still very much relies on it for comfort. In a way, so do I. Breastfeeding my long-fought-for baby has been such a reward. The bond we built breastfeeding provides solace and mends all the brokenness infertility caused.

We want to begin another frozen embryo transfer (FET) cycle in hopes of giving him a sibling. I am not allowed to breastfeed while on the many different injections the cycle requires. Understandably so, I don’t want him pumped up with residual in-vitro fertilization medicine any more than I want to feed them into my own body. The pressure is on now to wean him.

I enter the end of our breastfeeding journey with some uneasy feelings. I worry that we will wean and go on to do our FET only for it to fail and weaning be all for not. I worry that he is the only baby I’ll get and I’ll regret weaning him sooner than he was ready. In a way, I don’t want it to end, because that means my baby isn’t a baby anymore. Watching my baby grow up is a strange mix of pure joy and heartbreak. Joy in seeing him thrive and heartbreak in missing the tiny cuddly newborn that is grew up way too fast. I’m savoring these final moments of nursing and my baby wavering into full on toddlerhood. Either way, I know I’ll look back on our breastfeeding journey with joy, happiness, and comfort in all it has meant to me after a three year long battle with infertility.

Read more about Natalie’s story at http://www.ivf-mama.com

Do you have a story of breastfeeding and infertility that you would like to share? Please contact us at info@artofinfertility.org.

Redefining Infertility Success Stories

Infertility art work

Infertility success stories. We’ve all heard them. We all want to be one.

No one would argue that a journey that includes a baby and parenting is a success story. However, we at The ART of Infertility (ART of IF) believe that it’s not the only definition of infertility success.  Sometimes we find success in unexpected and beautiful ways.

In an effort to challenge perceptions of successful infertility outcomes, we’re publishing the first of what we hope will be a long line of non-traditional infertility success stories.

Reflections on Infertility Success from The ART of IF’s Elizabeth and Maria

“A successful outcome of my own experience with infertility has been the ways in which it has advanced my career. At one time, I worried about how my morning monitoring appointments might negatively affect my work. The frequency of doctor visits and the on-demand scheduling made me feel completely flaky and unreliable.”

“However, coping with my infertility by using art and writing, I started The ART of Infertility project. Working on ART of IF, I’ve had the opportunity to gather and share stories internationally. I also gained the experience in communications that allowed me to be promoted from Biomedical Photographer to Communications Specialist at The University of Michigan Medical School. I love my teams at ART of IF and at U of M and the work that I do. I wouldn’t be where I am today professionally without infertility” – Elizabeth

“When I first enrolled in college, I wanted desperately to become a physician’s assistant. In fact during high school, I spent my summer’s working at my grandfather’s urology clinic – often times accepting semen donations – an ironic memory that continues to make me laugh. Yet, as my first semester in college progressed, I found myself anxious and stressed. My science classes, while interesting, were difficult. During this time, I was also enrolled in an English writing class. Writing seemed to come naturally to me and I found happiness (and thus) success with writing.

Today, as I finish the last semester of my PhD in Rhetoric & Writing, I find myself feeling as if my higher education journey has come full circle. Studying what I call “rhetorics of infertility” and situating The ART of Infertility as a research site, I find my initial interest in health and medicine come to fruition. Here, with as a Co-Director of this project, I use our research to make arguments for more patient-centered practices of care. This work is personal and meaningful. I believe this is my new definition of success, doing work that matters and everyday has deep personal meaning. I’m pretty sure that while my infertility led me to this point, I still lucked out.” – Maria

An Infertility Success Story from Our Archive

Leanne Schuetz was diagnosed with Polycystic Ovarian Syndrome as a teenager. Even though she and her husband were in their early twenties when they began to try to conceive, it took five years, experiencing multiple miscarriages, and undergoing a series of intrauterine inseminations, before their daughter Olivia was born. While Leanne and her husband dreamed of having a lot of little ones, Olivia will be an only child.

Just over three years ago, Leanne first began creating artwork. Mixed media pieces of women who she calls “my girls”. Through this, she’s found a community outside of infertility and has truly become an artist. She’s found out first-hand how art heals. Listen to Leanne’s story, or read it, below and browse a mini gallery of her pieces to see how she’s progressed as an artist over time.

“It all started because I was really depressed because we weren’t going to do treatment again for infertility. Olivia’s going to be an only child, and I know that sounds really selfish. That we have her, you know. Like I should be so thankful that we finally had her and here I am depressed that we can’t have more kids. But I always imagined my life with lots of little ones for a really long time.”

“So, Olivia was in school full time and I still couldn’t go back to work because I wouldn’t make enough to cover the day care, even when she WAS in school. So I had all this time on my hands about what am I going to do with myself. And so, I just started doing the CitraSolv papers, which led to art journaling, which led to my girls.”

Leeanne Schuetz has used art to find out who she is outside of infertility.

“Their proportions aren’t always exactly right but that’s okay. It’s about celebrating their imperfections, and lately I’ve been thinking about, you know. I like the idea of courageous hearts – of facing where they’re at, who they are. I’m talking about them like they’re real but they’re real to me. And being okay with who they are and everything that makes them different, and special, and unique, and… Some of my girls are sad and some of them are happy. It just kind of depends on how I’m feeling that day and how they come out.”

“It’s not all about infertility. You know, some pieces definitely are because I certainly still have bad days where a pregnancy announcement will knock the wind out of me. Or the days that I remember my miscarriages and for me, I’m using art as a way to move on past infertility. It’s trying to really have a life beyond the fact that I’m infertile.”

“For so many years, I mean, years before Olivia was born, the years after Olivia was born, my whole life was revolved around infertility. So really, for me, I’m using art as a way to try to find out who I am apart from that and to discover what I like and what I don’t like.”

“I like doing mixed media, I love collage, I love acrylic paint, I love water color. I really love doing collage and I love layering. All my pieces have a lot of layers to them.”

“For the most part I never know what I’m going to make before I start. I know it’s probably going to be a girl of some sort but I don’t know who she is or what she looks like, So, just whatever I’m feeling, you know. Happier days tend to be brighter, more fun colors. I went through this phase with a lot of browns. You know, I was in a funk and I was really drawn to the browns. I love purple. Purple always ends up in my colors, I’m not really sure why.”

“I was inspired by some other artists who I met online who were really encouraging and they’ve really just been amazing. The artists online that I’m friends with, you know, because for a long time, ‘I’m not an artist, I’m not an artist,’ you know, ‘I can’t, I’m not creative, I’m not really an artist, it’s just a hobby.’”

“They’re the ones who just encouraged me saying, ‘No, you ARE an artist. This is a part of who you are and it’s okay to call yourself an artist. Even if no one ever sees your art, it’s okay to call yourself that and it’s okay to want to grow as an artist and to learn new techniques.’”

“I mean, I’m definitely a baby artist. I still have a lot to learn, but yes!”

“I’d love to be able to do some sort of workshop, teaching other women who think they can’t draw and have no skill. I’d love to be able to do something like that I’d love to, I don’t know. I have a little Etsy shop. I sell art once in a while but I know eventually I’d love to teach it to anyone who would want to learn. You know, especially I think I have a special place in my heart for people who think that they’re not artistic, for people who think they can’t do art. Because I always said I’m not artistic. My step-mom had to kind of drag me along in starting doing it and I’m really thankful for her for that because I would have never attempted it because, ‘I’m not creative’.”

“Everyone is creative. They just have to find what that is and what makes you happy, and what you like to create. And even if your art isn’t considered “good art” by anyone else, if you enjoy making it, then just keep making it.”

View more of Leanne’s work on Facebook. We’d love to hear the success, outside of becoming a parent, that has come from your own infertility journey. Share it with us and you could be featured in a future post. Help us bring inspiration and hope to others on their infertility journeys.

Visualizing Health – Krystal’s Story

Today we’re sharing a tiny bit of Krystal’s story via this mixed media piece she created.
She shares with us. “This is what I want my reproductive organs to look like. Unfortunately, my uterus has polyps, my ovaries are old, and polycystic, and I have blocked tubes.”

Larsen-Happy-Uterus-(1)

Happy Uterus
Krystal Larsen
Mixed Media

How would you draw, paint, or sculpt your organs to represent what you would like them to look like vs. what they do?

Elizabeth

 

Advocacy Day Reflections from Jennifer

A few weeks ago I decide to take a last minute trip to Columbus, OH. While there, I was able to interview Jennifer. Jennifer was diagnosed with PCOS and Endometriosis and dealt with years of infertility before a successful IUI and the birth of her daughter, Kathryn. For the past few years, Jennifer and her husband have been trying IUIs again. Below, Jennifer reflects on Advocacy Day and why she makes the trip to Washington, D.C. each year. Thanks, Jennifer, for sharing your story.

Elizabeth

“At first I went because three of my friends were going. I was like, oh, it’s going to be a fun girls trip. I think sometimes I’m a fairly cynical person so I don’t necessarily always think that our voice is heard and that the senator really cares, but going in there and telling them what we need, what we want, and that there is a need for infertility coverage and the adoption credit, I felt so empowered. In control almost. Like I could take back control and I didn’t expect to feel that. It was a lot more emotional than I thought it would be. I think I probably did cry at some point on that day and I didn’t expect that at all. I really didn’t. I’m always sort of using humor as my natural defense and sort of hide stuff so I was really shocked by how emotional I was that first Advocacy Day.”

Jennifer-infertility-advocacy

“One of the things that I came away with the first time I went to Advocacy Day that never even entered my mind was that if, in twenty years, my daughter is infertile for whatever reason, whether it’s her, or her spouse, or whatever, that I could do this for her. It hit me like a ton of bricks. I could fight for her so that she never has to know this pain. So that’s why I keep doing it. More than for myself or for anything.”

“I thought I was going to make a difference for myself. That I was doing it because of my journey and what I went through. I just started thinking about Kathryn and if anything I do on that day can make it easier for her, if she HAS to walk this path, then I’ll go every year, every day, forever.”

 

Twenty-something and Dealing with Infertility

It’s a common misconception that infertility is only a problem for those who wait too long to try to conceive. Today, we’re sharing portions of just a few of the many stories we’ve collected from those diagnosed with the disease in their 20s. This post does contain an image of babies/parenting.

– Elizabeth

 Natalie and Stephan 

Natalie and Stephan focus their energy on putting puzzles together as a way to keep infertility off their minds.

Natalie and Stephan focus their energy on putting puzzles together as a way to keep infertility off their minds.

What are some of the best ways people supported you during your journey?  One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.

What is the biggest lesson you learned throughout the journey?

Natalie: “The big ticket question. I think this is what I struggle most with. Figuring out why this is happening, or what I can learn from all of this. Patience definitely, though, I can’t say that is currently my strong suit these days. Over all, I think trying to ‘live in the moment,’ is a big take away. It’s so easy to get swept into ‘what’s next?’ or ‘what should I have done?’ that I lose the now.  I also think I’m gaining perseverance.

Stephan: “I think learning to be more pragmatic is the biggest takeaway from this journey.  I was so expectant with the initial IVF cycle because so much time and money was invested in it that I think we were both extremely disappointed when it wasn’t successful.  Learning to live within the facts and to not speculate has helped save me the disappointment.”

“I felt alone and ashamed to have to go through this at what was then 24.”

Audrey and Chas

Audrey-and-Chas

Audrey: “One of our biggest challenges was Chas’s anger for not being able to expand our family naturally. During an argument he told me that the reason he was really upset was because we have 2 empty rooms upstairs (we bought a 4 bedroom house in the hopes that they would be filled shortly after we purchased.) I felt alone and ashamed to have to go through this at what was then 24.”

Chas: “This infertility journey is mostly my fault. Not exactly my fault but I’m the one with something wrong. It’s kind of been hard to take. I’ve had my good moments and my bad moments. I’ve had moments where I’ve just blown up and said I can’t do this anymore. Big, huge blow outs. It’s hard when you feel like it’s your fault. I dealt with it on individual terms instead of more of a team effort. When I finally embraced that team effort, everything got a lot better. Although, I still have my days. You just have to go in as a team.”

“The advice I would give to someone who has just been diagnosed with infertility would be, realize it isn’t anyone’s fault. Also, don’t hold it in. Talk to your true friends and let them know that this isn’t something that can just be ‘relaxed’ away, or something you can ‘try harder’ at, this is a real medical problem.”

 

Megan and Jeremy

megan-and-jeremy

Megan: “Through my testing, we found I had a heart shaped uterus, hypothyroidism, PCOS tendencies(but no official change in the labs to get the official PCOS diagnosis), MTHFR, elevated NK cells and cytokines, and blood clotting tendencies/antiphospholipid antibody syndrome that impaired bloodflow to my ovaries and uterus.”

“My RE told me that if my labwork didn’t improve in my next cycle (my FSH just came back extremely elevated while we were planning our 3rd IVF cycle for 2 months later), he wouldn’t let me use my own eggs anymore.  At 28 years old, I took that news really hard.”

“Prior to the IF process, I was completely phobic of needles and there was no way I’d give myself shots.  With the exception of the PIO shots, I gave myself my shots and had IV infusions every 2-4 weeks to prevent my immune system from attacking the babies.  I’d sometimes have to be stuck up to 6 times a day depending on lab work and how easily they’d get the IV.  My desire to have a baby far surpassed my fears.  What other choice did I have? It all seemed small in comparison to not having children.”

 

Art Journaling to Cope with Infertility

I was very fortunate to wake up this morning in our nation’s capitol, where I will be advocating for legislation to help those with infertility. Sara Elliot, our guest blogger this week, was hoping to make the trip this year and was unable, but wanted to share her story with us via the ART of IF blog. Thank you, Sara for sharing your story with us!

Elizabeth

Art Journaling to Cope with Infertility

Many in the infertility community will be making their way to DC this week for Resolve’s Advocacy Day on Capitol Hill.

I can’t be there to advocate this year in person, but I still I wanted to help raise awareness about the 1 out of 8 couples who month-after-month, year-after-year are trying to build their family by any route available to them.

imageLet’s start with this. I never thought that I’d be a person who would “do” IVF. It’s taken a long time to come to terms with the loss of control over my body and my reproduction. With a diagnosis of PCOS and subclinical hypothyroidism, I am now both infertile – meaning we tried to get pregnant for over a year without assistance – and have experienced recurrent pregnancy loss. The combination is so difficult.

Around the time I first went to on OB/GYN to get testing, I found out that it took my grandparents 7 years to conceive my mother, so there is likely a genetic component to what I am going through. I remember my grandma saying, “Our children came along later” but I didn’t understand infertility might be the cause until I was faced with it myself.

For reasons we’re still trying to figure out with our doctor, we’ve conceived four times through assisted reproductive technology – 2 IUIS and 2 IVF cycles – and lost all 4 pregnancies. One was ectopic. One had a heartbeat we got to hear twice.

While going through this recent IVF cycle and loss, I turned to art journaling to process the emotions of this heart wrenching experience. I made a point to draw just a little bit every day, even if all I could muster was a few words in black pen. I’d often fill in the color on better days.

IMG_0005

The art journal is a record of what kept me going, including song lyrics and reminders to take care of myself.

At the start of the New Year, I pick a new word to focus on. This year the word I chose was “Become.” This song by Iron & Wine got stuck in my head for weeks, so “Become the rising sun” has become a phrase I focus on a lot.

image

When we got an unexpected positive pregnancy test in February, I tried to remember to be happy in the moment. I was very anxious, given our history of loss. During this cycle, I saw the trailer for the documentary One More Shot by Noah Moskin and Maya Grobel Moskin. When Maya said, “In this moment, I am happy” I sobbed realizing how hard and necessary it is to grab a moment of happiness amidst all the bad news.

Fear of loss is a very typical response for women who have been through so much to get pregnant. Many infertile women talk quietly about the post-traumatic stress they experience. In the end, the only choice is to surrender, continue to persevere, and to figure out how to rebuild a life that includes more than just a few moments of happiness.

image

 

***

In 2010, my husband and I moved back to our home state of Michigan to be near family as we tried to have children. As the years of trying to conceive and maintain a pregnancy unfolded, an added heartbreak was that if we’d stayed in Massachusetts, our IVF health care costs would have been covered by insurance because state law in Massachusetts mandates coverage for IVF. Michigan law does not. Federal law does not. Money that we’d intended for a retirement account or a child’s college fund was instead spent on medical bills that were uncovered by our health insurance.

And let’s be clear – female and male sterilization is covered by our insurance plan, yet the most effective treatment for infertility, IVF, is not covered. As far as I can tell, the only logic for this policy is cost savings for the insurance companies. No working reproductive systems means no babies which means no hospital births and no well-baby visits to pay for on family insurance plans.

IMG_0003

Despite all of our bad luck, we are lucky that we have some savings to spend on our health care needs. Many couples do not. And frankly, no one should have to spend five figures out of pocket to treat a diagnosed medical condition.

Only laws can change this situation.

Thank you to the women and men who are in DC advocating on our behalf this week.