Killingmesoftly-One woman's quest to survive infertility: July 2019

Monday, July 29, 2019

The Space In Between

The act of labor is a powerful act of creation. The effort it takes both body and mind to bring a new soul into this world is unparalleled. It is not for the faint of heart. It is difficult, but it has a wisdom all it's own, and I realized through conversation with a friend recently that it is rich with lessons that can guide us through this infertility journey we are all on.

As you may know from my last post, none of the embryos we created from our donor in the Ukraine this June made it to blastocyst stage due to sperm issues, which was a crushing blow. Right after I received the news, I jumped into "doing" mode to fix it. I researched new clinics, had skype interviews several times a week with doctors, and contacted my local ivf doctor about ways to improve sperm quality. I got lab orders for tests we needed, got medical records sent to the new clinic, and arranged all the travel for my husband to head overseas for our next attempt. This was all incredibly time consuming and each task felt so urgent. So what have I been doing since I sent my husband off to do his part? Well, I've done.... drumroll....nothing. Absolutely nothing. I haven't contacted the doctor to see how things went. I haven't done any research about fertility topics. I haven't created any new fitness/health routines to prepare me for transfer. I haven't looked at any fertility forums. I haven't obsessed about this round of ivf or worried about the outcome.Some days I've actually forgotten about it most of the day. I've literally done nothing.

Anyone who knows me will tell you this is a huge departure from how I've handled my fertility cycles in the past. Waiting periods felt endless, and I filled the time with mental and emotional busyness. I was constantly on fertility forums. I was always coming up with plans to improve my fertility and health to be ready for treatment. I was always, always stressed, worried, or sad, and I never stopped thinking about my fertility. I think I felt somehow that putting anything less than 110% of my effort and heart into every minute of every day was in some way giving up on my child, or communicating to the universe that I wasn't completely committed to him/her. That somehow my level of emotional pain and stress proved my dedication and worthiness to having this baby; as if I could just will him/her into existence through the sheer act of wanting. Maybe that makes sense to you as you read this, maybe I sound crazy, but in a process that has often felt so out of my control, all the planning, and researching, lifestyle modifications, thinking, obsessing, and worrying made me feel like I was DOING something to bring my child here. As my conversation with my friend turned to childbirth though, I gained some insights and realized that my approach needed modifying. I know childbirth can be a touchy subject for an infertility blog, but let me explain.

I am blessed to have a son via IUI who is three, but bringing him into this world wasn't easy. I went into labor on a Wednesday night, and he didn't arrive here until Friday morning after 42 hours and considerable effort. I discovered though that contrary to the movie version of labor, giving birth is not as chaotic as it seems, and actually has a predictable rhythm to it. Periods of intense effort, pain, and discomfort are followed by periods of rest, relaxation, and yes.. even sleep! This cycle repeats itself over and over until at long last one final push brings the baby into our arms. And that is how it has to be, because to exist in a constant state of effort during a long, drawn out labor wouldn't be possible. The body would tire, the mind would fatigue and rebel, and we would hinder our own efforts. As much as I wanted to meet my son, I had to flow with the rhythm of effort-rest-effort-rest in order to bring him safely into this world.

We are all working to bring our children into this world right now. We are in labor here on our fertility journey. For many of us, it has been a long hard labor, with no end in sight. We understand the effort involved in our labor-we push, we cry, we hurt, we give our all. We are so good at working hard, but most of us don't recognize or embrace the part of labor that is rest, restoration, and renewal so that we have the courage and strength to carry on. Every act of guiding a new soul into this world us to honor birth's rhythm. There will be plenty of periods of pushing and heavy work- picking clinics, rushing to appointments, administering injections, going through egg retrievals, having transfers, surviving miscarriages- but there should also be the spaces in between where we allow ourselves a break. These periods are the two week wait, where we can actually... wait. Those times between cycles where we are grounded by a cyst, or a delayed period and all we can do is wait. Those times when we are recovering from a loss and need to give our bodies time to recover before we can start again. Those are the times in between contractions, where we can quiet our minds, rest our bodies, refill our souls with those things that bring us light and joy so that we can move into our next cycle prepared to push again.

So right now I rest here, in the space in between, secure in the understanding that rest is as deep and meaningful a way to prove my love and dedication to my baby as the effort is. Rest tells my baby that I have faith she is on her way. I am building my strength because I am certain of her arrival. I am preparing myself to receive her.

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My story

Killing me softly. When I think about my secondary infertility journey, I think of the thousand tiny deaths my heart has endured on this path. The silent wounds I bled from just under the surface of my public face. Never enough to knock me over in one day, but rather a quiet, stealthy wave, building loss by loss, until some days, I am swept away by feelings of grief, fear, unworthiness, and hopelessness. Killing me softly.

My heart feels drawn to writing this blog as part of my journey, and I hope that some entries of this blog will uplift and inspire you. But I am in the thick of this, and many days this blog will just be an invitation for you to cry alongside of me. I can’t promise anything from this blog, other than that it will be real, raw, unfiltered. Come and be real with me, and let’s give our pain a voice and find hope together.

PART 1:

My journey began three years ago just after my wedding at age 39. I was so excited to start my family, but I knew my age might be a factor, so I went to a fertility specialist right away, just to get checked out and maybe get a few tips for faster conception.. Instead of the green light I thought I would get though, they told me that I had very few follicles left, and had diminished ovarian reserve. The likelihood that I would have my own baby was poor they explained in their sterile room in their clinical tone, and they sent me out the door with adoption information and instructions to set up an appointment for an IUI if I was determined to try with my own eggs. I cried all the way home and for the next two months until we started treatment. I was absolutely devastated, but IUI was free there, so we went ahead with it one week shy of my 40th birthday. My son is 2 ½ now, and proof that miracles happen.

PART 2:

I love kids. Seriously adore them. I started as a camp counselor in junior high, and was babysitting regularly from the time i was twelve. Children always followed me like the Pied Piper, and were drawn to me in most every setting. I was the cool aunt, the fun friend when my friends started having children. I pursued a career in education, in order to surround myself with the joy and wonder of children and have loved every minute of it. On a personal level, I always knew that I wanted a house full of the energy, chaos, and joy that several children bring. My heart yearned for it on a soul level.

So in November, five months after my baby was born I went back to the fertility clinic to prepare for another IUI. The first one had gone off without a hitch, so I figured we were just a couple who needed a tiny push to get the ball rolling. We were supposed to begin treatment on the first day of my period, but that day never came, and I discovered in January that I had become pregnant naturally. A dream! I was so excited. I started planning the nursery (woodland animals- adorable!). I picked out the cute baby onesie for my son where we would announce on Facebook that his tenure as only child was ending. When we heard the heartbeat at our first ultrasound, I finally told my coworkers and friends and I started planning a joint maternity leave with a friend who was due a few weeks after me. But at the next ultrasound those plans came to a grinding halt and the doctor tried without success to find the heartbeat. Just like that, my little one was gone. I had a D&C. I didn’t order the onesie. I avoided the questions from my coworkers about how the pregnancy was going. I grieved deeply and privately. But I knew that miscarriages happen, and I was resolved to try again when my period returned. In May when my body was finally ready I called the doctor, and they said we could try an IUI again in June when my period came. But it never came, and in early July a beta confirmed I was pregnant naturally a second time. But my beta didn’t double on schedule, and at 5 weeks I miscarried that baby. I cried more tears than I knew I had, alone in my room. My husband is a loving man, but without having heard a heartbeat, the baby wasn’t real to him the way it was to me.

The only way I could think to escape my pain was to jump down the rabbit hole of infertility treatments, so we upped our game and headed to an IVF clinic. We would make embryos and pick the healthy ones to transfer! We would beat biology! We would have our baby! But one year and three retrievals later we were unable to produce even one viable embryo. Our final hope, our treatment of last resort, had failed. My heart had risen and fallen with each new cycle, each new batch of eggs, each new possibility of life, and hope and baby fingers and toes. The rigor of medication protocols, restrictive diets, yoga, acupuncture, and endless appointments had left me broken, distanced from friends, consumed by a singular focus and shrouded by a lingering aura of sadness. IVF was expensive, but my health insurance offered two more free rounds of IUI, so we decided to exhaust that before considering our next options. We decided to start the next cycle when my period came, but… it never came. I was naturally pregnant for a third time, this time at 42. Because less than 1% of women have three or more miscarriages I was overjoyed. I had already had two miscarriages, so this pregnancy would be the one that would stick! Our unexpected miracle. Our rainbow after the storm. I would take a newborn picture of her surrounded by IVF needles. I would show her how wanted she was. I would be an inspiration for older moms wanting to conceive! My original beta was strong, and even though my numbers weren’t doubling, they were on track. The doctor’s office congratulated me! It was happening! Until… it wasn’t. My beta plateaued, and the doctor told me to wait for the miscarriage. I was nine weeks pregnant when I lost my third baby and absolutely broken.

PART 3:

Balanced Translocation. Otherwise known as BT. A previously unfamiliar term for me, that would now define my reproductive future. It meant that some of my chromosomes had swapped places and that I didn’t have complete chromosomes like everyone else. I had all the right genetic stuff, just in the wrong places. This was the diagnosis given to me as part of my recurrent miscarriage workup. It meant that giving the right amount of chromosomes to a fetus would be difficult and unlikely. Multiple miscarriages were the norm, and even though many women with BT eventually go on to have a healthy baby at some point, the BT combined with the age of my eggs meant that my chances were incredibly slim. The words of the genetic counselor rang in my ears. I tried to be funny and cool about it. Inside I was falling apart. My marriage was strained, my friendships had become distant, my hobbies, dreams, and goals had been set aside- all collateral damage of the dream I had been chasing, which now seemed improbable.

So I jumped into support groups. I joined a sisterhood of amazing women, but a sisterhood that I never wanted to be a part of. I grieved the loss of a pregnancy with my own eggs, but I was determined to be enlightened and open to all possibilities. I dove into the world of donor eggs and donor embryos and started to lose myself in the online world of third party reproduction- Frozen, fresh, local, international- website after website, email after email. I scrolled through profiles of beautiful, fertile twenty somethings. I read countless posts from donors, donor recipients, and donor egg children . I researched books to read to my little one to explain how he/she came to be. I fell deeper and deeper into the world of infertility and I rarely came up for breath. It gave me some sense of control as my world was spinning out of control. It kept me company, so I didn’t have to be alone with grief.

So that's where I am now. Unsure of what comes next. I’m committed to having another child, and to giving my son a sibling, but it turns out I’m not ready to let go of the hope of using my own eggs yet. IVF isn't a viable option for a woman my age with diminished ovarian reserve and BT, so I have a few more IUIs planned, and the websites for donor egg banks bookmarked in my browser. My journey has been long and hard, and it isn’t over yet, but know the path I am walking is filled with women just like me and I hope that we can build an invisible but strong web of support. I’m honored to be walking next to all of you, and hope to get to know you and connect with your stories and experiences along the way.