Welcoming the Rain(bow)*

July 12, 2015

Dear Fyodor Rain,

Happy happy six-month birthday, Baby Boy! I can hardly believe that only a short year ago we were shocked to find out that we would be welcoming you to our family in January of 2015. After the storm of infertility, miscarriage, and losing Milo after he and your sister Matilda were born on February 8th 2013, you have been our rainbow—a glimmer of joy after a torrential downpour. In honor of your half birthday, I want to share your birth story with you. A couple of months ago I read that after giving birth, a woman’s brain actually grows and rewires, particularly in the reward circuits, those same areas that respond to things like food and drugs. The changes women experience in their brains lead to feelings of intense emotional connection between them and their babies—the sensation of physically falling in love. No wonder I wish I could relive the day you were born over and over again.

I have to be honest and tell you that preparing to give birth to you was quite the task emotionally. When I was 18-weeks pregnant with Matilda and Milo, finding out he would die either before or at birth, as a result of multicystic kidney disease, cast a shadow of fear in my heart that could never be shaken. At every ultrasound your dad Mark and I held our breath, hoping that the doctor would not tell us that your fate would be the same as Milo’s. With each appointment we got a bit more confident that you truly would make it to our arms.

With January quickly approaching, in November I realized that I really should get my act together in preparation for you. To prepare to emotionally take myself through another delivery after giving birth to Matilda and Milo and having to say goodbye to him after he lived only three hours, seemed simply too hard. I wondered how I would manage if some of the same doctors and nurses were there. How would I cope laying there waiting for you while also remembering the trauma of laying on the operating table with tears streaming down my face waiting to find out if Milo would be born dead or alive? Would you look like him? Did I want you to?

One of the many blessings of your birth was that you would be born in the brand new St. Joseph Hospital in Denver that was opening in December. In addition to getting to welcome you to the world in a new, state-of-the art birthing center, we were excited that we would not be surrounded by the same sites and sounds that were the audience of Milo’s death. However, those hallways, those walls, those rooms—those were the spaces that held our beloved boy both as he lived and as he died. Despite our joy about you getting to be born at the new hospital, part of us mourned the fact that you would not be embraced by the same building as your brother and sister on their birth day. Because of these conflicting emotions about your birthplace, we knew that in order to say hello to you, we needed to say goodbye to the old St. Joe’s Hospital.

I contacted Keri who is a social worker at the St. Joe’s NICU to see if she could set something up so we could visit the rooms we were in with Milo. She did so with grace and compassion, never once making us feel like our request was odd or too much to ask. Because having physical memories and pictures have become essential to us in our mourning, we invited our friend, your godmother, and Now I Lay Me Down To Sleep photographer, Katherine Payne, to come with us in order to document our goodbye.

Although it sounds funny to say, for weeks I looked forward to saying goodbye to St. Joe’s. I think this was because I often long for deep meaningful connections not only to Milo, but to my grief. I wish for those days when I am overwhelmed with emotion over missing him, because on those days, he doesn’t seem so far away. I couldn’t wait to experience the sights, sounds, and smells that I expected would bring me back to those first hours of what it was like to hold him and lose him and mourn him.

In the lobby of the hospital, I sat nervously anticipating what we were about to do. As I waited for Dad and Katherine to arrive, I thought about all that the walls of the hospital had witnessed since its construction in 1961—the patients who succumbed to disease and those who were cured only by the grace of a miracle, the family members who raced to bedsides only to find mere remnants of loved ones they once knew, doctors who saved lives and lost lives, nurses whose feet wore tracks in floors as they moved in and out and in and out of rooms to ensure patients were free of pain, and discomfort, and fear.

Dad and Katherine arrived. We chit chatted and then met Keri and she showed us to the recovery room, Room 14, where we were after Matilda and Milo’s c-section. Here I learned to breastfeed Matilda. Here I held her as she screamed goodbye to her twin brother when he died. On this day Dad and I brought with us a picture of Milo and our 2 pound, 14 ounce (the weight he was when he was born)-stuffed heart. We set up the picture and took turns holding the heart as we walked around the room, grasping for memories and for Milo’s presence to wash over us. The room was smaller but warmer color-wise than I remembered (likely the result of our black and white photos). I stood in the space in the room where Milo took his last breath. Dad sat in the chair where he had rested, broken, Milo dead in his arms. We took some time at the sink and counter where Dad gave Milo his first and last bath and where our nurse Jen and one of the NICU nurses, Erin, stood for what seemed like hours in order to get perfect impressions of Matilda and Milo’s feet so they could be turned into molds we could treasure forever. We also visited Room 224 on the Mother and Baby Unit where we stayed with Matilda and spent our last hours with Milo. I was reminded how foolish I felt at one point when we were there. We kept Milo with us for about 24 hours. We wanted to keep him warm because our thought was that if he didn’t get cold, he wouldn’t get stiff. One of our nurses graciously brought in a warmer for him. When it wouldn’t stop beeping, another nurse came in and told us that keeping him warm actually speeds up the decaying process. I felt ashamed that I didn’t know what was best for my (dead) baby. Today, the room was so tidy, so seemingly counter to those days we were there when the joy of our Matilda was muddied with the death of our Milo.

Saying goodbye to the room where Milo died (Copyright Katherine Payne Photography)

   
Unexpectedly, throughout our goodbye visit I felt myself detaching from the experience. I cried some, but stopped myself from completely coming undone. After all, the day was unfinished, I had things left to do, and I didn’t want to look like a mess picking Matilda up from school. Perhaps out of survival, I began to come out of myself in order to make it through this goodbye that I had so wanted and needed. I felt angry that I didn’t let myself “go there.” In some ways I regret remaining guarded, but as I make sense of this experience today, I try my best to be gentle on myself. Sometimes we must discipline our grief in order to survive.

Maternity Photo (copyright Katherine Payne Photography)

Once we were able to get through saying goodbye to the old St. Joe’s, I was able to get my brain and heart around preparing for your birth. Katherine took beautiful maternity photos of us near the columbarium where Milo’s ashes are buried. I decided I needed to get your birth plan together. I returned to our plan for Matilda and Milo’s birth so I would have a template. Doing so activated my grief and my fear of losing you. I ached as I read the words I had written two years before:

We would like to speak to the neonatal team before birth to communicate our preferences for resuscitating Baby B….Given that Baby B is not likely to survive, we prefer that our doula be present in the operating room to provide us with support and that our photographer be present to capture the few moments we will have together…. Based on our current knowledge of Baby B’s predicted limited lung capacity, we prefer that he receive low levels of intervention to sustain him after birth. Given his exact condition is unknown, we would appreciate an explanation of what is happening as it occurs so that we can make informed decisions. Ideally, he will die in my or my husband’s arms.

I wept for the mother who had written these words. How could she have gone through such an experience without dying of heartbreak herself? I felt ill recounting that indeed the mother who wrote this plan was me.

I desperately wanted to give birth to you naturally. Partly as a result of all our struggles with infertility, I have always wanted to experience a natural birth, to feel the empowerment of working with my baby to bring him or her into the world. I also wanted a different experience than I had with Matilda and Milo, who were born via c-section because they were breech. I did not want the reminders of the fear I experienced during their birth to tarnish yours. But, despite my own wishes, about a month before you were born we learned that like your brother and sister, you too were choosing to be breech. We scheduled a c-section for your due date, January 27th, with hopes that you would turn before then so that we could have a vaginal birth. I tried lots of awkward exercises and meditations to get you to turn, but you seemed to be comfortable where you were. I was sure that you would come on or very near to your due date. Given the miraculous way you came to us, I had no reason to assume that you would be nothing but perfectly predictable, despite others telling me you might come early given you were my second birth.

About two weeks before you were due, I frantically worked to mark things off of my to-do list at work. My plan was to give myself a two-week break to prepare myself and rest before your arrival. I felt good physically, despite being uncomfortable and tired. I was having lots of Braxton Hicks contractions, which was normal throughout Matilda and Milo’s pregnancy and yours. On this Friday, January 9th, I got through all of my work tasks except for giving one of my advisees feedback on a draft of her dissertation. I felt like I was in pretty good shape and looked forward to crossing it off of my list on Monday after the weekend. In the middle of the night Saturday at about midnight though, I started having strong contractions. I used the app on my phone to begin keeping track of them. They were occurring every five to ten minutes and lasting about 30 seconds. We called Dorotha, our doula, to let her know what was happening and decided that we would see how the contractions progressed. They went on and then around 3:00 a.m., they finally started dissipating and going back to intermittent Braxton Hicks. In the morning I woke up early and frantically started cleaning the house and finishing up Matilda’s instructions for care for Leah and Nivea who would be watching her if you came before Nana arrived in a week. We went to church and then continued to get everything organized in case the contractions returned.

I thought I might be in the clear, but that night the contractions came back at about 2:00 in the morning. Around 3:30 I called Dorotha to let her know that they again were around five minutes apart and lasting about fifteen to 30 seconds. We decided that we would give it an hour. I let Nivea and Leah know that this might be the day. The contractions got worse, coming about every three minutes and lasting 30 to 50 seconds. We called Dorotha again; breathing through the contractions I told her we needed to go. I called Nivea and Leah and they started on their way to be there when Matilda woke up. I got up and got dressed and managed to put on some make-up. I know it sounds silly, but I felt so ugly during Matilda and Milo’s birth, that I wanted to feel different this time. I was proud that I only yelled at your dad once as we got ourselves together. I was trying to breath through a painful contraction seemingly unsuccessfully and he said, “Maybe you should…,” to which I snapped, “Don’t talk to me!” Thankfully Matilda slept soundly through all our hurrying. Porter Dog sat uncharacteristically calm and looked worried as we raced around. Nivea arrived and told me I looked beautiful. This made me feel ready. She and Mark worked on getting Matilda’s car seat hooked up into Nivea’s car and I tried to manage the pain as best I could. At 5:30 a.m. we were finally ready to pull away from the house (Dad couldn’t find his wallet, surprise, surprise. Good thing it was already in his backpack!).

We got to the hospital and at that point the pain was excruciating. The contractions were relentless as I told the receptionist that I believed I was ready to have you. Dad and I were taken to a triage room so that a nurse could check to see if it was indeed time and if you were still breech. I already knew the answers to both of those questions. Indeed, I was already five centimeters dilated, which means you were just about ready to make your entrance. And yes you were still ready to enter the world feet first. Because I was progressing so quickly as the contractions got stronger and closer together, members of the healthcare team raced in and out of the room to prepare me for a c-section. If they could not get me prepped for surgery and the spinal epidural in quickly enough, they would have to give me general anesthesia, which would not allow me to be awake during your birth. I remember saying to Dad, “If they put me under, get him on your chest immediately.” I wanted you skin-to-skin, not only because of the medical benefits, but because I didn’t want you to be alone; I didn’t want you to think I had left you. I breathed through the pain as best I could as the contractions happened one right after the other. I believe that I was in what is called transition, right before babies make their way through the birth canal. Just before it seemed as if I might not make it through one more contraction, the team got my epidural in place and the pain began to dissipate.

Dorotha was allowed in the operating room just in time. Before we knew it, the doctors began the surgery, tugging away to birth you from me. With Dad and Dorotha next to me, I felt my eyes well, but not like they did that day Matilda and Milo were born. I pushed the scary sights of that day as far away as I could, but they still stood in the shadows, creeping just a bit. Then at 6:21 a.m. that January 12th day, you were born! Dorotha commented on what a big boy you were. Several minutes seemed to pass. A nurse later told me that you were not breathing right away. Dorotha assured me you were okay. I held my breath and prayed, “please let him live, please let him live,” and then finally, you let out your sweet, sweet cry. You made it, my big little bundle of perfectly healthy miracle.

I got to hold you skin-to-skin on my chest as requested, which isn’t always possible with c-sections. You were red and scrumptious and mine. You had more hair than Matilda but not as much as Milo. You looked a little like me, but did not have the mane of curly hair that I had imagined. You weren’t yet quite the replica of Dad and Matilda that you are today. After I was sewn up, we were off to the recovery room. I remember our stay in recovery being so short, so counter to the hours and hours we were there with Matilda and Milo, preparing for him to die. Even more than the short time, the feeling of pure and simple happiness that filled the air was something I could not quite fathom. Dad texted a picture of you to our family members. You immediately nursed like it was indeed your first supper. I remember thinking, “Wow, this, this is what most people feel after having a baby. Who knew?”

We moved to the Mother-Baby Unit where we set up our picture of Milo so he could be present. Later in the day Katherine came to photograph Matilda meeting you. I decided at the last minute that I did not want Katherine to take pictures at the birth. I had a sudden fear that having her do so would feel too much like Matilda and Milo’s birth and that I would feel an incredible sense of loss over having pictures of your birth that reminded me too much of theirs. So Leah and Nivea brought Matilda to the hospital to meet you. She was hesitant as she walked in the room, Wrinkles the stuffed dog under her arm ready to give to you and her bow with Milo’s special symbol on it in her hair. She climbed in bed with me and shyly but forcefully shoved Wrinkles in your face as you lay in your bassinet. I thought she might remain reluctant; after all, Mommy was in a strange bed and gown, there was an audience, and a camera was following her. But all of a sudden, it was if the pure joy of what it means to get a sibling registered in her little mind, and she could not control her elation. She hugged and kissed you, all the while grinning from ear to ear. She squeezed you tightly as if she wanted, like all of us, to hold you and never let go. We posed with our picture of Milo. His presence in the room at that time was stronger than I had felt in so long. I reveled in the feeling of having you and Matilda and him so close to me. I didn’t want it to end. And that is really how I felt for the rest of our hospital stay. It all felt so magical. So counter to our stay two years ago.

Posing with all three kids (copyright Katherine Payne Photography)

Welcoming you was truly like learning to walk in the rain while a rainbow beams overhead. I was not surprised when I read that a mother’s brain changes after birth. The emotional connection and bond I established with you so quickly in those first hours and days was truly palpable. To feel that kind of love, wow, I feel breathless thinking about it today. The weeks following your birth were hard though as I came to grips with how truly blissful it was. I grappled with the fact that I did not rightly understand the emotional pain I had been through when Milo died on his birth day until I felt it contrasted with the elation of yours. At times I felt an undeniable sadness over knowing even more clearly how much pain we had suffered. Because it was challenging for me to allow myself to feel the excitement of welcoming you that I had not ever before experienced, I felt myself grasping for the pain that was more familiar to me. I wept over the thought of not knowing if you will be my last baby—that after six years of trying to get pregnant, of losing babies, and profound grief, it all might be coming to a close. What will I do with myself if there are no more ultrasounds, if there is no more hope of actually getting to experience that natural birth, and if there is no more feeling what it is to fall deeply in love at first sight?

These questions will linger for me as I move from birthing you to raising you and Matilda, as I continue to learn what it means to be a mother to Milo without physically holding him ever again. Part of me reads this letter wondering whether I should protect you from the honesty with which I have written your birth story. I want you to know that I share these truths with you so that you might grow to learn the profound love that accompanied you here. Often times the world will expect you to keep your pain hidden, to highlight only those moments that are rid of shame, and sadness, and heartbreak. However, my hope for you my dear Fyo, today and always, is that you will learn that these feelings are just as precious, just as beautiful, and just as true as that love that came falling out of me and into you on the day you were born.

All of my love, Mommy

Fyo five days old (copyright Katherine Payne Photography)

*A modified version of this article was published originally in Now I Lay Me Down To Sleep's 10th Anniversary Magazine.

A House is a Home

I said goodbye to our home this morning after moving into a new house this week. 3060 Cherry St. held us during our darkest and brightest of days over the last six years. I will forever miss you, my friend. I wrote this poem while I sat pumping in Matilda's room before saying goodbye.

Ode to You

I sit here pumping breast milk, ree-ert, ree-ert, ree-ert
In this lilac room
That I thought I might never fill
In this home who held me
In the dark and in the light

I say goodbye to this space where I sat rocking, creak, creak, creak
Preparing myself to say a welcome-goodbye to her and him
On sleeplessness I sat where one crib would not stand and the other would weep 

Outside the door his dog teeth marks gnaw, gnaw, gnaw
I sat waiting for shots leading to broken babies and crying hearts
And then like magic perfection he sprung

In a minute I will bag this milk, slosh, slosh, slosh
And say goodbye to this room, to this house
And thank them for holding us tightly nightly yearly
Asking them to forgive us for filling them so full that we must bid them farewell.


As I drove away, I rolled down my window and listened to this song, "A House is a Home" by Ben and Ellen Harper, a beautiful collaboration between mother and son.  

3060 Cherry St.

Matilda's empty bedroom

"But how could you live and have no story to tell?" - Fyodor Dostoyevsky

Part of the pain associated with losing a baby includes not getting to use his or her name. For many parents once a name is selected, a baby becomes more permanent in the mind’s eye. A name allows parents to begin to picture themselves yelling, “Matilda Plum stop climbing on the couch!” or imagining family and friends’ squeals of approval when finally hearing the secret name “Milo Juniper” after the baby is born. Perhaps most importantly, naming a baby is one of the very first parenting acts that shapes who a child will be for the rest of her or his life.

On January 12^th, 2015 we welcomed our son who we named Fyodor Rain. We chose the middle name Rain for a couple of reasons. As I wrote in a previous post, a rainbow baby is one who comes after the loss of another child—a glimmer of hope in the face of a dark storm. The name Rainbow was out of the question, but Rain seemed a perfect reminder that there has been such beauty in our darkest of days and the losses of all of our babies. Additionally, as Matilda and Milo’s middle names are both trees, we wanted this new baby to have a tree name too. The Rain Tree or the Albizia Saman is a gorgeous tree whose leaves fold in during night and rainy weather—a reminder to hold one another tight when things get dim.  

The name Fyodor first came to us about five years ago. We were hoping to get to use it for one of our three embryos resulting from our second IVF cycle. When we lost Baby Willer after that cycle, we held on to the hope that someday our Fyo would come to us. Because we thought Milo was a girl our entire third pregnancy (and Milo was one of our girl names), we did not plan to use Fyodor. When we found out Milo was a boy, we discussed whether we should switch his name. However, he had been Milo throughout almost the entire pregnancy, and so it just didn’t seem right to give him someone else’s name. I promised Mark that if we ever had another baby and he was a boy, we would name him Fyodor.

Fyodor is a Russian name meaning “God’s gift.” We pronounce it “fee-ah-door,” like the American name Theodore. We call our sweet little guy Fyo ("fee-oh") for short. The name is a nod to the Russian novelist Fyodor Dostoyevsky whose most famous books include Crime and Punishment and The Brothers Karamazov. Our admiration for him springs from a chapter in Philip Yancey’s book Soul Survivor.¹ Yancy details the life of Dostoyevsky in comparison to another 18^th century Russian novelist, Leo Tolstoy, who wrote War and Peace and Resurrection. Yancy uses the lives of the authors to illustrate the depths of grace, forgiveness, compassion, and love.

Both men longed to please God; however, their paths were very different. Tolstoy’s philosophy was that the way toward God was to live perfectly according to the laws of the bible. However, he advocated a life of chastity but his wife had 16 pregnancies; he vowed to give up meat and his servants, but never actually did so; he helped others but never offered to give his wife a break from her laboring. No one was more critical of this failure to live up to his own and the perceived ideals of God than Tolstoy himself.

Dostoyevsky was not a perfect man either, implicated in such immoralities such as gambling, infidelity, and alcohol abuse. He was accused of treason and sentenced to death. At the last minute, the tsar pardoned Dostoyevsky and sentenced him to four years of hard labor. He then spent six years in exile. As a result of his pardoning and an unexpected second chance at life, Dostoyevsky committed himself fully to God. Despite dreadful conditions, during his time in prison he went through what Yancy calls a virtual resurrection. He was able to glimpse Christ even in the most vile and hateful prisoners and in those who extended him kindness while he was there. He came to believe that it is only through being loved that one is capable of it. It is this grace that Dostoyevsky conveyed in his greatest works of literature.

Yancy uses the stories of Tolstoy and Dostoyevsky to illustrate how he came to understand how we, as terribly imperfect beings, can possibly live according to the bible’s seemingly unobtainable ideals. Yancy writes: “There is only one way for us to resolve the tension between the high ideals of the gospel and the grim reality of ourselves: to accept that we will never measure up, but that we do not have to. Tolstoy got it halfway right: anything that makes me feel comfort with God’s moral standard, anything that makes me feel, ‘At least I have arrived,’ is a cruel deception. Dostoyevsky got the other half right: anything that makes me feel discomfort with God’s forgiving love is also a cruel deception….God loves us not because of who we are and what we have done, but because of who God is. Grace flows to all who accept it.”

As self-acknowledged perfectionists, these words and the novelists’ stories are so very meaningful to Mark and me. My desire to be good and do good have been functional for me; I have enjoyed much success. However, such pressure at times has been debilitating. I’ve laid awake uncountable nights fearing how I will ever meet a deadline or about how I’ve let someone down. Like many people who can’t get pregnant or have lost babies, I have constantly questioned what it was that I did that made me a worthy recipient of so much pain. My feelings about my imperfect body and its failings are very well-documented in this blog. But at the time I read Yancy’s chapter and even today, I am reminded that I am not perfect and I don’t have to be. My pain isn’t the result of my misdeeds or my inability to measure up. As I get some distance from my most painful of days, I get better at choosing to accept grace.

There is no doubt that our son we be imperfect. He will make bad decisions, at times disappoint us, and likely will be heartbreakingly hard on himself. As he gets older, we hope that our sweet Fyo doesn’t hate us for choosing such an unconventional name. People will inevitably mispronounce it and mistakenly think he said “Theodore” instead of “Fyodor” when he tells them his name. Others will avoid saying it all together out of fear of getting it wrong. When he fails and when these things happen, hopefully he is reminded of Tolstoy and Dostoyevsky and that he and others are not perfect, nor should they be. In so doing, our hope is that he learns the meaning of grace.    

Copyright Katherine Payne Photography

¹ Soul Survivor: How Thirteen Unlikely Mentors Helped My Faith Survive the Church by Philip Yancy is an inspiring book. It details how historical figures such as Martin Luther King Jr., Annie Dillard, and Mahatma Gandhi helped Yancy reclaim his faith after growing up in the shackles of a fundamentalist and racist religion.

ARTiculating Compassionate Care: For O.B.

I have wanted to talk about what I do for a living on my blog, as it has come to be a main avenue toward helping me cope with my infertility and losses. I am a professor of interpersonal and family communication. In part my job involves research, which includes conducting research studies and writing research articles. In this post I would like to share the story of how I came to the idea for the first study I conducted on infertility. I will also share the article that is being published—a different type of art than I have typically shared on my blog.

In the fall of 2010 I was grieving the loss of our first baby O.B. to miscarriage. I was devastated and desperate to find a way toward redemption in the face of O.B.’s death. As a researcher interested in how people communicate in the face of difficulty, I became fascinated with the way I was treated during my infertility care. As a patient I was mortified by this treatment. And so began my quest to do something positive in O.B.’s name and to help myself heal at the same time. In this first study, I investigated compassionate care.

I admit that my interest in this topic has to do with the lack of compassion I have experienced during my own treatment. I have been wanting to share some of my horror stories for a long time but haven’t done so in defense of those who, despite their lack of compassion, are still a part of my journey, still the people who helped me bring my daughter home. Despite what they have done to injure my identity and esteem, I slowly have come to realize that much of the reason for their mis-care isn’t because they are bad people, but because they function in a system that places a number of roadblocks between themselves and patients. Among others, these include a privileging of quick patient turnaround, lack of insurance coverage for infertility care, and the absence of training that teaches providers how to communicate with patients in caring and compassionate ways. So I share some of my worst treatment experiences here not as a means of defaming my providers, but rather as a means of calling attention to a system that is in severe need of restructuring. I like to think that O.B.’s research study on compassion was a small step forward addressing this need.

The very first infertility appointment I ever had was a doozy. I made an appointment with my OB/GYN because we were trying to get pregnant but I was having cycles that were between 40 and 70 days long. After weeks of waiting for an appointment, I sat anxiously in the waiting room amongst a dozen pregnant women and piles of pregnancy and parenting magazines. I was an outsider. When my name was called, a nurse I’ll call Barb took me to a little room for more waiting. I could hear everything the doctor was saying to the pregnant couple in the room next to me. Barb came back in and started asking questions. “Your chart says you run?” I knew what she was implying as she looked my small frame up and down. “Yes, but only a few miles at a time right now.” Her retort was, “Well maybe you should stop off for some ice cream half way through.” She left the room and I was left feeling disciplined. Finally, the doctor came out of the room next door and I could hear him whispering with Barb. She told him I was waiting. “Oh my infertility patient is here!” he exclaimed. My first thought was, “Oh great now I have to wait for him to see someone else.” But then I realized the “infertility patient” was me. I seemed to be the last to know. Barb then went on whispering, giggling that she told me I should eat some ice cream on my runs. He entered the door to my room boisterously. I had been keeping track of my cycles with a computer program and had my brightly colored graphs to show him. He scoffed and told me I could throw them in the garbage, as they would not be helpful. He took away all my efforts at trying to control an uncontrollable situation. We talked awhile and he was finally getting to what we could actually do to help me get pregnant when his pager went off. He left the room and came back in and apologized and said he had to leave to go deliver a baby. He said not to worry because, “Soon it’ll be your baby I’m off to deliver!”

After trying Clomid a couple of times to no avail, this same OB/GYN offered me the opportunity to participate in a clinical research trial. The study included wearing a GnRH patch for a full cycle. The purpose of the patch was to induce ovulation as a means toward pregnancy. He convinced us that participating in the study was a great deal as we would be able to have a number of tests and get lots of information about what was going on with my body for free. Unfortunately, it was anything but advantageous. The patch was not like those bandaid-like estrogen patches used in many infertility treatment cycles. This patch had a plastic battery-pack type thing attached to it. I wore the patch on my upper arm all day every day. Every hour and a half it would release the GnRH in 10-minute intervals. The release felt like bee stings. For 10 minutes straight. Every hour and a half. All day and night. For a month. I felt like I was being stung because the patch was literally burning my skin. A research nurse monitored me closely and I can remember her taking pictures of the burns and how other nurses came in to gawk at my arms. Because of the burns, the nurse had me move the patch to my stomach. My stomach then quickly had burns all over it. Despite this torture, never once did anyone step in and remove me from the study. You might wonder why in the world an educated person who is well-versed in the ethics of research would allow herself to continue down such a painful path. But the answer is actually quite simple: You tell a woman desperate to have a baby that there is a chance, and she is willing to do anything. Not only did I not get pregnant, but the doctor never gave us all that information he promised.    

Another one of my worst experiences with infertility care came on the day when I had my second miscarriage. I was experiencing a lot of bleeding and so one of the nurses at my clinic had me come in right away. As my reproductive endocrinologist performed the ultrasound to check in on things, he barely said anything. When he was done I asked if he could see the baby and he tersely said, “We’re going to talk about that. I have other patients who are here. I hope you understand that.” And he left the room quickly. We were speechless. As we sat waiting to have some blood work done, a really cute pregnant drug rep was talking to one of the business office workers. They loudly discussed how great she looked and how the pregnancy was going. A little later we were back to the main waiting room and waiting to meet with the doctor. The cute pregnant drug rep had made her way to the receptionist who was also pregnant. Cutie launched into how ugly maternity clothes were and how she was just making regular clothes work for now. I sat there miscarrying my baby, without knowing if that was what was really happening, while listening to women discuss the clearly dismal perils of pregnancy.

Unfortunately, these are just a few examples of the abhorrent care I have experienced on my infertility journey. To this day I feel a bit ashamed that I allowed myself to be treated in such ways, quietly taking it like the good girl who respects authority that I am. Why would I want to do anything to piss off someone who had the power to help me get a baby? At the clinic where I received most of my care, I felt stuck. I stayed through three IVF cycles because my doctor offered us a reduced price after each cycle that did not end in a live birth. As he put it, we did not receive a return on our investment and so he was willing to cut us a break.[1] Because our insurance does not cover any type of infertility treatment, we sacrificed our desire for compassionate care for thousands of dollars in savings.[2]

When thinking about what kind of study I might do for O.B., my initial idea was to figure out what compassionate care really looks like in hopes of being able to offer providers insight into how to treat patients as opposed to simply providing lip service to compassion as a selling point.[3] I also wanted to investigate how doctors' compassion impacts patients’ treatment, psychological, and relational stress because I wanted to show that providers’ treatment of patients matters on a number of levels. So that is what I did, surveying about 200 women. I won’t get into everything I found in the study here. If you are so inclined, here is the link to the article. There should be 50 free copies of the full text article. If you are not able to see the full text and would like to, please feel free to email me at ewiller@du.edu.  

http://www.tandfonline.com/eprint/kgd8bqMbzMeckeATKp9H/full

This study doesn’t address or fix all that is broken about infertility care. However, I do think it makes a small potential step toward the type of treatment that acknowledges, respects, and reduces suffering during what is often the most traumatic time in infertile couples’ lives. For this I am proud and find great meaning in O.B.’s short, nine-week life.

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[1] I often felt guilty about being given a break, but it helped that our doctor parked his Porsche in the patient lot right in front of the building.

[2] This thought is heartbreaking, as our situation is not unique. Only 15 states in the U.S. require some sort insurance coverage for infertility. Along these lines, important to note is that my privilege allows me to be able to afford assisted reproductive technology, as the majority of infertile couples in this country cannot even dream of affording such care be it compassionate or not. 

[3] My clinic lauded compassionate care as part of its mission statement.

Somewhere Over the Rainbow

Somewhere over the rainbow

Way up high

And the dreams that you dreamed of

Once in a lullaby

Someday I'll wish upon a star

Wake up where the clouds are far behind me

Where trouble melts like lemon drops

High above the chimney tops

That's where you'll find me

Oh, somewhere over the rainbow bluebirds fly

And the dream that you dare to,

Oh why, oh why can't I?

A “rainbow baby” is one who comes into a bereaved family’s life after losing a baby through miscarriage, stillbirth, or death of a newborn. As rainbows represent renewal in the face of a storm, rainbow babies too represent hope in the midst of the despair of losing a child. Hand in hand, rainbows and rainclouds are reminders that there is beauty in life and loss.

Eighteen months have passed since Matilda and Milo were born and he died. After the babies came to us, we didn’t know if we would want to try again for more children. The extent of what we went through to get to bring Matilda home was obviously colossal. We soon recognized though that she is worth every second of the pain we have endured. The realization that we wanted more kids came to us relatively quickly, but figuring out how we would get there was more of a challenge. We met with our reproductive endocrinologist and fast decided that we had to let him go. We then interviewed a couple of others at different clinics and were ecstatic to find one who extended us the care and compassion we have always wished for and deserved. Saving money for an egg donor IVF cycle is no small feat, so even though we found our new doctor, we agreed that we needed time. We also thought it would be beneficial to wait until spring or summer of 2015 because that would make Matilda about three-years old when the baby was born. With a plan in place we went on with our lives, adjusting to an ever-growing toddler, learning to balance being working parents, and still grieving our precious Milo. But then as painfully and excruciatingly as our babies were taken from us, our rainbow baby as gracefully and quietly entered our lives.

In April my first cycle returned after weaning Matilda from breastfeeding. I offhandedly asked Mark one night what he thought about trying to get pregnant on our own. He nonchalantly said “yeah, we can do that.” We joked about being one of those couples that magically get pregnant after years of infertility and loss. So we sort of gave it a shot that first month. I downloaded an app on my phone to tell me when we should do it. Things got busy, I got tired so my grand plan to try to get pregnant was quite simply half-assed. Some time went by and 30 days later I had some spotting, which I thought was my second period. I was thrilled because I never have normal cycles and thought maybe my body had figured out how it should work after all of the hormones of pregnancy and breastfeeding. A couple of weeks later though some more spotting came, which was strange because the only time that ever happened was during my pregnancies. And then I was nauseous. I hesitantly decided to buy a pregnancy test. Mark was in the car when I bought the test; I told him nothing about my suspicions. I was acting strange all day and finally he asked what in the world was wrong. I confessed. We did the test and waited. When it was time, I looked at the test and immediately said, “Yeah not pregnant…but they should really make that line more intuitive so people don’t get confused.” I had never had a positive at-home pregnancy test before. Mark snatched it from me and said, “No, it is,” as if to say, “No, it is pregnant,” but I don’t think he could say the word. It was too scary. We sat there shocked. For a long time. Even after taking a second test. I was already six weeks along. Although my mind was in denial, I think my body knew from very early on that I was pregnant. There were a couple of strange incidents. One night right around the time the baby would have implanted, I was startled awake by a very quick sharp pain and I thought, “that was the baby.” Another night, I dreamt (embarrassingly) that I was giving birth to raspberries (Matilda’s favorite food).

I am 17 weeks pregnant this week. We had our appointment with the perinatologist for the first time last week. The anticipation and appointment were full of post-traumatic stress. This was the one where we found out Milo would die last time. But like magic, the ultrasound revealed that the baby is developing normally. And he’s a beautiful boy. Just like that, all is perfect. No selecting an egg donor, no saving thousands of dollars, no months upon months of stressful IVF, no heartbreaking news. Just like the most breathtaking rainbow you could possibly imagine.

Every day I struggle to get my mind around how this is happening. Writing this post is challenging, as I don’t easily have the words to describe what this experience is like, so counter to all those pregnancies of the past. I am so very thankful but so full of questions. Why did this happen now? Was I finally good enough? Am I a martyr to the cause of infertility and loss who finally gave enough to be deserving of a break? I never begged for this miracle, never so much as gently requested it. I am proud to be infertile, proud to be a mother of angel babies. My journey has made me stronger and more giving than I ever could be without it. I never wanted to be one of those women bragging about getting pregnant if their husbands so much as breathed on them.

Despite my questions and my uncertainty regarding why and how this is happening, there is one thing that is very clear to me: Without one doubt this baby boy, this miracle, this rainbow baby is a gift from our Milo. There is simply no other explanation. Despite my incredible fear, I feel him with me more so than I ever have before, telling me, “this is your time, Mama” and “everything is going to be okay.” And so hand in hand I walk, with my heartbreak and my hope on my way to what could possibly be my brightest days ahead.

   

Photos taken by my dear friend Gloria Soliz in Estes Park 8-17-14