Our First Christmas Eve with a Living Child

Today, as a little Christmas gift of sorts, Hannah learned how to clap and army crawl. We are filled with wonder every day as we watch her learn and grow.

And of course, we miss her sister and wonder so many what ifs, even though we'd make the same decision over and over again if we were faced with it. We wish she hadn't been sick.

And as people with infertility, we are acutely aware that there are so many people out there still longing for their families to grow.

We said goodbye to Grace right before Thanksgiving 3 years ago, and are also acutely aware of how hard holidays can be. We have future years that will likely be very very hard for us, after we say goodbye to our parents, for instance. A few friends are facing their first holidays without their fathers this year and it's utterly heartbreaking.

But for us, after 6 years if trying, this holiday season is overwhelmingly a good one, and we are so, so grateful.

Whatever you celebrate (our own beliefs have shifted a lot over the past few years), we hope you feel at least a little love and peace.

How We See Mother's Day, and How I Approached It

For most of my life, Mother's Day has been a nice day. My mom is amazing, as is my Mother In Law, and I've enjoyed celebrating them and looked forward to eventually being a mom myself. But 3 years ago it became less enjoyable:

4 years ago we had just started trying to have a child, and I was looking forward to the next year hopefully being either my first Mother's Day, or at least being pregnant.

3 years ago we had been trying for a year, and had just learned that we suffered from Infertility. I was optimistic that Assisted Reproductive Technology could help us conceive a child, but was disappointed that we had hit these bumps in the road.

2 years ago we had suffered a miscarriage at 9 weeks of pregnancy, and were upset on Mother's Day.

Last year we were optimistic because we had 2 embryos to attempt to get pregnant with, but also tired and sad: what we had hoped would be an easy process had turned into a long journey with far more downs than ups.

And this year, we're grieving the loss of Grace, who passed at nearly 6 months of pregnancy after we terminated for medical reason after learning she had a fatal disease, and the fact that we didn't get pregnant with our last embryo. We have no idea what we're going to do next.

A friend shared the following picture with me, which reminded me that I'm not the only one that has mixed feelings about Mother's Day, and finds it to be as sad as it is happy.

I really liked this, as it acknowledged that mothers and motherhood are complex, and it acknowledged those that don't find the day or experience to be as easy, carefree or joyous as society often likes to paint it. Any time we shine a light on what is 'real' vs just the surface, I like that. This isn't of course to say that there aren't many that love Mother's Day, and that mothers don't deserve to be celebrated; I enjoyed celebrating my mom and mother-in-law very much. But it acknowledges that not ever experience with mothers and/or motherhood is happy.

As for me, I celebrated by getting my first tattoo. I never really intended to get one, but this felt right, and it felt good to get it on Mother's Day for a few reasons:

1) It was a good day for me to honor that I AM Grace's mother, even though she isn't alive, and that I 100% made the decision I did for her out of love and a desire to see her experience as little pain and suffering as possible.

2) To note that while Grace didn't get to live outside of me, she absolutely mattered and leaves an imprint and impact far longer than her brief experience was.

3) To honor my own mother. She had talked frequently about wanting to teach Grace cursive when she was old enough, and this is in my mom's (amazing) handwriting

4) To always have Grace in my arm(s). She is now there, as permanently as I can arrange it.

5) To more broadly remind me to try to act as gracefully as I can. To be kind, forgiving and accepting of my own imperfections. To basically treat myself as I would have treated Grace. I think we all struggle with that.

I hope that everyone's Mother's Day was as happy and peaceful as possible, and for those that had harder ones, for any reason at all, I held you in my heart and continue to do so.

Guest Blog: Celeste's Heartbreaking Experience

As I explained in my last post, Jim and I don't currently know what to do. Do we try IVF again? Explore adoptions more? Try donor eggs? Do we not try to have children anymore?

It all sounds simple summarized there, but we need a break while we sort all of this out. I will still be around for any questions and comments but for a bit I'll be sharing some guest blogs by wonderful men and women that have offered to share a glimpse into some of their most painful experiences in the hopes of sharing helping others. 

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Let me introduce you to Celeste, a dear friend of mine through the infertility community, who unbelievably lost both of her twins after conceiving via IVF. She had already suffered years of disappointment before this happened. 

After losing the first twin at 8 weeks, Celeste's second twin, a girl named Rosa Kimberly, was diagnosed with multiple congenital anomalies. Because there was a chance Rosa might make it, Celeste and her husband decided to carry the pregnancy and planned for her to have multiple surgeries after her birth. Unfortunately, Rosa died in the womb at 30 weeks and 3 days, and was stillborn the next day. 

I talk a lot about how important it is that Jim and I had the choice to terminate our pregnancy when we did to save Grace pain, and it's just as important to me that Celeste and her husband had, and continue to have the choice to do what they did. Every family should be able to do what is best for them and I 100% support Celeste and her husband's decision and am so touched by her sharing her experience.

Here is Celeste's account of that experience, which is as beautiful as it is heartbreaking:

I Gave Birth to an Angel

I have been thinking about this moment & experience nonstop since it happened. But I haven't been able to find the words to adequately express the power and love within. I'm going to try now to tell the story. I hope I do it justice.

Friday, May 29, 2015 will forever be a sad, dark day. It is the day that we found out about Rosa Kimberly's fetal demise. Once Dr. Moldenhauer confirmed that Rosa's heart had stopped, she was silent for a long while. I knew what she was going to say, but waited for her words. Finally, she said, "I'm so sorry..." 

I turned on the exam table to face my husband, and curled up in a ball. The tears streamed down my face and my voice was trapped in my throat. Then the wailing started and John and I wept as the doctor and nurse excused themselves from the room to give us some privacy. 

When the doctor came back in, she spoke gently to us about our options. I had to deliver the baby. The safest, healthiest way for me was a vaginal birth rather than a C-section. I flashed back in my mind to the appointment two weeks ago with Dr. Martinez. He confirmed that Rosa's birth would be a certain C-section with the only exception being if she were to pass away in the womb. I remember thinking, 'God forbid that ever become an option,' and then stuffing the fear and horrible scenario away in my mind. How could this be happening? 

As the doctor spoke to me, I kept thinking of the scene in "Divergent" when Tris is in the simulation. She's trapped in the glass case, and it is quickly filling with water. She snaps out of her panic and the world seems to float along in slow motion as she looks at her reflection in the watery glass. Her reflection looks back at her and says, "This isn't real." She taps the glass with her finger and it cracks. Calmly and peacefully, she taps on the glass until suddenly, the glass shatters and gives way to the weight of the water. 

We settled very quickly on a vaginal birth, and now the question was when to start the induction. I had taken my prescription of Lovenox about six hours earlier, so the doctors wanted to wait for the medication to clear from my system. I told the medical team that I didn't want an epidural or any pain medications, but they insisted that we wait just in case I changed my mind. We were offered the chance to go home and gather our things, or to stay at the hospital. The thought of walking around with my daughter's lifeless body inside of me... I just couldn't bear the thought of the world going on like nothing had happened when in actuality our world would never be the same. We decided to stay at the hospital until it was time.

We were taken from the triage room to a delivery room at the end of the hallway. Dr. Ntoso told me to eat a good meal. I would need my strength. But food turned my stomach, I was too upset to eat. I managed to eat chicken noodle soup and part of a soft pretzel.

John called his parents to tell them the awful news... I called mine. I could hardly say a sentence without sobbing into the phone. My mother cried back on the other end of the line as she made sense of what I was saying. She said they'd be there soon.

We spoke to Dr. Cole and went over the plan we made just two days before. The "palliative care plan" just incase the unthinkable happened. Did we want to take pictures? Did we want to make momentos? Hand prints, cut locks of her hair... When we made the plan, I had hoped to never see it again. Then Dr. Moldenhauer called to tell me that we would plan to meet Rosa on June 24th. But now that wouldn't be happening...

My parents & sister arrived while we were talking to Dr. Cole. They said hello, and then we told them we'd get them when we were done. Honestly, I can't remember much of what was said. I felt like I was in a fog.

My brother came up and brought me a picture that my nephew made. Dr. Ntoso came in at 8:00pm to give me the first dose of misoprostol. I felt mild contractions within ten minutes. My family left around 9:00 or 9:30. I was sleeping by 10:00pm. The nurse and doctor came back in at midnight to put in the next dose. I couldn't fall back to sleep, so around 2:00am I asked for an Ambien. The plan was to get two more doses of the misoprostol at 4:00am and 8:00am, but I woke up at 6:00am and the nurse told me that they decided to wait because my contractions were too close together.

At 9:15am on Saturday, the doctor put in the next dose. Again, I felt mild contractions within 10 minutes. At this point, my cervix was 70% effaced and 2 cm dilated. My parents, sisters and brother all came back to be with us. I called Father Bruce to tell him what was happening, and he said he'd come around 1:30pm. My best friend, Kim, drove up from Virginia. My best friend, Kristen, came too.

The next dose of misoprostol was put in at 1:15pm. The contractions started to become much more painful, but I was able to manage them by breathing through them. I sat on the birthing ball, and held onto the side of the bed. I started feeling nauseous and as I mentioned this to the nurse I said that I should probably have a puke bucket nearby. Actually, I need one RIGHT NOW. The second it was handed to me, I got sick. I told the nurse that I wanted some anti-nausea medication. I could deal with most physical pain, but nausea and vomiting bring out the wimp in me. I got some zofran and as it was dissolving under my tongue, I felt the nausea creep back.

Kim took a deep breath and said, "So what mile are we on?" She was referencing a marathon because she knows how meaningful that is to me. I mumbled, "I don't know," while reaching for the puke bucket and vomited again. So much for the zofran! Kristen went to tell the nurse, and they gave me an intravenous version of the medication. The nausea went away almost instantly.

Father Bruce arrived around 2:00pm, and everyone cleared out of the room so John & I could talk to him privately. I told him that I might not be able to participate in the conversation too well because the contractions were getting intense. It wasn't long before I think I scared him! He said that he was present for his wife's three C-sections, but this was the first time that he was ever in the room with a laboring woman. I'm sure it wasn't pretty to witness! He & John eventually left the room, and the nurse stayed with me.

I went back and forth between the birthing ball and the rocking chair. At some point, I think my water broke. That was a surprise to me because there was no amniotic fluid detectable over the past six weeks. The contractions were so intensely painful. I started to wonder if I could do this without medications. I had no idea that I was in active labor at this point. I just knew that it was extremely painful.

The midwife checked on me at some point within all this. I was 80% effaced and 4 cm dilated. She apologized saying, "I know you probably hoped to be farther along." I hadn't really hoped for anything... I had no expectations for this experience. The only thing I had invested my hope in for the past three years was already gone.

Father Bruce came back in the room and said a blessing over me and the baby. The contractions made it very hard to focus, but I'm glad he was there to do that for us.

John & I stayed in the room alone from this point with the nurse & midwife coming in every now and then to check. John tried to comfort me, but nothing made me feel better. He asked me questions. I couldn't answer except in one word responses. "Water." He came running to my side with the water mug. I got up from the birthing ball and walked towards the bathroom. He came running over to move my IV pole. He was trying so hard to take care of me, and find out what I needed and wanted. I couldn't respond to him. I was so focused and concentrated on each contraction.

I felt like I had to push, but I wasn't able to verbalize it. I thought it might help to use the bathroom, and that's when John realized that he had to get the nurse. The midwife came in and said that she would check me. She said very calmly, "You are about ready to go." There was a lot of commotion around me as the nurse assembled the instrument table and the doctor came into the room. Jessi, the midwife, told me to try to breathe through the next two contractions to allow my cervix to get completely ready. I wanted to push very much, but tried to breathe it out.

Finally, Jessi said to push. She was so calm and serene. Pushing felt like a relief. The contractions almost seemed to disappear. Now the pain was entirely focused on the baby trying to come out. The time in between contractions and pushing seemed to stretch on for a long time. I winced from the pain, and Jessi assured me that it was ok, that it was just stretching. I sat with the pain and accepted it for what it was. It was uncomfortable and peaceful at the same time.

The room was so quiet. The nurse held one leg back and taught John how to hold the other. I looked to Jessi for direction. She quietly told me what to do. The look in her eyes was serene and sympathetic.

Rosa was breech, so her butt came out first. John decided not to look, but was asking what it looked like. Jessi explained that it looked like the baby was crowning, but instead of her head, her butt was poking out. I said, "She's butting." John misheard me and thought I said, "She's budding." That way was much better <3

After about four pushes, her butt, legs, and body were out. Just a few more pushes to get her head out. On the next push, I felt a woosh as she slipped out. It was the most incredible, indescribable feeling. John cut the cord, and the doctor and midwife explained to him that the placenta still had to come out. They said it could take 30-45 minutes more. But with the next contraction and push, it came out. All of the pain stopped. The nurse handed Rosa to me, and I just marveled at her beauty. She was beautiful.

It was such a peaceful moment. I couldn't believe how sweet her face was. Her skin was so soft. I wrapped her little hand around my thumb and stroked her cheeks with my finger. She was so perfect.

The world kept whizzing on, I'm sure, but for me, it's like the world stopped in that moment. I am still stuck there. I think I will be for the rest of my life. I gave birth to an angel. I can't wait until the day comes when I can join her in heaven. I love her so much.
 

Are We Going To Try Again?

Four years. That's a long time. That's a bachelor's degree. A presidential term.

That's how long we've been trying to have a child.

It's included a lot:

• 3 fertility specialists
• 2 rounds of intrauterine insemination (IUI) with Clomid (a drug that turns me into a wildebeest)
• 2 reasons for infertility diagnosed
• Literally hundreds of shots in my abdomen and rear end
• 2 rounds of IVF, resulting in 29 eggs total
• 3 intralipid infusions
• Literally dozens of pregnancy tests

An intralipid infusion

A bruise from one of my shots in my abdomen

The progesterone shot that goes in my rear every day

Just one of my shopping trips to get pregnancy tests. These are cheap and pretty decent, btw.

As a result of all of this, we got 4 total embryos. 

A five day old embryo, called a blastocyst

We got two embryos from our first round of IVF. We didn't get pregnant with the first one, but did with the second, and were thrilled. At nine weeks the heartbeat we'd previously been thrilled to see was suddenly gone. I will never forget Jim clutching my arm and both of us silently crying while the ultrasound technician searched in the dark room for the heartbeat.

They got two more embryos from our second round of IVF. We got pregnant with the first one, and that was Grace Pearl. We terminated our pregnancy at 21 weeks, 5 days, due to discovering she had a fatal fetal anomaly. Grace is the reason for us telling our story and for this website.

There are constantly people asking us what we're going to do. Will we try again? What about the last embryo? For National Infertility Awareness Week, I wanted to share an update.

To answer that, there is one more letter that we gave to Senator Dianne Feinstein when we met her in Washington D.C. I haven't shared this before now because I wasn't ready. It was this letter:

Dear Senator Feinstein,

I wanted to provide an update on my husband’s and my journey to have a family:

When Jim and I did in vitro fertilization (IVF) in March 2016, we were blessed with two 5-day embryos, both girls as we learned through pre-genetic screening, which we had performed to avoid another miscarriage. We were utterly delighted to have two embryos to attempt to get pregnant with, and one of them was implanted in July 2016: Grace Pearl. Unfortunately, we learned at Grace’s 21-week anatomy scan that she had bilateral Multicystic Dysplastic Kidney Disease, which is 100% fatal, and we terminated the pregnancy for medical reasons, which is documented in our included testimony and media.

While it felt far too soon emotionally to be pursuing pregnancy again, my husband and I were terrified of the legal limitations that are being proposed, considered, and potentially passed in our state of Missouri and nationwide. For instance, a 20 week abortion ban is being considered in Missouri, and a personhood law has been proposed.

We decided we should try with our remaining embryo as soon as was physically feasible. What if our remaining embryo had the same disease Grace did, or another fetal anomaly? We feel so strongly that we made the best and most loving choice for Grace that we would want the same option for her sister should she encounter similar problems; unfortunately our state's laws are not written or implemented in a way that gives families like ours the legal right to make these decisions past 21 weeks 6 days, despite the fact that problems in pregnancy can and do occur far later that than.

We learned on Wednesday, March 22, 2017 that our final embryo transfer did not result in a pregnancy. We are devastated, and do not know what the future holds for us. We are now mourning this loss in addition to our loss of Grace Pearl.

If we do pursue a family again, we hope that we will legally be allowed to make the best choices for ourselves and our family. We are the illustration of the fact that starting a family is not as predictable or easy as many think, and that instead it can be a heartbreaking process full of defeat and loss. We do not need legal limitations to worsen this experience for us. It’s hard enough as it is.

Sincerely,

Robin

Maybe you're reading this knowing a few other people who have told you about their infertility, and perhaps it has already resolved for each of them. We hear a lot of stories about never giving up, 'I have this one friend that they gave up and then bam, it happened!' or 'I have another friend who did IVF and then got pregnant by surprise right after with another one'. These things are well-meant, but aren't going to happen for us. They simply aren't. We cannot get pregnant without intervention due to the nature of our infertility diagnoses. 

A lot of people share about infertility more publicly after it has resolved for them. Because of Grace Pearl, and how everything has unraveled for us, instead here we are, living our lives right in front of everyone. 

And we're stuck. Our last embryo had a 60% chance of working, but it didn't. And now we're out of embryos. And IVF costs a lot of money. And we're just so, so sad. 

We are considering adoption again (which we looked into extensively in the past, and honestly aren't sure we can handle after the rollercoaster we're already on). We are considering trying again with our own genetics because there is nothing technically wrong with them... we've just been supremely, shockingly unlucky. We're considering donor embryos.

We are considering giving up and no longer pursuing children.

I share all of this to let you know that while you may hear about infertility after a happy ending has arrived for someone, that happy ending doesn't always come. Sometimes you get too many bruises along the way to keep on going. Too much heartache, too much dread and hesitation and pain, and you just get paralyzed in indecision. This isn't even my nature, but that's where I am.

I cannot imagine putting ourselves through the uncertainty and lack of control of the adoptive process, nor the thus far absolutely anxiety-inducing and downright punishing process of being pregnant again.

But the idea of giving up and changing course and not having children, while it would be ultimately ok as Jim and I are unbelievably, after all of this, very, very happy together, it feels like slowly walking into a cold pool. Every step I take further in, there's a new shock to the system. Eventually I'd get used to the temperature, but it's not what I wanted. 

I have no idea when we'll decide, or what we'll decide. I hate being in limbo AGAIN. Have we not been through enough? Are we just not supposed to have biological kids or kids at all and I just won't get the message? Do I even believe in that sort of thing? Is it worth the risk to try again when all we have had thus far is heartache? We don't know what to do, and the only answer is to give it more time. 

We aren't the only ones in this position. This is what infertility looks like. An extreme version, but we're not the only ones. There are so many stories out there, and they all deserve to be told and heard. Every single one is hard, heartbreaking, and deserves care, compassion, and understanding. 

Another Important Part of Our Story: Infertility

I have been planning to talk about the infertility piece of our journey with Grace Pearl and entering the world of advocacy since this blog and website started. RESOLVE's National Infertility Awareness Week (NIAW,) which runs April 23-29 felt like the perfect time.

From NIAW2017

The theme of NIAW this year is "Listen Up!" which fits pretty perfectly with our blog. I know historically we've been focused more on abortion,, but infertility is also an enormous part of our story. It's in the first sentence of my Washington Post Op Ed. The whole point of this blog and website and all of the media that I have done has been to get our story in front of people, and to share what a real story of what infertility and later term abortion looks like. We want to foster discussion with people about tough topics like infertility and abortion with compassion, listening and care.

Infertility is not only an equally important part of our story to abortion, but is also very similar to terminating pregnancy for medical reasons in that both are topics that are very, very painful for a family to go through, are utterly startling and life-changing to encounter, and can be highly stigmatized by people that don't fully understand them. It's not just that people don't know a lot about late-term abortion and infertility; when they don't, they often assume very negative things in the absence of education and facts.

I wanted to start with some common statistics about infertility to introduce to people that aren't familiar with what it is and how it affects families like ours. These statistics are provided by RESOLVE: The National Infertility Association, which is a truly life-changing resource for many families coping with infertility by providing support groups and excellent education on infertility and the many challenges and options that come with it.

Infertility is defined as the inability to conceive after one year of unprotected intercourse (six months if the woman is over age 35) or the inability to carry a pregnancy to live birth.

• 7.4 million women, or 11.9% of women, have ever received any infertility services in their lifetime. (2006-2010 National Survey of Family Growth, CDC)
• 1 in 8 couples (or 12% of married women) have trouble getting pregnant or sustaining a pregnancy. (2006-2010 National Survey of Family Growth, CDC)
• Approximately one-third of infertility is attributed to the female partner, one-third attributed to the male partner and one-third is caused by a combination of problems in both partners or, is unexplained. (www.asrm.org)
• A couple ages 29-33 with a normal functioning reproductive system has only a 20-25% chance of conceiving in any given month (National Women’s Health Resource Center). After six months of trying, 60% of couples will conceive without medical assistance. (Infertility As A Covered Benefit, William M. Mercer, 1997)
• Approximately 44% of women with infertility have sought medical assistance. Of those who seek medical intervention, approximately 65% give birth. (Infertility As A Covered Benefit, William M. Mercer, 1997)
• Approximately 85-90% of infertility cases are treated with drug therapy or surgical procedures. Fewer than 3% need advanced reproductive technologies like in vitro fertilization (IVF). (www.asrm.org)
• The most recently available statistics indicate the live birth rate per fresh non-donor embryo transfer is 47.7% if the woman is under 35 years of age and  39.2% if the woman is age 35-37. (Society for Assisted Reproductive Technology, 2013)
• Fifteen states have either an insurance mandate to offer or an insurance mandate to cover some level of infertility treatment. Eight of those states have an insurance mandate that requires qualified employers to include IVF coverage in their plans offered to their employees: Arkansas, Connecticut, Hawaii, Illinois, Maryland, Massachusetts, New Jersey, and Rhode Island.
• A study published in the New England Journal of Medicine (August 2002) found that the percentage of high-order pregnancies (those with three or more fetuses) was greater in states that did not require insurance coverage for IVF. The authors of the study noted that mandatory coverage is likely to yield better health outcomes for women and their infants since high-order births are associated with higher-risk pregnancies.
• The Affordable Care Act (ACA) does not require coverage for infertility treatments. Those states with an infertility mandate that covers IVF may have chosen an Essential Health Benefits (EHB) benchmark plan that includes the IVF mandate. The EHB impacts the individual and small group markets only in each state.

From the Disney movie "Up"

As you can see from the stats above, infertility is much more common than people think, and is not typically covered by insurance, which makes the pain of not being able to naturally conceive a child and undergoing often painful, lengthy and invasive infertility treatments (if a family opts to go that route) all the more difficult. Toss in that these drugs can really affect your hormones and moods and some days it feels like everyone and their sister is announcing their pregnancy with a cute photo on social media, and it's easy to feel very alone and very, very misunderstood and left behind.

Just like abortion (and late term abortions specifically) and miscarriage (another hurdle we've unfortunately crossed on our thus-far unsuccessful journey towards parenthood), infertility is not discussed enough. The more we all share our stories, the better others will be equipped to understand the challenges we face. If enough people speak up, perhaps we'll be able to get nationally mandated covered for infertility (which is a disease as recognized by The American Society for Reproductive Medicine (ASRM), the American College of Obstetricians and Gynecologists (ACOG) the World Health Organization (WHO)). In the meantime we can help others that cope with infertility feel less alone and be enabled to make well educated and supported decisions about what they want to do about the awful card they've been dealt. 

I'll be sharing more this week and in the coming weeks about our story and where we stand now. As far as how our story relates to the statistics up above, I will share the following (and am trying to keep it from being too technical/medical):

• No procedure short of IVF will work for us to conceive a biological child due to the causes of our infertility. We tried many other routes before learning this however, and had many, many months of enormous disappointment upon learning we weren't pregnant each month.
• We have done IVF twice.
• I have been pregnant twice from the embryos that we conceived in those two rounds of IVF.
• The first pregnancy ended in miscarriage in February 2015 at 9 weeks pregnant.
• The second pregnancy ended when we terminated Grace Pearl at 21 weeks, 5 days pregnant for fatal Multicystic Dysplastic Kidney Disease on November 23, 2016. 

I'll be sharing more this week and in the coming weeks about our story and where we stand now. If you have a story to share, please contact me!