National Infertility Awareness Week

This week is National Infertility Awareness Week…I considered not even acknowledging this on the blog. Frankly, the last few weeks have been incredibly difficult. I’m physically and emotionally exhausted and in many ways I’m very tired of infertility monopolizing so much of my life. But the fact that there needs to be a week dedicated to awareness reminds me that there is just not enough information about infertility out there and I have the opportunity through this blog to help with that…so here goes it.

The easiest way (thanks to my obsession with an overly organized planner) is to give you all a brief timeline of our infertility:

Sunday, February 2, 2014: It’s my 27th birthday! Dan and I have been married for a little less than 6 months, we decide to casually start trying for a baby.

Thursday, January 8, 2015: I go to my OB-GYN for my annual check-up and casually mention Dan and I have been trying naturally to conceive for about a year. She encourages me to try for a few more months. She offers to send me for prenatal genetic screening now, I happily comply.

Tuesday, February 3, 2015: My bloodwork is back… I screen as a carrier for Spinal Muscular Atrophy (SMA).

Monday, March 2, 2015: Dan’s bloodwork is back… he is also a carrier for SMA. My physician arranges for us to meet with a genetic counselor… she recommends I meet with a fertility specialist. She says IVF for the first time.

Thursday, March 11, 2015: We meet with a genetic counselor.

Monday, March 30, 2015: We meet with a second genetic counselor.

Thursday, April 2, 2015: I meet with my OB-GYN. We discuss all the options. She tells me the name of the fertility specialist she’d like us to go to, I agree and she makes the referral.

Thursday, May 7, 2015: Dan and I attend an IVF seminar

Thursday, May 14, 2015: We meet our fertility specialist for the first time. He advises we pursue IVF with PGD. He tells us how lucky we are to have SMA (see previous post). He tells us he doesn’t believe we will ever conceive ‘naturally’.

Saturday, June 6, 2015: I go for my first (of countless) morning blood draws. It’s the first time I realize how crowded our fertility centers waiting room is. (Even on Saturday).

Wednesday, June 10, 2015: Dan and I go for our first (of countless) ultrasounds.

Wednesday, July 15, 2015: I have my first phone interview with the genetic counselor from the lab that will eventually carry out the PGD testing on our embryos. We talk for 1 hour, I take 12 pages of notes, cry 4 times and hang up feeling overwhelmed.

July…August…September pass… we wait… and wait… and wait. There’s more bloodwork, doctor’s appointments and phone calls. We work with laboratories in Washington, California and New Jersey… our DNA travels across the country. There are complications and delays, issues with samples and insurance… and waiting. Always lots of waiting.

Tuesday, October 20, 2015: We get the call we’ve been waiting for… our DNA sequence for the PGD is finally complete. I can start hormones for our 1st IVF cycle.

Tuesday, November 17, 2015: I start hormones for our stimulated cycle. (12 days of torture)

Monday, November 23, 2015: I have another hour long phone conversation with our PGD genetic counselor. We discuss every single detail of the testing of our embryos DNA.

Sunday, November 29, 2015: We have my egg retrieval at 9 am. 15 mature eggs are retrieved.

Monday, November 30, 2015: We have 13 embryos.

Saturday, December 5, 2015: We have 4 embryos.

Wednesday, December 30, 2015: We have 1 embryo.

Friday, January 8, 2016: I start a new regime of hormones for future transfer. (2 months of torture)

Friday, March 4, 2016: Embryo transfer day

Sunday, March 13, 2016: WE’RE PREGNANT!!!

Friday, April 1, 2016: 7 week ultrasound… no heartbeat. We have lost the pregnancy.

Wednesday, April 6, 2016: I begin the physical miscarriage.

Tuesday, April 26, 2016: My HCG hormone is finally back to zero…from a medical standpoint my ‘natural’ miscarriage is officially complete… it took 20 days…

Today: We wait. We’re still trying to find a ‘cause’ for the miscarriage… there’s blood work, biopsies and exams in our future. There are a lot of questions and not enough answers.

This timeline explains the ‘medical’ side of infertility… but that’s not even half the battle…

It doesn’t include the number of times I’ve cried in the shower so Dan doesn’t hear.

It doesn’t include the number of pregnancy announcements I’ve scrolled past on social media that genuinely make my heart ache.

It doesn’t include the number of bruises on my stomach or IV sticks in my arm.

It doesn’t include the number of pregnancy test I’ve taken that came back with only 1 pink line. Or the sadness I feel every time I open the drawer in my bathroom that still has the pregnancy test I took that had 2.

It doesn’t include the number of times my nurse has called me at work and I’ve hidden in the corner of an empty patients room and cried.

It doesn’t include the number of hormone induced fights I’ve picked with my husband about everything from laundry to dirty dishes to sushi.

It doesn’t include the number of people in my life who I’ve pushed away because infertility is the name of our island and no one else understands what it’s like here…or how much I hated myself for resenting them for not being here with us…or how every day I imagine a life on some different, happier, less painful island.

This is a simple timeline, but there is nothing simple about infertility. It’s a life changing, devastating, physically, emotionally and mentally exhausting experience shared by 1 in 8 couples. Educate yourself. Educate the people you love. If you’re someone like me, be willing to share your story. If you’re someone who is lucky enough to not be on ‘Infertility Island’, ask questions. Be present for the people who are on said island.

Dan and I have been discussing a lot lately what our plans are for the future. We try imagining different lives for ourselves… one with children, one without children, one in Connecticut, one living in some beach town on the coast of somewhere beautiful. One life I will never be able to imagine is one without infertility… but with enough awareness, education and research someday, maybe, someone else will… maybe that someone will be your daughter… or better yet (no offense)…maybe she will be mine.

WordsWednesday

“But what could you do? Only keep going. People kept going, they had been doing it for thousands of years. You took the kindness offered, letting it seep as far in as it could go, and the remaining dark crevices you carried around with you, knowing that over time they might change into something almost bearable.” –E. Strout

…so about the Gold dress.

We had our transfer. It’s a surprisingly easy procedure, considering everything that goes into getting ready for it. Dan and I showed up at our fertility clinic an hour before our transfer time, we chatted casually with the nurse… she explained her sisters name was also Meghan Leah (different spelling) and her son had the same birthday as me (different year)… we decided that if good things happen in 3’s a successful transfer would complete our happy connections. Our doctor came in and reviewed our warrior embryo ‘stats’ with us… grade A embryo. I kissed Dan and turned to walk into the procedure room when he joked (rather loudly and slightly inappropriately) “go make me a baby would ya?” In moments like that, when he makes me laugh hysterically at the most absurd times, I am so thankful he’s my partner in this journey.

The only real rule they give you for your transfer date is to come with a full bladder, as it allows them to better visualize the uterus. When the nurse placed the ultrasound probe on my stomach she immediately burst out laughing, “I have never seen someone with a bladder that full! How are you even walking?!” As I walked to the bathroom to ‘relive myself’ (of at least a liter! She told me) I explained “I’m a nurse… I’m use to holding it. And I’m an overachiever… you said full bladder, you got full bladder.” My doctor was joking I was the “bladder of the year” winner and complimented my commitment to success as he started the transfer and I just kept thinking to myself “Come on embryo, be an overachiever too.”

After the transfer we went home and I happily settled into 3 days of bedrest… which was basically me lying in bed all day watching The Mindy Project and Dan spoiling me rotten. We had to wait 10 days for our pregnancy test (this is commonly referred to as the Two Week Wait) and let me tell you, it is actual torture. I couldn’t go more than 3 minutes without thinking about the fact that I may or may not have a baby inside of me. I was scheduled for my HCG test on Sunday and that Saturday I was at work when I started to feel crampy and tired and broke down to my co-worker and friend, “it didn’t work, I’m getting my period…I can tell.” She calmed me down, told me to give it one more day and let me cry it out in the backroom.

The next morning, as I sat in the crowded waiting room with my fellow infertiles, I couldn’t help but wonder how many of them were also going to find out that day if their journeys had been worth it. How many of us sitting there, aimlessly scrolling through Iphones and watching the morning news, were wondering if by that afternoon our lives would change forever. They usually call with lab results between 3 and 4 in the afternoon, so after attempting to watch a new show on Netflix and cleaning our entire downstairs, Dan exclaimed he needed to get out of the house and went to pick up lunch. No sooner had I heard the garage door close did my phone start ringing, it was our clinic…and it was only 12:45. I picked up the phone with shaking hands and held myself together long enough to hear our nurse exclaim “Meghan, you’re pregnant!!” After that I broke down crying… Pregnant!

I paced around the house for the next thirty minutes waiting for Dan to come home, finding myself between fits of laughter and fits of tears… we were having a baby. When Dan came home I could barely contain myself “We’re pregnant!” I yelled. I had planned on thinking of something clever to say, but in that moment I just wanted to celebrate with the person who had been my rock through this entire journey. We laughed, cried and hopped around our kitchen like two toddlers on Christmas morning, I cannot remember a time in my life when I have felt such an overwhelmingly sense of love, joy, happiness and peace.

Over the next two weeks I went to our fertility clinic every other day to have my pregnancy hormone level checked and waited anxiously for our nurse to call me in the afternoon with the results. After two weeks she exclaimed “Everything is going perfectly Meghan, you don’t even need to have your HCG level drawn next week, we’ll just do a 7 week ultrasound…and we can officially say you’re due date is November 20th.” I kept thinking of the Wizard of Oz when they declare the Wicked Witch dead “She is really, most sincerely dead.” I was really… most sincerely… pregnant.

Dan and I chose to share our news with a few people in our life, we agreed we wanted to wait for the 12 week mark to announce to everyone, but too many people had come on this journey with us, we couldn’t keep the excitement to ourselves. I loved watching the people in our life react, in many ways it was in those moments that I realized how our infertility was affecting the people who loved and cared about us, and I was so thankful I could finally share such happy news.

Our ultrasound was scheduled for Friday, April 1st… Dan and I joked we could see our doctor playing some kind of Aprils Fool’s Joke on us (I thought he might pretend there were twins…Dan thought he would enter the exam room wearing a jesters hat… neither of those things happened.) As I sat on the exam table, swinging my legs in excitement Dan and I agreed to ask the sex of the baby after the ultrasound. (Because of the PGD they knew the sex of the embryo prior to implantation, but we had decided not to find out… but after discovering we were pregnant Dan was too excited to wait the 9 months and I begrudgingly agreed to find out. I figured after everything we had been through I might as well give my sweet husband something he wanted, even if I liked the idea of being surprised.)

Our doctor walked into the room grinning and we were talking casually about the overwhelming exhaustion associated with the first trimester as he began the ultrasound… almost immediately I knew something was wrong. The smile literally fell from our physicians face and he turned to the nurse, who was staring blank faced at the ultrasound screen I couldn’t see… “How far along is she supposed to be?” (6 weeks, 5 days I practically yelled, no need to look at the computer!) I looked frantically at our doctor, at the nurse, at Dan… all of them were staring at the ultrasound screen.

“You’re making me nervous… what’s happening?!” I cried as tears started filling my eyes.

I asked, but I didn’t really need an answer… the silence in the room was deafening.

There was no heartbeat.

It took another 10 minutes for the doctor to finish his exam. I spent the majority of the time crying and trying to wiggle myself free. Every muscle in my body wanted to run out of the room. To go back fifteen minutes earlier when Dan and I had been joking about baby names and April fool’s pranks. To go back to when the nurse was giddily asking if I was nauseous yet, not rubbing my shoulder as I cried. To when the doctor was smiling at me like he had never been happier for a patient in his life… not avoiding eye contact as he tried to hold me steady on the exam table. Finally, he finished and I sat up.

“You’re not presenting like someone who is almost 7 weeks pregnant. We should hear a heartbeat…” He calmly explained, he then continued to clarify that it might be late implantation and that our embryo had just implanted later than expected, in that case I would come back in a few days, we would do another ultrasound, and everything would be fine. “What are the chances that is what this is… give me statistics?” I asked. I stopped being the hysterical patient and turned into the fact-loving ICU nurse. “Maybe 10%” was his response “And the other 90%?” I asked and he gave me the face I know too well… it’s a face I’m accustomed to giving at work when there’s nothing else we can do… it’s a face filled with sympathy… it’s a face I didn’t like receiving… “If you’re HCG levels are going down, we would be pretty certain that you lost the pregnancy.”

The nurse hugged me before leaving the room and as I got dressed I couldn’t help feeling like the floor was shifting. My ever optimistic husband hugged me and told me he was sure it was just late implantation, this was just another bump on our crazy journey. I wasn’t so positive though…I knew, in my heart, this was going to be bad. We went to have my blood drawn and then drove home in almost complete silence. Neither of us knew what to say…something I’ve discovered in the past few weeks is sometimes there really are no words. When we got home I changed into pajamas and crawled into bed… by now you all know I’m an emotional person, but I didn’t even cry, I just felt numb.

Our nurse called less than two hours later. I like to think of our nurse, Marsha, as my own little fertility angel. She has sat on the phone with me as I’ve broken down when my levels were low, celebrated and cheered with me when my hormones were good, she has been there through this entire process, supporting me, comforting me, encouraging me… I knew the minute I heard her voice this was not a good phone call…she calmly explained in the past 48 hours my HCG levels had dropped by almost 500 points…she said after talking with our physician he was confident in telling me to stop all our hormones… I had really, most sincerely…lost the baby.

So that’s the story…of a girl with a gold dress, a handsome husband, a dream, a warrior embryo and a miscarriage. I’m sorry it doesn’t have a happier ending. I’m sorry you invested your time into something that will probably just leave you feeling sad and disappointed. I know I do. But even though right now we’re heartbroken, defeated and closing the book on this chapter of our life… I’ll let you all in on a little secret I hope inspires you, encourages you and brings a little hope in a world that at times can feel rather hopeless… I’m not throwing that gold dress away. We have absolutely no idea where we go from here, but wherever this infertility journey takes me… I’m taking my handsome husband and that gold dress with me.