Understanding PGS: Why we’re doing it

PGS (pre-implantation genetic screening) is a complicated topic. While I knew we would opt to use PGS during our upcoming stim cycle prior to a transfer very early on, I didn’t know much about it. I’d watched an animated video on the website of the laboratory that my clinic uses for PGS, and it felt a bit Schoolhouse Rock-esque, without the clever puns and music. This video could have used those. I felt like I knew the basics of what happens to the embryo/blastocyst during the PGS testing, the lab counts chromosomes, … blah, blah blah… and then following testing my husband and I would see a report on our embyros each characterized into two neat little columns — normal or abnormal.

At least some of that was correct.

I’ll say before I move on that I am not usually one of those infertiles that spends hours in the middle of the night on message boards comparing IVF stories with other women. I’m not passing judgement on the women that do that, mind you. For me, and my mental health, I have to sometimes turn down the fire hose of infertility information. I very much pick and choose when I consult Dr. Google or the message boards because when I know too much, my anxiety hits dangerous (read: 1947-era padded room, straight jacket) levels. Too much research can cripple me. I try to be well-informed about my treatment options and protocols, and I think I am, but I know my limits. I’m good without knowing that Jane Doe in Oregon also had a Lupron-down protocol resulting in 20 eggs at her retrieval and then experienced this freak thing… yeah. I, personally, don’t need to know. I advocate for myself but I also trust my doctor and the greatest nurse on the planet.

So while I knew I’d move forward with PGS almost regardless of my research, I still wanted to learn more about it. If anything, I wanted to confirm that I was making the right call about doing it, and gain confidence that we’d have some clear answers after the tests were complete.

Where did I land? Well, I will say that PGS is (still) the absolute right step for us at this point (more on that in a bit). But, dayum, I got schooled.

First, all hail FertilityIQ. Their online course on PGS is the absolute best, most comprehensive resource on the subject I’ve found. If you’re considering this as part of your treatment plan, take 30 minutes to watch their helpful videos and read through their detailed written material. Deborah and Jake, the founders of the site, host the videos and I’d like to be friends with them. They’re clearly knowledgeable (fertility clinic vets so they totally get it), but they also include interviews with doctors on both sides of the aisle in this PGS debate. The course has easy to understand patient examples, visuals and just a ton of great information. Honestly, it’s not only worth your time, but in my opinion you owe it to yourself to understand the intricacies of such a complex fertility topic.

This post isn’t sponsored by the site, nor do I have any relationship to it, I am just a big fan. Also, I probably don’t need to mention this but I am NOT. A. DOCTOR. I am a fellow infertile sharing her experience. 

Remember when I said that I thought after PGS all of our created embryos (and Kristoff) would be put into two nice little black and white buckets? Nooope. Because mosaic embryos are a thing. As a woman lumped into the unexplained infertility category I’ll say they are a potentially confusing, frustrating thing. I don’t need more unexplained science, world! I need answers. The FertilityIQ videos and text were extremely helpful in explaining not only what mosaicism is, but that there are questions I need to ask my clinic about their policies on identifying these gray area embryos. (Aside: And because I now knew to ask this question I got an answer about my clinic’s policy! #winning)

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What this all comes down to is that I’m glad I did the research on PGS. While the idea of mosaic embryos doesn’t kinda make me want to cry in the corner, simply because it’s just more uncertainty when I’ve had my fill of that, I’m glad I’m armed with this information to better advocate for myself and my future blastocysts. I can ask the questions of my clinic, talk to a genetic counselor if I’m in a position where we only have mosaic embryos available, and then decide what’s right for us. If any of that happens.

Here’s why PGS is right for us at this moment in time: I’m 36. I’ve had two miscarriages, a chemical pregnancy and three failed embryo transfers. Other than chronic endometritis, three years of infertility treatments and countless tests have not brought us any closer to a baby. This road is ending for us soon, with or without a biological child. I’m tired. We’ve reached our debt ceiling. PGS will allow us the best possible opportunity to have that baby. We will carry more debt with us because of it, but we’re going for broke this time (perhaps literally as well as figuratively). This is it.

If there’s one thing I feel really positive about heading into this last stim cycle, it’s the decision to have our embryos tested. And honestly, I really need that sliver of hope.

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Transfer Day


Olaf and Anakin thawed well and are already starting to hatch. Let’s do this thing.

Edited to add: My sister-in-law, who accompanied me to my transfer since my husband is out of town, surprised me with these baller socks that have MY DOG’S ACTUAL FACE ON THEM!

Why Leonard Cohen’s passing reminds me of infertility

I’m a longtime fan of Leonard Cohen’s music, particularly his deeply emotional songwriting. I was first exposed to his haunting lyrics in college, and his impact has remained. Many of his songs hold a very special place in my heart because I find that they resonate with me no matter the stage in my life.

Following his passing late last week, especially on the tail of an otherwise emotionally fragile few days including the US presidential election and my own FET, I returned to two of my favorites.

“Hallelujah” is probably Cohen’s most popular song, and for good reason. I played this at my wedding. It is absolutely brilliant. In it, he speaks of both loss and understanding. Two themes those suffering from infertility often have to balance simultaneously. Like many of his songs, I often prefer “Hallelujah” sung by other artists (Jeff Buckley, perhaps most notably sang this beautifully, as did Rufus Wainwright). This week Kate McKinnon did a wonderfully simple tribute to both the brilliant songwriter, as well as Hillary Clinton.

“Anthem” is the other that hits me hard. Perla Batalla and Julie Christensen do my favorite rendition of this song; they exude the struggle, determination and hope that this song speaks to.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in

Thank you, Leonard Cohen, for giving us your beautiful music. You won’t be forgotten.

Anna and Elsa

This week embryos Anna and Elsa take the stage. All eyes (and ultrasound wands) on them.

In the time since my first IVF’s failure, I’ve carefully considered when to do my next IVF and how many embryos would come along for the ride. These thoughts have never been far from my mind in the months that have passed. There wasn’t one reason that I decided to move forward with transferring two embryos, but I suppose that if I have to single something out it would be this: I’m tired of not being a mom. I’ve been through too much and have worked too hard. I’m tired. So, at this point, I can’t say in good consciousness, well, two is just too many at one time. It isn’t.

My FET cycle has been a bit bumpier than I anticipated. The estrogen has hit me hard. While physically I’m okay, emotionally I am basically a dumpster fire. I’m probably not what one might call the most emotionally sounds person off-meds, but the Estrace causes me to openly weep at the slightest hint of emotion. Sadness, sure. Also happiness, excitement, anger, pride… it’s been a fun few weeks.

The PIO is another fun, jabby adventure. This is my first time on PIO and I was more than a little surprised by the thickness of the needle. Since I do my own injections (my husband is petrified of one thing, and that thing happens to be needles), shoving that mammoth needle into my butt can prove to be a bit of a challenge. Thank goodness for large bathroom mirrors and reasonably steady hands.

Naturally, I’m rooting for Anna and Elsa. I’d like to think these two embryos have the same sass and spunk as the characters, helping them stick around.

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One or two

If you had asked me 10 years ago about my future family, I more than likely would have said that I would be the mother to twins. Twins run in my family in every generation. My father is a twin (identical). My aunt (his older sister) has twins (fraternal). Twins go back several generations on my father’s side. I always assumed I’d be the next one to have them. I accepted it as my fate and moved on.

During the post-mortem on my first (failed) IVF cycle with our RE a few weeks ago — in which he said that my cycle was absolutely textbook perfect minus the lack of pregnancy (not as comforting as it might sound) — he asked whether we would like to move forward with a one or two embryo transfer for our second cycle. As soon as I opened my mouth to answer, my RE jumped in with the laundry list of complications that are more likely in a twin pregnancy. Increased risk of preeclampsia, gestational diabetes, low birth weight… yep, check.

For these reasons, as well as the perceived quality of the embryos we currently have frozen (Anna, Elsa, Olaf, Kristoff and Anakin, you may recall), he recommends another single transfer. And while this is his recommendation, he is open to transferring two because of the practical and logistical factors involved with IVF.

I left the office that day with my husband — me headed back to work and him home — and said in the parking lot, I don’t know what to do. This surprised him, mostly for the resigned to twins reason above. And honestly, it surprised me a little, too.

One of the very (very, very) few positives of medically assisted reproduction is that I have some small amount of control over having twins. In the future my 20+ year old self envisioned I did not. Our odds of having twins with a two embryo transfer is about 25 percent, per the RE. That seems somehow more significant – heftier – now when I have the option, technically, of choosing a singleton pregnancy and child.

I’m struggling with a few things as I try to make this decision (presently my husband has allowed me to make the choice). Perhaps most seriously with the practicality of caring for and raising two children at the exact same time. I’m not naive – that shizz is hard. That shizz is expensive. I ask myself if I could be a good mother (or perhaps more accurately, the kind of good mother I aim to be) to two as to one. The questions I ask myself are honestly exhausting.

Residing on the other side of the fence, of course, is the part where I’ve tried for three and a half years to have a baby and create my family… I can’t possible say, oh, I only want one at a time. Nope. Give me all the babies!

I don’t really see myself coming to a resolution on this any time soon. Overthink, much?

When your heart keeps breaking

Going into my first IVF cycle I didn’t understand just how high my hopes would be. I thought, as long as we come out of this stim cycle with frozen embryos, I’m good. And we did.

But I’m not good. I got my period several days ago and have been stewing ever since. I went through the stages of grief. Spotting is normal during implantation and this is only a little more than that… Then my period would all but stop and I’d feel relieved and silly that I overreacted. Then, hours later, more red.

Little 3AB didn’t stick around and that sucks. It really just sucks. I’m angry that for what I’ve put my body through over the last several weeks I don’t have much to show for it. I’m still waiting. How am I still waiting?!

How has this thing that happens for a majority of the population — often by accident — not happened for me after three and a half years of time, money and effort? I’m angry. I’m sad. I don’t understand it. I can’t understand it. I can’t let it go.

I’ll focus on the positive — a future Frozen Embryo Transfer (FET) — later. I’ll dust myself off and gather the pieces… later. For now my heart is broken again. It’s my new normal and I hate it.

Signs

I’m kind of a superstitious person. Sometimes. Okay, much of the time. I don’t think I’ll break my mother’s back if I step on a crack in the sidewalk, but if I notice the crack I’ll probably avoid it.

My biggest source of superstition is numbers. Specifically dates. I hold a lot of significance in birth dates, death dates, milestones and the like. Before my husband and I were engaged, I’d talked him into committing to a specific wedding date — July 5th (happy anniversary, love!). My lucky number (and birth date) is seven, and his five. I also would have accepted May 7th as a wedding date, but in 2013, that fell on a Tuesday. Joining two significant numbers together into an important date of unity felt very special. I was not in love with getting married on the hottest day of the year in New York City, but some things were just more important.

Each time we’ve used medical intervention to conceive I’ve found that the expected due dates fell on the birthdays of very important people in my life. The first was my brother’s birthday. The second was my best friend’s (also the day before my aunt’s, who’d died the year earlier). I will never forget them. They’re tattooed on my soul.

When we arrived at the embryo transfer last week, I was on the look out for signs. The date that we’re expected to find out if 3AB “takes” will be during a significant week, but not the specific date. I wanted more of a connection.

I got it.

My embryologist, whom I’d met before but somehow never made the connection, shares a last name with my family. It’s the name of my mother, brother and stepfather. The moment that I read her name embroidered on her scrubs, I felt warm. I literally stopped her mid-sentence and told her she shared a named with my family and that that was such a wonderful gift to me on a day when I was feeling scared. This isn’t a very common name, particularly in the South.

I immediately perked up and held that warmth during the procedure.

My husband asked me after, while I was changing back into my clothes, why I hadn’t further explained the name significance to the embryologist. I knew I could fully form the words without crying. My stepfather died very suddenly five years ago. He was so important to me. I couldn’t say that out loud then, and at that moment I don’t think I would have wanted to. Because I didn’t feel sad when I saw her name and felt the connection – I felt happy. I felt like he was showing me that this was going to be okay. He swooped in with the support that he’d given me throughout my childhood and early adult life.

Thanks for the sign, Dad.