Putting my feet up

Things got a little scarier with my pregnancy. Two or three weeks ago, after a frightening and stressful 24 hours where we thought we might have lost this baby girl (but we didn’t! whew!), we decided my feeble attempts at fumbling around trying not to lift RJ and trying to take things a little easier (and yet still somehow take care of the kid by myself 12 hours per day) were just not going to cut it. In swooped my AMAZING parents to help, as always. RJ and I are spending 3 (or more!) days a week at Nana & Pappy’s house, where I’m getting around-the-clock childcare, home-cooked meals and all sorts of love and support so that I can keep my feet up as much as possible. Mr. E is also working from home one day per week and has officially taken the role as “default parent” on the weekends. And we’ve hired a sitter to help me with the one remaining day in the week. I’m not on official bed rest, but I’m probably not on my feet for more than a combined hour per day. Are we being a little over cautious? Maybe. I really don’t know. But I do know that if we lost this baby I’d regret not doing everything we could to keep her here safely. So I’m going to proceed in a way that will leave no room for regrets. Thankfully, I have an amazing husband and parents who can help me do that.

And thus, my former, crazy, chaotic days watching a very energetic, almost-2 year old have given way to long, drawn-out, boring days laying around on the couch. It’s kind of a shock to the system! At first, I was a big ol’ cranky pants about the whole thing like: “ZOMG I’m soooo bored” and “Wahhhh! I can’t take care of my own son!!!! I feel so worthless!” and “Booohoooo, I can’t cook or clean or do dishes or — wait a minute — why am I complaining about this?” This is kind of a sweet deal. Mandatory vacation??? I can sit around and let everyone take care of me and I don’t have to feel guilty about it because it’s FOR THE BABY!?  Alright. Bring it. Mission Lazy-Pants has officially commenced! I got so lazy I even stopped posting on my blog. And then I realized I can do that from a semi-reclined position. So yeah, I’m back.

So what am I doing all day? I spend a lot of time (TOO MUCH TIME) on facebook and online forums, etc. I still manage some quality time reading books with RJ or lying on the floor while he whacks me with his toys. My parents are excellent at finding ways for me to still be productive. Last week I spent an hour or so in their La-Z-boy making mini pie crusts for some dessert my mom is preparing for Thanksgiving. And the week before that they had me laying on the couch shucking a bucket full of dried beans.

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I know. This thrilling life I lead. It was so exciting I felt the need to document it with a photo.

This week I plan to make homemade christmas ornaments. Stay tuned for photos of that! Hopefully they’ll be a little more exciting than the dried beans.

The great news is that there was already much improvement during my last ultrasound (after one full week of Mission Lazy-Pants) so I’m hoping these restrictions won’t last the entire pregnancy. It’s nice to take it easy for a bit, but it’s a challenge for everyone who’s had to pick up the slack for me. And it’s not easy on RJ either. Every time he yells “UP! UP! UP!” at me and starts crying when I tell him again that I can’t pick him up, I start to tear up myself. It’s indescribably frustrating to not be able to fulfill such a simple wish from my son that used to provide both of us such comfort.

I suppose it’s just the first of many sacrifices RJ will have to make for his new little sister. Poor kid. At least while we’re spending all this time at Nana & Pappy’s house, he’s learning some great new skills. Like how to drive Pappy crazy by turning on all the electric blankets in the house. And how to play to his grandparents’ heartstrings to get more time in front of the TV, or to get more catsup with his dinner. And how to use the doggy door to get in and out of the house.

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Silver lining, you have been found!

 

Thanksgiving Baby

In April, I lost a baby that was due on Thanksgiving Day.

pregnancy loss ribbon

I’ve written a post about reaching a miscarried baby’s due date before. And I wrote about my first three miscarriages here. But I have never written about my most recent miscarriage, and I want to take a moment to do that as we hit its due date. This baby was conceived very quickly after my third miscarriage. It was conceived days after a potential diagnosis was made regarding my three previous miscarriages and after a solution had been discussed with my doctor to make sure we didn’t lose the next one. With that positive pregnancy test came so much hope. I was still grieving the tiny baby we’d buried less than two months earlier. But now that we had identified a problem, and come up with a solution, and become pregnant so quickly, with a baby due on Thanksgiving Day, no less, we were incredibly hopeful and even a little cautiously excited.

Less than three weeks later, at my first appointment, we were told the pregnancy was not viable. I lost it a few days after that, naturally, at home, as I had done with the others. I wasn’t far enough along to pass any visible remains, so there was no burial or closure as with the loss preceding this one. But as I’ve done with all of my lost pregnancies, I bought a charm to remember that tiny spark of hope that lived inside of me for a very short time.

This Thanksgiving Day, I can’t help but remember that pregnancy. The hope it brought us, and the devastation we felt when we lost it. I can’t help but remember how gutted I was that the diagnosis we’d thought we’d found was obviously not correct, since the solution had not kept our baby alive. I wondered what was wrong with me, and why the doctors couldn’t figure it out. I wondered if we’d ever bring another baby home.

I sobbed for hours after that doctor appointment. But my tears dried up surprisingly quickly. Within days I was back to normal life, mentally moving on to “what’s next”. I remember feeling that I’d somehow bounced back quickly compared with my other losses. I thought perhaps I was becoming accustomed to this pain, after so much experience with it. I was wrong. In the months following our fourth loss, I found more anger inside of me. More bitterness. I wasn’t getting “better” at dealing with this pain, I was just developing more unhealthy defense mechanisms against it. I didn’t cry as much as I used to over my situation. Instead, I held my emotions more closely. I was more guarded. I was more afraid to hope for another healthy child. Staying optimistic and positive seemed like a dangerous and careless choice.  I knew in my heart that I didn’t want to turn into someone whose pain made them a closed-off, angry, bitter human being. But that’s a process. It’s a constant fight against a very strong urge to close up to the world and hate every happily pregnant woman or new, love-sick parent.

On that baby’s due date I’m also reflecting how far we’ve come. A 100% for-sure diagnosis was made. Months of fertility treatments were endured in order to take advantage of a special testing that could give us a baby who would live. A healthy baby girl was conceived from that process. And now I’m just over a week away from carrying her into that elusive second trimester.

This Thanksgiving, yes, I am still a grieving Mama. I’ve lost four very wanted babies and that will always stay with me in some way. I fight daily against the pessimism that presses in on me, making me feel like the healthy pregnancy I’m carrying now can’t possibly last. But at the same time, I am filled with gratitude. I am appreciative of all six of my pregnancies. I am thankful for the miracle of science, PGD, that made this healthy baby girl I’m carrying possible. I’m grateful for the family and friends that supported us through this, for my husband and our strong marriage, for my son, for our privileged life, for our health, for the peace we live in as a country and the freedom we enjoy. This journey has given me an ugly bitterness to fight through. But it has also given me the gift to see our life and fortune more clearly. I see and feel every amazing thing in our lives more strongly now than ever before. There is something about loss, that reminds you of what you have and how easily it can be taken away from you. There is something about struggle, that makes you more grateful for the things given to you. This Thanksgiving, more than ever before, I’m overwhelmed with an appreciation for the life and love that surround me. So perhaps, through all this struggle, I’m growing, too.

Miscarriage – Losing a “Baby”

You may have noticed that I often refer to my lost pregnancies as “babies.”

I didn’t always. I struggled with what they were to me for a long time.  I know many people believe that each life, as soon as its conceived, has a purpose and a soul and goes to heaven when it’s done here on earth. But I don’t. I’m not religious, I don’t believe in God, I  don’t believe in an afterlife, or in fate, or anything of that nature. And so it was, at first, very difficult for me to reconcile my scientific view of early pregnancy with my emotional experience of losing one. 3 of my 4 losses were so early that I didn’t even have any visible remains after I miscarried. The one that I did pass, and bury, was very tiny. It was still enclosed in its sac, and I didn’t open it to look inside at its features. But I knew that if I did, it wouldn’t look much like a human yet. The Internet tells me it probably looked something like this:

I knew that scientifically, the babies I lost were all just “embryos.” In fact, maybe with the earliest losses, they hadn’t even made it past “blastocyst” stage. Those ones may not have been anything more than just a ball of cells. I don’t really know, because the point at which you miscarry isn’t necessarily an indication as to how far your baby progressed. Often the baby dies long before you show signs of miscarriage. So, aside from the one I saw and buried, I can only guess what stage each embryo was at before it died. But they were very early. All of them.

And so at first, I referred to them only as “miscarriages” and “lost pregnancies.” But I was unsettled by the fact that these words just didn’t capture the profound attachment I had had to them and the immense grief I felt in the aftermath of losing them. These words didn’t do anything to communicate how special and important these lost lives were to me. And yet, I knew they weren’t fully physically developed babies, either. So what was I supposed to call them?

I became an active member of online support groups for pregnancy loss and noticed that many of the women experiencing early losses referred to their miscarriages as “babies” with no apology or embarrassment. The more time I spent in these loss communities, the more normal it became to me. And so, for lack of a better word to describe the things that I loved and wanted and bonded with and grieved over, that hadn’t quite become “real” babies yet, I slowly started allowing myself to refer to them as babies, myself. They would have been babies eventually, had they been healthy, had they survived. They were babies in my mind’s eye: I imagined them as they would have been later in pregnancy and after birth, not as a ball of cells or a strange little tadpole with arm and leg buds. So why not call it what it felt like?

And so now, I too, without apology or embarrassment, refer to my losses as babies. And finally, that feels right.

If you’ve lost a baby during pregnancy, or know someone who has, join me in lighting a candle on Pregnancy & Infant Loss Remembrance Day, this coming Wednesday, October 15th, to create a “wave of light” across the globe, honoring every baby that was lost by every heartbroken family.

Getting Diagnosed

This is a conceptual drawing of a Chromosome Translocation:

Have you heard of it?

Neither had I, until mid-April of this year, when I received an ominous evening phone call from my doctor, a reproductive specialist, who had been helping us over the last few months to figure out why I lose so many of my pregnancies.

“Your karyotype came back abnormal,” he said over the phone. I blanked for a moment. Then I remembered: that’s the blood test I took a couple of weeks ago, that we were almost positive wouldn’t turn anything up. I braced myself.

“You have an apparently balanced reciprocal chromosome translocation between….. ” blah blah blah, my brain fuzzed over and I searched for a pen and paper so I could make him repeat it and spell it out so I could spend the next week, month, maybe even year, researching the heck out of it. He promised to send the full diagnosis to me in an E-mail and then referred us to a genetic counselor to talk about it with us in more detail.

The basic gist, without going into crazy, sciency detail that I’m sure will make all your eyes glaze over, is this: I am a carrier of a chromosome issue. Since I’m only a carrier, it does not affect my own health. However, if I pass it on to one of our babies, it results in profound developmental problems. Any baby of ours that inherits this issue from me has a 97-99% chance of dying during pregnancy.  1 in 500 people are carriers of a chromosome translocation, but there are a zillion types of translocations out there, and they all vary in their severity. The one I carry is very severe.

He said there was a technology available to us, called Pre-implantation Genetic Diagnostics (PGD), which has to be done in conjunction with In-Vitro Fertilization, that could help us ensure the success of our next pregnancy. Or we could continue to try naturally and risk more losses.

I was shocked. I was scared. But I was also immensely relieved.

You can’t understand what it’s like to keep losing babies without an answer as to why. It’s not only tragic, but it’s also infuriating. How could no one tell us what was going on, with all of the modern medical advancements? I had been surprised over and over again in the previous 3 years, how little is known about early pregnancy and miscarriage. And how little the medical community did for us, especially after the first two losses. We were finally referred to the specialist after the third.

We had educated guesses along the way. We had misdiagnoses. I got the usual “you probably just have bad eggs” explanation multiple times. My gut told me that was wrong. And I pushed and I pushed to try to figure out what was really going on. But after the 4th miscarriage, where we thought we’d had a diagnosis and solution, but lost the pregnancy anyway, I began to accept that maybe, at the ripe old age of 30, I, for some unknown reason, already had “bad eggs”.

I had started taking a hormone that was supposed to help with egg quality. And despite my shattered heart and exhaustion from going through so many pregnancies and losses, we were going to try again and just helplessly cross our fingers. Again.

That’s where we were when I got the call.

In that moment, everything changed. And yet… nothing really changed.

We still had lost four of our very-wanted pregnancies. And now I knew for sure, their losses could not have been prevented. I was born a carrier of this condition. There’s nothing I could have done to prevent those babies from dying. I was told something similar after my first miscarriage. I was told it wasn’t my fault, and there’s nothing I could have done differently. But, as I’ve seen with other mothers in my shoes, in your core, it’s hard not to accept responsibility. Especially when no one can tell you for sure what happened. I felt, after every pregnancy, that I was this little embryo’s mother. I was the only one who could keep it safe. And I failed. I knew logically the failure was not mine to bear. But I felt it anyway. And now, with my diagnosis, I had a better understanding of why they didn’t survive. I could stop wondering if my body was toxic or poisonous. I could stop wondering if perhaps I’d taken the right supplement or medication, if things would have gone differently. Now I knew these babies’ fates were decided for them at conception, when they received my translocation, and that I did everything I could while they were around, and had no choice but to say goodbye when their time was up.

I was glad for the answers. But I was scared, also, for the implications. Would I ever be able to have another healthy baby? We had RJ. Surely if we could produce him, we could produce another. The genetic counselor and my specialist also felt confident we could conceive another baby that was not affected by my translocation. And so we decided, in desperation to complete our family without additional heartbreak, to take the most aggressive route available to us. We decided to take advantage of the technology offered to us by our doctor: PGD.

And so, with my diagnosis, although nothing had changed, everything had. Now we had answers. And we had a plan, however daunting.

You can read more about my miscarriages here and I promise to talk more about our experiences with PGD and IVF soon.