Antiphospholipid Syndrome

How’s that for a sexy title?

First of all, thank you to everyone who threw some extra love my way after my last post. I truly needed it. This was a rough week, but your kind words helped my heart hurt a little less.

Second of all, I mentioned offhand in the last post that all of the blood tests for my recurrent miscarriage panel were normal. Well, apparently that’s not true.

Some backstory: I had few tests done in December, right after I found out the baby wouldn’t make it. One of these was a test for something called anticardiolipin antibodies. The short explanation is that these antibodies can cause blood clotting issues.

The anticardiolipin test came back “slightly elevated,” but my doctor said that could just be because I was still pregnant.

So I had the test repeated a few weeks later. It was still elevated. At that point, my doctor referred me to a hematologist for further testing. The nurse I spoke to told me that my doctor “wasn’t that concerned about it,” but wanted me to go as a precaution.

I saw the hematologist on the last day of January. He drew a bunch o’ blood, and a little over a week later, his nurse called and told me the labs were all normal.

Apparently she was just kidding about that, because the evening after I wrote my last post, the hematologist himself called and left me a voicemail. It said:

“All of your labs were normal except for the anticardiolipin antibody, which was high. This is part of Antiphospholipid Antibody syndrome. I think you should go ahead and take baby aspirin with low-dose Lovenox the next time you get pregnant. Nothing to worry about—this just helps us plan better for the next time.”

He of course was not in the office on Friday, so I can’t talk to him until Monday. And my own doctor didn’t have the report yet, so I couldn’t talk to her about it either.

So right now I am just trying to do some research to figure out what the heck this all means. Here’s a definition below from the Mayo Clinic, in case, like me, you’ve never heard of this syndrome before:

“Antiphospholipid syndrome occurs when your immune system mistakenly attacks some of the normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins. It can also cause pregnancy complications, such as miscarriage and stillbirth.”

This condition is often treated with blood thinners, which is what the hematologist recommended in his message.

My actual number on the last test was 96. Apparently anything below 13 is normal. Anything above 80 is strongly positive. I don’t know what my numbers were on the two draws before this one, but I find it weird that they were only “slightly elevated” and my doctor was “not that concerned,” when this one was so clearly high.

Meh. I’ve got more questions than answers at this point.

If anyone has this syndrome or has any information about it, I am all ears! My friend over at Spirit Baby Come Home sent me some helpful links, but most of the other stuff I’m finding online is just broad overviews.

I don’t want to get too ahead of myself before I know more, but could this be the reason for my miscarriages? Could this even be the reason for our infertility? Some of the things I’ve read said that this syndrome messes with implantation, so in that way it can cause infertility.

Could this really have been our problem all along?

Little Girl Gone

We got our genetic test results back today. The baby I miscarried was a genetically normal girl.

The nurse I talked to said that there is a very small chance that my DNA could have contaminated the results, but she thinks it’s highly unlikely in this case. She explained why, but I was too out of it to really pay attention.

A part of me wished the baby had been genetically abnormal because then at least I would have known beyond a shadow of a doubt that it was not meant to be.

But she was normal. She should have had a chance. Instead she is just gone.

I want to scream “Why?” at the Universe. I want to kick down trees and bust through clouds and pound my hands on the street. I want to beg and barter. I want, more than anything, for this not to be true. But it is true. We had a little girl. She was normal, she was alive. And now she is gone.

Her name is Anna Adele Best.

Anna is after my paternal grandmother and Tim’s maternal grandmother. Adele is the name of Tim’s paternal grandmother. All those grandmas are in heaven now, if such a place exists, so hopefully they can keep our Anna close and tell her how much she is loved.

The fact that this baby was a girl is hitting me just as hard as the fact that she was genetically normal. I know just what it’s like to love a little girl and it’s pretty much the best thing ever. I know exactly what I’m missing.

It makes me sad for Lettie, too. She could have had sister to share life with, a best friend, a conspirator.

My Anna. Gone from us too soon, but loved beyond measure.

I love you to the sky and back, sweet girl. I hope to someday hold you on the other side.

In Loss Limbo

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It is New Year’s Eve, a time of new beginnings. Yet here I am, in the middle of a long, slow ending. As you know, my baby has died. There is no longer a heartbeat. On Monday, the ultrasound showed that the embryo had “deteriorated.” All signs point to goodbye, so long, see you on the other side. But my body won’t let go.

I’ve had no bleeding since last Wednesday night. As of Monday, my hcg was still rising and my progesterone was sky high.

On the one hand, I am grateful to my body for holding on. I’m grateful that it wants to fight for this. I truly am. Body, you are a rock star. But I also just want this part, the physical part, to be over.

There are three options when you have a miscarriage: wait for things to happen naturally, take a pill called Cytotec to induce contractions, or get a surgical procedure called a D & C or D & E. I had a D & C last time. It was completely fine — some cramping, some spotting, that’s it. This time, I am worried about about the risks of the procedure, which include scarring to the uterus. I really don’t need another thing hampering my fertility. And the miscarriage pill? No way, Jose. That scares me. I’ve read many horror stories, some of which say it’s like labor or the worst pain ever felt. I’ll save labor for live babies, thank you very much. And why, when I’m already in so much emotional pain, would I want to add excruciating physical pain to the mix?

So really, what I want is for this to happen naturally. But I also don’t want to wait forever. Carrying around a dead baby is, well, very sad. To this end, I’ve scheduled a D & C for Tuesday. Due to my hemming and hawing, and my clinic’s holiday schedule, they really couldn’t get me in any earlier. I am fine with that. It gives my body almost two weeks from finding out about the loss to do its thing. If there are no signs of letting go by then, I think I will just need to move on at that point.

My doctor has been on vacation since Christmas Eve. She returns on January 5th and we have an appointment to talk to her that day. I’ll ask her about the risks of the D & C then. If she seems concerned, I’ll suck it up and take the freaking Cytotec.

Fun fact: if I miscarry tomorrow, it will end up being a grand tour. Get pregnant on Thanksgiving, find out the baby is gone on Christmas and miscarry on New Year’s Day. A holiday trifecta, people! And yes, I am kind of laughing as I write this part, because it’s both funny and not funny at all.

While I wait for all of this to go down, I’ve been attempting to eat away my problems. I’ve thrown my no-gluten, no-dairy rule to the wind. I’d really like to be drinking my face off as well, but I’m still feeling nauseous, so alcohol isn’t really in the cards. After almost a week of this, I am, not shockingly, feeling physically awful, so it’s probably time to get back on the horse. Fiiiiine.

What do I long for this coming year?

Hope.

That’s it. I’ll keep it simple. I want this to be a year filled with hope.

And I do feel hope. Even now. Right in the center of my aching heart, I feel it. I now know that IVF can work for us. That’s huge. Sure, IVF contributed to the embryo implanting all askew this time, possibly causing the miscarriage. But that doesn’t mean it will happen like that the next time. Nothing is certain, which means anything is possible.

So here we go: 2015. May it be a hopeful new year. For all of us.

Another Miscarriage or The Worst Christmas Ever

On Christmas Eve night I woke up with more bleeding. I had also developed some pain in my lower right side. I called the doctor’s office around 7 am on Christmas morning. We weren’t sure what to do. Should we start stockings and presents, knowing that the doctor might ask me to come in? They didn’t end up calling me back for an hour and a half, so we did start. What should have been an amazing Christmas morning with Lettie was tempered by the waiting and the pain in my side.

When they eventually called, they told me to come in. So we left Lettie with her grandparents and went. The whole time we were driving the 45 minutes to get there, I felt terrible for leaving her. Who on earth leaves their kid at Christmas? I looked out the window at the sunny sky and bare tree branches and felt like an asshole. I tried to talk to my embryo. Thump, thump, I thought at it, in an attempt to encourage a strong, beating heart.

The doctor’s office was a ghost town. There was one receptionist, one nurse and one doctor. The doctor did the ultrasound and said the blood clot had grown to twice its size. And the embryo no longer had a heartbeat. He looked for that heartbeat…and looked and looked. But it wasn’t there. The embryo had actually grown the right amount since the last ultrasound, but its heart had given up. The doctor was sorry, the nurse was sorry. Even the receptionist looked like she was about to cry. No one wants to give that news on Christmas morning.

The doctor said the baby might pass on its own or it might not. If I haven’t started bleeding before Monday, I’ll go back there and we can discuss a D & C. I haven’t had a bit of blood since Wednesday night, not even spotting.  I’m still having every pregnancy symptom, including morning sickness. My body, it seems, is trying to hang onto this one. My mind understands — I don’t want to let it go, either.

Now I am faced with the fact that not only do I have trouble getting pregnant, but I also have trouble staying pregnant. The doctor is going to run the panel of tests for recurrent miscarriage. I am praying that we get some answers, but I also have to be realistic and accept that we might not. I can’t help but wonder if Lettie was just a miraculous fluke. Like, maybe the Universe was saying, “Ok, her mom is dying, so we’ll let this one baby slide through for her, just this once.” Trust me,  I am grateful for that fluke every single day, but I’m starting to wonder if another one is just not meant to be.

So here I sit, entering yet another season of grief. There’s been a lot of that these last two and a half years — one mom and two babies. I feel like I know exactly what to expect now. There are those first few weeks of crushing sadness, of hiding in random bathrooms to cry in private. Then there are the months of feeling that you’re carrying a weight on your back because you just can’t shake the heartbreak. It might not be crushing anymore, but it is always there. Then, finally, acceptance and hope. So yeah, I know the drill. But I hate this fucking drill. I will go through it again, though, because I have no other choice.

Sleep in heavenly peace, my little love.

A Baby Should Have Been Born Today

In a different world, one where there’s a happy ending to every story, a baby would have been born today. I’d be holding a floppy-headed blob in my arms. Lettie would be meeting her brother or sister for the first time. Tim would be thinking, Holy crap, we’re never going to sleep again.

We all know the story didn’t turn out that way. But I like to think that somewhere, in some alternate universe, it did. Somewhere there is a family of four just like ours. There is a little girl with curly hair and big blue eyes looking at a squirmy baby with a mixture sweetness and mischief. There’s a mom and a dad, falling head over heels for the precious, new life sleeping next to them.

Today would have been my due date. The days leading up to today have been harder than I expected. I don’t have much to say other than this: My heart is still broken. I wish more than anything that I could hold Gabriel today. Instead, there is a baby-shaped hole in our lives where he should be.

Love in the Time of Miscarriage

It’s 8:24 a.m. Tim and I sit in our car in the hospital parking garage. Outside, the September sky is a cloudless blue. The temperature is mild. It’s a perfect day in Philadelphia.

The garage is warm and dirty and dark. There are tire marks on every wall. Even still, it’s better than out there, with all its sun and all its blue. It’s better than watching people walk to work like they do every day, as if this day is no different than any other.

There is no spoken agreement to stay in the car, but neither of us makes a move. We’re listening to a country cover of Coldplay’s “Fix You.” I watch the dial on the dash clock. Even though I do not want to get where I’m going, the thought of being late still makes me anxious.

After all, I have places to be. In six minutes, I’m due to check in for a D & C procedure.

Tim sits at one end of the car and I sit at the other, my shoulder and face pressed against the glass. Through the speaker, Carrie Underwood croons.

Tears stream down your face
When you lose something you cannot replace

I move away from the window. Tim puts his arm around me and I lean my head on his shoulder, like we are two kids in love at the movie theater. Except this is not a movie, and if it was, no one would ever want to watch it. I realize I’m crying, I think for the first time since we found out our baby would no longer grow. I can’t see or hear Tim, but I know he’s crying, too. This is it: goodbye. Once we leave the car, there’s no going back.

And right there, in the saddest moment we’ve shared, I feel it—a fluttery brush of sweetness, a tiny coil of peace. We are going, and we don’t like it, but we are going together.

So we go. The song ends and we step out of the car. The humid air rises around us. The elevator sounds its oblivious chime. Tim is holding my hand, and I’m thinking, Oh, how I love you—deeper, wider, still.

I Just Starred In A Carrie Remake

If you read my last post, you know that I was wondering if I might miscarry on my own before my scheduled D & C.

Yeah. That happened. And people, it was not pretty. It was like I was starring in my own personal horror movie…and I was not one of the lucky ones who survived.

I started miscarrying in one of the stalls in the bathroom at work. That was obviously awesome. As I was losing ridiculous amounts of blood and God knows what else, I could hear the click-clack of heels on the lobby floor and the sounds of women talking about absolutely nothing.

I texted Tim and he hopped in a cab to pick me up. When we got home, it got worse. I started feeling lightheaded, so I called the on-call midwife and she told us to head to the ER.

By the time I actually got into the ER triage, the front and back of my shorts, and the bottom of my shirt were soaked in blood. My shirt? Seriously? As we walked in the nurse said, “What are you here for?” Then she took one good look at me and said, “Oh.”

All told, we were in the ER for seven hours. They did an ultrasound at some point, which revealed that the miscarriage was incomplete. They suggested I keep my scheduled D & C appointment the next morning. I was crushed. After all that, I still needed surgery? No. Just no. Honestly, I think I ended up completing the miscarriage after I got home from the ER, but I got the procedure anyway because I wanted to be sure.

The D & C went smoothly. That was a week ago. Sometime in that week, I noticed my perspective on the whole I-can’t-believe-that-happened-and-then-I-still-needed-surgery-holy-shit thing was changing. Because here’s the deal: when I first found out that my baby had died and my body didn’t realize it for weeks, I felt duped. I felt like I couldn’t trust my body. How could the life inside of me have passed on without my body recognizing it? I remember thinking I just want to be able to trust my body.

I think the fact that I ended up miscarrying on my own was my body’s way of saying, Hey dude, you can trust me. I asked and my body listened. I’m taking that as a win. And yeah, I still needed the D & C. But you know what? That’s ok, too. It was closure. I don’t ever have to wonder if there was something left over that might have caused an infection down the line.

I’m not going to lie: I’m devastated. I wish none of this happened. But it did. And I made it through a week. If I made it through one week, I can make it through another.

Now my heartbroken mind and my trustworthy body are going the only place we can go: onward.

Saying Goodbye

I got word on Monday that my pregnancy was officially non-viable. Much to my dismay, they couldn’t schedule a D & C procedure until Friday. I started spotting yesterday, though, so perhaps I will miscarry naturally before the procedure. Or maybe not. More waiting.

While I wait, I’ve been eating a lot of Doritos. You know, grazing from a family size bag that has been open since Lettie’s birthday party in July. Amazingly, they are still not stale! The miracle of preservatives, my friends. Two nights ago I had Doritos and a half a piece of chicken for dinner. Last night, Doritos and one sliced-up bell pepper. Tonight? The possibilities are endless. A Dorito sandwich, perhaps?

Also while waiting, I named the baby. Tim and I named him Gabriel, which means “God’s able-bodied one” or “God is my strength.” Mostly, we just like the name, but the meaning is lovely. It’s a nice thought to picture baby Gabriel chilling with the Grand Creator, or maybe floating like a light through the universe, making it a brighter place. Of course we can’t say for sure if the baby was a boy, but I believe that it was.

I’ll likely never know why this happened, at least not in this lifetime. I will make peace with that at some point.

But not right now. Right now the only thing to do is to go through it.

Chance of Heartbreak: 99%

I thought long and hard about whether to post about this. Even though I’ve discussed everything on here from ovulation to childbirth to the death of my mom, this somehow feels more personal—and certainly more raw. I still don’t know if I’m making the right decision, but when it comes down to it, I want to share. I don’t want to sit in silence with it.

Several weeks ago I got a positive pregnancy test. It didn’t take very long at all—in fact, we had barely started trying. I was so excited. I couldn’t wait to come on here in a few weeks and tell you all how easy it was the second time around. Everyone likes happy endings, right?

I was much more laid back with this pregnancy. I even had a cup of full-caff coffee every morning! I was determined not to be an anxious wreck for 9 months again. And when some of my pregnancy symptoms started to decrease slightly, I barely gave it a second thought. Every pregnancy is different after all. I wasn’t worried. This little soul came to me so fast that it obviously wanted to be born. And so it would be. End of story.

I saw the midwife at what I thought was seven weeks along. She said everything seemed to be progressing normally. She suggested I get a dating scan to make sure she had my due date right. I made an appointment for that, but the soonest they could get me in was in two weeks.

Those weeks passed uneventfully. This past Wednesday I went in for the scan. As soon as the tech placed the wand on my belly, she said, “I don’t see anything.” Right then I knew something was terribly wrong. Then she told me that maybe I was just earlier than I thought and she would have to do an internal scan.

Finally, after waiting a long time for the doctor to arrive, she did the internal scan. The room was dead silent. I couldn’t even see the screen because they had it facing away from me. The only things I heard the doctor say the whole time were, “measure that” and “that’s not a fetal pole.”

Then he told me that he did see a pregnancy present, but it only measured 4.5 weeks. I was supposed to be nine weeks along by that point. He said that he was 99% certain that I had miscarried, but never expelled the embryo. Then he advised me to come back in a week to be sure. I knew in my heart that there was no way I could only be 4.5 weeks pregnant, but he said that it was worth a week wait to be 100% sure. So I scheduled another appointment for the following week.

I later called my midwife, who suggested I get blood work and have my hcg levels tested. If the levels dropped over 72 hours, that almost certainly meant miscarriage. I went on Friday for the first draw and the second draw will be tomorrow morning. By tomorrow afternoon, I should have a pretty good answer. By Tuesday, I will hopefully know for certain.

So here I sit, wondering how I’m going to get through the next few days. Wondering how I’m going to process the news that I will, with 99% certainty, receive tomorrow afternoon. There is a 99% percent chance that I will drink a huge glass of wine tomorrow night. A 99% chance that I will be wondering, for a long time to come, how this life inside of me could have died and I never even realized it. A 99% chance that I will be wondering how to heal my broken heart.