Hello Darkness, My Old Friend

Let me start out by saying that baby is fine.

But we had a scare. And I have anxiety. Not a good combo.

I’ve talked on here before about my tendency to fret and worry, mostly in a jokey way, but I’m not sure if I’ve ever come right out and said that I have legit clinically diagnosed anxiety. It’s a disease just like infertility. And also like infertility, it’s not really something that’s readily understood or discussed in society. You can’t make it go away by positive thinking or relaxing. You can’t shut it off. You can do cognitive behavioral therapy, traditional talk therapy or SSRI meds, and all of those things help (although I personally haven’t tried meds), but they’re not a cure. I am currently in therapy. My therapist is good, but I only see her once a week. That leaves six other days for my mind to spin into circles.

Overall I’ve kept my anxiety fairly in check this pregnancy. I for sure had some very anxious bouts. The first trimester in particular was super scary, as was Christmastime. I’ve been keeping it together, though…for the most part.

But now? Sh*t has gone off the rails. Ever since I entered the third trimester, my anxiety has been building. My antiphospholipid antibody syndrome puts the baby at higher risk for stillbirth, so naturally I’ve been obsessing about stillbirth. Is this a productive or beneficial thing to do? Nope. Rationally, I totally know this, but anxiety doesn’t play nice with rationality. It actually beats the crap out of rationality on a regular basis.

Things kind of reached a peak over the last few days. On Tuesday evening I noticed that baby wasn’t moving as much as she normally does, so I did a kick count. A kick count is where you count the baby’s movements—you’re supposed to count 10 movements in two hours. She did her required ten movements in a pretty short span of time, so I stopped worrying.

Then later that night I woke up around 3:45 am. Baby usually wakes up every time I wake up in the night, without fail. The kid likes to party all night long already. But she didn’t wake up this time. I gave her about 20 minutes to start moving and shaking. Nothing. I ate a banana and waited. Nothing. I drank some orange juice. By this time I was wide awake, but baby wasn’t. She did eventually bust out ten movements after the OJ, but it took her the full two hours. Usually it takes her, like, five minutes. I got out of bed and was about to go into Labor & Delivery to get her checked out when Tim suggested I try drinking a Coke as a last ditch effort. I drank a Coke and it worked. She did ten kicks in about two minutes. I was semi freaked out, but figured baby was fine.

That brings us to this morning and my appointment with maternal fetal medicine. I have weekly non-stress tests now, and from 36 weeks on I’ll have them twice a week. A non-stress test is basically where you chill in a lounge chair and a nurse hooks the baby up to monitors. They are looking for baby’s heart rate to accelerate three times in 20 minutes. If that happens, they are assured that all is well. I was figuring the non-stress test would be a breeze like it was the previous week, and that it would provide me with some reassurance.

Only, the baby didn’t pass the test. The nurse told me that the baby did have some accelerations, but they weren’t fast enough. She then sent me for a biophysical profile. This is an ultrasound where they look for three things within 30 minutes:

  1. Baby needs to be seen practice breathing for at least 30 seconds
  2. Amniotic fluid levels must be adequate.
  3. Baby has to move her core back and forth three times, and she also has to show muscle tone, which means things like opening and closing her hand or flexing her leg.

She aced the practice breathing. She also had good amniotic fluid levels. But she wasn’t moving. It took that little runt almost the full 30 minutes to do her required movements. She did pass the test, but only in the nick of time. The nurse assured me that she was fine. She said she was the most conservative nurse there, and that she always errs on the cautious side, but even she felt confident baby girl was good.

So baby is ok. But I am not. I really am not.

I’m 33 weeks today, and my OB has already talked about inducing me around 39 weeks (common practice with antiphospholipid antibody syndrome), so there is an end in site. But I don’t know how I’m going to make it through the next six weeks. I’m not trying to be dramatic by saying that—I really feel like I’m losing it a little. I feel completely overwhelmed with fear and anxiety. I’ve talked to my OB about these feelings. She doesn’t want me to take any anxiety medications because I’m already on so many other meds this pregnancy. She suggested therapy, which I am already doing. Basically the only course of action is to wait it out. I want this baby to be safe and healthy in my arms so badly, but right now that seems so far away.

Surgery On The Horizon

I am now officially a patient of Braverman Reproductive Immunology. Last week, I sent an email to my local clinic telling them I would not be proceeding with my planned IVF. I felt legit sad writing this email, as I’ve become quite attached to everyone there. They are a class act — kind, compassionate and just generally awesome. But alas, it is time to start a new chapter.

That new chapter begins next week. Bright and early Wednesday morning I’ll head to Braverman’s NYC office to have blood drawn for immune testing. 15 vials of blood, to be exact. I asked. The lab rep was like, “Wellll, I usually don’t like to tell people this ahead of time, but…”

Tim is getting three vials drawn, by the way. A mere three.

After bloodwork, I will meet with the surgeon. He’s going to check out the blood flow to my uterus using a doppler ultrasound. I told my boss about this today and she was all, “Oooh, will it be like a weather map?” I don’t know the answer to that, but I sure hope so. Uterine weather map! Just what every gal’s always wanted. Anyway, apparently this doppler ultrasound can help detect endometriosis. Based on that and the rest of the examination, he’ll assess whether I need surgery — if I do, I’ll get it the next day. Unless he’s like, “Hey girl, you do not need surgery. You have the prettiest uterine blood flow I’ve ever seen,” I think I’m going to go ahead with it. I’d really like to know beyond a shadow of a doubt if I have endometriosis.

After surgery, if it ends up happening, Tim and I will stay in a hotel for a couple of nights while I recover. Staying in a hotel near New York isn’t cheap, so we’re pretending it’s a mini vacation. This “romantic getaway” will be our birthday present to each other this year (we both have birthdays in the summer). Surgical vacations, guys. They’re all the rage! Seriously, though, I’m kind of looking forward to a few quiet nights in a hotel, even though I’ll likely be in pain and doped up on opiates. I’ve clearly lost my mind.

That’s about all I got. I won’t actually meet Dr. Braverman this visit (or maybe never, as we will likely get our immune testing results over Skype), so that’s kind of a bummer. If you could send good thoughts my way on Thursday, the day of surgery, I will love you forever. Well, ok, I already love you forever, but I promise to love you forever-er.

Finding Our Way

which-way-to-goI’m not going to lie, these last few weeks have been rough. Really rough. In some ways, this failed IVF cycle hit me even harder than my last miscarriage. I know that might seem strange, but after our last loss, I still had so much hope. I knew IVF worked for us, and it seemed like maybe it was just a matter of time before we got lucky again. But let’s just say the last cycle and its accompanying diagnosis of DOR was a rude awakening. I’m not saying IVF can’t work for us, but it won’t be easy. Tim and I had to think hard about if we really wanted to fight this uphill battle to have another biological child. Because that’s what it is from here on out–a decidedly uphill battle.

So I did a lot of crying, a lot of feeling sorry for myself and, for lack of a less cheesy term, a lot of soul searching. Tim and I had several long, difficult talks. In the end, here’s what we decided.

There’s a limit to how much my body can deal with–I’m talking about the hormones, the poking and prodding, the minor surgeries, etc. I’m almost at my limit.

There’s a limit to how much our family can handle–the stress of endless appointments, injection timing, days off of work and in general putting our life on hold for treatments. We are almost at that limit.

There’s a limit to how much Tim and I can cope with the emotional roller coaster of hope and sadness, hope and sadness. We are almost at that limit.

We have a deep longing to parent another child. We will do almost anything to get there except ruin our marriage, destroy our financial future or negatively impact our relationship with the child that we already have. Do we have a deep longing to give birth to another child that looks just like Lettie? Nope. We want to parent. We want to share our love for life with a child. We want Lettie to have a sibling. These are the things that matter to us.

To that end, here’s our plan.

Because it is covered by insurance, we will do one more IVF cycle with our current doctor, likely in June. To prepare for that I’m taking DHEA and CoQ10 (both supposed to help with DOR). I’ve always read that you need to take these things for at least three months to make a difference, but my doctor thinks it’s still worth taking in the short term. She says three months is what’s been studied, so that’s why everyone says three months. Less than three hasn’t been studied yet, but that doesn’t mean it won’t help. There will be a new protocol this time, called micro-flare. It’s basically the last-ditch protocol for ailing ovaries. Birth control is typically used, but because of my blood clotting issue, my doctor says no birth control for me ever again. So we’ll do estrogen priming instead. Unless something crazy awesome happens (you never know), that’s likely it for us for fresh IVF cycles.

We will keep our phone consults with CCRM and Dr. Braverman next week. We’ve decided not to pursue CCRM beyond that call, but they might say something interesting that we can take back to our doctor. We may or may not end up traveling to NY to see Dr. Braverman for immune testing, depending on the cost with out of network insurance. We have decided that we will ultimately not pursue treatment with him, but I would still like to know if I have any immune issues (other than the one I already know about), should we decide to continue trying on our own or use donor eggs in the future.

If the fresh IVF in June doesn’t work, we will transfer our one remaining frozen blastocyst.

After that? We are all in for adoption. It’s time for a new chapter. We need to move on, and move forward.

We went to our first adoption support group this week. It was kind of great and kind of terrifying. It really put into perspective how long the process takes, and how much of yourself you need to put into it. It has just as much potential for heartbreak as infertility, but hopefully, at the end there will be another child. It’s not a sure bet–nothing is–but it’s as close as you can get in this world.

So here we are.

Still sad from all that has come to pass, yet steadfastly hopeful for the future, we find ourselves preparing for a whole new journey.

Diminished Ovarian Reserve

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I haven’t posted about this yet because there was just too much going on these last few days with all the will-the-embryos-make-it drama. Plus, I didn’t want to drag the embryos down with my negative diagnosis.

Anyway, after my first IVF, my doctor suspected that that I had “some level of diminished ovarian reserve,” but she didn’t sound convinced. Well, let me tell you, she is convinced now. After this riot of an IVF cycle, I have now officially been diagnosed with diminished ovarian reserve (or DOR as it’s commonly known, because the infertility world hearts their acronyms). This basically means that although I am 37, my ovaries are somewhere in their 40s. I’m thinking maybe like 42 or 43? Here’s the weird thing, though. My DOR is a sneaky B. There are three tests they use to determine if your ovarian reserve is low: FSH, AMH and antral follicle count. The first two are hormones. And the last one is how many follicles you have at the beginning of your cycle. My FSH, AMH and antral follicle count are all normal! So my ovarian reserve should be fine as well, right? But I don’t respond well to the IVF medication, I don’t make a lot of eggs and the ones I do make are poor quality. So, boom — secret diminished ovarian reserve.

What does this all mean? Basically, it’s not good. No infertility diagnosis is good, let me be clear, but this one is extra-special fun because the only way to fix it is to turn back time. Will the 23-year-old Tanya please come forward? I’d like some of her eggs. What’s that? It’s not possible, you say? Ok, fine.

Turns out I lost my time machine, so here are our options:

1. My doctor suggested another fresh IVF cycle with a new protocol. She didn’t seem all that hopeful that it would work, though. We are extremely lucky that we have infertility coverage, so this is financially the best option for us. An exercise in futility? Maybe. Even still, this option is not off the table. We could also check out another doctor in our network, but I already feel that mine is the best in the area. It’s for sure worth looking into again, though.

2. Get second opinions. We are definitely pursuing this. We plan on contacting the following:

Dr. Braverman: He’s a reproductive endocrinologist. I already know I have one immune issue because of my elevated anticardiolipins, and I just have a nagging feeling that there are some other immunologic conditions going on here.

Center for Human Reproduction:  DOR is their specialty.

Colorado Center for Reproductive Medicine: All-around bad-asses in the IVF world.

The one problem with this is that these places, awesome as they may be, are out of network, which means that we likely couldn’t afford them anyway. If we’re going to break the bank, it’s going to be for something that’s more of a sure thing. Even still, I think I’d regret it if I didn’t hear what they had to say.

3. Domestic infant adoption. I haven’t talked about this at all here, but we’ve already been researching this one pretty hard-core. I know it’s not an easy road, at all, but I believe that in the end we would have a sweet baby to love.

Neither adoption or fancy fertility doctors are cheap. We could pretty much do one or the other and that’s it, end of story. What will we do? I have no f*cking clue.

Right now I’m going to cry my eyes out and some drink wine.

Lots and lots of wine.

IVF #2: #GoEmbryos #HopeStreet

You guys, thank you so much to everyone who commented on my post or sent me a message yesterday. I even had one friend drop off some marigolds. It was a rough day, one of the roughest I’ve had in a long time, but you all managed to make me feel so loved. It’s pretty easy to feel isolated and alone on this journey, but you have proven time and again that you walk beside me.

After Lettie went to bed yesterday, Tim and I talked for a long time about what to do. I did end up connecting with my doctor, but she didn’t give us a strong opinion one way or another on whether to go for the day three transfer or hope that the embryo grew to blastocyst. We hashed out every single possibility six times over. We even called a real-life friend who has gone through IVF to bounce ideas off of her. We worried about miscarriages and chemical pregnancies and the possibility of a genetically abnormal embryo implanting. We worried and what-ifed until we were about to pass out from exhaustion.

And then we both just kind of stopped. We simultaneously came to the conclusion that we did not want to make a decision out of fear. Neither one of us wants to live our lives like that. And we certainly don’t want to teach our children to be ruled by fear either. For us, all the reasons to avoid a day three transfer came from a place of fear, not hope. So we decided that if the next day our embryo or embryos looked the same or worse, we would go ahead with the day three transfer. We called the acupuncturist and told her to meet us at the clinic in the morning. Then we went to bed, feeling happy with the decision that we made together. I think we both felt lighter. And dare I say it? Hopeful.

But you know how it is. The best laid plans and all that. This morning the embryologist called bright and early and told us that the decent-looking two-cell guy from yesterday was now a bad-ass, grade-1, 8-cell embryo (these are all good things). And guess what else? One of the two poor-quality embryos from yesterday also looked pretty good! The last one was disintegrating (sorry, buddy. I still love you, though).

Well, eff me. This was not the news we were expecting at all. All of you that told me yesterday not to give up were absolutely right. Your prayers and thoughts and good vibes must have worked because those punks are fighting!

So Tim and I reassessed, and again made a decision from a place of hope. We decided that since the embryos were clearly fighters, we were going to let them fight it out another couple of days. On day five the embryologist will check them again–if any are still going and can be biopsied for testing, they’ll do so at that time. I know there are wildly different theories on this in the infertility world, but both my doctor and the embryologist said that if the embryos were going to make it to day five, they would do so whether in the lab or in my body. I trust them on this one. My clinic has really good labs and that is one of the reasons I chose them. And not only do I trust the professionals, but I have faith in our embryos. I believe they can do it. I’m proud of our scrappy little cells.

And yeah, this means that we might not have a damn thing to transfer in the end, but I think I will ultimately be ok if that happens–very sad, yes, but ok.

Because today, one more time, I choose hope.