Tuesday, December 23, 2014

the other 5%.

Mr. Hope and I went back for a second ultrasound yesterday. We had no idea what we were walking into, and my anxiety level climbed the closer we got to the clinic. But at least we didn't have to wait long after we got there. Before I knew it I was stripping from the waist down and climbing up on the Table of Doom.

We had the same ultrasound tech from Wednesday. She said, "I see a pregnancy that's grown." She told us she saw the yolk sac. I chimed in, "Do you see the fetal pole?" She said, "Give me a second! The whole thing is the size of a pencil eraser." (She said this teasingly, not meanly.)

She zoomed in on the screen. Then she said, "I see a heartbeat. You won't be able to see it - it's just a flicker - but I see it." She told us the baby was measuring 2 mm. I asked her what the heart rate was and she said, "Oh, no, it's too soon for that. We should be able to count next week, when it's a little bigger." 

She said, "The baby's only 2 mm. So it's basically all heart."

When she told me she saw the heartbeat, I started to cry immediately. Just one little tear that fell from my right eye. I turned to Mr. Hope and said, "I read something recently that said happy tears start in your right eye and sad tears start in your left. I thought it was bunk but I literally just started crying from my right eye."

The ultrasound tech said, "You have smart tears."

I got dressed. We sat in another little waiting room. Not even two minutes later, I heard Dr. Smiles calling my name.

We went back to see him. He said, "We have a heartbeat!" He was practically giddy. He told us he didn't really care about the numbers so much as what the ultrasound says. He told us that seeing the heartbeat meant that we had less than a 5% chance of miscarrying. 

I asked again about the low beta. He waved me off and said he's seen women with betas that don't rise for weeks and still manage to have healthy pregnancies. This, to me, sounded like another installment of Fairy Tales for Infertiles. That wild, wacky hope that EVEN THOUGH EVERYTHING SAYS THIS PREGNANCY IS GOING TO FAIL, IT MAGICALLY DID NOT, BECAUSE I AM SPECIAL. I AM THE EXCEPTION.

Mr. Hope reminded me to ask about the cookies. So I told Dr. Smiles that I'd given up flour and sugar and potatoes and bananas and yogurt during my cycle but I'd eaten cookies when we'd done some holiday baking, and I was worried that I'd hurt the baby. He shook his head and said, "Nothing you do or don't do is going to affect this baby." 

He said, "Your uterus is doing exactly what it's supposed to be doing. This is good information to have." 

He said, "If the baby's heart stops a couple of weeks from now, we'll know this was always part of the plan." Meaning, if I lose the baby, the baby wasn't strong enough to make it in the first place.

His enthusiasm was catching. He was thrilled for us. He wasn't worried. He wanted to see us back next Monday, and he wanted that baby to be 9 mm. 

I had to stick around for blood work and to get some meds reordered. Then we got back in the car and started driving home. 

The two of us were stunned. Relieved. And maybe a little bit excited. We didn't have the labs back yet, but Dr. Smiles said he didn't care about them. We were free! We had a heartbeat! Nugget was going to make it! Dr. Smiles seemed to think so, anyway.

I wasn't over the moon, but I certainly felt better. I updated my group of people who needed updating. I went home. I packed up my laptop. I went into work.

I'd been scheduled to take my team out for our holiday lunch, so almost as soon as I got into the office I left again. I thought about telling them. I've been missing so much work. What if they thought I was looking for another job? Or had cancer? I would be missing more work for more ultrasounds.

At the end of the lunch I said, "I wasn't sure if I should tell you this but...I'm six weeks pregnant." They all got crazy excited. I gestured with my hands to keep it down. I told them that my blood levels last week were troubling, but that today we saw a heartbeat. I told them I was cautiously optimistic. I tried to keep their expectations in check. I think they could tell that I wasn't filled with unfettered joy.

Later, I had to apologize to a coworker who needed to reschedule a meeting to accommodate my ultrasound appointment. I went into her office and blurted out, "I'm six weeks pregnant, but my blood levels are worrisome and I had to go back for another ultrasound. They saw a heartbeat but I'm waiting for a call about my blood results and they might call during the meeting so if I run out in the middle, that's why."

Even as I was telling her, I kept thinking, "Why? Why are you telling her? It's just another person you'll have to tell if something happens."

I went to the rescheduled meeting with my phone in my pocket set to vibrate. It never vibrated. I missed the call. When I checked the voice mail, the nurse told me that my beta hadn't gone up much in five days - it rose from 1,461 to 1,508. She said that was low and that if I wanted to, I could come back in on Wednesday or Friday for another blood draw and ultrasound, or I could keep my Monday appointment if I wanted to wait until after the holidays. She told me they were "cautious." Not cautiously optimistic...just cautious. Period.

I felt numb. I knew what that number meant. I went back to my office. I emailed Mr. Hope. I updated my super-secret Facebook support group. One woman wrote, "If I were you, I'd trust the Lord with all my heart and lean not on my own understanding each and every time you try to doubt this precious gift whose heart is currently beating in your womb."

I thought, "What the fuck is that supposed to mean?" I'm not trying to doubt anything. I am trying to understand what's happening with my body. I didn't even think you could see a heartbeat with hCG so low; everything I'd read said you needed to have a minimum level of 5,000 to see the heartbeat. But I'm guessing that's based more on average beta levels by 6w1d.

There is nothing average about my beta level.

In fact, I went from a high first beta (508, 12dp5dt, 3w3d) to a super-low second (1,461, 19dp5dt, 5w3d) to a positively dismal third (1,508, 24dp5dt, 6w1d).

All I could think was, "How could this possibly be a viable pregnancy?"

Dr. Smiles had said I had a less than 5% chance of miscarriage. You hear this number a lot in relation to heartbeats. 

What you don't hear a lot about is that other 5%. The ones who STILL miscarry, heartbeat be damned.

I fear I am in that other 5%.

A coworker had given me tasty pastry as a holiday gift. I ate two of them on the ride home, despite the white flour/white sugar content. I didn't even care. I wanted to stuff down my feelings. I wanted to blunt the pain.

I spent the rest of yesterday in a mixture of numbness and disbelief. Dr. Smiles had seemed so sure that we were in a good place. I believed him. I trusted him. How could he have been so wrong? And if he truly wasn't concerned with the hCG level, why was the nurse basically preparing me for the worst? They consult with him before they call me, so I know that 1,508 must have gotten him at least a little spooked.

What I didn't do is cry. I don't have any tears left.

I had a holiday dinner thing with friends last night. I pulled my shit together and went. I ordered a pasta dish. Fuck it. If my actions don't affect whether or not this baby lives, I might as well have some comfort food. 

I smiled and made jokes. Only one of the women knew that I was pregnant and that I felt certain I was going to lose the baby. She gave me hugs and whispered that I should call her and to let her know what I needed, if anything. 

I drove home.

I heated up the bottle of PIO in my bra. I filled the syringe. Mr. Hope gave me the shot. It fucking hurt. I don't usually have issues with my PIO shots, but now that I'm doing them daily he seems to be hitting more tender places. This time it felt like he was dragging the needle through my muscle. I cried while he was shooting me up. 

I went to bed.

I woke up.

Life goes on. 

I have spent hours Googling things like "ridiculously low beta but normal ultrasound successful pregnancy." I have found no anecdotal stories that match my own. Even the "low beta" women have levels three, five, ten times as high as mine. The stories of women who had betas even lower than mine - women who see the heartbeat with hCG levels under 1,000 - they all seem to lose their babies in week 7, 8, 9.

If I'm going to lose this baby, I'd rather lose her now than wait another three weeks. The longer I go, the more painful it will be, physically and emotionally. The longer I go, the longer I have to wait before trying again. 

And what does trying again look like? I only have one embie on ice. Will Posh Clinic allow me to get another donor set so that I have more than one to transfer on our second attempt? Or do I have to use up all from the first set before I go back for more?  Every FET runs us $2600 out of pocket; every new set of donor embies adds another $500 to that tab. And we have great insurance. We're the lucky ones.

If I lose this baby, I lose the possibility of a biological child for Mr. Hope and me. Even though last week I swore it was the donors' embryo that implanted, the fact that my levels indicate chromosomal abnormalities leaves me less sure of that. What if our embryo "made it"? What if ours is the one fighting to stay alive?

Mr. Hope said, "We could try to get another egg from you." I said, "No. I told you I wouldn't do another fresh IVF cycle. I just can't. We only get one every time. And if we get one and it doesn't make it to blast, it will have all been for nothing. I just can't keep putting myself through this again and again."

He said he understood.

(He may have been lying.)

One of the women in my super-secret Facebook support group did 9 unsuccessful IVFs and three FETs before getting her rainbow baby. She's still pregnant - I think 27 weeks now. She never had high betas her entire pregancy, and they never really doubled normally either. Recently she told me that her tested betas never broke 1,000. And she's pregnant! With a healthy little girl!

Part of me was like, "Oh, great. of course I would know the ONE woman in the history of women who has a miraculously healthy baby with the World's Shittiest Beta Levels." Knowing her - knowing her story - plants that tiny seed of doubt (or is it hope?) that maybe I too will be an astonishing exception to the rule. That maybe I can write my own chapter in Fairy Tales for Infertiles.

Meanwhile, we have Mini-Hope this weekend. I am terrified I will start to miscarry when she is in my house. We are throwing a party Saturday night. I am terrified I will start to miscarry during the party. I am off the week between Christmas and New Year's. I am terrified I will spend this vacation mourning my miscarriage. 

And even as I type this, my boobs are on fire again. They hurt so badly last night - the worst they've been this entire pregnancy. I have heartburn, which I only started to get yesterday. And my stomach feels a little sick, though maybe that's a residual from last night's lobster ravioli and not, you know, morning sickness.

Sometimes I hate my body.

Sometimes I hate my brain.

I really just wish I knew what was going to happen next. This not knowing is making me crazy.


  1. Oh fuck I was so excited for you until I read the beta.....obviously worrying won't help but there's no way for you not to worry.

    Thinking of you and oh so hope you're all gonna pull through this!

  2. Is there any chance of lab error??? Could the beta have been 15,000?? Seems so crazy there would be a heartbeat with that low of a beta...

    1. If we hadn't had the 1,461 last Wednesday, I *might* think lab error (just like if we had a normal beta on Monday I'd think Wednesday's was an error). But I don't think so. It looks like my betas just plateaued. :(

  3. I feel like I sound like a broken record, but I've been in that limbo. It drained everything from me. Try to take care of yourself the best you can, whatever that looks like. I wish I could fast forward things for you. I'm here with you.

    1. Thank you, Sara. This is my fear - that I remain in limbo. I'm worried that on Friday (when we go back) we'll see a stronger heartbeat and growth that measures in line with the age, but that my beta will have crept up another 50. There's nothing I can do at that point but wait it out. Thank you for your support; it means more than you'll ever know.

  4. I am still hopeful for you. I thought betas had to be higher to see a heartbeat too. Hopefully you are just a wonky beta lady in the 95%.

    1. Thanks, Tiggy. I think if my betas were increasing more significantly but not doubling, I might have allowed for that possibility. But the nurse said the increase of 67 is like no increase at all, so...yeah.

  5. Waiting for your update...
    And hoping for the best.
    I have had good and bad cycles. And always read these miracle stories with miracle endings. It did not happened to me. It was always downhills for me.
    But our last cycle was kind of miracle and I am one of these stories. Very low and not doubling betas. Even the doctor came to the heartbeat appointment at 7 weeks with the face I could read: I am really sorry to give you bad news. No one believed. Including me. But we had heartbeat and everything looked good until the baby boy was born! FX!

    1. Thank you for this. I will not give up until Nugget's heart stops beating. About to do an update now.