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Back to square . . . WHAT? Visiting the maternal fetal specialist

July 22, 2009

I didn’t want to go to the maternal fetal specialist today to discuss my lupus anticoagulant disorder. It felt too painful to go discuss “the next pregnancy” when it should have been a “this pregnancy” conversation. Still, Jack urged me to go, my Dr. urged me to go. So I went. I got there and they said we’ll be doing an ultrasound. I shook my head. My HCG is going down I’ve been told I’ve miscarried, this is just a for future reference meeting. They insisted they had to do an ultrasound since its standard procedure. Cursing them under my breath I went into the ultrasound room. They tried to do it abdominally. I looked at the tech like she’s crazy but she said Well your LMP was May 13. I nodded but I have PCOS so that doesn’t tell you anything. She asked me How far along were you supposed to be? I sighed, About six weeks. So she does the vaginal ultrasound. We see the womb. We see the little sac. We see what is an embryo. I feel emotional as I look at what could have been and again curse them for making my loss more real. Then, she says, Yep you’re right, its measuring at 6 weeks 1 day and the heart beat is 104 bmp which is normal at this stage.

Um. WHAT. THE. FUCK?!?! I kept asking her if it was a mistake, how could this be. I was told I’m miscarrying. I was told not to do an ultrasound yesterday because there’d be nothing to see and you’re telling me that there is a baby in there with a HEARTBEAT and is growing ON SCHEDULE?

The doctor was wonderfully evasive. I got no straight answer. He said its the fetus is in the right place. The fluid is wonderful. The ovaries are marvelous. Had he not known about the HCG he’d tell me I had a less than 1% chance to miscarry. Except well, there is that HCG test that told me instead of doubling my levels were FALLING!!! He took my blood work for another HCG. He said if the numbers keep falling I will have a miscarriage but the fact is that so far the baby is growing according to schedule. I guess no one told it the numbers were falling. He said it happens sometimes. I told him I HAVE NO SYMPTOMS. I don’t wake up to pee in the middle of the night. I feel lovely! He said while it can be a factor, he pointed to my ultrasound and said, that’s the most conclusive data.

My head is throbbing and I’m shaking. I don’t know what to do or how to feel. I called my doctor’s office but they scheduled me for two weeks from now? You’re fucking kidding me right? I just sent her an e-mail and we’ll see what she says. The specialist said I am cautiously hopeful for you. I wish I knew what *I* should feel right now. I crashed so low last night. I fell into the deepest caverns of despair and now you’re telling me maybe? This is the appropriate word for emotional roller coaster.

Now I’m supposed to wait for HCG results tomorrow. I’m so exhausted, so drained, so confused, so befuddled, so perplexed I don’t know whether to cry, or laugh, or smile or just pass out from the sheer emotional weight that all of this has.

Has ANYONE heard of this happening?

*Updated to add*: Why did my OB-GYN’s office tell me don’t worry about taking more HCG tests? Wouldn’t you think they’d be frantically trying to retest? I’m so confused.

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28 comments

  1. oh kate! emotional rollercoaster is an understatement. holy crap. i got on to your blog just now to leave a comment on your last post about “how to miscarry” and then i read that you saw baby bug and her heartbeat….with no conclusive answers as to what the hell is happening.

    on one hand i feel so hopeful for you and your little one…on the other if your hcg comes back as lowering, this feels like a cruel joke.

    but either way, these moments…this time you have with your baby bug matters…your love for her little growing embryo matters…and you will carry her until the last moment, caring for her, loving her and holding her…until the end, whatever the outcome.

    kate, kate, kate…i’m so thinking of you and hoping against hope that your story is just one of those medical mysteries that nine months from now you can’t explain and don’t need to explain because you’re too busy caring for your newborn baby bug.

    with care, lil


  2. Oh my gosh, Kate.

    If I could, I’d let you off the the ride right this very second. And your baby would be waiting for you on the other side of the exit gates.

    I have *everything* crossed for you tomorrow.

    I’m hoping that your 2nd beta was just a fluke lab mix-up.

    *hugs*


  3. Oh my goodness — I have never heard of something like this. What a complete and total mindf***. (Pardon the bad words in your comments!)

    I am thinking all kinds of good thoughts for you for tomorrow.


  4. YAY for your miracle!!! After a number of losses, I will tell you what my husband told me and what I have held onto with each day of my pregnancies. We are only given today. We have no idea what tomorrow might bring. Enjoy today for what you have and today you have your baby!!! It is always an unknown journey and you will have your forever to mourn the things that dont turn out as you’d hoped. But you only have today to enjoy your baby today. As hard as it is, try not to think about the threat of a miscarriage. Cherish each day as if this is the ONE. Invest in your baby and love him or her completely. If something unthinkable happens, it will hurt. But you will know that you enjoyed every day of your pregnancy and that your baby felt all the love in the world.

    I cried when I read your post. All I can compare it to is after Nick was born and died, we were told that we had a less than 1% chance of carrying Sophia through the night. The next day, we were told it was impossible that we would go home pregnant. 4 days later, I was home. We carried Sophia for 2 more weeks before she joined her twin brother. It was the most special 2 weeks. I’m so glad that we had them.

    Sending prayers for your little one. I am so happy to hear this news tonight.


  5. My heart goes out to you – I hope that the hcg was just a fluke and that the baby continues to thrive.


  6. I have read a story of a doctor telling his patient she had a blighted ovum and needed a D&C. The mother refused to get the D&C, and it was found soon after that the baby was just fine. This baby went full term and was born healthy.
    I wish I knew a story that included HCG levels. There’s luck coming your way from me! Hang in there!


  7. Oh. My. God. Roller coaster madness is right.

    Sweetheart, keep taking your meds. Treat yourself as pregnant until something happens to conclusively prove it otherwise.

    Ask your baby to stay and keep growing. Read that verse I mentioned, constantly. Do not schedule a D&C. Just wait to see what your body decides, even though waiting is so effing confusing & crazy right now.

    Praying for your miracle,
    Baraka


  8. i cannot believe the roller coaster you have been on! i am happy to hear there is a heartbeat and i hope it stays that way. would hcg injections help i wonder?


  9. oh, and just so you know, i don’t really have any symptoms either.


  10. Wow, this is an unbelievable story. I hope it was a lab f-up, but if not, this is almost worse than just waiting.
    My first miscarriage at 8.5 weeks went relatively quickly. I’d been on progesterone support during the pregnancy, started spotting, found out the baby had died, and was given a script for the med to bring on the miscarriage if things didn’t happen on their own within a week. I started bleeding 2 days later. Had a few days of very heavy bleeding and icky cramping, but not for long. Bled for 11 days total, and then it was over. I didn’t need to fill my script for pain meds.
    Personally, I’d do the same again. I’d be scared of the D&C if there were a way I could avoid it. There’s always a risk of infection, a risk of getting scarring (and possibly Asherman’s syndrome), and a risk of having the instruments perforate the uterine wall, causing even more problems. I would have gone with the meds if things hadn’t happened on their own, and probably would have given it 10-14 days too.
    I would think that if you were to miscarry at 6 weeks, that it wouldn’t be as bad as further on in the pregnancy. Hopefully it won’t happen to you at all, but I thought I’d respond to your previous post too.


  11. OMG, Kate, this roller coaster is insane! The heartbeat is terrific (I hope he gave you the Lovenox), and I truly hope for you that this is it.

    With hcg that high, has anyone brought up the possibility of a vanished twin? Maybe that’s what caused your numbers to go all wonky? IDK, I’m the kind that has to make sense out of everything.

    No matter what though, as long as that heart is beating you’re pregnant and that’s wonderful!!


  12. I’ve heard of it before. when I had my 2nd MC, I had not seen a heartbeat on that u/s and then they did HCG level checks. My HCG levels started dropping, and I was given a 1 week wait before they were going to check again for the heartbeat. During that time I went to a lot of message boards for support and other’s experiences and many told me that they had had an experience or knew some one who had that had fallinig HCG levels, were told they were going to MC, only to have an u/s later show them a healthy baby. Some babies just DONT follow the textbook that those doctor’s read and HCG levels falling dont necessarily indicate an MC….hence, I’d always insist on a follow up u/s before accepting a MC based on just falling HCG levels alone.


  13. It’s me again. I came from LFCA and read through the last few posts. I’m a little peeved off at your OB’s office. It seems like they’ve been causing your more worry than necessary. They shouldn’t have made a diagnosis of MC based on just the HCG levels w/o going in and checking for the heartbeat, and even still, it’s way too early to be relying on just the heartbeat even at 6 weeks. Hmph. Are you happy with them? I’d look around for another office, because really, a lot of this stress could have been avoided with better care.


  14. Lilly, you made a beautiful point. Even if the worst happens at least I had this time. Thank you so much for thinking of me. *hugs*

    Meg, aw thank you so muchhhh. I currently feel like I’m in a cheesy soap opera so maybe some nemesis mixed the results on me, haha. In all seriousness I know the odds are slim that there was a mistake but I don’t understand why my OB didn’t react with a HUH?!?! when she found out and instead just scheduled me for two weeks out. It makes no sense.

    Barefoot, thanks for your well wishes, and please curse away, lol. I’m a potty mouth!

    Michele, I’ve read your story and its broken my heart. You are so strong. Thank you for reading myp ost and for offering me encouragement to enjoy the time I have right now. *hugs*

    Meinsideout, thank you, I hope its a fluke too.

    Jeanine, thank you. I have my fingers crossed for you too.

    Baraka, *hugs* thanks

    Katery, I hope we’re one of the lucky ones and that all it means. I now fully understand why you once said you don’t get too excited too early. We’d be lunatics otherwise.

    Kate, indeed it is quite F#(#(#ed up. Thanks for sharing your experience. It seems almost everyone prefers natural.

    Arminta, no one has mentioned the possibility of a vanished twin, and NOOO he didn’t prescribe me lovenox! He said that he wanted to run mmore tests but his practice doesn’t take my insurance’s lab! So I don’t know what to do. I’m going to talk to my OB about this.

    B Mom, well you give me hope with your story. Maybe some babies don’t follow the usual patterns. I actually read a blog on webmd by a doctor that said HCG isn’t always reliable. I don’t necessarily like the maternal fetal specialist but it was my first time seeing him. As for my doctor, I *did* like her because I had been through three other doctors who refused to diagnose me with PCOS and she was the first one that did. It took me so long to get her that I’ve been afraid to move. Do you think its too early to rely on a heartbeat at 6 weeks? Well, its so confusing as the maternal fetal specialist said the risk is less than 2% (so did my regular doc) but I miscarried last time with a nic strong heartbeat, and the maternal fetal specialist said “anything can happen.” It’s all so round about and confusing. In some ways I feel I’ve been unnecessarily worried, I think its because I’m seeing an OBGYN instead of an RE maybe? My insurance won’t cover an RE so I’ve been seeing an RE.


  15. Here via L&F

    What a rollercoaster! Hugs to you.

    My guess would be a vanishing twin situation where both initially implanted (maybe one earlier than the other), giving you a higher beta, and then one was absorbed and your beta seemed to drop. Either that, or there was a lab error–that is definitely possible.

    I would be so upset with the OB/office and seriously consider changing if I didn’t get a satisfactory response from them.

    I am so glad you got that ultrasound. Crossing everything I’ve got that your bean continues to thrive!


  16. Sheesh! Could they put you through any more ups and downs? I’m sorry you’re on such a rollercoaster ride! I’m praying and hoping that whatever happens it ends up with a thriving viable pregnancy for you!

    ICLW


  17. omg, this is insane! I’d go mad! You are so strong. I’m praying for the very best for you!


  18. I’m so sorry you’re going through such an up and down experience! I’ve heard two similar stories – one from naturopathic doctor and one from an acupuncturist – in which a woman called them because she was spotting and the doctor told her that she would miscarry. In both cases, they went to see the practitioner and they were able to help them avoid the miscarriage and they gave birth to healthy babies. I don’t know if you have ever been to one or the other, but it wouldn’t hurt to go and tell them what is happening to your HCG levels…you never know. I am sending you lots and lots of positive energy. XO


  19. Whaaaaaaaaat? You _must_ feel like you’re in a soap opera. This is insane. But now that I’ve been through a couple rounds with medical “professionals,” I guess it’s not totally shocking. I am just SO SO VERY glad that (a) you got the ultrasound and (b) you’ve shared the story so that if ever this happens to any one of us following your story, we will make the best choice for our little one and our family.

    I still can’t get my head around this news. I can’t imagine being in your shoes. All I can say is that HCG is a bitch to try to make sense of and I have heard of swings but primarily in the contexts of proven miscarriages or ectopic pregnancies. I know there is human error in HCG testing and there are margins of scientific error too as well as variations in the tests between labs. The devil, as always, is in the details. I think the vanishing twin idea makes sense.

    I’m SO SO glad you got this news because now you know to wait it out at the very least and at best…well, that’s what we’re all hoping for.


  20. Wow. I don’t know where to begin. That is so crazy, and I have never heard of it happening. In any case, I will be thinking about you, hoping, and sending good vibes your way over the internet…


  21. Oh my F*ck!,honey I feel for you. This is enough to drive any woman bat shit crazy. It seems like every specialist has a different opinion in these things. Question your doctor about the lovenox. I’m praying for you with all my heart


  22. Wow. Just wow. This post brought tears to my eyes! I’ll be hoping as hard as I can for you that things go well.

    PS – I would have probably had a heart attack right then and there!


  23. my god lady, you win the prize for a resilience, and what an amazing surprise.

    I hope you will find doctors that support your highest and best in all ways. Can you gently part ways with your OB/Gyn?

    I wish on you all good things. Amazing heartbeat!
    And I just want this to work out
    and yes, you deserve a miracle or two or ten.
    warmly,
    Kate


  24. Kate…I’m so hoping for you! It does seem crazy your OB didn’t want to see you right away! If I went in after telling me I was gonna miscarry and then they found a heartbeat, I would not have left the office until I had some answers! The wait I’m sure is excruciating!! I really really hope your baby is fine and that the first test was a fluke. Is it possilbe there were twins and one got absorbed to cause the drop? I’m not really sure how that works…keep us updated as you learn more!!


  25. Yes, it does happen. I know a woman who had rather wildly fluctuating HCG levels for about 2 weeks… she is now 20 weeks pregnant. It can and does happen. I sincerely hope it will happen for you too. If the levels fluctuate, insist on getting u/s before making any decisions about terminating. Best of luck to you.


  26. Oh, when I was reading about this storm, I just wanted to snatch you out of it and give you a big hug. I agree with some of the other gals, perhaps there was a vanishing twin? Wishing and hoping for the best results in the world for you.


  27. That’s insane! I’m so glad it looks like things are working out, and I’m kinda shocked that your doc was so quick to say m/c, given the fact that labs CAN make mistakes, and one beta doesn’t necessarily mean diddly-squat. On top of that, as so many commenters have mentioned, the vanishing twin possibility seems so obvious- why didn’t your doc look into that or test something to find out what was really happening.

    After following your blog, I can say for certain that if my doc tells me I’m having a m/c, I’ll go naturally and hang on to hope for as long as I can.

    And last, but far from least, CONGRATULATIONS!


  28. I have learned from experience that HCG numbers don’t mean Jack. For one thing, different women process the hormones in their blood at different rates, and secondly, labs make mistakes..all..the…time. When I was first pregnant with my little girl my initial beta came back as 40. The second beta came back at only 65. Then the third test came back somewhere around 135. Then the doctor was telling me that the jump up meant that it was most likely ectopic. What they don’t tell you is that there is a margin of error with this test anywhere from 5 to 10 points. If my first # was 35, the second actually 70, and the last 140, the doubling times were actually right on target. With my twins the numbers were also poor, starting at 101 and only increasing to 170. Both of these pregnancies resulted in live, healthy children. In fact, out of 6 rounds of IVF the only time I have had good HCG numbers the pregnancy ended in a miscarriage. HCG numbers lie all the time, but a good ultrasound picture is worth 1,000 words. Best of luck for your little embryo!



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