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Notes from the roller coaster, doctor updates

July 23, 2009

Stalking works, it seems. My doctor called me back after an e-mail message and two voice messages. She said she is very confused by the falling HCG but the developing on schedule fetus. However, she said this is good.  I am pregnant and the HCG dropping means diddly squat in light of my heart beating fetus. She does not think I need to retest HCG anymore and we should just monitor the fetus on ultrasound. So to summarize: I am not miscarrying. Yet. I hate saying the word yet but I’ve been down this road before and I know that though they tell me a heartbeat reduces my risk of a miscarriage to 2%, I’ve been the 2%er before. I will remain with bated breath until that child is in my arms.

I called my maternal fetal specialist to get my labwork transferred to my OB’s office since my insurance won’t pay for work done at the specialists. The specialist wants to re-test me for Lupus Anticoagulant and a host of other clotting related issues. If present I’ll be put on heparin/lovenox. Here’s my issue, the tests take about two weeks to come back and that will put me at 8 weeks which is around the time the baby died last time (though I miscarried week 11). I asked them if they could just start me on lovenox and then take me off if the tests were fine, but they said they can’t do that.

They drew my HCG yesterday and so here is how its reading so far: June 16: 3,500; June 20: 3,000; June 22: 3,014

The specialist said the results are meaningless and from now on lets just go by what the ultrasound shows us and not worry about the HCG levels.  He scheduled one for a week from now. I might be harsh here, but easy to say when its not your baby.  I thought HCG levels rise to maintain your pregnancy so if mine aren’t, how am I supposed to shrug and laugh that off? I don’t understand it. How is this meaningless? What if they fall?

Jack has been so strong for me through this whole ordeal. Yesterday though, as we sat over dinner just staring at each other in befuddlement, I said to him our little one reminds me of you. He laughed, oh yeah? how so? I said, she’s a fighter. She doesn’t care about those HCG levels she’s too focused on growing. She’s stubborn like her dad. He winced and went slightly pale. What’s wrong? I asked him. He shook his head When you say things like that it makes it so much harder for me. To know that the baby is fighting to stick around . . . if this doesn’t work out I’ll be crushed. It was surprising to see how emotional he got. Sometimes I forget he is dealing with a lot too.

After my crushing heartbreak on Tuesday, I never imagined I would tell anyone that it seems I am not miscarrying after all, but that seems to be the case. There is still a long road ahead. I have six more excruicating weeks of a first trimester to get through and as any of you IF sisters know, we can’t breathe easy until we’re holding our baby in our arms. I just have to say I never thought my sunflower miracle would really be this miraculous. If this pregnancy succeeds her nursery is going to look like a field of sunflowers. Even if its a boy! Wow, just writing that makes me tense up. To imagine a future nine months from now frightens me. I’m so scared to dream because I’m so scared to fall.

Finally, thank you again so so so so so much for your support and your prayers and your thoughts. Like I’ve said before, no one really knows in my real life and had I not your support and your encouragement and advice I would feel all alone. Thank you for reading and for commenting and for sharing my burden with me. I cannot thank you guys enough, you will never know how your comments kept me afloat as I feared sinking to the bottom of the ocean floor.

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18 comments

  1. I’m floating on the waters of your miracle, sweetie – so very happy for you & Jack! Just try to take it one day at a time, and may God protect the three of you always, ameen!

    Love you,
    Baraka


  2. Holy fuck! (Sorry, but I don’t have an appropriate expression that does NOT include the f word.) I agree with Baraka . . .just take it one day at a time. Wow. Praying for you . . .


  3. Yay! I know it’s still scary, but celebrate the possibility! I know when I get pregnant again (God willing) that I will be an emotional mess through it all, but I still hope that I can enjoy the good things that happy. I’m so glad for you, even though it’s been a crappy week, that at this point you can say your baby is still with you! Praying and hoping for you!!!

    meggomae


  4. For some reason, as I was driving to work today, I thought about your lone sunflower. It made me feel hopeful and peaceful.

    Your little bean is such a fighter!

    I’m praying that you’re able to find some calm before your next U/S.


  5. Hi, I read your lost comment about liking your doctor, and if you do, then you should stay with them. I also only see an OBGYN (not an RE) so while my doctor isn’t THE BEST, he’s as good as an OB is gonna get (for my medical health plan). I’ve just really learned to do my own research and become my own best health care advocate. Doctors are sometimes overworked and see tons of patients. You know your body best, so you may be the best healthcare advocate you have. Stay strong momma. The 1st Tri (after a loss, or two) is very tough, but try to focus on only the best and not the what ifs. Today you are pregnant!


  6. Hi, Here from L&F. I hope everything turns out for you. What a scary, scary road your on. Hang in there-it seems you little one is!

    ((HUGS))


  7. Thank you Baraka.

    Shawna, *hugs* thanks so much. You’re my oldest reader, could you imagine the journey this would take? Wow……. cursing is perfectly appropriate for such a befuddling scenario as this.

    Meggomae, thanks for your well wishes and yes I need to enjoy this moment despite the overwhelming fear that is attached to it. I am praying for a little bundle in your life very very soon. Fingers crossed.

    Meg, aw thanks 🙂 I’m so thankful for your support.

    B Mom, you make a good point, I wonder if OBs are just different than REs… I just have had such bad OBs that I am scared to change though admittedly this isn’t the perfect situation. You are right its very important to advocate for ourselves. Thanks for your support!

    Chelle, thanks, you put it so well at the end 🙂


  8. Holy crap! Come on baby and stick in there tight!!! I can’t believe the blood test takes 2 weeks!


  9. I don’t see why they can’t draw the bloodwork, and then start you on the lovenox till they get the results back. It’s not likely to cause any harm, and if it gives you peace of mind, why not be on it?


  10. “Notes from the roller coaster” would be a great name for your blog. Not that your current one isn’t a great name, just that I don’t think I’ve ever seen the term “roller coaster” used more aptly.

    Anyhow, I HATE MEDICAL ESTABLISHMENTS AND ALL WHO WORK THERE. Seriously, finding a good match, someone who fits with you, a group who you feel like is taking care of you and making decisions in your best interest is like finding a needle in a haystack. Stick with who you like and definitely be assertive – it seems you’ve been quite effective with that.

    Thanks for your comment – no I don’t have kaiser, I was thinking of switching to kaiser during open enrollment but after hearing your opinion I am now thinking of staying put. Problem is, as you know, I HATE MY OBG. I can’t overstate that. I’m hoping my upcoming appointment with the oncologist is productive. I don’t think my anxiety level can take any more frustration. The only good thing about my OBG is that she gave me a standing order for HCG draws which I thought would come in handy should I ever get pg again, but again, hearing your story makes me think otherwise. Luckily she is also ultrasound-happy. Meaning she drags out that machine every chance she gets, even on short notice. So I could probably benefit from that too.

    I don’t know the first thing about hep/lov but I am angry for you at the way your dr’s are dragging their feet. I would try to tell them that the answers they are giving you are unacceptable and putting your baby’s life in danger and that you really need them to find a way to either write the Rx or get the results in faster. If they tell you there’s nothing they can do, ask who you can speak with who can. I don’t think anyone on earth is as bitchy as my obg’s office thinks that I am but sometimes it really pays off. I know you’ll do fine, you already have that maternal instinct. I’m crossing everything I have as hard as I can for you!


  11. Bon, I know! Two weeks is tooo long. I’m going to talk to them on Thurs when I go for my ultrasound.

    Kate I dont know why either. I think I’m decent at fighting for myself but this area is untouchable, I guess they’re afraid of lawsuits, and I am a lawyer…

    Astrid, I’m trying hard to be assertive but boy is it hard sometimes especially when you feel vulnerable and scared adn just wish you could trust your friggin doctor. Thanks for keeping me in your thoughts. Btw- when I wrote that title, I did think “hmmmm now that’s a good blog name!” lol, maybe 🙂


  12. I’m so sorry you have to go through this waiting and wondering. Take care of yourself and try not to stress. I’ll be thinking of you.


  13. Hey you,
    can you be on baby asprin in the meantime?
    and goodness me
    well, I am with the optimists here: the baby is there, on time, and sticking with you. That trumps all.

    Sometimes when I have trouble advocating for myself, I ask myself what I would be willing to do/say for a dear friend, and often it is a whole lot more than what I would do or say for myself.
    You can always start with “hypothetically….” and go from there.
    best of everything to you miracle girl.

    Kate


  14. I have a history of preeclampsia, and while this may or may not be helpful to you, many women with preeclampsia have MTHFR or the lupus anticoagulant and are told to take 81 mg of aspirin in subsequent pregnancies. Maybe you could take that until you find out your test results? You could always call your doc and ask to be safe.


  15. Megan, Thanks so much for your well wishes.

    Kate, Bonnie, I am taking baby aspirin in the meantime. They definitely told me to take that daily, its the further interventions they’re currently running tests on. Mekate, thanks for the advice on how to advocate for myself. Its funny since I’m a public interest lawyer and thats myu job to advocate, but when it comes to myself its harder. Bonnie, I’m so sorry you had to go through preeclampsia. Thanks for telling me that there is a link with lupus anti and preecamplsia. I will be bringing this up with my doctor. I’m just not taking chances.


  16. Hi — here by way of i-can’t-whistle and de-lurking to say: wow, what a couple days you’ve had. I hope for you for nothing but quick-turnaround, clear results from all your testing; insightful, proactive doctors; and, above all, a thriving pregnancy. And a little peace and calm to help it all settle in. Warmly,
    Elizabeth


  17. Thank you so much Elizabeth. Your comment gave me a momentary sense of peace. I appreciate your words 🙂


  18. your hCG test sounds off… most u/s cant pick up anything pre 5000. I think your lab may be off? Your pregnancy is supporting itself and your baby is growing; that is way more indicative than b/w. Cant wait to hear another good u/s report!



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