Tuesday, March 5, 2013

Why can't anything just be easy?

This is going to be a very negative blog post. I am in a bad place emotionally. So if you're not in a space to hear negativity, you may want to skip this one. The reason I started this blog is to be a place for others going through similar situations to know they aren't alone. I'm going to be real in expressing how I feel throughout the whole process, and right now I feel defeated and I need to post about it. And no matter how much people tell me to relax, it's a simple fact: I can't. Believe me, I am trying with all of my heart, mind, and soul. This baby is my child. I am her mother. I have now been told that this child of mine who I have spent countless days praying for, immense amounts of money spent on, dozens of needles painfully plunged into my stomach and back to make, endless nights dreaming of....she very well could be ripped away. She could die. I am her mother. Any mother worries for the life of her child. I cannot replace her, so course I'm worried and I can't relax. It is beyond my control.

I have read too many stories about betas not doubling properly and slowing down. I see women post on forums and blog about it all the time. I see these women's cheerleaders and friends telling them it will be okay and that there's nothing to worry about. Then I see them post later that they've miscarried. I am hungry for data and hungry for knowledge. I always have been, that's part of who I am. But I have absorbed way too much data and knowledge along the way and I know way too much for my own good. Non-doubling numbers are not a good sign. I can't put my head in the sand no matter how much I try.

I hardly slept last night, and after my husband left for work I had a good cry. Then I got on my knees and prayed. I was honest with God today. This is extremely faith challenging for me. I am angry that this is not easy. If this does not work out, I will feel played with. If it's destined to not work out, why take me this far? Why? I would feel abandoned by Him. I am being honest, but in the past few years I have prayed for miracles for the things that matter most to me (like my Mom to survive) and those miracles did not happen. At least they didn't happen how I imagined they should.

I know what you all are thinking, and of course the sane part of me is thinking this too. God is in control. God knows what is best for me. God has a plan. But my greatest fear is that it is in God's plan for this to fail. Maybe he wants me to learn something through all of it. Isn't that what most of our failures in life are about? And in hindsight, most of my failures turned out to be blessings. I'm sure even a the loss of our child would be no different. There would be some silver lining I'm sure. I just can't possibly see what it could be at this point, I can't connect the dots. I honestly can't see how I'd heal. I would, but I can't make sense of it right now.

My husband is an incredible man. He has been my rock and I can't believe how lucky I am to have him. He has been worried sick too but has been scouring the internet looking for hopeful stories to counteract the tragic ones I have immersed myself with over the past few years. And it has given me hope, of course. I'd be a fool to lose hope at this point of the game. He said that by this time next week we should have answers. He's always been right when he says stuff like that and I'm sure he's right here too. This time next week we should have answers.

As far as our ultrasound goes, my nurse says I can have my ultrasound this Thursday with my actual RE or this Friday with only the nurse. The RE only comes to our office location every Thursday because it's only a satellite office. Thursday will put me at 6w1d and Friday will be 6w2d. I'm leaning toward Friday but would love to hear your thoughts. I don't want to go in way too early because we might not see something when we could have if we had just waited a day. Also, doing it on Friday gives me the weekend to decompress if we get some kind of bad news.

I'm also a little disheartened about getting incorrect information from my doctor's office. First, I don't think I mentioned this since my beta #2 post but they gave me the wrong beta number for beta #2! I was emailed the results I know it was not my mistake in hearing it. It said it was 294. This put my doubling rate at 44 hours. Well, I get the lab results in my email from the lab and a few days later I saw the results myself. 249. That changed the doubling time to 50 hours. I know it doesn't seem like a big deal, but it frustrates me.

I'm also having issues getting our FET claim properly processed. I have had to call and follow up over nine times already because my insurance is not showing it as submitted. The billing person assured me last Wednesday that it was submitted to the insurance but I have yet to have the insurance company say they've received it. I'm ready to scream about this because we have an HSA and our FET amount hitting insurance will make us exceed our yearly deductible. This means all other health costs, infertility related or not, will be covered at 85%. Until that deductible is met, everything, infertility or not is out of pocket. We've actually met that deductible, but until the insurance company registers that, we continue to pay out of pocket needlessly for EVERYTHING. I'm super stressed, everyone. I am not fun to be around and I'm sure of it is amplified by my bad beta yesterday.

Thanks for the continued thoughts and prayers. This has been so hard. Please pray for my baby and pray for us to have peace.

32 comments:

  1. I am so sorry for what you are going through. There is nothing we can think or do to make this process any easier, because it is our child.

    My betas were always on the low end, but always doubled under 50 hours. We went in for u/s on 5w5d and saw yolk sac. On 6w5d we saw a tiny little heartbeat. Unfortunately the next week the baby didn't have a heartbeat.

    You can read stories online or talk with others who are experiencing what you are, but everyone is different. I hope whatever day you decide to go in, you will see a beautiful little embryo. This whole process is just so hard.

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    1. Oh, I am so incredibly sorry. My heart aches for what you have been through. It is so unfair to lose a baby. *hug*

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  2. I am glad that you let it out here. Its ok to have a negative post! You are in a agonizing situation and we understand! We want you to share everything you want with us here - good and bad! (althought of course I wishi you only had good news!) This is just a cruel limbo to be left in and I am so sorry you are going through it! Hugs!

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    1. Thank you so much for the kind words. It did feel good to get it all out, even if it wasn't puppies and rainbows. This has been absolute mental torture just waiting for that one "good beta" that would put my mind at ease. And never getting it. :(

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  3. Liz, I am so so sorry to hear what you are going through. I am praying for the Lord to hold you close to Himself. Everything you are feeling is totally normal...I would be the same way in your shoes. I am hoping that your little one will be alright...I am praying for you and your family. -Kelly

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    1. Thank you so much. I've never had such a faith challenging situation in my life. I know I'll make it through the other side regardless of the outcome and still have love and faith for Him, but I'm scaring myself with how much anger I can tell will bubble up if I lose this baby. Your prayers mean the world to me, I can't let it harden my heart.

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  4. I'm so sorry. I can't imagine what you're going through. I'm praying for you! I always find Psalm 23 an inspiration passage in times of need.

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  5. I'm sorry :( This is very painful and scary. We are praying for the best outcome (life and time with this precious child). I had a scare last week thinking I was losing my babies and became very fearful. All of the trite sayings like "trust God" become very difficult to live out. I hope this Puritan Prayer (which is also a song called Valley of Vision) brings you comfort. I am praying you will find strength to truly surrender it all to Him...

    "When you lead me to the Valley of Vision
    I can see you in the heights
    And though my humbling wouldn't be my decision
    It's there your glory shines so bright

    So let me learn that my losses are my gain
    To be low is to be high
    That the valley's where you make me more like Christ

    Let me find your grace in the valley
    Let me find your joy in my sorrows
    Your wealth in my need
    That you're near with every breath, in the Valley"

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    1. Thank you so much. I've never been so scared in my life. This prayer you posted is great, and I appreciate you sharing. I don't even know how to surrender. I've prayed for guidance on surrendering, I've asked leaders in church. I've tried. I don't understand what I'm doing wrong but I'm still tortured by all of this. I suppose my time will come where I will learn from this, but for now, as you can imagine, it's extremely difficult. I hope everything turned out okay with your scare. I will keep you in my prayers as well.

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    2. Awe, you're going to make me cry. I'm so sorry. It is so hard to know whether you've surrendered something I think because it is a daily thing. There have been times when I let go of all my pain and anger, but then there are days when I pick it back up again and dwell on it. I will continue to pray for you. God bless you!!

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  6. I know this isn't an easy place to be. The wait after a positive beta until an ultrasound with a heartbeat is torture!!! I have a friend who had betas who weren't rising correctly (and in a much worse way than yours) and that pregnancy resulted in a sweet baby boy who is almost 3 now.
    Try to remember that all pregnancies are different. The RE's nurse said it may be too early to see anything because in some cases it IS too early. They don't want to tell you that you should see a heartbeat and then have it be too early...

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  7. Sorry, apple didn't want me to finish my comment...

    I know it is tough, but try to keep your mind busy until you have the ultrasound. Stressing over it won't help matters at all. Find solice in the fact that you are experiencing symptoms...

    I found meditation podcasts helped me greatly during that time period.

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    1. I appreciate the kind words and the suggestion for a meditation podcast. I decided to download Circle & Bloom's pregnancy meditation mp3s. I forgot to listen to it last night, but I will listen to it this morning before work!

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  8. I'm so sorry.

    First, I would speak to the director of staffing or the office manager. Share your concerns and ask to be placed under a different nurse (if one is available).

    Second, I would go in Thursday. Give you one less day to stress out and you can meet with your actual doctor. By then you should see a heartbeat, or at least a fetal pole/yolk sack.

    Third, request another Beta. I did that once (although I ended up miscarrying even after my number was at 12,000) it at least put my mind at ease. You are the patient, this is YOUR baby, and you have the right to request testing.

    Are they continuing to check your P4 and E2? My RE always says that P4 and E2 numbers can indicate better what's going on then a BETA.

    I hope this helps. I'm an information-junkie too...hang in there.

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    1. Thank you for the kind words. It turns out, I can't switch nurses argh. And I also wasn't able to get a Thursday appt. Two for two! I'm actually relieved that we don't have any more RE requested betas, so knowing how I've freaked out about the ones to this point, I'm scared how I would react to a fifth. I think I'd be better off waiting for the ultrasound but I have no idea what to think since this is uncharted territory for me.

      We haven't been drawing e2, but we have drawn p4. It seems to be okay even though its not sky high or anything. i think the one yesterday was 39 or something. So it's definitely above the 20 they want to see.

      Thanks for the kind words and suggestions. :)

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  9. Oh my dear I'm so sorry. I agree with Ann, this is your body and your baby. I'm keeping you in my prayers tonight, that you can find some peace. Hugs :(

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    1. Thank you so much. I appreciate the prayers! I feel much more peaceful now.

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  10. Go with the RE on Thursday. Normally if you don't see a heartbeat you'll get another one in a week so might as well have the better person do it.

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    1. Turns out I had to wait until Friday. But the good news is, it wont be the crappy nurse doing it. I guess I have to go with the flow on that one. :(

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  11. I am so sorry you are going through this, but glad you were able to get your thoughts out in writing -- I think it's therapeutic to do so. My opinion would be to go with the Thursday ultrasound as one day won't likely make the difference, and you can ask more questions of the RE. If there's nothing else I've learned in this journey, its that we have to be advocates for ourselves throughout this process. There are no stupid questions, there are no stupid thoughts, there is no wrong or right way to feel about anything. Thinking of and praying for you and your sweet baby!

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    1. My nurse makes me feel like I have stupid questions sometimes, I swear! :( You're right though, there is no stupid question. And even if there was, we paid them enough money to humor them. Right? :) Even though I can't go on Thursday with the RE, if I do have questions on Friday, I will demand for the RE to call me. I appreciate the kind words.

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    2. Yes, just remember -- they work for you. You are paying them to help you and guide you through this process!

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  12. I'm so sorry, Liz :( I hope that this upcoming ultrasound will give you the good news that will put your mind somewhat at ease. It's hard playing the waiting game.

    When I first got Caleb's ultrasound, I was 6w2d, but the ultrasound tech said had I come in any earlier, they wouldn't have spotted Caleb because he was so small and I was so early (I thought I was 8w based on LMP). So, if this week's ultrasound doesn't find anything, it doesn't mean anything negative. Next week's ultrasound will give you more concrete answers.

    Big hugs sent your way. I'm always thinking of you!!

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    1. Thanks, Candace. I hope we see something reassuring on Friday (6w2d) but if we don't, I'll hold out hope until next Friday 7w2d.) If nothing then, the RE says this is probably not a good pregnancy. I'm trying not to think about that though and trying to stay positive as long as I can. God knows I've spent enough time in a dark place, I'm trying to stay away from negative thinking for a while, as much as I can help it at least.

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  13. I'm just now catching up on your last couple posts and I just wanted to offer (((HUGS)))). I know this waiting game is hell. And I know I can't say anything to take the stress away. But you're not out! You are still pregnant until proven otherwise. Yes, your doubling time sucks BUT it doesn't have to mean it's over. Truly. My first two betas had a doubling time of 269 hours! Yes, 269. I was even told by my RE to prepare for a miscarriage and stopped my meds! Two days later I had more betas to make sure they were dropping but instead they were back to doubling appropriately. I'm 19 weeks now. Don't worry if you're stressed or doubtful or sad or scared. No matter how this turns out you have an amazing community behind you to support you.

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    1. Oh thank you SO much for posting this. I would have been D-E-V-A-S-T-A-T-E-D if my beta came back at 269. That's unreal. YOu must have been absoltuely beside yourself. It goes to show that miracles happen. I appreciate that you don't think I'm crazy to be stressed, doubtful, and sad. Sometimes I feel like people think I'm crazy to feel that way. It's hard facing the mortality of a child you've wished for and worked to have for so long. I appreciate the kind words.

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  14. I'm sorry this is such a rough time for you. You are correct in that there are many stories of betas not doubling or growing at the rate they should, and ultimately not having a happy ending. However, I have also read many blog stories with poor beta numbers that turned into a healthy baby in the end. There is definitely still hope.

    I totally understand the stress of worrying about your baby. When I went in at 6w,3d we did not see a heartbeat. Went back at 7w,3d saw and heard a heartbeat but it was low. Went back the next week and heard a very strong heartbeat with good growth! Went back the next week, only to learn my baby no longer lived. I was angry at God and did not understand at all. I was not in a good place spiritually. Hubby and I met with our pasture and that helped a lot. It didn't take us very long to realize we had experienced something we'd never been gifted with before. We got to be pregnant for almost 10weeks! We got to experience talking about baby names and planning the nursery. We got the wonderful moment of announcing our pregnancy to his parents. We are thankful for those small moments, even if we didn't get our happy ending.

    I don't know if that even remotely helps you at all. What I do know is that all is not lost for you yet. God will bless you with the children you are meant to have. I pray that it is this baby, but if that is not God's ultimate plan, He has given you some special moments and maybe that will make it all the sweeter down the road. It doesn't mean it won't be heartbreaking. Believe me, I know. I wish you the best and send you lots and lots of hugs during this time.

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    1. I am so sorry about the loss of your baby. You are a strong person and that must have been incredibly difficult to get through. I am terrified of thinking of those happy moments if this ends up not working out. It seems like thinking of those things would be so much more painful. But who knows how I would actually feel as time passed? I pray we don't have to find out and this works out but it's comforting to know you can heal from it. THank you.

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  15. The doubling slows down eventually - it doesn't just keep skyrocketing indefinitely. This is probably why our clinic doesn't do more than 2 betas, maybe a 3rd if there's extra reassurance needed.

    Also, because you transferred more than one embryo, there is definitely a possibility of both having implanted, and one stopping to develop (and thus no longer making more HCG), and that can also give you weird and decidedly non-reassuring beta patterns.

    I am hoping so very much that you can look back on this later and tell it as a harrowing "goodness, the first trimester can be such a rollercoaster" story, while holding a real live baby.

    Also, can you request to be transferred to a different nurse? I know our clinic has several IVF nurses, and while they each usually handle the patients of a particular doctor in the clinic by default, they don't absolutely have to. I would diplomatically say something like "I know am unusually detail-oriented, but I think another nurse's communication style might work better for me". My son had a NICU nurse who drove me crazy because I am very data-driven and she was NOT, and I am so happy that I asked to be switched when this difference in style became apparent rather than trying to deal with it. Regardless, you have a right to non-sloppy communication of test results and appointment dates, and if you can't switch, I would complain if you are consistently failing to get that.

    As for ultrasound - I would try for one with the actual doctor, rather than the nurse, especially if it's this nurse -- because this nurse doesn't sound particularly awesome, and I think if you are having an ultrasound with some concern ahead of time that things might not be going well, then I think it's extra-important that you have a good rapport with the person who is delivering the potentially not-good news to you.

    6w3d was the very earliest my clinic would let me schedule the first ultrasound, though. They prefer more like 6w5d since the longer you wait, the better your ability to resolve what is going on. If you really really would be devastated not to see a heartbeat, I might wait as long as possible (like even after the weekend). Closer to 7 weeks you'll have clearer answers and a better idea of how the pregnancy is going. So, I might actually suggest to wait until after the weekend if you can handle it, emotionally.

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    1. I should add that from personal experience, unclear ultrasounds are even more torturous than unclear betas (I've experienced each on separate pregnancies). I would strongly recommend holding off as long as possible to a point where you can DEFINITELY expect to see the heartbeat if the pregnancy is healthy and progressing normally. At 6w1d you can probably see a heartbeat, but it's not as clear what the absence of a heartbeat or a slow heartbeat means. Good luck, whichever you chose!

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    2. Thanks for leaving the comment. I think I've mentally prepared myself NOT to see anything at the ultrasound scheduled for 6w2d. I've convinced myself it's just too early. If we do see something, hallelujah. But if we don't, I'll really let the test be the following week at 7w2d. If that doesn't show anything, I'm sure I'll be devastated and my hope will be lost. I'm not sure what the next steps are beyond that but my RE agrees that if we don't see anything next week, it's a lost cause. I'm just praying like crazy we see a heartbeat this Friday out of some kind of miracle and all of this fear and worry can be put aside.

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