What now?

I have had plenty of unanswered questions lately, and one of the foremost among them (other than “WHY?”) has been – “Now what?”

Now what do I do?

The Husband, quite practically, reminded me we shouldn’t do anything or plan anything until we get the genetic tests back. Last week we had blood drawn for our karotype testing, and also we are having microarray analysis done on the baby (or “Products of Conception” as the doctors and counselors call it and you prefer that.) So, we should find out the results on all of that before we consider our options. Yes, I realize this is the practical thing to do and that the results of this testing might have a significant impact on the options available to us and how we proceed, or don’t proceed, in trying to have a living breathing baby. A (the genetic counselor) told us that the results might come back perfectly normal and that in the final analysis this might be a string of bad luck. So then we just have to try again and hope for the best. Or they could find something and then we have to consider options other than the old fashioned way of baby making.

I was told to start 4mg of Folic Acid daily, immediately. So that is something I can do now to start getting on the “right track.” I just feel so annoyed by this. The first baby was not Anencephalic and I was taking the same vitamins then that I was taking now. What changed over the several months that resulted in me needing more FA? (Another unanswerable question I’m sure.) I’m not sure if anyone else is on 4mg of FA, but I went to my local CVS and the largest dose of FA they sold was 975 mcg. So four of those pills isn’t even enough. I need to find a place that sells it in larger doses. I guess searching Amazon is in my future, which is fine since I need to buy some Red Raspberry Leaf Tea and they have a good price on it. I didn’t drink it at all while I was pregnant because I was hesitant about drinking an herbal tea, but I guess I can start again. I truly do enjoy the taste, it certainly grew on me over the months I was drinking it. I prefer the Traditional Medicinals brand.

I have also thought about starting Acupuncture. In my opinion this would be mostly to regulate my cycle. Ever since I went off oral contraceptives last year my cycle has been irregular and long. In fact, this most recent cycle where I got pregnant was on its way to being well over 40 days by the time I ovulated. When I mentioned this briefly at my first appointment for this pregnancy the nurse said something like “Well, we know your eggs are good enough to get pregnant…” Well, that doesn’t help me right now, does it? No. I just keep thinking my eggs are “stale” because my follicular phase is so long. Could I be making something out of nothing? Quite possibly. Do I want to do anything that can negatively impact my fertility? No, and I’m very afraid that changing something might result in difficulties getting pregnant. I don’t want to make it harder. But I do want my cycle to be regular. That is, when I get my cycle back. After my last D&E it was eight weeks to the day before my period returned. Eight long weeks.

So, along with the grief and sadness, these are some of the other thoughts running around in my head.  I’m surprised I have room for all of this in there right now. The emotions are coming in waves – first, the grief wave. Then it subsides, then the angry/why? wave. Then a sad wave. Then a jealous wave. Then an angry wave.

There are just too many questions and not enough answers.

If anyone has any thoughts or advice I would love to hear about it. Sometimes I feel like I am navigating this journey blind, and hearing from others is always welcome and appreciated. It’s hard when I feel like I am starting at the beginning again..

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10 Responses to What now?

  1. myhopejar says:

    First of all, big hug hon. I am praying you get some answers soon. I hate the term products of conception and wish doctors wouldn't use it. As for acupuncture, I definitely recommend it for regulating your cycles. Mine have always been really regular, but it has taken me a long time to get a period after a D&C too, except the last one I had. With that one, I was seeing my acupuncturist and I got my period 3 weeks after, and was back on track by the next cycle. Sending you lots of healing thoughts and prayers hon. Big, big hug ❤

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  2. I'm sending you a big hug, too. The feeling like you are starting at the beginning is SO very frustrating. I was there in January and I just could not believe it when my husband and I went to see our RE again. It broke my heart to be sitting in his office (I cried the whole time) running through our very limited options.

    I do think it is great for mental health to focus on something else when you can (even if just for a few minutes a day), including the things you DO have control over (taking vitamins, going to acupuncture, yoga, etc.). One of the things that kept me going in January-April was just doing what I could do and controlling what I could. I don't actually know you, but it sounds like controlling what you can might fit well with your personality (it sounds like you are already doing this).

    Anyway… I love acupuncture and swear by it. I have no idea what it has been for me that has allowed me to have two miracle (REs words) natural pregnancies, but I have been regularly doing acupuncture since my DOR diagnosis. Regardless of whether it can be proven that it helps, I love the way it makes me feel (relaxed and calm). If you try it and like it, I think it is a fantastic thing to do. I was having very short cycles before I started acupuncture and they had normalized to 28 days after 2 months of acupuncture. They were wonky again after I delivered L, but that was normal post-delivery.

    Let's see… other things I have done include yoga, keeping up with exercise, trying to eat as healthy as possible (next to impossible when you are also feeling so sad), taking loads of vitamins and supplements (did a post with details if you are interested, but these were for DOR so not applicable to you), joining a support group, and mostly just doing whatever I wanted to do for myself. I prioritized me and my husband after we lost L and put up a lot of barriers where I felt they were necessary (e.g., friends with newborns). People understood and respected the boundaries.

    Have you read any books about loss? I thought I saw a post that you had done about that, but I found reading other people's stories to be helpful in not feeling alone. Totally unrelated to regulating your cycle, but there it is.

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  3. Also, OMG – such a long comment. Sorry!

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  4. I just found your blog and I'm so terribly sorry for your losses. It seems unimaginably painful to lose two children in a row, due to entirely different conditions. Much love to you both.
    On the folic acid, some doctors assume that your body gets depleted during pregnancy, so maybe that's why you might have an increased need…

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  5. Thank you for sharing your experience. I have talked with two local licensed acupuncturists now to get more info. and think I am going to go for it. I just think getting regulated and not having to wait 8 weeks will really help me feel less stagnant. Thank you as always for your prayers and kind thoughts.

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  6. No apologies necessary, I appreciate that you took the time to share all of that!

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  7. Thank you for your kind words. Regarding the FA, I was told yesterday that the recurrence risk of anencephaly is greater than the risk of a typical baby being anencephalic. So the increased FA brings the recurrence risk down, and now the risk of my future babies being anencephalic should be the same as any other woman. I was told I need to be taking the increased FA for at least three months. It doesn't eliminate the risk for me but it decreases the risk.
    I just read your blog today and I am so sorry for the loss of your twins. I am wishing you all the best and look forward to following your journey.

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  8. I agree that feeling as if I have some sort of control would probably be a good thing – feeling proactive instead of reactive. I do plan on eating better, exercising more, etc. once I get over this initial hump. I did talk to two acupuncturists today for more info. and after discussing with The Husband tonight I am going to go ahead and make my first appointment. I am hoping it will not only help regulate my cycle but maybe help me feel better overall as you mentioned (relaxed, calm, less depressed.) Thank you for your words of support and thoughtful comments!

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  9. Amy Jones says:

    I am sorry for your loss. I hope that every thing is well for you now. You are deeply loved and supported by your family and friends and also readers of your post.

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  10. Thank you for your comment.

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