Hello December

December 1st-  I have to say I am extremely relieved and happy that it is finally December. This has been the worst, longest year of my life. Feb. 24th was the day my whole life changed; since then I feel like I have been living in this crazy bizarro world.  Sure I’ve had some good moments, and had some fun along the way, but always with this lingering grief in the back of my mind and heart. I am ready to start fresh with 2015: a new year and (hopefully) new, better luck.

Dr. F scheduled me for a preconception appointment with one of the Maternal Fetal specialists at the hospital with which she is affiliated. She is not out of Tufts, which is where I have been going. That appointment is later this month. In the past I met with MFM out of Tufts, and genetic counseling from Tufts, but Dr. F didn’t think it would hurt to get a second opinion and hear someone else’s take on everything. Of course we also now have my genetic test results (which we didn’t have back when I met Dr. F), so that will be something new to discuss as well. Today I called Dr. S’s office to check on the status of having my records transferred and they told me the records were mailed on Nov. 24th to Dr. F’s office. I am pleasantly surprised with how quickly that happened. I was mentally preparing myself to have to call several times, follow up, etc. But it seems like this was handled quickly and efficiently, which I like! I didn’t want to have them sent until I met Dr. F and decided I would stick with her, and now that I have I want them there now. And certainly before my appointment with MFM. Patience is a virtue.

I also spoke with A today. I had some questions about Meckel-Gruber and whether any of these mutations are related to NTD’s (I read somewhere online that they were after consulting with “Dr. Google”.) For some reason Meckel-Gruber is the one that is stuck in my head, the one that I am really concerned about. Not sure why. Anyway, if these disorders can cause NTD’s or if NTD’s are a symptom of them, then perhaps both losses are related or have the same cause (so far everyone has said they can’t see any reason or link between the two anomalies.) She basically said that yes, NTD’s are associated, but rarely. Really right now we just need to know if The Husband is a carrier for any of these. To me that is the most important next step. She hadn’t heard back from the lab when I spoke with her this afternoon, and said she was leaning towards just having the same panel (all 54 genes) run on The Husband instead of just trying to isolate the two genes. Fine with me! She also wanted to check the costs if insurance doesn’t cover it and confirm that he would be covered the same as I was. She doesn’t work tomorrow so I am hoping I hear from her Wednesday morning. I have Wednesday off and so it would be easy (for me at least) to head in to the city with The Husband. And The Husband has a crazy work schedule Thursday and Friday, so doesn’t really want to take time off to drive to Boston and back, but said he would because he knows how important it is to me to have answers as soon as possible.

A also said that even if he is a carrier, and I don’t want to take the 25% risk blindly, we have options. IVF, donors, etc. Or earlier testing – amnio, CV sampling. I know what some of the options are with regard to IVF, and I know that it is a lot of money to spend with no guarantee that the baby will survive (even if genetic tests show it is a healthy embryo and doesn’t have mutations.) I don’t want to consider those options right now. Right now I just want to get The Husband in so we can get his results. I know to some people 25% risk doesn’t seem like a lot; but I am coming from just having lost two babies in the second trimester each time. I was pregnant for 19 weeks and 13 weeks respectively before we knew there was a problem and that the babies would not survive or were “incompatible with life.” And then to decide to terminate which, although for us it was the right decision, nobody or couple should even have to decide that or consider it. That 25% seems like such a huge, daunting number when I’ve already been part of the 3% or 8%. BUT I am trying not to think about that, or at least not think about it too much, until we have The Husband’s results.

The holiday was okay. We spent Thanksgiving with at The Husband’s aunt’s house with his family. My mother is a nurse and worked Thanksgiving day so we had Thanksgiving with her and that side of the family (minus my brother, who blew it off) yesterday. Of course we watched the Patriots/Packers game (I was a sad Patriots fan last night). My test results were in the back of my mind the whole weekend though. Saturday night I did have a crying fit, with The Husband pretty much took in stride, and after that did feel better. I have no control over our results. And I just needed to cry it out.

Hello-December-3-cynthia-selahblue-cynti19-32910587-500-286

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13 Responses to Hello December

  1. I so hope December and 2015 are wonderful to you!! It sounds like you have a great plan in place to figure out things out, so it I really hope the future could be me much kinder to you. 🙂

    Liked by 1 person

  2. Happy December to you. I’m hoping it is a good month and perhaps you’ll get some more concrete answers. I’m looking forward to hearing about how the MFM appointment goes – I love mine and find she is incredibly knowledgeable and helpful – here’s to yours being the same way. And also fingers are crossed for speedy genetic testing results for your husband. You are right that there ARE options no matter what the results are and there is probably no better place to be than Boston given the great medical care available there.

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    • Thank you! I am looking forward to having more information. Hopefully The Husband won’t be a carrier for any of the disorders so some of the options might not even matter. And yes, I do feel very fortunate to be so close to a great city where there are plenty of wonderful facilities and doctors.

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  3. Jen says:

    I feel like I was reading what is going on in my own life right now. I just want 2014 to end. Start a new year. New luck. But I did want to add something to this. I know that IVF is only an if necessary option but in the state of MA they will pay for 3 runs of IVF. Here is also a link for you to look at. Just in case. I have been looking at all of this too. Just so that I know my options and if the time comes for me, I can make the best decision. I hope December is a good one for all of us!
    http://www.fertilityauthority.com/costs/insurance-coverage/massachusetts-infertility-insurance-mandate

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  4. myhopejar says:

    I’m so glad your doctors are being so helpful and supportive and it’s good to know you have lots of options, but I think it’s smart to just take it one step at a time and get your husband’s results back first. I am sending you so much hope for a little holiday magic this Christmas and some good news with your husband’s test results and I hope for only good things to come in 2015.

    Liked by 1 person

    • Thanks very much! I think one step/day at a time is all we can do right now, and makes it seem much more manageable. When I start letting my mind wander and let the “what if’s” creep in that is when I start feeling out of control and hopeless. So I’m working on being mindful of my thoughts too.

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  5. Caroline says:

    Hoping it’s a great month and year for you! 2014 has been my worst year too. You are not alone friend

    Liked by 1 person

  6. I don’t know why I’m not getting emails when you blog! I’ll have to check out what’s wrong… Happy December! Hoping the Holidays go as smoothly as possible. I’ve been crying it out too… It’s been 3 weeks and I have not heard anything back yet. The waiting has been horrible. 2014 has been my worst year too… I’m really hoping for a better year for all of us. ❤

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