Looking at the world from the bottom of a well

The diagnosis of anencephaly was confirmed today. I was told that this time I would not need laminaria sticks to dilate the cervix – I guess because this time I am 13 weeks vs. being 19 weeks last time. That is a big load off for me, at least as far as it goes to the procedure itself. Having the laminaria last time was the most painful, the worst part of the procedure. The worst part. To hear that I probably will not need them again is a small blessing in an otherwise shitty situation.

Basically what I got from today’s appointment:

  • This diagnosis appears unrelated to the diagnosis of the first baby. Although she could not get a reading on the kidney’s because the baby is so small, she said there was plenty of amniotic fluid.
  • She is concerned (finds it “troubling”) that we’ve had two lethal abnormalities back to back and recommended we do genetic testing. The are already drawing blood on me tomorrow for pre-op so she is going to email the doctor who is performing the procedure (the same who did our procedure last time) and tell her to add genetic testing to my bloodwork and also that we want testing done on the baby’s remains. We did not do this last time; at the time everything was a whirl and I didn’t want my baby treated like a “science experiment” as it was already going through enough. Now though, with this being our second loss in seven months, I am increasingly feeling a need for more answers or at least more information. And although I told them I did not want to try again, so it didn’t matter, she said it was too early to make that decision and having as much information as possible won’t hurt.
  • The Husband can also have his blood drawn for testing. She recommended we call the insurance company to see if it is covered. I did today, and they said yes, in some situations genetic testing is covered depending on how the testing is coded on the bill. I called the office to see how it was coded and they weren’t sure and hope to have that answer for me tomorrow.
  • She mentioned a geneticist she thinks we should see. She said she would email that doctor today, but there as no rush to get in and see her.
  • She recommended I start on 4 mg of folic acid now. 
That’s really all I can remember right now. Everyone at the doctor’s office was so nice to us. They immediately took us out of the waiting room so we wouldn’t have to wait with a room full of pregnant people (I was barely sitting for 30 seconds after checking in before they whisked me away). The nurse, P, who saw us on our first appointment gave me a hug and told me to call her if I needed anything at all, even just to cry. Dr. S yesterday was, in my opinion, good about giving the news, and Dr. M was today as well. I know that nobody goes in to medicine to have to deal with this, and to deliver news like this but I think they were as honest and direct as possible while still being sympathetic and understanding.
 
I’ve also reached out to the perinatal counselor who facilitates the support group I’ve been attending. She too is in disbelief that this has happened to us again and has reassured me that the team of doctor’s I’ve seen/will be seeing are right on point and will take good care of me. She’s also been mighty supportive of me and my strength that I can get through this.
 
We hadn’t even told our families that we were pregnant again. The only people who know are my friends K and N, and the ladies in my support group. And now, The Husband wants to tell our parents (at least my parents anyway) since I will be having another procedure. He thinks they should know. I am of the mind right now that all this will do is get them upset. Not only will my mother be upset to see me like this and to know this is happening to me again, she’ll also be upset that she’s losing another grandchild. She has no living grandchildren and I know how excited she was with Baby #1. I just don’t want to unnecessarily worry or upset them. I’m not sure if this is the right approach to take – and as The Husband points out, what if there is a complication with the procedure this time? The first one went smoothly, and I’ve been told this one should be less stressful since I am earlier along, but I’m still scared. And I know he is too and he doesn’t want to be alone waiting at the hospital.
 
I just can’t believe I am in this place again. My emotions are ranging from disbelief, to sadness, to confusion, to hopelessness. The Husband said today he doesn’t know where we go from here (with regard to trying to have a family) and I feel the same way. Last time I felt a lot of anger and so far I haven’t felt much anger (yet), just the sadness. I’m not looking forward to the procedure and I’m hoping the aftermath this time isn’t as bad since I’m not as far along. I thought in February I had reached the bottom, and it could only go up from there. It did go up and then it went down again. I am back at the bottom. 
 
I keep thinking back to how happy we were at this time last year. We were trying to get pregnant, and hadn’t gotten pregnant with Baby #1 yet. We were celebrating our 5th wedding anniversary down in Palm Beach. Everything was happy. Now a year later I feel lost. Our anniversary is in two weeks and I don’t even really care to celebrate. I just wish I had a do-over, or I could wake up from this nightmare. 
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19 Responses to Looking at the world from the bottom of a well

  1. There are no words. I am so very sorry. I'm glad you have your support group and hope that talking to other people who can empathize offers you some comfort. I can't even imagine being back at the “bottom” – I dread and fear that constantly. I'll be thinking of you and hoping the D&C goes as smoothly as possible.

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  2. I tried to comment last night, but maybe it didn't work from my phone? I am so, so sorry to read this news. I wish there was something I could do or say to ease your suffering. You and your husband are so strong to endure a loss yet again. I'll be thinking about you and sending healing energy your way.

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  3. Thank you for your kind words and support. Tomorrow will be another hard day for us but at least we know what to expect.

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  4. Thank you so much for thinking of us and your kind comment. We are doing the best we can but as we know it isn't easy. The kind thoughts we've received mean so much.

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  5. myhopejar says:

    I am so so very sorry hon. I can't stop crying. I am so heartbroken for you and your husband. Sending you so many prayers that all goes smoothly with your procedure and sending you strength to get through this. I'm here if you need to talk too. Feel free to send me an email ANY time: johanne@getinthejar.com. Sending you a huge hug ❤

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  6. I am so sorry. I can't imagine the pain you must be feeling right now. I know we don't know each other, but know that I am sending support from blogland. There really are no words to help, but you'll be in my thoughts.

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  7. I found your blog through My Hope Jar and I just wanted to send you some love and support. My heart just breaks for you and your husband and this is just so incredibly unfair. Hugs… big hugs.

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  8. I am so so so sorry. Sending you hugs, light, love, healing and prayers. Justine

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  9. Sending much love and light to you. Hang in there.

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  10. Anonymous says:

    How totally unfair and so very painful. I hope you feel us all wrapping our arms around you hugging you while you somehow get through this and can find hope and light again.

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  11. Hey, I'm a friend of My Hope Jar & a fellow blogger–just wanted to reach out and tell you that I'm sorry for both your losses. *hugs* XOXO

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  12. My heart truly breaks for you and I wish there was some way to make this hurt stop. Wishing you all the strength in the world to get through the next few weeks and months.
    (Oh, and I finally figured out how to comment on your blog – it really wasn't that hard when I'm on a real computer and not my phone).

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  13. Anonymous says:

    I am so, so very sorry for all that you are going through. I am sending so much love to you and yours. Please know that the IF community is here for you now and always. ❤ Hugs!!!

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  14. I am so sorry to hear this. Having lost one child, I cannot imagine going through that pain all over again. Praying for you.

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  15. I also found your blog from My Hope Jar and I just wanted to send you some love and support. My heart breaks for you. I pray that you will find answers and healing and peace as you deal with this horrible tragedy. XOXO

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  16. I am also visiting at the kind request of our mutual friend and fellow blogger, Johanne (My Hope Jar). I am so deeply sorry for your losses and what you and The Husband are going through right now. My heart aches for you. I am so glad you are receiving compassionate and thorough medical care and hope you also let in those who love and long to support you in your healing in these dark days.

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  17. Mel says:

    Followed over from My Hope Jar. I am sooooo sorry, hun. My heart just breaks for you and your husband. Sending up lots of prayers, that God will just wrap you up in His arms and comfort you and bring you peace in time. XOXOXOXOXOXO

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  18. Thank you so much. For this and the support you've shown since I've even started this blog. I'm thankful to have found this community of support online.

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  19. I am so sorry about your loss. I lost my baby Kevin, at gestation week 25 after three IVFs. My heart goes out for you.

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