It does look like Denali is deteriorating neurologically. Her hands are tightly clenched in fists, which is a bad sign. I don't specifically remember seeing her open her hands before, but I had asked about clenched fists and rocker bottom feet and was told that she did not have them in the past. The only part of her brain that is present is the cerebellum. Everything else is gone. The sonographer, Scott, had seen anencephaly before and he said that she was "severe". I was expecting this to happen, but it still hit me hard and I was fighting tears. She is also on the small side, in the 25th percentile according to her abdominal circumference. I was surprised by that! John and I had a little wager going on about her weight. He said that she would be three pounds and I said two pounds. John won! She's 2 lbs, 12ozs! All of my books say that's on the high side of normal for even a normal baby, so, I'm not sure. She is what she is, I guess!
For the first time I find myself questioning our decision to continue to term. I've read some stories from parent's who said that once they saw how sick their babies were they decided it would be kinder to let them die. I understand that. Denali is very sick and I wonder if it would be a kindness just to let her go. But, at the same time, she isn't suffering and she's very much alive. I enjoy feeling her move and I'm enjoying being pregnant. I'm healthy and we're just hanging out. I don't see any good reason to change the plan now.
We did discuss our birth options with Dr. O today. John is concerned about my health having a section. Dr. O said that if we wanted to try to labor and see if she could be born in her amniotic sac, that would be okay and then we could do a section if anything changed. That sounds like a reasonable plan to me. She also said that if we do a section she will sew me up so that I can try for a VBAC if we decide to get pregnant again. Also fine with me! Dr. O very much understands our desire to see and hold our little girl alive and intact and I so appreciate that!
I seem to be in good health and I was happy to hear that I passed my oral glucose tolerance test, with "flying colors" as Dr. O put it. My glucose was 82mg/dL and it needed to be <180mg/dL! Whoohoo! I was convinced I would develop gestational diabetes, but so far so good! My hemoglobin was 11-something and my hematocrit was good. My fundal height was around 30, but I don't have polyhydramnios according to the ultrasound. I did lose 3 pounds, which is concerning to me. As one of my preceptors used to say, "that's a bowel movement" but I feel like I should have maintained or gained at least something. I'm eating a LOT (other than veggies)! And I did ask about the veggie issue and Dr O said my nutrition was good so she didn't seem concerned.
I forgot to mention in my last post that I had spoken with the genetic counselor. She confirmed that I do have a mutation on the MTHFR gene, but that I am also homozygous for a variant on the MTRR gene. She seemed to think that the MTHFR mutation was insignificant, but that the MTRR variant presented a small increase in the risk for NTDs. She advised mega doses of folic acid for three months before ever trying to conceive again, which I will certainly do. I'm really confused about all of this and the more I read, the more confused I become. I understand the biochem and that's about it. I will try to leave the rest for the experts and just do what they say to do!
We did have a blow yesterday and John and I made the decision to find another church to attend. I was planning on having the priest baptize Denali and having her funeral at the church, but that doesn't look like it's going to happen. It's a difficult, unfair situation and it really upset us. Please keep John in your thoughts and prayers as he is really struggling with it. It was really exactly what he needed on top of everything else he's dealing with. :/
Okay, now I'm going to try to get some video uploaded for your viewing pleasure! Wish me luck!
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