Dreaming

  I had the craziest dream last night. I was at my parent's farm, digging through some old computer stuff they had. I came across a Sonosite (ultrasound) and it was working, all ready to go. I decided I wanted to take a look at Denali. Instead of taking a trans-abdominal approach, I decided to do it trans-esophageal, which makes no sense. Anyway, I got this beautiful, color picture of her, but I had the overwhelming sense that she was a he. She/he had a beautiful, round head and perfect face! I was so excited! I decided that I had to call the doctor and tell her that she had made a mistake, Denali did not have anencephaly! But then I started looking around back of her head and...it was missing. Even worse, her entire spine was completely open (This can actually happen, but as far as I know, Denali does not have this condition). I was pretty heartbroken. Mom and Benjamin and Samuel were watching and I showed them the damage. They seemed pretty horrified and upset.
  I have no idea what that dream meant, but I think it's probably some anxiety about our upcoming (Thursday) appointment to have a 3D/4D ultrasound. I spoke with the sonographer today, who actually works full-time for my perinatologist, Dr. M, and does the ultrasound boutique on the side. She was out on vacation the day that we had our appointment, so we didn't get to meet her but she was familiar with us. Anyway, she spoke with Dr. M about it and they thought it would be better to do the ultrasound at the hospital with Dr. M present. Totally fine by me. I hope they don't find anything else wrong with her since she has enough going on. But anyway, I'm looking forward to it, but also a little nervous about really seeing her deformity. And John hasn't seen it at all.  From what I saw, her poor little head is just a massacre and it breaks my heart to see it. I know she isn't suffering, but still. No parent wants to see that something that horrible has happened to their child.
  You know what pisses me off about this whole thing? From everything I've read, her little brain developed just fine. There was nothing wrong with it. It's just that her skull did not form and the stupid amniotic fluid actually started to destroy her brain tissue! I keep wondering if that part hurt her. It really makes me angry. She had a perfect little brain and now it's just..."a mass of hemorrhaging neural tissue".
  When we actually had the last ultrasound when she was diagnosed, we had a student sonographer.  I found out that that had actually been her first week on OB. How awful is that? My first week in OB I saw a missed miscarriage and subsequent D&C and then fetal demise. It put me off OB forever. I don't mind gyn at all, but if there's a baby in there, I don't want anything to do with it! I can just imagine how the student felt. I really don't know how anyone works in OB, but I'm glad people do! It's definitely not for me! I can handle adults dying just fine, but not babies and children.
  I've been thinking about some things. John and I went to the Apple Store yesterday to get my new laptop fixed. While we were there, I saw a little boy in a wheelchair. I guess he had pretty severe cerebral palsy. It got me thinking that, as awful as anencephaly is, there are worse things. Denali is going to die, but she will never suffer. She won't be sick and she won't be in pain. John and I won't have to endure the agony of watching our child die slowly from cancer or cystic fibrosis or something like that. So, in reality, if she has to die, anencephaly is a blessing. Her short little life will be lived inside the person who loves her more than anything in the world.
  In other news, John and I got enrolled in the Duke study. I spoke with the genetic counselor, Heidi,  today on the phone. The study involved us sending in Denali's cord blood (I don't think it can be donated here in AK) or a skin biopsy, and blood samples from John and I. They're looking at the genetic and environmental factors in anencephaly. They also require a picture of her head without a hat or bandages. The photos are needed to make sure that she actually has anencephaly and not some other cranial deformity. I was very concerned about the photos. As I've mentioned before, I'm so afraid people will make fun of her and call her a monster or something. I know medical personnel can be cruel! Heidi assured me that the photos are treated with the upmost respect and that they are in a secure database and will not be published. Sometimes they are used for presentations, but we can opt out if we choose. So, I feel much better about that and I'm excited to actually be contributing. The individual genetic tests will not be made available to us, so I'm glad we went ahead with the genetic testing with Dr. M. I'm anxious to find out about those results. I'm pretty sure they will be positive.