Today we were at the doctor's office again. Overall summary, I didn't hear things I wanted to hear.
We got called back and got the awesome tech again, been getting her a lot lately! She was a lot less talkative this time which made me nervous. She took measurements of the ventricles, not much as changed, both right around 2cm (when we started they were at 1 and .9). She was able to show us a bunch of hair that Evie has been growing, looks like she has a whole head of it! Her legs look good, no clubbing of the feet.
But then we looked at her back.
The past 2 months or so we have been high on the news that the doctors strongly believed this was a case of Meningocele rather than Myleomeningocele which is a more rare form but a much "better" form of SB to have. Meningocele means no nerves were affected and the child will most likely like a completely normal life, with perhaps bowel/bladder control issues, but as far as physically, no limitations.
That all changed today.
We saw her spinal cord in the sac.
There it was....you see the 3 lines which make up the cord. They all lay just right and then you see the opening, the bubble, and the middle line of the cord go into the bubble and then back down her back.
I was devasted. Completely devasted. I couldn't look at the screen anymore. I turned my head and just waited for her to finish. The tech couldn't tell me much of anything because she isn't a doctor. So we waited.
Next was the Non-Stress Test. We were on the monitors for a few seconds and I could see all of my contractions on the screen. Sometimes they hurt and sometimes they don't. Evie's heart was unusually low today. Measuring in the 120's - 130's and would spike around 155. I was more concerned about her little heart than my contractions but apparently it should have been the other way around. After 20 minutes the nurse said Evie had passed her portion of the test but that the doctor wanted me on the monitors for a little while longer to assess my contractions.
So we waited on the monitors for a total of about 40 minutes and the doctor said it was fine for me to come off of them.
We met with Dr. Vlastos again today. He said the baby looks good. She weighs 5lb 6oz right now. I asked him about her back. He thinks the nerve has been in the sac this whole time and we just couldn't see it (I was so afraid of this). He did say that her legs are nice and fat and she is moving her toes which means the nerves haven't been so damaged that her legs have no muscle tone - so I guess that is good news.
He checked me today since I was having contractions the entire time and my back has been acting up and I have severe pressure. I am only 25% effaced and not dilated at all. That is good, she needs to cook longer. (although this is good news, it doesn't tell us much because I was only 2cm when I had Gavin by c-section and I was in active labor with my water broken for over 6 hours). The doctor said our new goal needs to be 37 weeks rather than 39 with all of the contractions I am having.
My blood pressure is slowly rising - we are close to the cut-off where I will be put on bed rest. Just praying I keep her in a while longer to finish cooking.
Tomorrow is FCI where I will meet with Dr. Elbaba (pediatric neurosurgeon) about the details of Evie's back closure surgery.
Prayer warriors - keep praying. I am feeling very defeated and attacked. What was becoming a story of a miraculous healing is crumbling in front of my eyes. I know "this is the plan" but it is very hard to cope with this plan that is being uncovered for us. It is nearly impossible to not ask why me? why our baby? I know I have to have faith in this plan, it is just becoming more difficult.