26 weeks to 28 weeks..

So I am going to try to leave off from the 1st post I wrote about her initial diagnosis and the following doctor’s appts.

So after February 2, 2012 I went in two more times for ultrasounds. I went in around 26 weeks, because I started to get anxious thinking, praying, hoping she was improving. I noticed her tiny little movements she did give me were getting less and less and not as strong as before.

At my 26 week mark we went in and saw the same doctor as before Dr. Treadwill and there was more bad news. She was even more swollen then before and now she had ascites, which is fluid in her belly. Her heart rate I swear was always at 153 each and every time I had a ultrasound, and that still was the same at that ultrasound.

I walked out of the Drs appt still heartbroken because I was hoping she was improving, but also felt relieved because she was still hanging in there. I feel like she was fighting so hard to stay as long as she could. This didn't really make me loose hope that she wasn't going to survive; this made me really start researching even more at try to figure out something.

With all my research I never really found many success stories other then the facebook group that had children that had lethal and non-lethal type of Multiple Pterygium Syndrome. So I stuck with that group, and I asked many, many questions. I also found around that time a group called Fetal Hydrops on facebook. This was a group of family’s with living miracles and non living miracles of babies who had fetal hydrops. I clinged to each and every miracle store, hoping I will be able to write I have a living miracle.

Also during my research I noticed one particular geneticists that worked alot with Arthrogryposis research and her name was Dr. Hall. I decided if I wanted more information about diagnosis and opinion from someone that really knew about it, I needed to contact her. That’s exactly what I did, I found her number in Seattle Washington and I called her. She of course was out of her office, but she called me back within a day.

The conversation didn't make me feel any better about Addison's future. I explained to her what was going and what some doctors thought she had, the Multiple Pterygium Syndrome and asked what she thought. She was so nice, the most knowledgeable doctor I have found that knew so much about Arthrogryposis. She explained she is retired but is still doing research for this, and the chances of Addison actually having the genetic form of Multiple Pterygium Syndrome would be very rare. Because Addison had fetal hydrops her chances were very low of survival and if she does pass away she most likely had a genetic form of Arthrogryposis, but with a autopsy we might be able to figure it out.

Dr. Hall was more then happy to work directly with the genetic counselor at UofM and insured me that they most defiantly have looked at my case because of the rarity of the situation. She also said she might be able to give me a better diagnosis once she had my medical records in hand.

So with that conversation done and over with, reality started to really set in. I always knew that Addison's chance of survival was very low but after talking to a Dr that actually specialized in this particular condition, something she has studied her whole professional life, I was lost. I started to loose hope and started to worry about everything. I think the only thing that made me survive those 2 weeks after that is the groups on Facebook and their living miracles, even though Drs told them they would never survive.

Also after the 26 week ultrasound I had polyhydramnios. What that is a excess amount of amniotic fluid. I went into the Drs appt knowing I already had that because the size I was I was only 26 weeks along. I looked as if I was full term and I was horrible uncomfortable and in alot of pain. I had an excess amitotic of fluid because typically during a healthy pregnancy the baby swallows small amounts of the fluid, well because Addison's lungs were filled with fluid she wasn't practice swallowing. Without the baby swallowing and her swelling I was huge!

I went on for 2 more weeks after my 26 week ultrasound appt and had my next ultrasound appt at 28 weeks. At this point I had a journal full of questions, and was determined next time I went in to the Drs they WERE GOING TO HELP ME, and if they wouldn't I would find another Dr that would. My first goal was to reach 26 weeks next was 30 weeks. I never made it that far through :(