A trip for Ally

After a few flights and a crazy cab driver we finally made it to our hotel in San Fran on Monday night. We were hoping to get some sleep, but before we knew it the alarm was going off and Tuesday morning came and there we were sitting in a small meeting room anticipating what the day would bring us. Our first appointment was an ultrasound. As we started the ultrasound it brought back so many memories of when we had been told about Ally's diagnosis, but as the two hour ultrasound passed, we felt more relaxed and relieved.  We saw Ally kicking her legs and looking like she is going to be a talker. After the two hours the doctor came in and did a little more looking and then we talked about her diseases. First her spine, her lesion is an L3, which we were kind of disappointed by since we thought it was an L5 but they can still be off by two and its still on the lower part. Next her ventricles in her brain were only a 12. When they were first measured a month ago they were an 11.3. And last but not least the Arnold Chiari was consider to be minor. He said she was doing better than most average spina bifida babies at this point. We were so happy to hear all of this and knew that our prayers had been answered. We headed back down to meet with Rachel. Rachel is a nurse at UCSF and she put our whole schedule together for while we were there. We would meet with her after every appointment and talk about our appointments. There is no way we could have done it without her. Anyways we went back down to meet with her only for her to tell us we needed to go back up to ultrasound to have my cervix measured. so after that was done back down we came and Rachel informed us that we barely by the skin of our teeth made the cutoff for my cervix being to small and not being qualified for the surgery. We had mixed feelings after this about the surgery if that was our sign not to do the surgery or if it was a sign that we should. We had no idea what we wanted so we decided to go to all our appointments with open minds and hopefully Thursday we would have a clear enough answer on what we should do. The rest of Tuesday was full of appointments with a lot of different people. Our day finally came to an end and all we wanted to do was eat dinner and go to sleep.
The next morning started a little later about 9:30. Appointment after appointment we listened and learned. The worst part of the day was the MRI. I have never had an MRI so i was nervous but knew i would be fine. As soon as i was taken back i started to freak our seeing how little the tube was and i was not sure if i could do it. I laid on the table and they started to put me into the machine, my elbows were touching the sides of the machine and the top was only a few inches from my face. I was told i could not listen to music so they gave me earplugs and said to take a nap. I kept thinking if i feel asleep i would wake up and freak out so i just laid there for 3 hours with my eyes closed and tried to think of any thing i could. It worked because i finally was able to get out of there. By the time we were finished it was too late to get the results so we would have to wait until morning. We went to dinner and tried to make a date night while we had the chance. You would think sitting in meetings and then laying on a table for that long would be easy, but i felt like i had ran a marathon. So after dinner we headed back to our hotel and relaxed as much as we could. We had a big decision that we would HAVE to make in the morning, and on top of that Deegan was home sick and not being there to take care of him was really affecting us.
Thursday morning came and we met Rachel before our day began. She took us into a small room and told us she called over to get our MRI results the night before so she could have them for us in the morning. She had this look and a different tone in voice that made us extremely nervous. She started off by drawing us a picture of a brain and the Arnold Chiari. Then she told us that Ally's Chiari was not considered a level 1 so we did not qualify for the surgery. As soon as those words came out of her mouth it was like all the weight on our shoulders had been lifted and we could breathe normal again. We left with our hearts knowing this was the right decision and we both have a great feeling about things for when Ally is born and in her life to come. We left UCSF with an overload of knowledge about Ally's condition and are so grateful we made the decision to go out in the first place. It was all well worth it and San Fran and UCSF will always have a special place in our hearts!
So what now you ask... Well first we are excited to be home with Deegan and to live life normal and get things ready for when Ally comes. I will continue to see my regular OB doctor and the high risk doctor every month until 30 Weeks. Then i will only see my high risk doctor every week until my c-section is scheduled at U of U.  When Ally is born she will be taken over to primary Children's to have the surgery done on her back and then watched for a few days to see if she will need a shunt in her head. What we have learned about the most is the unknowns. Everything with this disease is unknown until she is born. Which is really hard for people to understand. We have accepted it and will keep praying every day for Ally and her condition. Until then we will keep living life and preparing for Ally to get here.