DAY 1 at UCSF FETAL TREATMENT CENTER

 
      We began the day at 3:20 am with Ashlie needing to eat. The MRI scheduled for 7:30 am would not allow her to eat for the four hours prior. We were able to get a couple more hours of sleep before heading in. On a side note; Uber is amazing! I don't even know why anyone owns a car in San Francisco (for my technology impaired family members : Uber The Beginners Guide ). Knowing I can get anywhere in the city for $7 is just one more stress taken off our shoulders. So thank you #Uber, it is the little things that matter right now.

 
     Ashlie is an incredibly strong woman, but you will never catch her taking credit for it. One example, she was dilated to an 8 with Charlie before getting an epidural.  Today she went into this little MRI tube, fully prepared that she could be in there for three hours. With prayer and her strength, she did not move, AT ALL, for nearly an hour and a half.  She got out early because of how still both her and baby Ruger were. After telling her there is no way I could have ever done that, she looked at me and replied "if it was for Ruger or Charlie, you could do it". What an amazing mother my children are blessed with.  As you can see, she is doing most of this with a smile on her face.

She really was just trying to show off how stunning she looks in a hospital gown. 

 
    After lunch and a short walk to a near by pier, we were off to get a fetal echocardiogram. After meeting with two doctors, it was confirmed that Ruger's heart is beating strong. This was required because if our son were to have any other abnormality, we would not be eligible for the fetal surgery. Next we met Rachel Perry, she is the nurse that handles all of the Spina Bifida cases. I already have developed a great relationship over the phone with Rachel in just one week. We are so lucky to have someone that is passionate, hard working, and genuinely loves her patients and career. She is responsive, caring, honest, and blunt. With my own mother being a nurse with all of these same qualities, I could not ask for anything more. She has prepared us for the next two days, and we can handle the roller coaster they are going to take us on.

    I started this blog to keep family and friends updated. I have developed a much stronger motivation to continue writing after learning some disturbing statistics today: between 80 to 90% of Spina Bifida pregnancies are terminated in the state of California. I cannot get over this, I hear it repeating in my head over and over and over.  This was not an option for us and clearly stated within seconds of finding out our son's diagnoses. But how could this number be so high?  I will put the overwhelming California liberal values to the side. When you walk out of a twenty week ultra sound, being told your child has spina bifida, you turn to google. I'm sure many of you did not know what this birth defect was and might have done the same thing. You will find a lot of scary articles, you will find worst case scenario situations, and then you get to the pictures. The pictures might have been the worst part. The beautiful faces and stories that should be at the top of the search are burried. I found myself awake for nearly 30 hours and already more of an expert than your average RN. Scared, upset, and feeling helpless, we decided to go meet the Spencer family just a few miles from our home. Their beautiful, happy, and healthy son gave us so much comfort. While I'm sure Cole will have his challenges, he is a blessing to every life he comes into contact with.  Cole will have independence, I know in my heart he will conquerer every thing that is thrown at him. So will my son. So can many others, but those children need to be given a chance. Not every family will have a Spencer family to meet. If me documenting this journey can help just one family forget terminating their pregnancy then I know I have given a beautiful gift.  Surgery or not, I will raise more awareness and some kind of stronger internet presence that will show the beautiful side of Spina Bifida. I haven't even met Ruger and I know this is something I have to do.

    Yes there is still a big fear of the unknown.  With faith, love, support pouring in from all over, and a beautiful city to keep us distracted; I know we will appreciate every moment. 

   Here is a very informative three part series about fetal surgery, the last episode aired tonight. I would encourage you all to watch: http://video.pbs.org/program/twice-born/

   To those that have text my phone or through Facebook, if I have not responded, I'm sorry. It is hard to get back to everyone. To the mothers that have children with Spina Bifida writing my wife the most supportive, loving, and personal messages... THANK YOU. I haven't cried for a couple days, and I thought I was going to avoid it... I lost the fight and clearly making up for the years of being a"tough guy". You complete strangers that went out of your way today, and wrote messages knowing exactly what she was going through, it meant the world. 

  Every life is precious, and my son is extremely impressive.