Thursday, June 16, 2011

Things are going pretty smooth with the exceptions of the millions of thoughts running through my mind

I went to the FCI  last Thursday the 9th , it was  4 weeks  past my intervention surgery. As I have said before we expected the  head lung ratio to go down and it did. The ratio went from a 2.8 to a 2.1 not sure yet what the  lung volume is  yet ( Before the  surgery it was only 12%).  This is the 1st Thursday  since we found out the diagnosis  that we have not had an appointment, I must say I would rather have the appointment so I know what  is going on. Next week we go back and we are hoping that the  ratio  goes up a lil bit more and  that he  weighs close to at least 4 lbs** Keeping my  fingers crossed**
I had a regular prenatal appointment on Tuesday and  everything looks  good. She was happy to see that I gained 3 lbs so that brings me to a total of 8 lbs :) I am measuring at 32 weeks  but I was only 30 at the  time but she said I have been measuring 2 weeks ahead of time so it is nothing to worry about.
 I  find it crazy that tomorrow I will be 31 weeks it is all coming to fast. In one way I am excited to get him here  but on the other hand with the odds stacked against us I would rather him  stay in there for another 30 weeks. Even with all the  complications I have had I have loved being pregnant. Those lil kicks that I get from him  just  melt my heart I cant help but  love them, even the  rib shots  <3
I had a conversation with my  husband the other day  that I never would have though I would need to have  before I even see my baby. What are we gonna  do if  the worst  thing happens.... It is something that I know I need to kinda think about  b/c if anything happens I wont be in the right state of mind to think of anything  but I feel like if I even think about it  than I am giving up hope and hope is all I have.
Everyday that  passes I get more and more scared for what  he is going to have to go through and the road we are about to go down.
**For now we pray that 
-He stays put safe and sound right where he is at until the Dr's say it is ok for him to come( min of 43 days)
-Continue lung growth  and  volume
-NO ECMO when he does come
Thank you for everyone who is  reading this and the  continue prayers that  we are getting, I wish I could thank each and everyone of you.


  1. Julia-
    I just wanted to say that I have been following Cambell's story and praying for you guys. I am so happy to hear of his progress. I just met Dr. Yang on Friday at the Cherubs conference in Orlando, Florida. I thought he was so impressive and he explained a lot about the gel intervention and how excited they were about it! I think it is wonderful what you are doing!
    Mom to Dakota 12-25-2008
    R-CDH survivor

  2. Thanks for all the prayers Jennifer. Yang is a gift from God, there has not been one time that I have not left there feeling like he has not told me and explained to me everything he could. He lives, eats and breaths learning about CDH and is very passionate about it.