Riley MRI

Riley MRI
Riley's First Picture

Friday, January 7, 2011

Welcome to Our Blog

We started this blog to keep family and friends up to date on how everything is going with Riley and our family, as we go through our CDH Journey. 

After we initially found out about Riley's condition in October, we made a trip out to Boston and met with the team of nurses and doctors at Boston Children's Hospital (CHB) who will be helping us through this time.  Here is what we were told:

  1. Riley has left sided CDH with a small amount of liver up.
  2. There is a moderate amount of lung visible which puts us on the borderline of possibly needing ECMO (heart/lung bypass) when she is born.
  3. We will be induced around 38 weeks and are hoping to have a daytime/weekday delivery at Brigham and Women's hospital.
  4. Survival rate for CDH babies at CHB is about 80-90% in any given year (was 50% in 1987).
  5. Riley will be put on a special ventilator immediately after she is born and then transferred over to CHB.  Brian will be able to go right over to CHB with her and the doctors. 
  6. Riley will have repair surgery within the first week or so, once she is stabilized.  This is considered the 'easy' part of of the recovery process.
  7. Riley will spend anywhere from 1 month to 4 months in the hospital.
  8. Issues after she comes home may include:
    • Breathing and eating
      • Possible G-tube 
      • Possible oxygen
    • Reflux
  9. There is a CDH clinic at CHB that we will go to as Riley grows up, in order to track her growth and development progress.
We are very optimistic that all will go well.  We are so lucky to have so many people in our lives to help us in this time.  We will be going out to Boston again on January 12th and will have more information (and hopefully a due date!) at that time.

1 comment:

  1. We are thinking of you and praying for you all everyday! Lots of love from Syracoombs!

    ReplyDelete