Greetings and Salutations!!
Welcome to Olivia's little chunk of cyberspace. Here's a quick synopsis of the events that have taken place since Olivia was born via cesarean section on March 10, 2008. On March 11, she was taken to the Neonatal Intensive Care Unit for a bowel obstruction and stayed in the NICU for 12 days. It was a very stressful 12 days, Chris and I shed many tears and just prayed that our daughter would be okay. At one point, there were 2 possibilities as to what caused her obstruction (also known as meconium ileus). It was either Hirschsprung's Disease (which is correctable by surgery) or Cystic Fibrosis. After a few days of ups and downs and the scare of surgery, she passed all of the meconium that was backed up in her. We got to take her home on Easter and it was wonderful to have her home with us! Over the course of the next 2 weeks she just wasn't gaining weight and her hunger was never satisfied. She was deemed as "failure to thrive". On April 10 (her one month birthday) she was given a sweat test and on April 11 we got the results that our daughter had Cystic Fibrosis. Her two gene mutations are delta F508 (67% of CFers have this mutation) and 3859 delta C (0.095% have this mutation). Since getting the diagnosis, we have met with her CF Team once a month to monitor her and get her on a routine to keep her wonderful, happy and healthy (and she is gloriously all three). She starts each day off with her Vitamax (fat soluble vitamin) and she takes a pancreatic enzyme (Creon 5) before every meal to help her body break down and absorb the yummy fats in her food. She takes Xopenex through an aerochamber twice a day and Pulmozyme with her nebulizer one time a day. She gets some Miralax with two of her bottles each day to help keep things moving along and Prevacid for her acid reflux. It's a lot for two first time parents, but her doctors tells us that she's doing really well and so I guess we're doing a pretty good job. At her most recent clinic (August 27), they told us that her lungs sound clear and like she can take a good, deep breath. Her Body Mass Index (height to weight ratio) is currently 17% and they want it to be 50% so we have a ways to go, but it a vast imrovement from last month which was 3%.
Ok well, that should bring everyone up to speed.
Please check back often for updates and pictures of Olivia!! Oh and check out www.cff.org for information about Cystic Fibrosis and to see what you can do to help with finding a cure!
Have a great night!