Today was an emotional and long day. CHOP is huge! The staff is excellent and very friendly. By the end of the day, we definitely felt like we were in the right place for this pregnancy. They were very knowledgable about CDH and are the best in the world at providing special care for infants.
Our day was planned out nicely for us. First, we had a heart echo. That didn't take very long and the results looked good from what we heard. Then, we had an ultrasound. This was not your usual ultrasound - it lasted about two hours. Again, they took measurements and tried to rule out any other abnormalities. After a bite to eat (which, believe it or not, the cafeteria food was excellent), Brandi had an MRI. The MRI lasted about an hour. Both Brandi and Jordan couldn't keep still. Brandi was uncomfortable, so they kept having to retake the pictures. Jordan must have heard the loud sound the machine makes (I had to wear earplugs) because he was moving like crazy. The MRI gives them a better look at the tissue or organs.
From 7:30am to about 5:00pm, Brandi was tested thoroughly. Then, it was time to meet one of the doctors - what we had been waiting for. The prognosis is not good. Jordan had an abnormality where the diaphragm didn't fully complete. The LHR (lung-to-head) ratio is 0.8. The lower end of CDH is 1.0. From what we understand, they had a hard time even detecting a left lung. The lung volume should be somewhere around 26cc; Jordan's is 8cc. If that wasn't enough stacked up against him, his liver is also up - the most significant factor of the severity. This means that a high volume of organs that are supposed to be in the abdomemn are up in the chest. These things added up significantly lower the chances of survival.
Tomorrow is an important day for us. We have to cancel our morning flight to get the amniocentesis. This test will determine if there are other present birth defects that haven't been determined, such as down syndrome. We had chosen not to perform this test up to this point - now it is essential. If Jordan has another defect, his chance of survival is practically 0%. If they don't find anything else, he still has a fighting chance (we heard 31% as a number thrown around). After the test, we will meet with the lead physician and our social worker. It will take up to 4 weeks to get the full results.
Today was hard as we could barely find the strength to walk out of the hospital. It is so hard to know that our boy is going to face extreme challenges. We feel like we've done what we can by providing him the best care. The rest will be between Jordan and God. We continue to pray for his strength to fight and that we will eventually hear good results for this test tomorrow.