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8/1/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Evie (ee-vie) was diagnosed with Complete Congenital Heart Block at 18 weeks in utero. Her CHB is a result of Mom's auto-immune disease, Sjogrens. The anti-bodies produced from Mom's Sjogrens disease attacked little Evie's heart while in the womb, destroying the communication between her atria and ventricles. Treatment for CHB is implanting a Pacemaker to instruct the heart for her. Surprisingly, her heart learned to synchronize on its own. Even though her heart rate is less than half the speed of a healthy baby's heart, she survived and thrived inside the womb and was born at 36wks. Weighing in at 5lbs 4oz. Cardio surgeons were ready for her with pacemaker in hand but she was born without complication and seemed to be a happy healthy baby girl.
In addition to the CHB, they realized that her exposure to mom's steroids has stunted some development with her adrenal glands. She does not produce enough natural hormones to deal with daily stresses so she was prescribed hydrocortisone until she grows out of this deficiency. She was monitored closely for 5 days before she was cleared for discharge with no inclination that a pacemaker was needed any time soon.
At three months old, Mom began to notice subtle changes in Evie and she soon began choking and vomiting on her feeds and loosing interest in feeding all together. Vomiting one bottle per day turned into two and Evie found herself back at CHOP for evaluation. Doctors immediately discovered that her saturation levels were dangerously low and put her on Oxygen support immediately. What started as an assumed reflux issue is looking to be much more.Evie has been inpatient in CHOP's Cardiac Care Unit since July 11th. We do not have any answers yet, but this page is just a way to help keep Evie's supporters informed. Her heart has so far been cleared and is continuing to function just fine without intervention. They believe there is an issue with her lungs that is currently being explored.
Updates soon to come. Thank you for visiting and continuing to support sweet baby Evangeline.