In July of 2017, our heart hero, Bella, was born. We didn’t learn about Bella’s congenital heart defect (CHD)–Ventricular Septal Defect, Unroofed Coronary Sinus Atrial Septal Defect, Pulmonary Stenosis, and Hypertrophic Cardiomyopathy–until she was born at 39 weeks and 6 days. Within a few hours of her birth, Bella had difficulty breathing and her oxygen levels kept dropping. She was rushed to the Neonatal Intensive Care Unit, where she stayed for 2 weeks when she was transferred to a different children’s hospital for further diagnostic testing. At 3 weeks old Bella went into early heart failure and shortly after, her doctors decided it was time for surgery. On August 17th, Bella had open-heart surgery to mend her heart defect. 

Shortly after open-heart surgery, Bella started retaining fluid around her body and the fluid began building up in her lungs. At this time, the doctors decided it was time to do a lung procedure called a Thoracic Duct surgery for Chylothorax. It was then we discovered that Bella has a chronic lung disease called Congenital Pulmonary Lymphangiectasia(CPL). Bella was intubated for 8 weeks as the Lymphangiectasia kept causing her lungs to collapse, thus making it extremely difficult for Bella to breathe on her own. At one point during these 8 weeks, Bella’s doctors called a meeting to discuss Bella’s complications and we were told to prepare ourselves that Bella may never come home. We were absolutely heartbroken. The day before Thanksgiving the doctors tried to extubate Bella, but within an hour Bella started struggling to breath and her oxygen levels started dropping drastically, so the doctors decided Bella needed to be intubated once again. On December 6th, a day before her daddy’s birthday, Bella decided to give him the greatest gift… she started breathing on her own.

Finally, on January 22nd, after a six month hospital stay, Bella came home for the first time. Bella came home on 16 different medications, vest treatments twice daily, breathing treatments, 24 hour feeds, in-home therapies and many doctor appointments. Although she came home with many medications and equipment, nothing took away from our joy of finally having her home. 

In August of 2018, Bella was hospitalized because of an arrhythmia, meaning she was having episodes of an irregular heartbeat. We spent 5 days in the Pediatric Intensive Care Unit monitoring her heart and trying to maintain her new heart medication. With the help of this new medication, Bella’s heart went back to its normal heart rhythm. 

Overall, Bella has been thriving. In her short life, she has overcome many obstacles. Bella truly has come a long way. Currently, she is not on any medications or breathing treatments. She eats everything by mouth and her doctor appointments are becoming further apart. Unfortunately, Bella’s fight against CHD is far from over. We are never certain what the future might hold for her but we know she is strong enough and brave enough to overcome any obstacle. 

With love, 

Bella & Family

Comments are closed.

« Previous EntryNext Entry »