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Ailyn’s Heart Journey
Oct 19, 2018 Latest post:
Dec 7, 2018
Welcome to Ailyns Heart Journey Page.
Ailyn Diane Rogers was diagnosed at 24 weeks of gestation with critical congenital heart defects. Ailyn was born on September 20th, 2018 (6 weeks early due to her moms severe preeclampsia) weighing 4lbs 15.5 oz and 18 inches long.
They performed an echocardiogram at just an hour old and confirmed that Ailyn has hypoplastic Aortic valve, hypoplastic Aortic arch and a VSD (meaning she has essentially no aorta or aortic valve and a hole in her heart).
When Ailyn was first diagnosed with these CHD’s , the plan was to have her “Norwood” open heart surgery done at 6-10 days old and then have the rest of her heart repaired at 4-6 months old. These would both be serious open heart surgeries that would require her to go on heart and lung bypass machines. However, Ailyn was born 6 weeks early and was too small to have surgery safely. The doctors new plan was to put bands on her pulmonary artery via open heart surgery at 7 days old and have Ailyn on prostaglandins to keep her ductis arteriosis (a duct that carries blood from the heart to the body while they are in utero since the y don’t need lungs) open instead of it closing 24 hours after birth and that would work as her aorta. She will then grow and gain as much weight as possible, remain on the prostaglandins (which have awful side effects) until around thanksgiving when they will do her Norwood open heart surgery.
If all goes well, Ailyn will hopefully be able to come home after her Norwood surgery and before they do the total repair surgery.
Ailyn will also face numerous open heart surgeries as she grows since the donor valve they place in her will not grow along with her. She has a tough journey ahead of her, but she is a fighter and with Gods help, we will get through this!