Join Baby's Fight Against Heart Disease

Update number 2: Just got home from the cardiologist appointment again and had her echo. Well after her echo we sat down and called the pediatric cardiologist surgeon in CHOP for a phone appointment. He said he's NEVER seen a baby with severe aeortic valve stenosis,Hypertrophic cardiomyopathy and Left ventricular outflow tract obstruction at the same time. So from there he basically said he isn't sure if it is even going to be done in CHOP or if we are looking into having her surgery further away. So at this point im either going to wait until her genetic testing comes back to see if that gives any further options or if I reach out and see if any other hospitals have heard of this. I absolutely would hate to switch her cardiologist bc he's been with us even before birth. And CHOP has already done one of her surgeries. I know I'm to advocate for my children but at this point what do I do?

Update... So I didn't update on Fridays appointment and I have a decent amount of messages I figured I would just post an update. Baby girl had her echo and also had an EKG. The echo this time was a lot worse. She has developed quite a bit of thickening of the walls of her heart, Her 2 valves are still leaking, her heart is working to hard so that is causing an enlarged heart. She was going back every month but unfortunately we have to go back to every 2 weeks. She also had her heart monitor back on for 2 days and we will have results soon. They will be getting the whole team and surgeon team together this week to see what the plan is. They said about taking her pulmonary valve and placing it where her aeortic valve is and doing the mechanical valve to replace her pulmonary valve. The issue with that is it can cause further and worse heart failure. So we will be getting a call this week or next and we should know what will be going on.

My daughter was born with aerotic valve stenosis. She spent 3 days in the NICU and was sent home. She then was taken to the ER and life flighted to Danville. Within 10 hours there she was then life flighted to Childrens hospital of Philadelphia. The next morning she was rushed into an emergency catheterization after coding. She then was sent home. We went to a follow up cardiologist appointment and they did a repeat ECHO and she will need an open heart surgery soon to replace her whole valve because now she has a leak in her Mitro valve along with her stenosis. I am trying to raise money for traveling and a hotel during her healing time.