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Ava’s Story

Ava was born on 01/04/13. She was born with Ebsteins anomaly, pulmonary artresia, severe tricuspid valve insufficiency and tricuspid valve dysplasia.Her heart is extremely complicated. She is currently 2 years old and was in Cardiac ICU for 130 days and had 3 heart surgeries thus far. Ava is our lucky bean!



it begins with going to find out the sex of the baby. Then with a phone call the world changed. i had to go back to a high risk dr, because they needed better pictures of Ava's heart. I went and there i sat being told she may be still birth or may not make it.She may also have downs syndrome. We did an amniocentisis and found out she was clear of Down's but we were transferred to Childrens for the rest of our  care and had to see a cardiologist. We went and were told Ava had a severe case of Ebstein's Anomaly not knowing what else was wrong with her heart.Ava at 4 days old received her first surgery where they placed 2 shunts in her heart. Then at 10 days old they went back in and removed one shunt and opened the pulmonary valve and put a patch over it for better blood/oxygen flow. She was on Ecmo(life support) for 10 days, was resuscitated 3 times and continues to fight!

Latest Journal Update

Summer Fun!

Just a little update on Ava- she is doing well. Her oxygen sats have been around 87-90 when sitting still and she is continuing to eat like a champ. We are still trying to push fluid intake with her. Some days she drinks well but most days lately she doesn't. She still is having night terrors but they are getting better. Not as frequent and not as long. We had one bad night last week where it took us over 3 hours to calm her down and get back to sleep but since then it's been pretty quiet ( knock on wood). She has resumed all of her therapies she receives.
( physical, occupational, and speech therapy) I was hoping it would all go smoothly with her therapists and so far it has! No stranger danger to them :) I think she leaves that all for the nurses and doctors at Childrens!

This past Saturday was her first big outing since surgery. We have taken her to the park a few times since surgery but nothing like what we did Saturday. This past Saturday the World of Outlaws racing series was at the dirt track here in Beaver Dam ( 4 miles from our home) So we took her and her 4 month old brother Deklan and they had the time of their lives! The joy and excitement they both had melted my heart! I have attached a few pictures from that. I have also attached a flyer for a poker run that is going to be going on for her on August 29th. Our dear friends Vinny and KC that own the Curve In did this last year and because of how fun and the huge success it was they decided to do it again! We cannot wait for this day!

Our next appointment is next week Thursday the 9th. So I will update more then. Until then we wish you a very Happy 4th of July and a safe one at that. Enjoy your week/ weekend everyone!