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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

6 week follow up

Today we ventured to Children's for Ava's 6 wks post op visit. Happy to say that she gained a little weight back and all labs and x-ray looks good! She is able to stop her diuretics medication completely and we can get rid of the low fat diet she was on! Some of the low-fat things we will keep as Ava seemed to really love them but she will be so happy to have mac & cheese or pizza again. She was also cleared to go swimming, start climbing and we can now lift her under her arms again- thank goodness. You never know how hard it is to pick up a child when you can't use their armpits. Her oxygen saturation number was as high as 97 today. I couldn't believe it. My little girl finally has saturations of a healthy, normal hearted kid. She may never have a normal heart, or a completely fixed heart but she has a mended, functioning heart that leaves her pink in color and warm to the touch for the 1st time in 2 and a half years! We do not need to go back for 3 months but I will update milestones and how she does on our camping trip in August :) Thank you for all your continuous support. We greatly appreciate it.
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Comments

2 Comments

Lisa Meyer
By Lisa mother to william former 26 wk preemie now 11.
Awesome news for you and your family. Enjoy your camping trip and the rest of the summer and keep us posted
Camisha Miller
By Camisha Miller
Way to go beanie! We love you!