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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

Its Congenital Heart Defect Awareness week!

Hi Everyone!
Just wanted to give a little update on Ava since it is CHD Awareness Week! She started school on her birthday back on January 4th and goes 2 days a week for 3 hours a day. She is absolutely LOVING school. Her teacher said she is doing really well adjusting to the routine and just loves loves loves music time! She did get sick about 2 wks ago. We had a few rough nights and a little scare with her breathing quick, shallow and her oxygen sats were at 89 (usually sits at 92-94) So we took a trip to the pediatrician right away the next morning and she got put on an antibiotic for treatment of early pneumonia. Shes been doing well, we are almost done with her antibiotics and breathing treatments and her oxygen sats have been back up at 92. Today they celebrated Valentine's day at school and to see how everyone was excited to see her walk in just melted my heart. I cannot believe we have a 3 year old. I am so beyond happy she has lived this long and continues to grow and develop and make great strides in everything she does. Tomorrow her baby brother Deklan turns 1 year old and this last year has been quite a hard one i do have to say! Going from having one child who needs extra help and care to having her and an infant, then myself got mastitis and was admitted into the hospital when Deklan was 2 wks old for 2 days, to Ava having her open heart surgery, to Eric having his hip replaced, I sure hope this year goes much better with no surprises unless they are good surprises! Ava absolutely loves having Deklan around and I am so glad that little bundle of cuteness came into our lives when he did. Those 2 are inseparable. Back to Ava though. She has a busy couple months ahead. She is going for an MRI in march of her brain to see if she did suffer from a stroke or has had mini seizures and that is why her right side continues to stay tight instead of progressing. Then she goes back to cardiology in April for an ECHO and follow up. Here they will check to make sure she is not going into heart failure as we had a little scare after her birthday that she had a few symptoms and lower liver but checked out ok. So hopefully we can get a good report to start our summer fun

Before i leave you i want to leave you with it being CHD awareness week please remember to take the time and educate yourself. Especially if you are expecting or know someone that is expecting. 1 in 100 babies are born with a heart defect. its the #1 killer in infants and the most underfunded for reasearch. They all cannot be detected by ultrasound before birth so make sure to have a pulse ox placed on your baby to check their blood oxygen levels. it takes less than 1 minute and its harmless. its a little red dot they stick on their finger. 

I will update more after all of Ava's upcoming spring appointments unless something else pops up! Happy Heart week everyone!