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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 7 1/2 mos 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

appointments, fundraiser, and so much more

Last week Ava had a GI appointment. She weighed in at 20 lbs 7.5 oz's and is 29 3/4" long! They are happy with her growth but because she is over a year now we just switched her from formula to pediasure for her g-tube feedings. We also went down from 4 feeds a day to 3 feeds a day in hopes she will feel more hungry and want to eat orally more. She was taking about 2 tablespoons of rice cereal or a half of jar of baby food twice a day and then we tried to push her to take more, and more often and we took a step back. So we are working on her eating better orally (through her mouth) again. 

She was just at her cardiology appointment yesterday. Everything sounded good, they as well were happy with her growth and how she looked. We have to go back in 4 months for a sedated echo and make sure her arteries are growing along with her. She also may need to go back to the catheterization in about 7 months before she has her next heart surgeries. 

So far so good with her staying healthy (knock on wood)

February 18th we go back to Children's for a developmental clinic to see how Ava is developing and what we need to work on more. So far she is still not walking, talking or crawling but she has started to sit up and she knows how to sign a few words and babbles like crazy!

Dont forget that February 8th is Ava's Fundraiser at King Pin Bowl in West Bend! We will have bowling available, TONS of raffle items, and baked sale goodies! We also have t-shirts and stickers for sale. The fundraiser is from 11am-4pm so make sure to stop out! If you have pop tops from cans of soda, beer, energy drinks make sure to bring them along as we are collecting them for the Ronald McDonald House!

We hope everyone is staying warm in this bitter cold winter we are having and we look forward to seeing you one week from tomorrow!