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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

A night to remember and lots to catch up on!

Yesterday Ava and her brother Deklan got to go to their first Milwaukee Brewers baseball game. Thank you to my friend Joe he passed along Ava's story to Bret Eulberg- the owner of Robert Haack Diamonds, we were able to have the night of our life! We arrived and went on a mini tour and then got to watch batting practice. Ava then got to meet Jonathon Lucroy and play catch with him. While we were talking to Lucroy- Ryan Braun came over and said Hi, gave me a hug, remembered visiting Ava in the hospital and asked how she was doing. He took a picture with her and got ready to play ball! We got to have dinner on them and our tickets were labeled as For Lucroy's Guests! Before we left we got to go in the TV broadcast booth and watch the game and get pictures with them as well. It was a night Eric and I will never forget. We are so beyond humbled and thankful for all the kindness everyone has given us.

A few weeks ago we had our poker run for Ava. Although the weather was not the best, many still came out to support her and us. It was amazing and beautiful. Every day I get to look at her and thank God for bringing her to our lives. Every day I get to look at her and say "I love you, you are so special" The joy her smile brings to a room, melts my heart. I hated our journey we have had to take but at the same time I have appreciated, and almost liked it. I hate she has suffered so much but all the wonderful heart families, or just people in general we have met makes me believe there are still a ton of wonderful people in the world. Thank you to KC and Vinny for all their hard work for the poker run and we look forward to next year.

Before the poker run we went camping in Iowa for our yearly trip to Knoxville. Last year Ava was always cold to the touch no matter how hot it was. This year we brought extra clothes, blankets, everything we thought she may need in case she got cold but it was just the opposite. For the first time, we witnessed Ava sweat. She actually got warm. She didn't need extra blankets, she didn't need to be snuggled in the middle of the night to get warm. She was actually warm when she woke up! It was an amazing difference. She had so much fun in Iowa this year. We went to the Zoo, and brought her water table, went to the races and just relaxed. It was nice to see her smile and the color of it so pink.

Now onto the last of our news- Monday September 29th Ava will be evaluated and assessed for 3K! The district wants to see where she is at and see what school is the best fit for her. Some 3k programs are for those with worse delays or disabilities. Right now Ava is delayed a little in speech and also physically but educationally she is very smart. She knows her colors, her letters ( upper case and lower case), shapes, and numbers. I will update more once we know more! I cannot believe that she will be 3 in 3 months. Not sure I am ready to send her to school yet but it's great to know we are getting the ball rolling and she is ALIVE to live it!

Sorry for the lengthy update! We just have been so busy I haven't had time this summer :) here's a recap of pictures from last night!
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1 Comentario

Sara Rosenthal
By Sara Rosenthal
She is an amazing little girl! Loved seeing her so spunky at Knoxville 💗💗💗
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