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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

Testing.. Testing..

Boy time does get away from me! I have some updates on Ava-- Let's start with her right leg. This leg has kept us guessing since we were released from the hospital when she was 4 and half months old. We do stretches, increased physical therapy, do strengthening techniques and nothing is helping. 2 wks ago Ava began limping so we went to see her Pediatrician just to be safe something else has not happened. It seemed she had an extremely tight calf muscle which called for more stretching, massaging, L'BRI Super Aloe ( kinda like icy hot) and monitoring. It seemed to get better off and on over the weekend. We stretch her every day and the limping and tightness is seeming to continue. I talked with her cardiologist and they referred us to the Rehab clinic in Children's to see what they think. Today we ventured down there for an evaluation and found her right arm is also somewhat tighter then normal as well. They got the ball rolling to get us into an orthotics clinic to get a brace made for Ava's leg and we discussed getting an MRI of Ava's brain probably after the first of the year closer to the end of winter beginning of spring. The MRI will help tell us if the brain bleed Ava had while she was on ECMO after her very first open heart surgery at 4 days old was more of a stroke like brain bleed leaving misfiring signals to the right side or if it was just in fact a small brain bleed that often comes from being on ECMO. This will also help tell us if she is more likely to get seizures from having these stroke like symptoms or if that is something we need to worry about at all. It should also help tell us if her tightness and weakness in her right side will be a long term issue or short term issue that can just be corrected with more physical therapy and a brace. So for now we will head to a clinic in the beginning of December to get the mold made for her brace. 

Now onto the other update- a Few weeks back Ava went to Developmental Clinic at Childrens and was tested with speech, occupational and physical therapy. She did not test out as well as we thought she would but given that its a long test, during her nap time, and we intially went down thinking they were only addressing her leg issue we were a little blind sided and frustrated with the results. So Ava had developmental testing on Friday and today through the school district for placement for 3k. If she needs extra help and is a little delayed she can get extra assistance through the school and start 3k after her birthday this year in January. She would then finish this school year out and then repeat all of the school year in 3k next year. Well today the lady that tested her said she does not know that Ava will qualify for that because she is doing so well! So far her scores are much much higher than when she did developmental clinic at childrens. Both ladies cannot believe how well she is doing and how smart she is for not even being 3 and having a really rough start to life. We still have one more testing to do and then we will meet with all of them to see how she tested out and what our next step and plan is and that will take place the week of December 14th. I will update more then when we know more.

We hope everyone has a safe and Happy Thanksgiving this week. We are always thankful in this house but Thanksgiving is just one more day to indulge in amazing food, see lots of family, and be incredibly thankful for all we have. Its a day i tend to kiss and hold Ava ( and Deklan) alittle tighter and Thank God we have been blessed with her for another day. This year our family will be having a low key day as Eric will be having his left hip replaced tomorrow. Extra prayers for a smooth surgery and recovery are appreciated. Thank you for all your support as always and HAPPY THANKSGIVING!