Ava’s Story

Site created on January 5, 2021

Welcome to our CaringBridge website for our daughter Ava. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Dan and I both understand it takes a village to raise a child, and we truely appreciate you taking this journey with us and Ava on her Heart Adventure.  We could not be the parents we are without the love and support from all of you. Thank you for visiting.



Newest Update

Journal entry by Ashley Kern

Worry is a waste if time.  It doesn't change anything.  It messes with your mind and steals your happiness.  Its better to stay focused on now that the blessing you have in front of you.

This journey has been a roller coaster of emotions, and despite putting a smile on my face and acting like we are good and everything is good, it would be a lie if I told you I didn't lay awake at night and play scenerios over in my head about the "what ifs" or what could happen.  Part of that is being a nurse and taking care of the worse of the worse and the other part is being a Mother and wanting with my whole heart to make things different.

Ava's first cardiologist appointment after her surgery was a smack in the face for Dan and I.  I went by myself and was told that her residue hole was much bigger than the impression we got in the hospital and she would likely need another surgery in the future.  As much as I tried to not play the worse case scenerios out in my head...I did.  I have been worried sick the last few weeks and at times would cry myself to sleep.  After a few days it hit me that my beautiful daughter was happy and growing, and that I should focus on what  I had in front of me.  

Well....this week was a big week for Miss Ava.  She had another cardiologist follow up on Tues. morning.  They did another ultrasound of her heart and she did so well.  She just laid there and smiled at the tech and watch the TV in the room and she even watched her ultrasound for a little bit.  I was mentally prepared for him to tell me the hole was still there and bring her back in another 6-8 weeks for another ultrasound.  Well our Mid-Western Cardiology came skipping in the room to see.  He said that he was confident that her residue had closed up because he could not measure a gradient and he was soooo happy.  I know I looked at him in disbelief.   I immediately went into nurse mode and started asking about her ejection fraction and regurgitation of her valves.  I asked about future procedures and surgeries.  He finally looked at me and said Ashley, Ava has a perfectly normal heart now...she has a little regurgitation on her aortic and mitral valve but should out grow it.  I literally started to cry.  I know he thinks I am crazy but its okay.  This is the best news we have gotten a long time and we are so thankful.  She was cleared from her sternal precautions and he did not want to see her again until October.

Well we are a pro-vaccine house... So Wednesday afternoon I took Ava to see her pediatrician and get her 4 month vaccines.  She is meeting all of her milestone, is developing normally and she even weight 13lbs and 7 oz.  That puts her further up the growth chart to almost the 15th percentile.  He said we could stop fortifing her formula and just start feeding her like the container says.  He was also impressed that she has now ate sweet potatoes, carrots and green beans.  We are moving on to a fruit next.  She got all her vaccines (which she was not happy about) and we went on about our day....care free.

Ava is rolling over from her back to her stomach with not problems.  She can get from her stomach to her back but she has not mastered that yet.  She plays with her toys and reaches for things we have like our phones, the remote, peoples watches and even our fork at the dinner table.  We are to the point where if we dont want her to have something we have to keep it out of her reach.  She reaches for Pig Dog and Noosh (Gertrude and Greta) and she will reach for our cats as well.  I have a feeling in the next few weeks she may be crawling and we will be in BIG trouble.  She doesn't sit still if she is awake and she is constantly making noises.  She will squill to get our attention and she babbles all the time.  She is sleeping through the night for the most part and is the most happy and content baby.

 

We are so blessed and fortunate to have such a loving and support group of friends and family behind us.  We are even more thankful for people we have never met that continually pray for Ava and her Heart Buddies.   The hard part of our journey is over but out journey will never be over.  We will focus on awareness and support our Heart Buddies the best way we can.  Again Dan and I can not thank you all enough.  There are no words for the amount of gratitude we have for our village.

 

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