Elodie and Ashton’s Story

Site created on August 21, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Taylor Johnson

I apologize for the late update. Life has been crazy and lots have changed. 

 

On October 16th Elodie underwent her heart surgery to close her PDA. This surgery was completed with a Piccolo device. This device is a little coil that is places in the vessel to clot it off. Over time the vessel will shrivel and close fully. The device will stay in place and scar tissue will develope around it. Elodie will have this device in her heart for her whole life. With saying this, she handled surgery well! She was able to be extubated after surgery before she even made it back from recovery! Doctors prepared us that she may have had to be intubation for some time after surgery as it can be difficult with her new heart load. However, our little rockstar did amazing! Follow the first few days after surgery Elodies heart was working hard. With closing that vessel it causes the heart to have an "overflow" of blood that the heart has to move. Her heart function was down, as well as developed fluid around her heart. However, as a few days passed her heart function improved and actually went back to its intended size! On October 19th Elodie was able to be transfered back to her "home" hospital. We were beyond thankful for this as she will be closer to home and with all of the NICU staff that knows and loves her best! For the first few years of Elodies life she will have frequent echos to ensure that the device is still in place and functioning as expected.  

 

While in the cities it was noticed that Elodie has a very high pallette in her mouth and a "gap" in her gums. She was visited by an ear, nose, and throat (ENT) specialist to determine if this was a cleft pallette or caused by intubation. It was determined that since Elodie was on intubation for the first month of her life, the tube caused her forming mouth to become deformed. At this point when she starts eating from a bottle we will have to explore specialized bottles to ensure she can create a proper seal. We will be following up with ENT after discharge to determine if repair will be needed. 

 

Due to Elodie being so premature with her birth and on long term oxygen treatment she had the potential to develop eye complications. She has been having weekly eye exams since 30 weeks old. She had slight retinopathy but nothing that required treatment. Last week at her eye exam the doctor noticed that she developed stage 3 retinopathy of prematurity. This required immediate treatment that consists of injections directly into the eyeball. Elodie was sedated and had this completed. If treatment was not completed Elodie had the potential to be blind. This week was her follow up eye exam and the doctor was very pleased with how her eyes are looking post treatment. This is something that will continued to be followed to ensure that she does not need another treatment around 8-10 weeks after the first. There are still the risk that Elodie can have vision complications however they are much slimmer with the treatment. The doctor stated that since he started doing these injections he has not had one infant have blindness occur after treatment. This gives us great hope moving forward! 

 

Elodies respiratory status has been stable since her surgery but has not had many improvements with her pressures needed from her vent. Due to her getting bigger she has been fussy with having so much going on to her face. The NICU staff decided to try her on a RAM system instead of the mask. This is a typical nasal cannula that still delivers similar pressure to support her respiratory system. There is a chance that over the next few days she will not be able to handle the change and may have to be switched back to the mask. However, this gives her face a break and we are able to see her beautiful face and head without so much equipment. 

 

Elodie has been slowly increasing her feedings. She still is being fed through an OG tube (a tube into her mouth that delivers the milk directly into her stomach). Elodie tells every nurse that she hates these tubes in her mouth ad she has become an expert in pulling them out. She is becoming such a little stinker! However, Elodies growth is slow and she is still far behind, but she is officially 3 pounds 14 ounces! She is becoming a chunky monkey! 

 

With all of this being said, we are beyond proud of how hard Elodie is fighting and progress is slow but we can stay patient knowing that one day she will come home. Mom, dad, and Ashton are beyond obsessed with little miss Elodie! She is starting to develop such a big personality and everyone that meets her has fallen in love with her just as much as we are. We couldn't be more blessed that her NICU staff takes such amazing care of our little girl! 

 

Through all of this we know Elodie has strength and protection through her brother and we will always thank him for helping her continue her fight. He is the best angel baby and we constantly tell him how proud we are of him for keeping his sister safe. All of this information above is scary but we know things will be ok because Ashton would never let anything happen to his big sister. 💙🩷

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