Addison was immediately transferred to Cincinnati Children's Hospital. The cardiologists decided she needed to be 11-13lbs to do the artery switch. After insurance initially denied our request to transfer back to Atlanta because she wasn't deemed as critical, the ICU transferred her to the step down unit, to allow her to grow. Less than a week later our doctors wrote a letter requesting our transfer and insurance approved Addison to fly home to CHOA-Egleston Sibley Heart Center’s step down unit on June 19th so we could finally be at home!
After some oxygen-related issues, she was transferred back to the ICU and ended up having an emergency pacemaker surgery a couple of weeks later. We got to experience some happy life moments with her. Although she wasn't growing fast enough, she was growing more than we had envisioned.
In October, Addison ended up going on the ventilator and then on ECMO which forced doctors to do her heart surgery sooner than anticipated. They had to go back to the drawing board in regards to her artery surgery because her anatomy changed. Doctors decided on a new procedure that had rarely been done called Hemi-Mustard/Glenn surgery. Dr. Chai came through with a successful surgery. However, recovery was difficult as Addison’s poor little body was worn out.
In November, her lungs were failing and she had to be put on an oscillator and started facing the inevitable. We got to sleep and cuddle with her one last time. She died in our arms peacefully and no longer in pain on November 17, 2020. We did everything we could to advocate for her and the doctors and nurses did everything they could to save her life. She fought so hard until the end.
The dress the hospital gave Addison for her end of life was a beautiful burial gown provided by Rachel's Gift. We will forever be grateful to this organization as well as Cincinnati Children's and Children's Healthcare and Atlanta-Egleston for helping our daughter live as long as she did.
There was, and still is, an immense and intense love for her. We were there every day at the hospital for 8 months and were lucky we had that much time with her. Below is a video of 1 second of each day we had with her.
We realize everyone's story on here isn't ideal nor is it the outcome any of us wanted, but life forces us to move on. We can still feel her with us and know we will always have a void in our heart without her here with us. However, we try to focus on personal growth, healing, and becoming better people because of the influence Addison had on our lives.
Janel and Kevin Heitkamp
Connecting the Rachel's Gift Community
FOR GRIEVING PARENTS
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