Emilee was born with a CCHD
(complex congenital heart disease) on September 27, 2012. She had her first 5 OHS
(open heart surgeries) within 12 days
of life. Then she finally came home after a month
At 6 months old
Emilee went in for her 6th OHS
. This was her first stage surgery for her two stage of surgeries. For her second stage surgery she was going to need it at 2 years old.
Unfortunately that changed on January 27, 2014.
She had a procedure called a cardiac cath. The results showed her right ventricle was full of muscle
. This muscle is reducing blood flow and her heart. To get her second stage surgery this muscle needs
to be removed
. Since her heart function has decreased
they said she needed her second stage surgery before 18 months old
. Without the second stage surgery before then it will be too late
to get the surgery for her.
To remove the muscle in her heart they have to do a OHS
. They also have to do the second stage surgery so they decided to do the surgeries together as 1. This hasn't been done before
so they are going to play it as they go. The surgery was scheduled for March 10, 2014.
When she was in surgery Dr. Jonas
knew she wouldn't make it
if he did both so he stopped before doing the fontan and only did the gradient removal.
Months later after recovering from her last surgery they proceeded with the Fontan
! Emilee blew right through that like a champ
! A month later her cardiologist gave her the all clear for a year.... 1 year!
She's never gone a year without care! It was an amazing feeling and an unknown feeling but as a family we would get through it.
In November 2016
Emilee got sick with a 12 hour bug. No big deal right? Well I knew something wasn't right with her so after many trips to the pediatrician, a trip to the ER
and a haulter monitor it was figured out that Emilees heart had gotten really weak from her getting sick. Her heart rate was really low all day and at night it dropped dangerously low
. That resulted in Emilee needing a pacemaker.
Emilees pacemaker surgery was scheduled for March 8, 2016.
On Monday February 1, 2016 Emilee woke up blue from head to toe. Her O2 levels were in the 40s so I rushed her to the ER. From there she was sent to her hospital in DC where they monitored her and found her HR is even lower than before and at night she drops into the 20s. On top of that her Heart actually skips random beats and goes into random arrhythmias. After labs and tests it shows her gradient is also growing back which is a whole other issue. The conclusion is that Emilee will be getting her pacemaker very soon (within days) and possible another gradient removal surgery. Until then we are an inpatient and she continues to be monitored.
Emilee got an emergency pacemaker February 5th, 2012. This is will be Emilees 9th Heart Surgery. She's been doing great since then. Fall 2017 was a rough time for Emilee she got sick with everything that was going around but she pulled through like a champ!
May 7th Emilee had a routine heart Cath and the results were not great. It showed her gradient was back and worse than before so she's been scheduled for another Open Heart Surgery for June 18th. This will be Surgery #10 to try to help her live a fuller, longer life.
Emilee is treated at Children's National Medical Center in Washington, DC.
Any donations that is given will go to Emilees medical funds or to help us stay together as a Family
with Emilee while she's in the hospital!
I want to thank you all for spending the time to read this and visit her fund me page!
To follow Emilees heart journey you can at