In the summer of 2019, Ella was a healthy, active, stubborn, funny 12-year-old girl enjoying her summer.  She was a volunteer camp counselor for Metro Parks, she was swimming, hanging out with her sister Olivia, and babysitting.  She loves The Office, Billy Joel, and her Dogs.

In the middle of August, Ella started to throw up for no reason.  Since she did not have a fever or any other symptoms, we thought it might have been too much dairy or cheese (as if anyone could have too much cheese!).  So we changed up her diet.

The vomiting got progressively worse to the point where she could not keep anything down.  We took Ella to her pediatrician and they gave her some anti-nausea medicine, she promptly threw that up.  Two days later, we were at Mary Bridge Children’s Hospital with a suspected bad Gallbladder.  During one of the ultrasounds, they noticed something strange with her blood flow.

I am going to pause for minute and tell you about our family.  There is a history of Cardiomyopathy (heart failure) in the family.  Ella’s Grandpa Al and Auntie Randi were both diagnosed with Cardiomyopathy.  Grandpa Al was 30 when he received his heart transplant after being diagnosed with Hypertrophic Cardiomyopathy.  Al was able to live another 27 years with his donor heart and passed away 5 years ago at the age of 57.  Randi passed away at the tender age of 5, waiting for a transplant, after being diagnosed with Dilated Cardiomyopathy. 

With the family history, Ella has received regular echocardiograms.  The most recent one was in October of 2017, her heart was perfect and she was not scheduled to be seen again until October of 2020. 

The doctors knew the family history, they listened to her heart and it sounded FINE.  The Pediatrician listened to her heart.  The ER Doctor listed to her heart.  The GI Surgeon listened to her heart.  The 3 other attending Doctors we saw at Mary Bridge listened to her heart, the countless nurses listed to her heart.  They all said the same thing; her heart sounds normal.

After 30 hours of testing and not being able to figure out what was making her vomit, Ella’s Doctor, Dr. Kelly, decided to order an echocardiogram to just check this off the list.

On Monday September 2^nd 2019, we found out that our baby girl was in severe heart failure.  Our sweet Ella was diagnosed with Dilated Cardiomyopathy.  She had been dying in front of us for weeks and we had no idea.  The vomiting was due to lack of blood flow to her internal organs.  Not only was she in heart failure, her other organs were damaged.  Her Kidney, Liver & Gallbladder had all sustained damage due to lack of blood flow and dehydration from the vomiting.

Our world was forever changed in that moment.  Life as we knew it ended.     

Ella was immediately admitted to the ICU at Mary Bridge.  We were told that Ella’s treatment would start with IV medication to strengthen her heart.  If she did not respond, Ella would be transferred up to Seattle Children’s Hospital for more aggressive treatment, including the possibility of a transplant.

When Ella was diagnosed, her heart was functioning at about 12%.  After 24 hours on the medication, her heart function improved to almost 30% and her vomiting stopped!  We were so excited… it seemed the medication was working!  They call this the “honeymoon” phase of treatment, a quick but short improvement with treatment.   Another day went by and Ella’s heart function began to slip, the vomiting returned and they also discovered that blood was flowing back through the valves in her heart, it was leaking back into her heart.

On Thursday September 5^th, what should have been the first day of school for Ella, she was transported up to Seattle Children’s for more aggressive treatment.  Seattle Children’s increased her medications and she responded!  We held our breath hoping this was not another “honeymoon”.  Ella was doing great for about a week… the vomiting stopped, heart functions bounced back, and then she spiked a fever.  We are still not sure what caused it… but she quickly declined.  They started increasing her medications even more, adding different medications, and then the vomiting returned.  At that point, we realized that Ella’s heart was never going to get better.  We made the decision to begin the transplant process.  With her severe heart failure, Ella needed a device called an LVAD to keep her alive as a bridge to the transplant.  The LVAD is similar to a heart pump, it will do the function of the left side of her heart.  The pump goes into the bottom of the left side of her heart and a cord comes out the side of her abdomen and plugs into a control system and power source kept in a cross body bag.  It’s crazy to think about your kid having to be plugged into a wall or a power source to stay alive (yes, we have a generator).

On Tuesday September 17^th, Ella had her first open heart surgery to place the LVAD into her heart.  The surgery was originally scheduled for Thursday, but she declined so quickly, they rushed her in early.  Ella was in surgery for about 6 hours and the doctors considered it a success!  She was recovering nicely… the LVAD was running the left side of her heart and the right side was keeping up with it.  Ella was able to breathe on her own, eat, and was able to stand up on her own. 

Four days later, the vomiting returned.     

On Sunday September 22^nd, Ella was rushed back into emergency surgery.  They had to break open her chest again and remove almost 1.5 liters of fluid and clots from her chest cavity.  During the surgery, we lost her for a few minutes, but they were able to relieve the pressure and bring her back to us.

Since that second open heart surgery, Ella seems to be making consistent strides and progress!  Her stubbornness is serving her well!!   She is eating, she is walking, she is starting school at the hospital, and she has the entire nursing staff wrapped around her little finger!

30 Days since Ella was listed, 48 Days since the diagnosis, we received the news!  Ella got her match.  I knew at the other end of our joy, was pain.  I knew that another mother out there was getting ready to say goodbye to her baby as I was getting Ella ready for her gift. 

We are now 6 months post transplant and Ella is doing amazing!  We have been so blessed by the generosity of others.  We are beyond thankful.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.