Ellie’s story is one of courage, love, and unwavering faith in the face of the unimaginable. When I went for my 20-week anatomy scan, everything seemed normal—until my OB couldn’t see all four chambers of Ellie’s heart. She was so wiggly, we thought maybe it was just the angle, and we decided to try again at a later scan. But when the concern persisted, we were referred to a Maternal-Fetal Medicine (MFM) specialist. Unfortunately, we couldn’t get an appointment for weeks, and during that time, Ellie decided it was time to enter the world.
At just 32 weeks, Ellie was born prematurely. I had no idea what awaited us, living in that blissful world of “it’s nothing until it’s something.” When she was born, I didn’t even get to see her, only catching a fleeting glimpse before they rushed her to the NICU, and then to the NICU at Children’s Dallas, where she would receive all of her care. It was there that we learned Ellie had hypoplastic left heart syndrome (HLHS)—a severe and life-threatening congenital heart defect. Ellie wasn’t just born with a heart condition; she also had malrotation of her intestines, which required immediate surgery when she was only a few weeks old.
At just a few weeks old, Ellie underwent surgery to reposition her intestines, enabling her to eat and be prepared for her first major heart surgery—the Norwood. Just a couple of weeks after her first surgery, Ellie underwent pulmonary banding to help her grow stronger for her Norwood. The surgery went well, and we watched our precious girl slowly start to show signs of improvement. But Ellie’s journey was far from easy. As we awaited her Norwood surgery, she faced a few setbacks, including a terrifying episode that landed her on ECMO on New Year’s Eve. Thankfully, she recovered quickly and was able to come off ECMO, but we were far from out of the woods.
In February, during Heart Month, Ellie was finally ready for her Norwood surgery. The wait felt like an eternity, even though the procedure itself only took around 2.5 hours. But when Ellie was brought back from surgery, I knew something wasn’t right. She looked pale, lifeless, as though she wasn’t even in her body. What followed were days and nights of terror. Ellie was placed on ECMO for the second time, and we were told she had severe pulmonary hypertension—the worst they had ever seen. Doctors were shocked that she was still alive with the high pressures in her lungs, and they prepared us for the worst.
But then, the miracle happened. Ellie, against all odds, came off ECMO after only a few days, when doctors had expected her to remain on it for weeks. She did amazingly well for a short time, but once again, we found ourselves in the midst of more trials. Ellie faced multiple catheterization procedures, a GJ procedure, several blood transfusions, sepsis, and even a bowel perforation surgery. After everything she had been through, Ellie needed a tracheostomy to help her breathe and grow stronger.
The decision to give Ellie a trach was not an easy one for my husband and me. It would change our lives entirely—requiring nurses in our home, constant monitoring, and the loss of the normal baby life we had envisioned for her. We prayed relentlessly, asking for guidance, and slowly, God answered. We felt a peace that surpassed understanding, and on the day we decided to proceed with the trach, something miraculous happened. As I sat with Ellie, playing with her, she said, “mama.” In that moment, I knew why God had told me “not yet,” and not “no.” He had given me those precious words before we made the decision, knowing Ellie would be unable to speak for a while after her trach. That moment, that word, gave me the peace I needed.
In the months that followed, Ellie’s heart condition continued to be closely monitored. She underwent a surgery to upsize her Sano shunt to help her heart grow stronger and prepare her for the journey home. After several minor complications, Ellie was finally discharged at 18 months old—an incredible milestone. We had hoped for a heart transplant, but after just two weeks at home, Ellie was readmitted to the hospital. A cath procedure revealed that her pulmonary hypertension was not treatable and that she was no longer a candidate for transplant. The doctors told us there were no further treatment options for Ellie. We were devastated. We were told she would die from her pulmonary hypertension, but how much longer we had with her was unknown.
The pain of hearing that news is indescribable. But through all of this, Ellie has taught us the true meaning of strength, happiness, and resilience. Despite everything she’s endured, Ellie is a constant source of joy. She never cries, always ready to face whatever comes next with a smile on her face. Ellie’s spirit is a testimony to true warrior strength, and she has touched the hearts of everyone around her.
We don’t know how much longer we have with our sweet girl, but we are beyond grateful for every single moment we get to spend with her. Ellie is our little warrior baby, and we wouldn’t trade the pain and the hardships we’ve been through for anything. She has taught us so much about faith, love, and trusting in God’s plan, no matter how difficult it may be.
Ellie has shown us that even in the darkest moments, there is light. She is a reminder that true strength doesn’t come from physical strength alone, but from the strength of the heart. She has inspired countless people with her determination to keep fighting, and we are so incredibly blessed to be her parents. Ellie’s legacy is one of love, faith, and resilience, and we will continue to raise awareness for congenital heart defects, honoring the life of our beautiful little girl.
We are thankful for the time we have with her and will cherish every single second. Ellie is the definition of a warrior, and no matter what happens next, she will always be our greatest blessing.
