Help Support Baby Elayna's Medical Journey

We would like to share some glimpses of a journey that has been filled with joy and agony, patience and frustration, wins and setbacks… let us introduce you to two beautiful girls in our life, our daughter Gracie and our brand new granddaughter, Elayna!

At 7 weeks old, Elayna has had, and will continue to have, a lot of challenges. We would like to respect them both by not sharing all the details of their journey so far, but enough information to understand their challenges.

While Gracie was still pregnant, it was discovered that Elayna would be born with heart defects, which would require heart surgery… two of them. After a few short days of her birth, Elayna underwent an invasive heart surgery to repair one of the defects. The next surgery, which is still yet to happen, will be far more invasive, requiring open-heart surgery at a later date. The first surgery seemingly went well, but after observances and additional testing, it was discovered the surgery partially failed, requiring a second surgery to fix. Done. It was successful. During one of the surgeries, one of Elayna’s vocal cords was nicked and paralyzed. We learned that this would create potential issues with her ability to eat, to which it did. Her nutrients have been and continue to be given to her through an NG tube, with small victories in between feedings of a specialized formula.

As this is being written, Elayna has been nearly inconsolable due to another discovery, hydrocephalus… she has spinal fluid continuing to build in her brain cavity/ventricles because it is unable to drain properly due to a cyst at the base of her brain that will be removed through a neurosurgical procedure. We are praying this goes well and is successful. If not, she will have to undergo an additional, more invasive brain surgery.

In the meantime, Gracie has been Elayna’s everything, quite the mother, advocate, nurturer, and soother. This is her first child and her momma instincts kicked in immediately!!! She has been a warrior leading Elayna through these battles like no other.

As you might imagine, this has taken a tremendous toll on Gracie’s finances and her ability to earn. Her home is in Granby, MO, while the team taking care of her medical requirements is at a children’s hospital nearly 3 hours away in Kansas City, MO. This has been their home since mid-August.

Kayden, Elayna’s father, is a constant and continuing source of encouragement for both, Gracie and Elayna. With unexpected challenges that have emerged in Elayna’s journey, it is necessary that he continue working to provide for the bills back at home. When he isn’t working at his job or on the house they will call home, he is by their side.

As her parents, we realize that the burdens that arise in situations like this can be plentiful and we can meet some of those needs. For instance, one of us has remained at Gracie and Elayna’s side for the duration to bring support, encouragement, and to assist with Elayna’s care when Gracie requires a break due to utter exhaustion. But we also realize that this journey has opportunities for others to share, as they seem fit to take on some of the burden, as well. That is why we created this GoFundMe. Anything that you can provide will help provide necessities such as food, gas (for travel), bills that are coming due, and other items required for Elayna’s unique and specialized care. All donations are appreciated.

Thank you,

Steven & Amanda