Stories of hope

Avrie Nelms, heart transplant recipient, will be featured on the cover of a new print piece to be released on our blog next week. As we prepare for this launch, we have included her story with recent updates for you to enjoy.

Our second daughter, Avrie, was born completely healthy with no complications. She developed normally without any noteworthy illnesses during her first year.

A couple weeks after her first birthday, Avrie spiked a low grade fever, which we dismissed to teething issues. When the fever began to rise and vomiting began, we knew it was more than teething, most likely a stomach virus.

Avrie Nelms

Four days after her initial fever, Avrie continued to be unable to hold food down and her breathing and heart rate were high, which her father and I knew, due to our medical background, could be from dehydration. So, I took her in to the pediatrician.

Upon examination, the doctor decided that this illness was most likely more serious than the flu, possibly pneumonia or a urinary tract infection, and sent us for x-rays at Columbus Children’s Close to Home.

After the x-rays, as we sat in the waiting room, we received a call from our pediatrician at the facility.

That was when our world came crashing down.

He told us that Avrie’s heart was enlarged and her left lung was partially collapsed due to the size of the heart. He instructed us to immediately go to Nationwide Children’s Hospital and that he would call ahead to warn them of our arrival.

All I could think was “how could this be happening to our perfect baby. OUR BABY who has had no serious illnesses and a totally normal development.”

After hours in the ER and countless examinations, we were assigned a room on the Cardiothoracic Intensive Care Unit. Until that point, I didn’t even know that Children’s had a CTICU.

That evening, we learned that our baby girl was in severe heart failure and only had about 30 percent function of her heart.

“WHAT,” we thought. “This can’t happen to us. This happens to other people, not us! We were wrong, it can happen to anyone.”

Over the next three weeks, we worked on stabilizing Avrie’s condition. She ended up with a nasal feeding tube and a CPAP oxygen mask to help her breathe. These measures took some of the work and stress off the heart to help it heal.

At the end of the three weeks, with no significant improvement but no real decline, we attempted to decrease some of the external support and meds to see if we could get to a point where she could go home. This is where our spirits plummeted! On the first day of the first tiny decrease of her main heart medication, her body decided it could not make it without all of the assistance it was getting.

We took life day by day. We learned to cherish our time with our baby a little more than most people should ever have to learn. Then about three weeks later, Avrie’s situation became even more desperate.

Her heart was not going to recover. Her little body was not going to make it out of the hospital without some more serious intervention.

That was when our new family – our team of doctors – sat down with us to discuss putting our one-year-old baby girl, Avrie Bristal Nelms, with blonde hair and beautiful blue eyes, with a big sister named Macie, from a very, very loving home, on the heart transplant list.

We decided to take some time to think and pray about it, but by the next day, right before she had to be intubated, it became apparent Avrie was not going to make it with out this life-saving surgery. She was listed the next day, to join all of the other children and adults, whose hearts had been too weak for them as well.

We took life day by day. We learned to cherish our time with our baby a little more than most people should ever have to learn. Then about three weeks later, Avrie’s situation became even more desperate.

After a dangerous spike in Avrie’s potassium, which caused her heart rate to become wildly irregular and her breathing to become too weak for survival, it was decided that she would require the use of a machine called ECMO, which works like the heart, lungs and kidneys, with the prospect of moving her to a Berlin Heart, more suited for longer term use, within the next few days.

Avrie was the first person in Columbus and only the fourth in Ohio, to ever be put on the Berlin Heart. We were told that she could stay on the Berlin up to a year as she waited for a transplant.

But, through the compassion of one family and the grace of God, we did not have to wait more than two weeks.

On September 13, 2010, we received the call at 6 a.m. in our Ronald McDonald house room, that a good match was available for Avrie, pending some test results, and that she could have her new beautiful, working, life-saving heart later that day.

Avrie and mother Melissa enjoy a precious moment together since Avrie’s heart transplant.

My emotions were in a whirlwind. I ached for the other family who was so gracious to give their child’s heart. That so easily could have been us saying goodbye to our baby.

Even though we didn’t know the donor or donor’s family, we prayed for them, holding each other and sobbing. And then, uncontrollable happiness, elation, and a promise to do our donor child proud by helping Avrie live the fullest life we could offer as her parents.

We started prayer chains for both the other family and for the success of what was to come. Later that day, I can’t explain the joy when I heard that Avrie’s new heart started pumping as soon as blood ran through it. It never questioned its job or its new home!!! I love that heart which I still get to feel beating in her chest everyday!!

It has been three and a half years since Avrie received her life saving heart transplant. In the early years, I was worried about her quality life after her transplant. Today, Avrie’s quality of life is outstanding. She is in preschool and loves to run, jump, bounce, do cartwheels, stand on her head and is quite the social butterfly. She has taken dance and gymnastics, and has enough energy, strength, endurance and attitude to keep up with kids older than her. She is living her life to the fullest. Avrie had some minor bumps in the road a year ago, it taught me that it’s my daughter’s strength that gives me strength. I feel the reason she is able to overcome so much is because she has a guardian angel who gave her his/her own heart and is watching over her.

The Nelms family travel to Disney World through a Make a Wish vacation.

We were fortunate enough to take a Make a Wish trip to Florida to visit Disney, Universal Studios and Sea World this past fall. We had an amazing time and built memories that will last forever. We plan on taking as many trips over the summer as possible as Avrie loves amusement parks, staying in hotels and just being around people.

As we prepare to watch Avrie start kindergarten next year, our family is so grateful she received the gift of life. Watching her and her big sister Macie play together is one of the highlights of our everyday – moments that would not be possible without her organ donor. I hope potential donors realize that registering today allows people like Avrie to have wonderful lives full of experiences and opportunities. We don’t know Avrie’s future, but we know it will be AMAZING thanks to her donor!