Sample Image

Our Story

Hi my name is Nevaeh! I am now 10 months old. I was diagnosed with dialated cardiomyopathy on March 20, 2018 at the age of 5 months old. No one knew I had it until I started to have labored breathing so my mommy took me to a pediatricians appointment to find out what was wrong. The pediatrician did not understand why I was breathing so fast. So my mommy took me to the ER, and that is when we found out that I had a big heart. I am normally a very playful and happy baby. My mommy and daddy love me so very much! I was blessed with the opportunity to be on the heart transplant list to receive a heart from a wonderful family who would donate it to me. On the night of May 8, 2018, we got the news that I would have a transplant and receive a heart. May 9th I went into surgery! My family has been so happy to be with me all the time, and are trying to keep a blog going so everyone who wants to read my story can learn more about me!

The Children's Organ Transplant Association (COTA) helps chi...

Updates

 

44 Days

Continue Reading »

Milestones

Continue Reading »

Welcome Home

Continue Reading »

Trust Issues

We have been interviewing home health companies, and have decided on one. It will be so nice to have a nurse that is trained in taking care of children with trach's, and other special medical needs. What makes us nervous is being able to trust a Continue Reading »

All questions

We have had a few people ask our family, “if Nevaeh received her heart transplant why are we still doing a fundraiser?”. I love it when people are interested in what we do for COTA in honor of our sweet baby girl. But there is something about Continue Reading »

Late Night Thoughts

Being able to have all the amazing and supportive people around us has been so amazing! Just being able to do these events in honor of Nevaeh really shows me how amazing life is. I have always thought to myself "even if something goes wrong today Continue Reading »

So Close

Continue Reading »

Family Prayers

The past week has for sure been a lot of changes. Knowing that it could be weeks before Nevaeh is able to go home is amazing. Of course I am excited, nervous, and overjoyed at the same time of the thought of having her back home. I have been making Continue Reading »

Coming Together

I have never thought that this journey for Nevaeh has been easy by any means. She has gone through so much for someone in the beginning of her life thinking she was so healthy. As this past week has gone on it has come more in perspective of what is Continue Reading »

6 weeks

 Seeing Nevaeh’s face after her trach was such an amazing thing. I feel like she has grown a lot in the past 6 weeks. The tape that was holding the breathing tube in her mouth was covering her mouth and her cheeks, it had been awhile sense we had Continue Reading »

Silence

On June 14,2018 Nevaeh had to get a tracheostomy, she was not able to come off of the ventalator/ breathing tube. She had two failed extubations (removing the breathing tube) before we all came to this conclusion. We also gathered some data to make Continue Reading »

Emotional Roller Coaster

If you are reading this blog your prayers are always welcome with our family. We knew from the beginning when we found out that about Nevaeh’s condition that this wasn’t going to be easy by any means. We want things to get easier for her as any Continue Reading »

Under Pressure

Nevaeh is now 3 weeks and 2 days post transplant! Everyday we thank God for each day that he gives us with Nevaeh! Everyday is an uphill battle for our sweet girl. Her x rays are looking better today, but lately her lungs have looked foggy because Continue Reading »

Home Away

Seeing Nevaeh stay inside the hospital for minutes, hours, days, and now months at a time is hard to see. We have always been the type of family that loves the outdoors, both of our girls would spend everyday outside, even when the weather wasn’t Continue Reading »

Just Breathe

seeing Nevaeh on ECMO for 2 days was so scary. Her team kept telling us “hopefully” her heart function would return. Being hopeful in this  circumstances huge for us! A chance for our baby to have a new chance at life! Every minute that went by Continue Reading »

Gift of Life

After being listed for a heart transplant on March 26,2018, we received a call the night of May 8,2018 that Nevaeh had a donor that was compatible with her blood type. What a blessing it was to hear such amazing news!!! We were crying for joy and of Continue Reading »

The Wait

Everyday is a different, some days are better than others. We look at the bright side as a family! Nevaeh is waiting for a donor, and that is a hard mind set to put ourselves in. Knowing that she can’t live with her own heart hurts so much. Seeing Continue Reading »