Love With OWL Your Heart

We welcome Payton’s mom as a guest blogger today to share her story.

Payton was born on December 5, 2013. She was our first child and she definitely came with a big surprise in many ways. About two days after she was born we got the diagnosis of Trisomy 18. We thought we were having a completely healthy baby girl. We were told a lot of things about what to expect; one being that she would likely not live to her first birthday.

I soon found that the majority of things we were told to expect wasn’t true. Payton is such a happy and personable little girl. It is rare for her not to be happy and have a smile on her face. One of her favorite things is to be tickled by mom or dad.

The first 3 months were the most difficult. Payton had difficulty feeding so she has to have an OG for feeding. It was very difficult to keep this in her mouth with so much drool, and, her doctors didn’t want an NG (nasal gastric tube) because her nose was so small and she was also using oxygen.

When Payton was 6 weeks old she had surgery to have a g-tube placed. It was a great decision and made everyone’s quality of life so much better. Payton then started having problems with her oxygen saturation levels. She got to the point that the oxygen wasn’t helping her anymore. She was placed in the ICU. At that time we discovered her Co2 levels were in the 80’s and it was because of obstructive apnea. She needed a tracheotomy.

At 3 months old we decided to do it and again it was a great decision. After she got her trach she could breath. She was more active, alert and so much happier. When Payton was born it was determined that she had a hole in her heart. That hole is now almost completely closed.

Payton also has global developmental delays in which she sees physical, occupational, and hearing therapies on a weekly basis. She is followed by cardiology, pulmonology, ENT, orthopedics, genetics, ophthalmology, audiology, GI, nutrition, and surgery. Payton’s health is doing fairly well, we have been so incredibly blessed.

Payton’s cake was created by Sugar Angel Carrie Smola in High Springs, Florida. Payton’s mom expressed receiving her cake from Icing Smiles exceeded her expectations and she was very satisfied!

To read more of Payton’s story, follow her page on Facebook.