Butterfly Kisses and Birthday Wishes

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

Harper was born on November 16, 2011 weighing 6lbs, 7oz at 1:01 pm. The NICU team was standing by because my doctor had seen what is called “echogenic bowel” on a previous ultrasound. After they looked her over and she appeared to be fine, they handed her over to me to nurse. Shortly after her first feed, she had a vomiting episode. That one episode turned into a lot of episodes throughout the night, along with swelling of her abdomen.

The next morning she was life flighted to Children’s Memorial Herman for emergency surgery. She had a condition called “Meconium Ileus” which required surgery to clear. After surgery, the lead surgeon came out to tell us everything went well, but there was a very high possibility that she had “Cystic Fibrosis” or “CF” for short. CF is a genetic disease that cause thicky, sticky mucus to build up in the lungs & pancreas. The average life expectancy at the time for someone with CF was 38. This was later confirmed by a sweat test along with genetic testing. We were devastated, but so thankful that her life had been saved!

One month later, with our heads spinning with the knowledge & tools we would need to care for our daughter, her daddy and I were able to bring her home to her older brothers who were waiting anxiously to see their sister.

Every day, Harper takes up to 20 pills just to digest her food. She also does 2 nebulizer treatments & her vest for 20 minutes to help shake the mucus loose in her lungs so she can cough it up twice a day when well & every 4 hourse when sick with respiratory symptoms. She does multiple rounds of oral antibiotics a year, along with IV antibiotics when things get bad because her mucus is so thick, even the slightest cold can send her to the hospital.

Harper’s cake was provided by Sugar Angel Stacy Rogers in Spring, Texas. The family shared, “We are truly blessed that Harper does so well with everything she’s had thrown at her in her short life thus far. We love her so very much and we are honored to be her parents! Thank you Icing Smiles and Stacy with For The Love of Cake for putting a smile on our angels face for her 4th birthday. The cake very much exceeded our expectations!”

To see more for Stacy’s wonderful creations ‘Like’ her on Facebook!