Birth Date - December 29, 2014
Diagnosis - Ventricular & Atrial
Theme: Finding Dory
To include: Dory, Hank, Marlin, Nemo, Destiny, Bailey, Crush & Mr. Ray
Due Date: 1/1/18
Grace, weighing 6lbs/5oz, I delivered by routine repeat C-section and all seemed fine. I was wheeled off to recovery and her to the nursery. When I got moved to a regular room, I was told immediately that Grace had begun throwing up red fluid and was in the NICU. She was having trouble feeding with both breast milk and formula. They put her on IV fluids for 2 days to settle her stomach.
While in the NICU they discovered a heart murmur. After tests were done on January 2, she was diagnosed with Ventricular and Atrial Septal Defects. Hearing Grace had two holes in her heart was devastating. She remained in the NICU for 7 days before she got to go home.
One week after going home she began to throw up after feeds. We tried breast mild and several different formulas. Nothing worked. By this time she was a month old she weighed 2 pounds less than when she was born. She looked like a premature baby. The doctor admitted her to run tests and on February 12th she was diagnosed with Failure to Thrive. There have been many hurdles, and on December 16, 2016 she had a G-tube placed. She has been diagnosed with Larynx Disease, and Esophagitis. She has improved with speech therapy and now can drink thickened liquids. She gets her formula thru the g-tube and juice and water by mouth with thickening powder.
Her current active problems list is as follows: Asthma, difficulty swallowing, feeding problems, constant upper respiratory infections, Esophageal inlet patch, ear tubes, VSD, ASD, aspiration into airway, esophagitis, sleep apnea, disease of larynx, acid reflux disease, muscle weakness, abnormal posture, neck stiffness, congenital abnormality of the respiratory tract, and lung failure. Grace is always sick, but she has shown me such bravery and tackles every sickness in stride.
"Grace just loves her Dory quilt. She sleeps with it every night. Thanks from the bottom of our hearts."