Aza Kilpatrick is a 4-year-old girl from Cedar Park, Texas who loves Elmo, Curious George, and Peppa Pig. Aza was born at 23 weeks and spent her first 388 days in the NICU before finally coming home. Her first few months in the NICU were filled with many ups and downs, but she was showing continual improvements in her respiratory status. After three months in the NICU, Aza developed several respiratory infections which landed us in a new hospital and back on a ventilator. The next three months were spent weaning the ventilator, CPAP, and nasal cannula. It became clear that due to Aza’s chronic lung disease she was going to need some long-term support to help her breathe.
Aza had her trach and g-tube placed when she was seven months old. The surgeries were hard on Aza, and she developed secondary pulmonary hypertension as a result. She spent an additional six months in the NICU getting her pulmonary hypertension to a manageable place and transitioning to her home ventilator.
Once home, Aza began to improve by leaps and bounds! We were able to stop all but one medication for pulmonary hypertension. She went from extremely high ventilator settings, to now being off the ventilator all day, and on humidification and one liter of oxygen at night.
Since Aza has oral aversion, she receives all her nutrients through her g-tube. We offer her food frequently, and she’s starting to become more and more interested in tasting things. Aza also has a hard time vocalizing so we have been teaching her American Sign Language. She picks up on it very quickly and uses it often. It has been a huge help in giving her an outlet for communication; Aza loves meeting new people! She has recently started making lots of new friends. She will walk up to random people and make a connection with them in seconds. She can be shy, but when she sees someone she wants to meet there’s no stopping her!
I would say that Aza’s favorite thing is being outside. She loves trees so much, she could sit outside all day and watch the leaves blow in the wind. She’s also developing a love for flowers. She carried around a yellow dandelion flower all day last week and made her Dad and I smell it frequently.
Our biggest challenge as Aza’s parents is fear. Fear of flu and RSV season, fear of unwashed hands, fear of setbacks, fear of her unknown future, fear that people will say mean things to her or judge her because of her scars or experiences. I could go on and on. While I have these fears, as I’m sure every parent does, I know that she will overcome them all and come out on the other side as an even stronger person.
Since birth, Aza has had this undeniable determination. There were times in the NICU when people around us were starting to give up hope. We had “the talk” on numerous occasions with our doctors and nurses, but we could see the determination in Aza’s eyes, even at her sickest. She has taught us to hold onto hope even in the darkest moments.
Aza is expecting to have a very exciting summer as she is beginning all the prep work for possible decannulation. Even though she has experienced so many ups and downs in her life, she is always so happy and fills everyone’s lives with joy and hope. She is truly our miracle!