by Monica L. Whitworth
In our family, choosing a baby’s name is a family affair. We will toss around hundreds of names, some of us approving, some of us highly disapproving, many of us making fun of a certain name and creating an entire dialogue of how that child would live with a “name like that,” but of course the pregnant mama and daddy have the final say. When it came time to name my granddaughter Evalee, it only took looking up the biblical meaning. The name Evalee meant “alive” or “to live.” We knew then that we had found her name.
Evalee’s story really starts 22 months sooner than her birth date. Evalee had a brother, Emmanuel, who only lived 40 hours. His lungs had never developed. They were only about a quarter the size of what they should be. He was not eligible for a bypass machine because he had muscles issues as well. His legs were rigid and he never moved them. He had club feet. We have only one picture of him with his eyes open. He never cried. The tough little guy actually tried to breathe on his own, but it proved impossible. The specialists never could diagnose him, so his parents didn’t think it was genetic.
Until Evalee was born…
After Evalee was born, the doctors came in and said it appeared that she had the same symptoms her brother had, but not as extreme. She had lung issues, but her lungs could sustain life, as they were mostly fully grown. She immediately had to go on oxygen. Her first month she would rotate between high-flow cannula, ventilator, BiPap and low-flow cannula. She also had swallowing issues, so she received her nutrition through a G-tube. Evalee went through many rounds of testing, but the doctors could only identify symptoms. There was never a name for whatever it was that caused them.
The one symptom that set her apart from most other infants was that when she cried, she would pass out. The doctors performed a brain scan, MRI, blood tests, EEG, EKG and many other tests that ruled out seizures and other diseases. Even using Emmanuel’s autopsy results and comparing them with Evalee’s muscle tissue, they could not find what was wrong. They knew it had to be genetic, but both her parents had other healthy children. They have not been able to isolate the gene causing her condition yet.
After two months in NICU, Evalee was able to go home on oxygen. But low-flow oxygen wasn’t enough for her to expel her carbon dioxide, so when it got back up into the 80s, she returned to the PICU. She had only been home less than a month.
The doctors said she needed a tracheostomy tube to help her breathe. My daughter and son-in-law wanted a second opinion, so they flew her up to a major children’s hospital. In order to bring Evalee home to thrive and be a part of the family, the decision was made to place the trach. Did it cure her symptoms? No, but it was easier to bag her when her sats went down.
The trach works wonders for many children, but for Evalee, it didn’t help that much. It only introduced issues that come with having a trach. She still did better on high-flow cannula, but this treatment is usually not provided at home, and we couldn’t leave her in the hospital indefinitely.
Evalee is active, very smart and very observant, so she is not always easy to watch or hold. My daughter can’t watch her 24/7 without sleeping, although she has had to go several days/nights with staying awake 36+ hours. She has one nurse who has been with her since the first time Evalee came home. But most of the nurses have rotated in and out of Evalee’s life. One positive from rotating nurses is that baby girl isn’t afraid of anyone, because people have gone in and out of her life in the hospital and at home.
As long as you keep Evalee entertained so she doesn’t get mad, she doesn’t have episodes. It is only when she gets mad that she passes out. So, anyone outside of the family who comes in probably thinks we are a crazy bunch, because we do anything to make her happy. We make goofy faces, talk silly and sometimes even stand on our heads! (Not really, but it seems that way.)
With all the challenges of having a child with medical needs, there is nothing like the reward of seeing her big grin and hear her squeaky noises. Her favorite play toys are her medical equipment (mostly tubing) and the sound of the ventilator plays a soothing rhythm for her to go to sleep. She is our princess and we couldn’t imagine our lives without her.
A special thanks to all the doctors and nurses who work so hard to save lives and help parents through challenging times. Some of the best nurses we encountered were in the NICU, where they work with life and death every day. It amazes me. We never really understood the struggles of other parents caring for children with special needs, but we can now appreciate what they do and how much time they devote to their children.
Being a parent of a child with medical needs is not an easy road or a road someone would choose to go down. It is path that is carved for people who have the fortitude and compassion to make the journey every day, every hour and every minute. I am so blessed to be a part of Evalee’s journey. She has touched my life in a way that nothing else could, and brought me back to my own journey with Jesus Christ my savior.