This is our life

The first time I ever heard the phrase “medically fragile child” was during our second week long visit at the children’s hospital. One of the doctors said it and it stuck with me. We are now parents of a medically fragile child. What’s considered normal for our friends and their children is not normal for us. Their are rules and certain steps for Reese that we must take everyday to avoid another hospital visit. She has a team of doctors and nurses who know us and her by sight when we visit the hospital. She’s part of a program at the hospital for children who visit frequently at long periods of time and face complex medical care. We have a loud oxygen machine in the middle of our home with an oxygen hose long enough to stretch to any room in the house. We travel with oxygen tanks and they must be delivered and picked up every week. We have to take tanks to her babysitter and to the grandparents homes. When their is an air quality alert, we can’t even take her outside. We had a beach vacation planned at the start of the summer and we went without her because the doctors said she couldn’t travel through this summer.

Each morning and every night she gets a breathing treatment, we use a suction machine to take out any mucus in her nose and throat, she gets 3 to 4 medicines twice a day, and then we feed. She doesn’t eat like a normal baby, an 8 ounce bottle can sometimes take her up to an hour to eat. Each night we must put a pulse/oxygen machine on her with the loudest, most dream interrupting, sit straight out of bed, alarm on earth. It lets us know if her oxygen or pulse dips below safe levels established by her doctors. My wife and I have these routines down like a science, each of us has certain responsibilities and we work together like synchronized swimmers. It’s a 2 hour process each night just to get her to sleep and for us it’s the new normal.

A fever for Reese can mean many things and teething is the most normal one but any fever will give us serious pause. Last time she had pneumonia and was hospitalized, she was a happy normal baby all day long. Around 11:30 that night, she got fussy and wouldn’t go to bed or take milk. About 12:30am she felt warm and we took her temp and it was 99.8. At that time nothing to be alarmed over. 20 minutes later she had green stuff coming out of her nose and was moaning like she was in serious pain. She felt hotter and we took her temp again, it was 103.9!!!! We didn’t blink, it was to Kosairs immediately. When we walked in the ER, her pulse/oxygen machine alarm was going nuts, we were carrying her oxygen tank and she was moaning and coughing up nasty mucus all over my shirt. The lady at the desk took one look at us and motioned us to the nurse in triage within seconds. That nurse took less than 10 seconds to listen to her lungs and said “We’re going back, I’m guessing your part of Hearts and Hands?” That is the name for the special care group at the hospital that we’re part of that assist families of medically fragile children who visit often. When we walked to the back we had 2 nurses waiting for us and a doctor walked in right behind us. It was at that moment, I realized our journey as parents will never be the same, this is our life.

It’s so easy to worry about your first child, you worry about germs, you constantly call the pediatrician’s office, and your life revolves around your child’s day. This is normal for all first time parents. I feel like Elizabeth and I are on hyper worry when it comes to Reese’s care and at times we speak another language to each other. We discuss her heart rate, how many ounces, if she took this medicine, what her oxygen level is, what milestones she’s hit today, when her next appointment is, and if we can even take her outside. It wasn’t supposed to be like this. When my wife and I were born, we both walked by nine months! We were just sure when Reese was born she would follow in Mommy’s and Daddy’s footsteps, literally. Instead, we now get excited when her physical therapist tells us she sat up on her own longer than 2 minutes or our paediatrician tells us her lungs are clear and she gained weight this month. This is our life.