Story by Zy’Aire’s Parents, Davida & Frank
Hi! I’m Zy’Aire!
Hi! My name is Zy’Aire and I’m a Little Hero! Thank you for stopping by to read about my journey and the impact that Little Heroes League has had on my family and me! Before we get started I thought I’d introduce you to my mom - Davida, my dad – Frank, and my care coordinators, Megan, Lisa, and Jenny.
Everything was fine in mom’s first pregnancy (me!) until she suddenly started feeling extreme pain in her lower back, so bad that she could not stand up straight. She rushed to the hospital thinking that she was just dehydrated or maybe even Braxton Hicks’ contractions. Once she arrived at the hospital she found out that she was dilated 1cm and had to be admitted into the hospital. Little did she know I was going to make my grand entrance in a couple of days. Everything was going okay until mommy’s water broke on day two in the hospital and my heart rate was dropping, and they had to do an emergency caesarean section to ensure we both were completely safe. On Christmas eve of 2017, I was born. Four months early and weighing just 1lb 5 oz, my underdeveloped lungs needed support. The doctors immediately put a breathing tube down my throat.
Mom, managing her own medical problems, was rushed to the adult Intensive Care Unit (ICU) with a blood pressure of 250/150 and a temp of 104. Because of her condition, I didn’t get to meet and cuddle with my mom for my first two days of life. Thankfully, dad was able to come and be there for me.
My First Year
Two days after I was born, I started showing off my strength. The doctors in the Prentice Neonatal Intensive Care Unit (NICU) removed my breathing tube and they put these two little tubes in my nose for breathing support (I later heard them called “cannulas”). However, I started feeling sick a few days later as I had contracted “pneumonia.” Which meant back to the breathing tube down my throat. Over the next few months I remained intubated as I contracted another round of pneumonia. I finally started feeling better and we were ready go home for the first time. However, when mom grabbed my legs to change my diaper I couldn’t stand it! I was in so much pain! The doctor people discovered I had contracted a scary bone infection called “osteomyelitis.”
Mom and dad were so scared because this is a very life-threatening condition. Because it’s so scary, they transferred me over to Ann & Robert H. Lurie Children’s Hospital of Chicago for monitoring. Over the next 11 days, I underwent seven surgeries to clean out the infected areas of my bones. All the surgeries required me to be paralyzed and under lots of heavy sedation. As a result of all the cleaning, large chunks of bone were removed, especially around the top of my hips.
Complicating my care even more was the fact that I had been intubated for so many months. It meant my lungs suffered as a result of all the inflammation. The doctors decided it would be best for my recovery if I had a tracheostomy (trach). This is a surgical procedure where they cut a hole in my neck directly to my windpipe and then hook up a breathing machine (vent). They also anticipated that I was going to have oral aversions because the tube was down my throat for so long, so they decided to add a G-tube since I was already going under. This meant cutting a hole in my cute little tummy so food and meds can be delivered directly to my stomach. It’s not as bad as it sounds. When I first got out I started taking bottles, but I decided I didn’t like them anymore…so it’s a good thing they added the G-tube, because it’s now the only way mom and dad can get me fluids. To this day I refuse to put anything plastic in my mouth (bottles, pacifiers, tethers, etc.). I will eat from a metal spoon, though - I like to keep my parents guessing.
I can’t imagine how tough all this was for my parents – because I know they were worried I wasn’t going to make it. Also complicating things was my parents didn’t make as much money during this time because they had to spend so much time at the hospital and couldn’t work.
BUT finally I busted out of the hospital on Oct 16, 2018- at 10 months old. I owe it all to my parents- I got my strength and stubbornness from them!
The first day home for any parent of a medically complex kid like me is extremely overwhelming. And it was no different for my parents – as my first night almost ended in tragedy. Water entered my breathing tube and I began choking. Having me at home made things pretty hectic! My parents and I are pretty busy during the weeks. Dad works nights and mom works days and I work all week long. Monday – Wednesday are reserved for my therapies (occupational, physical, speech, and development). It’s a lot of work, but these therapies are critical services that help me catch up to where I need to be. Thursdays and Fridays are reserved for appointments which is a mix of pulmonary, nutrition, orthopedics, and my primary care doctor. I have a night nurse Monday through Thursday who watches over me while I sleep to make sure I don’t get into any trouble with my breathing tube. Mom and dad watch me at nights from Friday through Sunday (which usually means I get to sleep in their bed, so they can get some sleep, too). I receive two breathing treatments per day and get fed through my g-tube five times per day. Mom is really pushing for me to start eating by mouth, so she works on that twice a day with me. I have a LOT of equipment. I have an entire room dedicated to all my supplies that includes g-tube and trach equipment and will soon include leg braces and a bath chair!
When I’m not at an appointment or with a therapist I like to be like any other kid. Mom always tells me “one day at a time,” and I’m “normal.” I love playing with my toys and watching Sesame Street and learning new vocabulary. There’s also a show where these little animated crayons draw the incorrect colors inside objects (like green tree trunks). Then they have to erase it and man, does that eraser crack me up!!!! How do they come up with this stuff?!! I also like to play jokes on my parents. I’ve learned that my parents react and spring into action when they think I have water in my trach. So, I fake cough to get them running my direction and then laugh when they realize I was messing with them. I know it’s not the nicest, and they’ve been through a lot, but so have I and I love a good laugh! My parents tell me I’m the happiest little baby you’ve ever met. They also call me “stubborn” and “unbothered.” I don’t know what all these words mean, but thanks!
Little Heroes League
Mom and Dad were already NICU veterans when they were first approached by LHL program representatives for enrollment. After initially feeling like mom didn’t need it, she accepted to be part of the LHL Care Coordination program. And oh boy are we all glad she didn’t resist because it didn’t take long for her and dad to fall in love with the program. Mom says, “It’s been…Oh my god… finding a pediatrician, keeping up with all the appointments, calling to schedule everything, making sure everything is done. I would have to quit my job. Literally. It’s just so much. I tell my care coordinators, Megan, Lisa and Jenny, I don’t know what I would do without you guys. You’re stuck with me forever!”
Mom recalled, “when I first got home, I almost accidentally killed Zy’Aire. I literally had a mental breakdown and I called everyone I could. Like I wanted to come back [to Lurie’s] if I could get the same primary nurses, the same room.”
One of the biggest benefits of LHL has proven to be transition management when tricky babies like me go home. My mom says, “When we first came home, our care coordinators made sure everything was organized and good. They came on the 2nd day home too. “When I had my mental breakdown, Jenny dropped everything she was doing. She brought us food. She came and made sure I was okay."
For my parents its really all about consistent and reliable support from the care coordinators. My mom said, “They always call to check in on us. Lisa, our outpatient care coordinator, comes to all the appointments. Makes sure we’re straight. She cares. When we didn’t have any feeding bags, she came over and dropped them off. She sat with Zy’Aire on the floor and exercised with him. I was able to get up and do some things around the house.”
When talking about one of our care coordinators, mom expressed our feelings so well, “It’s not just a job for her. She’s an angel on earth.”
Mom and dad are the best. They are so optimistic for me, and my biggest fans. Mom says, "My Mom Goal: this time next year, he'll only need vent at night." I’m already chatty (it’s a little tough to talk over my trach), but they constantly talk to me because they want me to be as exposed to as much language as a I can. That way when I get this trach removed I’ll be ready to talk their ears off! But the other day I overheard mom say, “however I’m not in a rush to have him start talking back!” I’m not sure what “talking back” is but sign me up! They’re also hopeful I’ll walk someday. I don’t like putting much pressure on my feet - can you blame me? I spent my first 10 months on my back! But they’re working hard on making sure I get comfortable with weight on my feet. I’m also going through a strict core routine to help me support my head and get that six pack! The sky is the limit for me!