The Life-Long Struggle of a Medically Fragile Child + {Free Hospital Packing List}

September 18, 2017

My baby did not end up in the NICU because he was premature. He ended up in the NICU because he was medically fragile. Though these terms are certainly not mutually exclusive, many preemies–like my other child who was a 34 week feeder/grower–outgrow their immaturity. Most babies born medically fragile face a life-long struggle of medical problems. The struggle is real. The NICU is just the beginning.

My son was born with a rare chromosomal abnormality resulting from a break in genetic material at conception. Shortly after his birth he had trouble eating, breathing, and maintaining his body temperature–things preemies commonly struggle with. He also had brain, heart, and kidney complications. During his NICU days, we waited to see whether or not his fragile body was well-enough equipped to function in this world. He proved his strength and determination to us. His medical problems however, continue to follow him long past the NICU and result in numerous specialist appointments, ER visits, and hospital admissions.

During our NICU stay I was overwhelmed with fear and anxiety over what the future would hold, yet I needed to figure out how to help my child live his best life within the constraints of his body. It began with giving him a feeding tube at four-weeks-old and medication to manage his risk of kidney infections. Now at four-years-old we are still adding and tweaking his medical protocols. In some ways it’s easier. In some ways, harder. What I wish I had at the beginning was a guidebook–a story of someone else walking this similar path who made it through to the other side where life was full of laughter and fun again.

During the first year of my son’s life I began slowly putting one foot in from of the other. I learned how to prepare for specialist appointments, discuss my concerns and research with doctors, chose the proper therapists, pack for a planned hospital stay, and prioritize things in my life that were important to me (in spite of receiving a completely new role myself). I wrote many of my findings down and published this book, hoping someone else would benefit from what I learned the hard way.

The NICU was not just an initial struggle to overcome. It marked the beginning of a life-long fight to manage my son’s delicate body systems. Instead of spending his first days cuddling, sleeping, and eating, my son was examined, poked, and discussed. I still see the NICU as the brutal beginning to a life full of medical challenges, but I no longer feel like I’m drowning in unknowns and I can most definitely say our lives are full of laughter and fun again.

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