Steve is...

I sat here and tried to think of a witty title to this post. But in the end there is no witty title to tell this story. Steve, is an inspiration, a joy, a blessing, a lover, a pain, a brother, a fighter, a son, a miracle and most importantly, Steve had the chance to grow up and be Steve.  There is no perfect word to describe Steve because since day one he has surpassed all expectations that were set for him.  Some of you know Steve's story because you have lived it through our family but others don't know anything about my family and our story.

When I was five years old I found out I was going to become a big sister.  Little did I know at that time that he would teach me the most valuable lessons in life and he would shape me to become the person I am today.  At 26 weeks Steve was born via emergency c-section because my mom suffered placental abruption.  He was born March 16th 1997 at only 1 pound 13 ounces.  I personally do not remember much from this day because I was only five, but I do remember getting a phone call from my mom and dad telling me his name and not quite understanding why I couldn't see my new brother.  Neither did I know at this time that we wouldn't be able to bring Steve home for 125 days.  When Steve was born he suffered grade 3, grade 4 brain intraventricular bleeds that caused him to develop hydrocephalus.  Hydrocephalus is the build up of cerebral spinal fluid in the brain that puts harmful pressure on the brain.  To get rid of that fluid Steve received an external shunt in his brain for 2 month while we waited for him to grow big enough for a Ventriculoperitoneal (VP) shunt.   A VP shunt was placed in his head at day 70 when he was only 3 pounds 3 ounces.  As a result of Steve's prematurity and the brain bleeds at birth Steve still suffers today from cerebral palsy.  Steve's cerebral palsy is classified as left sided hemiplegia, where is affects only the left side of his body.  For Steve, he can still use the left side of his body to an extent but it takes more effort and concentration.  He wears AFO's on his legs to walk, a full one on his left side and a half one on his right side and he wears a hand brace on the left side at night and during certain activities to keep his wrist muscles in a straight line.  

When he was only 2 1/2 weeks old he had surgery for PDA (opening in heart that didn't close at birth) and still has a large scar on his chest today.  While in the NICU Steve was intubated to help him breath and because of damage that occurred when doing this he now has a paralyzed vocal cord.  He also has vision issues called ROP (retinopathy of prematurity) his bad eyesight as a result most of the ROP resolved now but he still wears glasses 24/7.  Along with all these major and minor surgeries during his 125 day stay in the NICU Steve had issues with sucking/eating where it took him over an 1/2 hour to drink 20 cc's because of this he was tube feed via a NG (nasal gastric) tube.  They had to regulate his sucking, swallowing and breathing because his heart rate and breathing would drop into apneic spells which means he would hold his breath and stop breathing.  This required constant regulation.  Also during his NICU stay he suffered from sudden onset kidney failure from toxic levels of antibiotics.  Luckily, it all resolved and was not an underlying issue.   Lastly, he was on oxygen his entire hospital stay, and even came home on oxygen and continued to use the NG feeding tube to eat.

When, I read that back it truly shows how much of a miracle Steve really is.  For those of you that know him he lives each day with a smile on his face even though he has faced all these hardships.  Therefore, the perfect word to describe Steve is a MIRACLE.

Christy Scimeca, Miss Pearl City 2015