James Wayne Hart's Story

James Wayne Hart was born 06/08/15 with multiple heart defects, the most serious being very rare double outlet right ventricle meaning both main arteries of the heart are coming from the blue blood side. He was diagnosed shortly after birth and flown to OU Childrens Medical Center where he is currently fighting for his life in the Neonatal Intensive Care Unit. James will have to undergo several surgeries including an open heart surgery to repair a hole in his septum, which ironically is a defect that saved his life, if not for the hole between the ventricles of his heart he would have suffocated right away after the cord was cut.

Since then, we have been speaking with the cardiologists, surgeons and had several heart echos done along with every test imaginable. James had to be sedated and placed on antibiotics to cure necrosis that was happening due to too much blood entering the lungs and not enough to the rest of his body due to his heart essentially operating on one ventricle.

I've been asked what an "average" day is like for a parent having to be far from home in the hospital with my child. I know there are many parents out there who may have had similar experiences, but every experience is just a little different; here's what it's like for me.

First, there is no "start" and "end" to a day; sleep is difficult at best. The mind wanders, running the "what if's", wondering if my son will ever see the light of day or if these moments will be all I have to cherish.

STAY STRONG... my family depends on me, don't lose your composure, chin up.. minute by minute. Keep Going. The room phone rings.. My heart races, palms start to sweat and the anxiety nearly paralyzes me before I ever touch the receiver, every inch of my being denying this is the call that he's taken a turn for the worse and we're needed right away. That's just waking up...I go out to eat breakfast most times around 11am because I only got to sleep around 5 or 6. A three year old confined in a small room with us doesn't allow much "quiet time", a little ball of energy that one is. A cup of coffee and a couple bites is all I usually manage. The housing arrangements graciously provided for us houses 14 families, many going through the same struggles. One couple that came in about the same time as us hoping their child was not born brain dead tells us they they have to decide whether or not to sign papers to pull the plug. Their outward strength towards the matter reflects my own but there's a torment on their soul behind their eyes. ...

By now anxiety is at critical mass, every noise even a whisper is like a dagger to the brain; stabbing at the last shred of sanity I've been clinging onto. I decide it's time for a walk. I have found a favorite little quiet spot at the hospital, secluded benches surrounded on all sides by bushes so passerby's can't see the sad sight of a man torn by feeling hopeful and fearful with the same thought. I feel alone as the tears flow.

I start to regain my composure, eat the cookie I bought at the cafeteria on the way down. Oatmeal raisin, not my favorite but at that moment it's delicious. Time to head back up to the room, lunch is over.

Feeling composed and walking through the corridors I even have a slight skip in my step with my music loud as it goes through my bluetooth headset. Walk into the room and I spread crayons on the floor talking Frozen with my daughter while coloring a picture with her. In my mind wondering how long I can keep this up, all while knowing there's no other choice.

Dinner's ready, 6pm already; not really feeling hungry so I tell my daughters go ahead without me. Silence.. I try to relax. Check my email; rent is past due, gas is cut off at home, water and electric are on notice. Thank God for the donations received because it was just enough to get it all back on, but now it's all gone.. next month is coming soon, my mind wanders on what will I do. I tell myself to deal with it when the time arrives. Check up on the business account.. nearly busted, the Tax Commission and UPS are fighting over the last of it like starved feral dogs on a scrap bone. There won't be a business next month.

By now it's around 9pm and my wife has been with James in ICU today; I do my best to muster up all the courage I can to see him this way, Its my time now to remind him that he's alive, I love him and he is not alone.

After arriving at NICU I go through the procedure, show them my ID, get my parent sticker and I'm allowed in. Not before scrubbing up like a doctor at the sinks; one minute from the elbows down. No jewelry from the elbows down, phone placed into the provided plastic bag. Reach his room at the end of the hall and there required to put on a gown, gloves, mask and head cover just to touch my son. Still he lies there, medicated, sedated, eyes closed and not a movement. I manage to shakily utter "Daddy's Here James" feeling the tears well up and trying to talk to him over the lump in my throat that’s nearly choking me. Not a grin nor a smile, he doesn't move, hoses coming out of him in all directions, so many wires and machines whirring and buzzing; you would think they're about to launch him into space. I can only set there for so long, I chat with the nurses about the city to get my composure back; crack a joke, not even a good one, followed w ith a nervous chuckle. In the room next to me, parents are overjoyed their child is doing good and being moved out of ICU. In another room, nurses scrambling to help an infant who is crashing fast and not responding. Call comes in there's another one headed by helicopter and they need to get a room ready. Another "Heart Baby", the highest level of urgency an infant gets in NICU. After many hours decide it's time for me to head back. I whisper in his ear, I love you son, praying it will not be the last time he will hear those words.

James Wayne Hart