Oh my goodness. How amazing is Tatum?!?! She is such an awesome mom and I love that she shares these wonderful stories with the world. Enjoy.
by Tatum Spruill | Staff Writer for The Snap Mom
When I learned my son, Jansen, would have Down Syndrome, I had no idea that his diagnosis could potentially come with many health problems. Automatically, he was at a 50/50 chance of having some kind of heart defect. Prenatally, and after he was born, an echocardiogram confirmed that he had two holes in his heart, one of those being abnormally large. The plan was to let him grow, and do the surgery when he was six months old. Things don’t always go as planned.
When I was released from the hospital after giving birth, he was nowhere near ready to come home. He couldn’t breathe or eat on his own. We lived two hours from the hospital, but we were lucky enough to get a room at The Ronald McDonald House. My days were spent at the hospital, and my husband drove back and forth to work every day. We couldn’t afford for him to take off more than he already had.
As the days and weeks went on, Jansen got worse. He was sleeping too much, and his skin faded. His heart was too sick.
Watching my son in congestive heart failure was…surreal. These things shouldn’t happen to babies. It was like a dream- no- a nightmare. His doctors decided it couldn’t wait until he was six months old; he needed the surgery right away.
We moved to a hospital across the street, and he underwent open heart surgery the very next day. It lasted about five hours. His heart had to be stopped while they repaired the holes. This terrified me. When they brought him out of the operating room, they let my husband and I see him for about five seconds. He had IVs and tubes everywhere. His whole little body was swollen, and he was on a ventilator. Oddly enough, he had never looked so good to me.
When he went in, he was a very pale and extremely lethargic baby. When he came out, his body was pink with life. He was put in the Cardiac ICU (CICU). He was in such a fragile state that his nurse, who normally took care of three babies during her shift, was to only take care of him. His airway was abnormally narrow, and they were afraid if the ventilator tube moved, they couldn’t get it back into place in time. It took them over an hour to intubate prior to his surgery. I remember looking at his nurse and thinking, “This girl is my age. She can’t possibly do this.” But she did. For her entire 12 hour shift, she never left his side. She didn’t eat. She didn’t even go to the bathroom. I am ashamed that I doubted her. We spent three days in the CICU before being upgraded to the heart unit in the NICU. Jansen was such an active baby. His heart was fixed, but he was breaking everyone else’s. Saying all of the nurses loved him is an understatement. He was the talk of the unit. Even the nurses that didn’t have him on their shift would come in there to see him and hold him. That hospital became our second home, and those nurses our second family.
Jansen now sports a scar that goes all the way down to his abdomen. Every time I see it, I am reminded of how tough he is. He’s my little hero.
Tatum is a wife and mother who lives in a small town in Texas. She is blessed to be a stay at home mom and to feed her passion for spreading Down Syndrome Awareness through writing.