Kevin Scott and his journey home!

On May 23, 2015, Kevin Scott Lowery entered the world surrounded by loving parents, grandparents, aunts and uncles. He was also surrounded by teams of doctors, nurses and neonatal specialists who were trying to keep him alive. You see, Kevin was born at 24 weeks gestation and weighed just 1lb. 4oz.

The doctors promised to do everything possible, but warned us that his odds weren’t good. Calls for prayers went out to our family members around the country, many of whom had traveled to St. Louis just six and a half months earlier for our wedding. We wanted to start our family immediately, and were soon blessed with the pregnancy.

Kevin’s first weeks were touch-and-go. He was on a ventilator in an incubator, with feeding tubes and seemingly endless tests, pokes and prods. Unlike most parents, who get to cuddle and snuggle with their babies right away, it was months before we were both able to hold our sweet boy.

The challenges kept on coming. Pneumonia, a collapsed lung, infections, a hernia and just one functioning kidney. In July, he was diagnosed with scimitar syndrome. This is a rare congenital disorder that has not really been studied in premature or extremely low birth weight babies. One of the symptoms of the syndrome is VSD (Ventricular Septal Defect), mo commonly known as a hole in the heart.

Despite all of this, Kevin continued to fight and grow, and by mid-August he had reached 4 ½ pounds. That same week, he was diagnosed with Retinopathy of Prematurity or ROP. Surgery is needed within 72 hours of diagnosis, so Kevin had more than 1,000 spots in each eye laser-treated to halt the progression. Unfortunately, he has lost sight in one eye. Just three days later, he had a cardiac catheterization so that the doctors could get a better look at his heart for his upcoming surgery.

By this point, we had both returned to work, which meant long days followed by long evenings at the hospital. Seeing baby Kevin’s progress made it all worth it.

In early September, the surgeons performed open-heart surgery on Kevin and were able to repair the hole in his heart as well as make some additional repairs. He was still struggling with chronic lung disease from the scimitar syndrome, though.

Just a few weeks later, a tragedy shook this close-knit family when Dave’s father Kevin, for whom baby Kevin was named, died unexpectedly of a heart attack at age 57. The loss was devastating and, when coupled with the concern for the baby, it became almost unbearable. The love for this strong little man is what’s keeping this family moving forward.

In October we realized that Kevin was not going to be able to extubated and it was time for him to get a Trach. At the same time of this procedure Kevin also had a G-Button placed and had bilateral hernia repair done. In true Kevin fashion he bounced back from these procedures very quickly.
In March I lost my job due to all the time was out of work for surgeries and procedures for Kevin. We try to ok at this as a positive because I need to be home with Kevin but this makes our financial situation prty unstable. <>In ApriKevin was strong enough to make the transition to Ranken Jordan, a Pediatric Bridge Hospital, focused on training us and helping us get home. Towards the end of May Kevin was starting to struggle a bit with his breathing and Ranken felt it best he takes a trip back to Cardinal Glennon to be monitored a little closer. Kevin celebrated his 1st birthday on May 23rd but soon after was transferred to the PICU with Rhino Virus. We struggled in the PICU for several weeks but we stabilized and got back to the TCU. Kevin continued to have these episodes where he would clamp down and stop breathing. Last week Kevin went in to have two granulomas removed from his stoma by his trach and when they were in the OR they found another large granuloma at the top of his airway which was also removed. Since the procedure last week the episodes have significantly decreased and he seems so much more comfortable. We were able to get Kevin back on his home ventilator tay and we are hoping in the next few weeks to get back over to Ranken. From there our #1 goal is to finally get Kevin home for the first time where he can grow and thrive.

Thank you all for the support and love you have shown us through this incredible journey. We will continue to fight with Kevin.
#TheSuperKev

Love,
Jen and Dave