Happy Heart Month!
Today's spotlight is on Emmett. Emmett was not diagnosed prenatally but thanks to Texas Children's Hospital he is alive and well today! Emmett's Momma, Skylar tells his story below.
Everett was born on March 5th, 2018 at 8:23 am. He was a 6lbs 4.5oz and 19.5 inches long little boy. As I recovered from my c-section I mainly slept but never did they bring my little boy to me. They told me they were giving him a little bit of extra oxygen. Hours went by and he still wasn’t wheeled down to my room, so 8 hours after my surgery I got out of bed and walked to my wheelchair and was wheeled down to see Emmett. As I held him for the first time his oxygen saturation’s went up and we thought he was getting better. Over the night a nurse was watching him closely and knew something wasn’t right so the next morning they told me that my perfect little baby might have a congenital heart defect and that he was being transferred to Texas Children’s Hospital in Houston. Soon he left in an ambulance with the kangaroo crew. His Pops got to ride with him because the hospital wouldn’t release me because my blood count was low. So while he made his way to be treated almost 3 hours away from me, I had to stay in the hospital where he was supposed to be with me.
They told us Emmett has HLHS, Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle and a lot of other little things to go along with it. He was in so much cariogenic shock that his condition was worse. His organs took a lot of damage so before we could have the Norwood surgery he had to recover from that. They told us his condition requires a series of open-heart surgeries to give him the longest life possible with a possible heart transplant in the future. The Norwood, Glenn, and Fontan. They told us this first surgery would be the most critical one and the few days after are too.
He had his first surgery on March 22, they did a Norwood Sano but 3 days later they had to do emergency surgery for a Sano takedown and replaced with a 4ml BT shunt. After the emergency surgery he was in a better place, but still critical. His chest remained open and on the 31st of March, they finally closed it! During Emmett’s recovery time, he was intubated and extubated multiple times. And we hit a lot of bumps in the road. Eventually, we got him extubated and had a rocky rollercoaster during interstage.
The Cardiac team gave us three options, 1. To not do a Glenn and let him be how he is now 2. To go ahead and do the Glenn even though it’s risky, or 3. To be put on the heart transplant list. With the help of the team, we chose to go ahead and do the Glenn with nitric oxide. We were told Emmett was going to come out of surgery way sicker than he already is. The days were all thrown around on when Emmett would go into surgery but he was scheduled for August 14th, but if something was available sooner, they would take him in then.
After 6 months of being in the ICU, Emmett got to go to a Step-Down floor on his 6 month birthday! There he continued to strive through his recovery! He had a G-tube placed on October 2nd and on his 7 month birthday, October 5th, and after staying at the hospital for 7 months, WE GOT TO TAKE EMMETT HOME!!! Emmett has 5 medications he takes all throughout the day and has pretty frequent appointments with cardiology, GI for nutrition, general surgery for his G-Tube, a developmental class, and physical and soon to be speech therapy! From October to now, Emmett has been the most happiest baby you could ever meet! He is truly a miracle and such a blessing to our family!!