About

About Luke.

On April 20, 2013, Luke entered the world screaming and ready to take on what the world has to offer him. Little did we know how much of an impact this little munchkin would have on our lives as well as others. Luke was born a blue baby. Just reading this, you’re probably as confused as we were when we found out. Luke was born with a congenital heart disease called Tetralogy of Fallot. You can read more about it here.

https://kidshealth.org/en/parents/tetralogy-of-fallot.htm

Let’s just say our world was turned upside down and flipped around since that day. It’s still a little difficult to process even though we are seven (7), almost eight (8) years down the line, but here we are. We take every day as they are…Just one day at a time.

The Beginnings of Luke’s Heart Journey.

It was discovered that Luke had a number of problems in addition to Tetralogy of Fallot. Luke had a tethered cord, holes in his heart, his pulmonary valves is/was leaking, his bladder and kidneys weren’t working together, imperforate anus…just to name some.

Luke had surgery at 1 day old to help Luke due to his imperforate anus (he was born with no anal opening). A colostomy tube was inserted into Luke’s abdomen (mainly his large intestine) so that the waste could come out into a bag. The bag would be changed constantly, just like you would change a baby’s diaper. Luke spent 13 days in the nicu to recover from surgery. This was especially difficult because we couldn’t stay with him. I was pumping at the time and I couldn’t feed Luke while he was in the nico. I was breastfeeding but not breastfeeding. The nurses would have to freeze my milk until it was time to feed Luke and then they would defrost it. It was a timely process.

At 3 months old, Luke was back in the hospital but this time for surgery on his heart. The surgeon was to patch up the holes in his heart, stretch Luke’s pulmonary valve from 1mm to 3 mm (babies are normally born with their pulmonary valve at 7mm) and to add a shunt between Luke’s chambers of his heart because his didn’t go all the way up. Luke spent 14 days in the picu for recovery. We spent the holiday in his hospital room and watched the fireworks from his bedside.

Luke is now 7 years old (about to be 8 in April) and he has had about 10 surgeries to date, preparing for another heart surgery coming up.

Join us on this journey…Luke’s journey to repairing his broken little heart.