Luke after his 2nd surgery

Luke after his 2nd surgery

At home after my first surgery. I love the bathtub!

Luke was a full term baby with a normal pregnancy. He was rushed off to the NICU within 30 minutes of birth. He was eventually taken to the Children's Hospital and had to be put on ECMO the night of his birth. He could not oxygenate his blood and his lungs collapsed.

Luke was not diagnosed until the next morning. His diagnosis of TAPVR and his current critical condition and ECMO status prompted emergency surgery on his second day of life. Luke's pulmonary veins were attached to a vein in the back of his heart and should have been attached to his left atrium. All 4 veins then drained from this vein, into his right atrium. This prevented oxygenation of his blood.

The surgeon told me prior to the surgery that Luke had a 60% chance of surviving. Exhausted from giving birth and the trauma of the situation my family and I watched as 15 people managed to prepare him to be moved from the NICU to the operating room. The surgeon had taken the 4 veins and the vein they were attached to and created a confluence that he then attached to the left atrium. Luke came out of surgery successfully and was released within 10 days. We were sent home with the impression that he would need no other surgery.

Luke was doing so well that I requested he be taken off his enalapril and his digoxin. The doctor agreed, pending an echo. The echo showed that in fact Luke was not doing so well. He had pulmonary vein stenosis and stenosis where the confluence was draining into the left atrium. So I was tasked with scheduling another surgery. I had a little time and was able to research surgeons and find out 'who was who' in the world of pediatric heart surgery. After much consideration Luke was scheduled for surgery at a hospital 3 hours away.

Luke had his 2nd surgery on February 8th, 2005 and was released on Valentine's day. The stenosis looked very good on the post operative echo. Now we are waiting and watching to see if the stenosis returns. We continue to struggle with his low weight and his inconsistent eating patterns. We are praying that this is his last surgery but have no idea, no guarantees.

Update (March 2005)

Luke had an echo on March 14, 2005. The site of repair looks great and there is no trace of recurring stenosis at this point. We will continue to keep a close eye on him. Luke is now a very active, happy little guy. He seems to find humor in most anything. We continue to battle with his eating, but he is growing and achieving regular developmental milestones!