Our Kids - Aiden

I remember being asked "So, are you going to have anymore children?" My answer was always "No, I have 3 healthy children already, I don't want to press my luck." WELL, surprise!! I was pregnant again. I went in for my 20 wk ultrasound. Having been through many before, I knew pretty much what was what. I noticed the doctor was taking a really long time looking at the heart and immidiatly felt something was wrong. Then the doctor said "I think there is something wrong with your babies heart. I want you to see a Pediatric Cardiologist." With those words, my life was forever changed.

My husband and I met Dr. Michelle Frommelt at Childrens Hospital of Wisconsin. She told us our son had Hypoplastic Right Heart Syndrom, Tricuspid Atresia, Pulmonary Atresia. WHAT!!?? I did as much research as I could but did not find much.

Aiden came into this world on December 28, 2003! He was immediatly taken to the NICU and given prostoglandens(sp?). With this he stopped breathing. By the time I got to see him, he was hooked up to MANY things. I was not able to hold him and I think that was one of the hardest things. He had his first surgery at 3 days old. (The BT Shunt.) He did really well and FINALLY opened his eyes on Dec. 31. I will never forget that moment.

We spent most of his first 4 months of life in the hospital for NHR things. He had sleep apnea and severe reflux. By the time we got that figured out and life started feeling somewhat "normal" it was time for his next surgery. He went in on May 19, 2004 for his Glenn. This surgery was really hard on him and he did not do so good at first. There was a moment when he started to go down hill REALLY fast and he had about 20 docs in his room. Thankfully, he fought and fought and started to get better. Before we were sent home they did a cath and found his right pulmonary artery was narrowed where they had done the surgery. They needed to fix it but felt he would not do good being opened again. A wonderful doctor was able to balloon it via cath!! We went home 2 days later.

Life got a little easier, we had some bouts with pnemonia and a few short hospital stays but he was growing and thriving. Fast forward to November of 06. He started turning blue quite easily. It got to the point where he could not walk more than 10 feet without turning blue and being too tired to go on. He would stop and sit wherever he was and say "I tired. I need a rest." It was hard to see him go through this and to not be able to play with his big brother. His o2 at this point was low 70s at rest and low 50s at play.

He had his Fontan on March 27, 2007. He did amazingly well. He was up and walking/running down the halls with chest tubes still in. He was such a trooper and such a strong boy. He would have been in and out in 5 days but found his left lung had a leak and he needed a chest tube put back it to let the air out. He was not too happy about this but handled it well.

Since his Fontan, he can run, play, fight, ride his bike everything a "normal" 4 year old can do! He talks about his surgery once in a while but only says that his tubes hurt really bad! Some advice for parents whose children didn't have the Fontan yet, Don't let them watch the docs take out the tubes!! I think that will be with him forever. I know his future is uncertain but with all of the medical advances research being done to help our kiddos, their future looks brighter and brighter every day.

Amber Hendricks