Julian with his little brother, Christian

Julian was born with Tetralogy of Fallot with severe pulmonary stenosis. He had his first corrective surgery when he was just seven weeks old. The repair was quite extensive compared to what they anticipated and required a second surgery several hours later (to place a homograft pulmonary valve) when he went into congestive heart failure.

It took 19 days and several attempts to get off the ventilator before he was strong enough to come back home. It was quite a traumatic experience for us and we are still dealing with it today.

Julian just had his third surgery this past July to replace his homograft. That visit went according to plan and we only stayed five days. He is doing very well and growing up so quickly. He is having irregular heart-beats that the doctors are keeping an eye on. They are hoping it is due to the heart adapting to its new and enlarged pulmonary vein and it will get better over time. I tell my family if the doctors aren't concerned, then neither am I. but you all know that is sooooo not true! I think about it every day. I know his heart is never going to be anatomically correct and I pray it just continues to function proficiently.

We got a six month pass at the last check-up—we have never been lucky enough to get to go an entire year. But six months is better than we had been going. So this spring we will hopefully know how well the new valve is functioning.

November 2006

In April, 2006, at our last checkup we learned Julian was rejecting his homograft from last summer. He was forming a calcification around the entire homograft and it was becoming hard and narrowed again. Also the irregular heartbeats were continuing and would have to be "addressed". After presenting Julian's case to the surgeon's review.... it was decided Julian would need another surgery to replace his new valve with a bovine valve. This material is more durable and should withstand degradation of future rejections. And they would freeze the areas where the irregular heartbeats were generated at the same time. Needless to say, we were shocked and unprepared for this news. But reassured this would be routine as before and was necessary it was done relatively soon.

Julian had a trip to visit his Aunt which he had been looking forward to for weeks, and we decided to schedule his surgery right after we returned from our trip. Surgery would be scheduled May 16, 2006 with the pre-op stuff the day before.

The day of surgery came and when our baby boy asked if we'd be there when he woke up, we assured him we would and told him to have a nice nap. And kissed our precious baby boy "goodnight". The surgery went according to plan and was presented to us as a success with nothing out of the ordinary. But when we saw Julian, it was clear something was not right. He would not respond to our voices and was not waking up. That night he started having seizures. CAT scans confirmed a massive brain injury caused by a lack of oxygen. We waited and cried and prayed by his bedside, hoping for a miracle or any sign he was fighting for recovery. As the days went on he became clinically brain dead. We said our tearful goodbyes to him and let his poor little body rest. This was May 20, 2006.

Our brave warrior fought through so much and in the end, his heart was beating regular and strong. The last muscle in his little body to cease functioning. Julian's heart now beats through his Daddy and me and he is dancing and singing forever with Jesus.