Jack Joseph

Jack was born early Fall of 1999 in Simi Valley, California. He was a beautiful little guy, but I knew the minute I tried to nurse him something was wrong! The doctor said it was "new mother jitters'. Three weeks later and with a new pediatrician on board we discovered Jack had a murmur. In addition to the heart issues Jack was facing he also had severe reflux. We tried tirelessly to get him to nurse or take a bottle (so many different kinds of bottles, formulas, techniques and medications from every expert available) but he was in so much pain and at 8 weeks old he stopped eating.

We had gone home to Colorado for Thanksgiving and while there Jack was hospitalized for dehydration. An NG tube was placed in his nose. It was there at Children's Hospital of Denver that we started to feel hopeful about Jack's future! The cardiologist there, Dr. Pietra, told us Jack would probably need a pacemaker for his heart block and that there was a procedure called the "Double Switch" that could help Jack. We returned to California and UCLA and had a pacemaker implanted and pulmonary artery banding (PAB) procedure to prepare for a future double switch! But, we had to get back to Colorado and Dr. Peitra! Over the course of 3 months we sold our house in California and moved back to Denver... all good, but Jack was still not eating. There is so much drama here... basically another great doctor came to our rescue.

Although surgeons both in California and in Colorado said they could not or would not place a g-tube after a pacemaker had been placed, Dr. Chang at PresStLuke's of Denver placed Jack a g-tube laparoscopically! Wow... life got good after that! Jack started to grow... not eat, but he did start to grow! He was one year old and finally made it passed 12 lbs! The next year was a struggle to get him to "gain weight"... again, so many formulas, pumps, g-tubes, and endless doctor appointments took place, but we had a plan. We wanted to get Jack big enough to withstand a major cardiac surgery. To make it to the Cleveland Clinic and to Dr. Roger Mee for a Double Switch was what we were working for! In March of 2001 we met with Dr. Mee and decided to schedule surgery in early September of 2001. We arrived in Cleveland September 4, 2001 and thanks to another family hero, Dr. Ted Stathos, Jack was nearly 20 lbs. On September 6, Jack had a very successful double switch. Dr. Mee and his team at The Cleveland Clinic had performed more than a miracle! Then on September 11, while waiting for a pacemaker check we saw the breaking news in New York... I cannot explain to you the strange emotions that were taking place. Such a tragedy in one hand and such a miracle in the other. We drove from Cleveland to Denver just 6 days after Jack's double switch.

On February 12, 2004, two and a half years after Jack's double switch, we finally had Jack's g-tube removed! What "flippin" joy!

In January of 2005, Jack had to have his pacemaker replaced. We were in Minnesota at the time so we had the pacemaker replaced at the Mayo Clinic... another great hospital and another set of great doctors.

Now, we are in Northern California. Jack is doing SO great! He is a smart, funny, active kid who loves to talk, draw and tell stories. He plays soccer, swims and wrestles his brother. People are always shocked to hear that he is a cardiac kid and has been through so much! All I can say is that we got so lucky... We were so BLESSED to have had such wonderful doctors! There is a book written about such doctors and our fate as patients. It is called "Walk on Water" by Michael Ruelman.

Thank you for letting me share. God Bless!