Emery's 7th birthday party

Emery was born on Oct 23, 1998. He was a full term baby that “appeared to be healthy.” The next AM his pediatrician said the dreaded words to us: “we think they may be something wrong—we need to have you see a cardiologist—nothing to be concerned about.” Before long we were looking at charts and graphs, hearing about medications, prognosis, and what to expect from Emery’s life. He had been diagnosis with a ventricular septal defect (VSD, a hole in the heart) and aortic stenosis. It was truly devastating and incredibly scary. Our life had turned upside down. We were able to take Emery home from the hospital—loading up on several different types of cardiac medications.

Our life started with weekly doctor appointments. Emery seemed to be doing ok until the week after Thanksgiving. We went for a cardiologist appt and he has lost weight, and was also diagnosed with arrhythmia. I remember the doctor telling me sometimes kids can be cared for better in the hospital, and this is one of those times. He talked to us about Phoenix Children’s Hospital—and we knew that was the only place for Emery. I would have never dreamed the first time driving up that this would become an extension of our home. Emery’s first stay was from the end of November until 2 days prior to Christmas. Clearly not how you expect to spend your first Christmas with your new born. It was a rather “dark” time for us, but the staff was awesome—we had lots of questions that the staff was great about answering and giving us lots of information to read. Even though it was not a place I would have wanted to be—it was a positive experience.

Shortly after the New Year, Emery was back in for his second stay—the entire month of January. During this stay he was placed on a feeding tube to sustain his weight.

His first Easter was spent at Fort Worth Children’s hospital. Our hopes were to be able to get his arrhythmia resolved. The doctors feared they would not be able to get Emery off of the bypass machine. This was Emery’s first heart catheterization. There was good and bad news—good news, the arrhythmia slowed down when he was under anesthetic; bad news the extra pathways causing the arrhythmia was on top of his own “regular” pathways. The doctors recommended doing nothing, and waiting until he got older, to perform the ablation (actual burning of the pathways). They were confident if they moved forward, they would ruin all of his own normal pathways, resulting in a pacemaker for him. We agreed—and brought our almost 5 month old baby boy home with us.

April 19th, 1999—at 6 months old—Emery had his first open heart surgery. The staff was awesome, continuing to reassure us about Emery and the overall progress. I can remember both our cardiologist team and Dr. Teodori sitting for hours with us. Answering every question, easing every fear.

It was everyone’s hope that Emery would start sustaining his own weight after his first surgery. Unfortunately this did not happen and in July of 1999 he has his 2nd surgery at PCH with Dr. Magill and Dr. Silber, placing a G-button for feeds. Shortly after this, Emery started using the out patient services for oral and speech therapy (this is kind of funny today---as he has NO problems speaking!!!)

In February of 2001, things did not seem right. After an echocardiogram of his heart, and a 24 hour monitor of his heart, we knew he was sick. His heart was completely out of synch with its rhythm and we ended up in the ICU immediately. We spent the week there, while the doctors tried to get Emery’s rhythm back in check. I will never forget one of the doctors said “don’t worry we are going to take care of your son.” And there was never a question that they would. The next week Emery under went a heart cath, and it was decided that he would need his 2nd open heart surgery—2½ years old. On March 20, 2001 Dr. Teodori successfully completed Emery’s 2nd open heart surgery. Within 2 days of the surgery, Emery was up and walking. I remember the first steps he took—every nurse in the ICU was surrounding his room, cheering and clapping. I don’t think there was a dry eye, other than Emery’s. Shortly after this surgery he was finally healthy enough to be around other children and he started preschool. Soon the oral/speech therapy stopped!!! YEA!!!

Emery was thriving and doing great!!! We were working on getting his feeding tube out, as he was almost 100% supporting his own weight, by his own oral feeds.

April 16th, 2003, things took another turn for Emery. The time had come where the aortic valve in his heart needed to be replaced. On June 9, 2003, Emery under went the Ross procedure—the surgeon moved his pulmonary valve to the aortic side, and put a donor valve into the pulmonary side. This surgery was done at Los Angeles Children’s Hospital by Dr. Vaughn Starnes. This was a life-changing surgery for Emery!! He was finally able to run and keep up with his friends! He was able to play soccer, and his ultimate dream: learning how to play hockey!!!

For the first time in his life, Emery was no longer on medication!!!!  On October 29th, 2003, Emery’s feeding button was removed—a surgical procedure we were happy to have!

Emery’s heart issues are on going, and we are often reminded that they are not going away…..as we face another Heart Cath on Oct 27th, 2004, 4 days after he turns 6 years old. It seems like a lot to go through for a small “little man.” But he has a heart of a soldier—how ironic his Hero was Pat Tillman, even before the rest of the world “knew” Pat Tillman. Emery has a spirit that is contagious and an example how each of us should live our own lives.

After Emery's heart cauterization, it was diagnosed that Emery was rejected the pulmonary valve, which was replaced in June 2003.  Also, the left side of his heart has permanent thickening, restricting the heart from opening and closing fully. Emery under went his 4th open heart surgery, May 2nd 2005. He had a great recovery and has bounced back to his old self.

What a journey Emery has experienced. We are not sure of the road ahead of us, however we know Emery will survive all of the challenges that life has to offer him. For today—we are blessed with the health he has today, and we will worry about tomorrow when it arrives.