To Stanford We Go

At the end of March, Brad and I headed up to Palo Alto for a series of medical appointments. We met with the fetal coordinator, had a full anatomy ultrasound, had a fetal ECHO, met with two fetal cardiologists, met with Dr. Frank Hanley (our surgeon), met with our social worker, met with the chief of neonatology, and met with a high risk Obstetrician. Let me just say that Stanford is an amazing place! All of these professionals knew about our little guy and everyone assured us how they will work collectively to give our guy the best shot at a full repair. The overwhelming feeling Brad and I received on this visit is our little guy is a "normal" patient to them. Up until this point, almost every medical professional we encountered had never seen this kind of a heart defect. His super rare heart defect (1 in 500,000) is something they deal with very often at LPCH and is almost routine for the teams up there. Dr. Hanley informed us that our little guy's surgery would be a difficulty level 6 out of 10 for him personally and that he believes there is a 99% chance our little guy will survive the surgery. Dr. Hanley's surgical plan is to physically switch the pulmonary artery and the aorta by cutting above the valves. Then he will use the large VSD (hole) to create a Bi-ventricular system and close off the hole. If all goes well our little guy should have normal red/blue blood circulation with some abnormal plumbing. His overall prognosis pending a successful surgical repair is a normal childhood with lifelong cardiac care. We know that he won't be the star quarterback on the football team and we anticipate the high likelihood that he may have ADHD or other learning disabilities. But from where we started that awful day in January to where we are now is truly amazing.

Although given a choice, Brad and I made the decision that what was best for our little guy is to be born at LPCH and not have the added cardiac stress of being life flighted after being born closer to home in Orange County. The C-section is scheduled for May 20th. We were informed that there will be a Neonatology and Cardiothoracic team in the OR waiting for him. The plan is for him to head straight from the OR to the level IV NICU (Neonatal Intensive Care Unit). Dr. Hanley would like to do his open heart surgery sometime during his first week of life. After his surgery he will most likely spend 7-14 days in the CVICU (CardioVascular Intesive Care Unit) and then probably another week or two in a step down unit.

Although I am scared to death of the days to come, it is a huge relief to be up here in Palo Alto already and have such amazing teams in place waiting for him to make his appearance. The hospital set us up with a temporary apartment within a mile of the hospital. I am currently up here by myself but Brad and the kids head up here this weekend for Mother's Day. The tentative plan is to have the kids stay up here until after their baby brother is born and then head back down to Orange County with their Toto and Papa (my mom and dad) when the little guy has his open heart surgery. Although I miss Molly and Luke terribly, I keep reminding myself that it's just one of the sacrifices we have to make as a family to give our little man the best shot at a good life. Thanks for all of your prayers and I will keep the updates coming...