Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support, words of hope and encouragement, and most of all - PRAYERS during this time when it matters most.
Our little Elijah Gene was born July 21st at 5:20am. He weighed 7 lbs, 5 ozs, was 20.5 inches long & was absolutely adorable! The day after he was born our nurse heard a heart murmur & it was confirmed by the rounding pediatrician. Heart murmurs are not uncommon in babies & they ran a few screening tests & everything came out fine. We were able to take Elijah home from the hospital the evening of the 22nd. Elijah had his first pediatrician visit at 5 days old & she confirmed the heart murmur. She mentioned it may just be a Ventricular Septal Defect (VSD) - more commonly known as a “hole in the heart” - which often closes on its own by 6 months old. In order to determine the severity, Eli had an echocardiogram (ultrasound) of his heart a week later. We received a call from our pediatrician at 8PM that same night; she confirmed Elijah has a hole in his heart, but also has 3 other defects, for a combination of 4 known as Tetralogy of Fallot (TOF). She told us this would require heart surgery within his first year. Troy and I were shocked; our baby boy seemed perfectly normal and healthy to us. That is how our journey with a son that has a Congenital Heart Defect (CHD) began. Tetralogy of Fallot accounts for 10% of the cases of congenital heart disease. It is the most common cyanotic (blue) heart defect beyond infancy and involves four (Greek tetra = four) anomalies of the structure of the heart:1) A large ventricular septal defect (VSD), or hole, in the septum (muscle wall) which separates the right and left ventricles 2) A narrowing (stenosis) of the outflow tract (infundibular stenosis) from the right ventricle into the pulmonary artery and/or pulmonary valve narrowing. 3) The aorta is enlarged and "overrides," or sits directly above, the ventricular septal defect (VSD). 4) A thickening of the muscle wall of the right ventricle resulting in a right ventricular hypertrophy (thickening). These defects cause oxygen-poor blood to flow out of the heart & into the rest of the body. Infants & children with TOF usually have blue-tinged skin because their blood doesn't carry enough oxygen. Our little Elijah only turns blue around his mouth when he cries & his color returns to normal once he stops crying – for this we are very thankful, as we know other children with TOF are consistently blue and some even experience “tet spells” in which they struggle to breath & may pass out. For those of you who have asked for more detail on this defect, here are two reliable websites you can visit: pted.org (http://pted.org/?id=tetralogyfallot1
) Mayo Clinic (http://www.mayoclinic.com/health/tetralogy-of-fallot/DS00615
UPDATE 11/07/12: Elijah had his Open Heart Surgery to repair his heart on 9/27 and all went very well. He was admitted at 6:30pm to his room in ICU to recover. At 11:20pm, within 30 seconds, he went into Ventricular Tachycardia and coded. He was in cardiac arrest for over an hour, without any pulse. Troy and I were present through the whole code, watching the doctors and nurses perform CPR until his heart surgeon, Dr. Bryant, could make it back to the hospital to open Elijah's chest back up and try to save our son. When Dr. Bryant opened his chest, his heart was dusky/blue and things did not look promising. He was placed on ECMO (a type of heart & lung bypass machine) as a last chance to bring our son back. The surgeon had no idea why Elijah coded, as all things looked good. Elijah was on ECMO for 60 hours and was able to come off of it on the first try. 2 days later he was extubated (taken off the ventilator) successfully. His brain scans were miraculously clear (no bleeding on the brain), his organs all functioned well, great movement of his eyes, fingers, toes, etc. Doctors and nurses were AMAZED and SHOCKED at how well he recovered. He is our little miracle boy, and members of the medical team echo that. We've had a few hurdles to overcome after his code, but he is doing so well. We lived at the U of M Amplatz Children's Hospital for 40 nights before Elijah was discharged on Tuesday, November 6th, 2012. He continues to improve at home!
UPDATE 12/01/2016: It has been determined that it is time for Elijah to have another open heart surgery. He will need to have a pacemaker implanted, his pulmonary valve replaced and kink in his left pulmonary artery fixed. We appreciate all your support throughout this time!
Thanks for your continued prayers throughout this journey,
Kari, Troy & Elijah and Levi