Here we are at Lucille Packard Children’s Hospital, 1700 miles away from home. How did we get here? It’s been a long road.
Norah was born with Tetralogy of Fallot, a congenital heart disease, that has required ongoing surgical repair especially of her pulmonary arteries. Her first open heart surgery took place at only 5 days old at Children's Hospital of Wisconsin
(CHW) in Milwaukee. Her second open heart surgery was just 4 years later to replace a valve and conduit and attempt to further relieve pressure in her heart due to pulmonary stenosis. In between those two surgeries, there were multiple cardiac catheterizations to perform ballooning, angioplasty and stent placements within the pulmonary arteries especially leading to her left lung. Following a routine cardiac catheterization at 9 months old, Norah suffered a stroke which resulted in long term left-side motor skill deficits.
After her second open heart surgery, her fantastic cardiology team at CHW continued to monitor her situation through cardiac catherization, echocardiograms and experimental medication. We also started following the pioneering efforts in pulmonary reconstruction of Dr. Frank Handley at Lucille Packard Children's Hospital
in Stanford, CA.
After a cardiac catheterization in November 2018 failed to bring any decrease in Norah’s heart pressures, our cardiac team led by Dr. Michelle Frommelt at CHW recommended that Dr. Handley review Norah’s case to see if surgery might be a solution to Norah’s pulmonary stenosis and the resulting high pressure in the right ventricle causing heart damage. Dr. Handley reviewed Norah’s case with his associate Dr. Michael Ma and just before Christmas 2018 Dr. Ma called to discuss Norah’s situation. The procedure that Norah required was one that few in the world attempted ten years ago. However, Stanford had growing success to the degree of performing 30-40 of these surgeries each year, with amazing results (nearly normal pressures!!!), and no loss of life.
After talking with Dr. Ma and much prayerful consideration among our family, we decided that Norah would have the surgery this summer after her 8th grade year and hopefully with enough time to heal before her freshman year at Luther High School
(just what every teenager wants to do during their summer vacation!). The amount of logistical preparation needed was at times overwhelming: working with Ronald McDonald House, Miracle Flights, insurance, employers (FMLA), figuring out what do to with Norah’s 16 year-old sister during our month’s long stay at Stanford, trying to stay healthy, and of course, how much is this going to cost. But what was even more overwhelming to my wife Nikky and me is the generosity of family members, friends, individuals, organizations and our current and past church families. The amount of financial, spiritual, and emotional support and encouragement you have provided is amazing! We thank God for you!
There have been some people that have asked about the opportunity to give online to help offset some of the travel, medical, food and all the other costs that come with Norah’s care and our family being out here so far away from home. If you’d like to help in that way, we greatly appreciate it! But we also equally appreciate your prayers and words of encouragement. They are extremely uplifting!
As I write this, we sit in the Cardio Vascular Intensive Care Unit at Stanford with a 14 year-old girl who has made it through 16.5 hours of successful surgery yesterday, although on ventilator and tubes going in/out everywhere looks as beautiful as ever, and is fighting hard to heal. It's still hard to believe that just two weeks ago we were on the golf course.
I look forward to playing a round of golf with her (or even a few putts would be alright) whenever she feels up to it.
You can also follow our entire story and see updates at Norah's Caring Bridge
"Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go" Joshua 1:9