Lisa B. - Quilt Finished in 2008
Born: March 3, 2003
Illness: Anomalous Left Coronary Artery From the Pulmonary Artery~ALCAPA, Mitral Valve Implant, Middle Aortic Syndrome, Femoral Occlusion, 2 strokes, 3 Open Heart Surgeries
A Thank You From Lisa's Family!
July 14, 2008
(Lisa and David B. are siblings, their thank you notes will be the same as their quilts were mailed at the same time.)
It has been a truly long, emotional day around here (long story) and the quilts could not have come at a better time! Thank you from the bottom of our hearts David and Lisa LOVED them!! Lisa's is so much like her and matches her bedroom BEAUTIFULLY! She will most likely be going in the hospital for a week very shortly (They thought it was going to be today actually and we dodged the bullet) so I know this will be going with us! We have read her the books repeatedly this afternoon!
As for David, he pulled his out and walked around with his wrapped around his shoulders saying he was the king! Too sweet! He LOVED it!!!
Thank you again for making two of our children so very happy!!!
Blessings,
Judy, Lisa and David
Lisa B.'s Story
Written by Lisa's mom in February 2008
Lisa is our fourth child and her story is truly a testament to the power of God and the miracles He has given to our family. If it were not for His mercies our precious daughter would be living in heaven with God instead of blessing our lives daily with her sweet, tender heart.
Lisa was born March 3, 2003 and it wasn’t until she was 14 days old that she was diagnosed with a rare congenital heart defect known as ALCAPA. The coronary artery grew from her pulmonary artery, instead of her aorta. I had postpartum complications and had been discharged from the hospital just the day before, so when I thought something didn't seem "quite right" with Lisa both my husband and my Mom-in-law thought I was just exhausted. I insisted on taking her to the emergency room where they finally examined her and discovered she was in heart failure and that had we waited until the morning to have her examined as her pediatrician suggested, she would have died. Emergency surgery was required and the local pediatric cardiologist was out of town so we were rushed to UNC-CH for immediate repair on March 18, 2003. Although they assured us she was improving, her Dad and I were not convinced and after we had transferred back to our local hospital it became evident she was dying. It was indeed a blessing that we had originally been sent to Chapel Hill, for while our local doctor would most likely have been able to repair the ALCAPA defect, mitral valve surgery in a newborn is extremely rare and complicated. If we had not traveled to Chapel Hill, it might never have occurred to us to take her elsewhere for additional surgery! The distinct feeling they were not qualified in Charlotte to perform this second surgery had me searching the internet for a facility anywhere that had more experience and success with mitral valve surgery in such a tiny infant.
Wanting the best care in the country for her we narrowed our search to Philadelphia (#1) and Boston (#2) the two top rated pediatric cardiac facilities in the United States. As God would have it, the physician that is now Lisa's local cardiologist has a wife who was born with CHD's and she had 2 heart-lung transplants at Childrens Hospital of Philadelphia (CHOP). Her first transplants were unsuccessful; however, the second time gave her back the life she had prayed for. It was not chance that, Craig Greene, the local cardiologist, became Lisa's primary doctor while she was hospitalized. Although he rarely made hospital visits, he was the doctor who visited her the most here in Charlotte. There were pediatric nurses on the floor who didn't even know who he was, he so rarely came to the hospital!
Lisa and I were sent by air ambulance in a LEAR jet to Philadelphia on April 12, 2003 where Pete was waiting for us already. We had to wait for Tom Spray (the best surgeon in the USA!) to return from an out of the country trip. This gave Lisa time to gather strength after our long journey. He repaired her mitral valve (and her Atrial Septal Defect~ASD) on April 16, 2003 and within days of the surgery Lisa was sitting on our laps, smiling.
We returned home to Charlotte after being away from our other 3 children for 2 months. Our sons, Christian (now 17) and David (13) and our oldest daughter, Rachel (9), were overjoyed to have us back home with their precious baby sister. We, of course, were delighted to be here!
On June 2, 2003 a feeding tube was placed in her tummy due to poor weight gain and severe reflux. July 30, 2003 it was converted to a MIC-KEY and we praised God for the ability to know she was receiving the nutrients and medications she needed.
She required round the clock nursing care with medicines administered at least every 3 hours and tube feedings which ran from bedtime until 4 a.m. This was an exhausting schedule which lasted through October,2004; however, God provided the strength to endure. We considered it a labor of love.
Lisa continued to thrive and improve until the day in May 2004 when during a routine office visit, her cardiologist discovered the leak in her valve had increased dramatically and he felt she needed to be reevaluated in Philadelphia. We were told June 15, 2004 she needed surgery within 3 weeks. That was performed on July 9, 2004. They had hoped to repair the valve once again; however, she required a mitral valve implant to replace her damaged mitral valve and papillary muscles.
Due to the mitral valve implant Lisa will be on coumadin for the remainder of her life. She has pulmonary stenosis due to the original ALCAPA repair. She also suffered 2 strokes, one on the left side of her brain and one on the right side of her brain. These most likely occurred during the first surgery at UNC-CH when her blood pressure went sky high and they had to leave her chest open for 5 LONG days, due to the excessive swelling!
She continues to improve on her eating abilities and we have not fed her daily through her feeding tube since October 2004, PRAISE GOD! The tube has been used on several occasions to administer fluids to hydrate, preventing hospitalization. The best part is being able to administer all of her cardiac medications and knowing she received them! We also have been able to not administer medications in the middle of the night and that has been incredible! Looking at Lisa you would never know she had been sick a day in her life and she is incredibly intelligent, which is another miracle after having so many heart surgeries! She is bright, funny, strong minded and just a delight to know!
