Wednesday, February 24, 2010
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. They're dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.
You can show your support for Team Lucy Kate by joining the team or by sponsoring Lucy. We encourage you to join the team and help raise money. All proceeds go to the March of Dimes foundation.
Team apparel can be purchased from the team store at Cafe Press.
April 25, 2010
White River State Park
5 miles, 10:00 AM
We appreciate your support for Lucy and others like her by your contribution to this wonderful cause. We thank you from the bottom of our hearts, big and small.
Josh, Sarah & Lucy
Friday, February 19, 2010
Lucy missed all of her dolls and playing in her ExerSaucer. She's yelling at Baby Einstein on the television right now, so she's back to the usual.
Thursday, February 18, 2010
Yesterday, she was dropping her heart rate severely with her normal coughing and choking. At one point, her heart stopped beating for a full six seconds, and several other times dropping in the 40's. Lucy's hobbies include playing with toys, passing gas and scaring her parents to death.
Lucy is still on 13 medications, one of those is Digoxin, a drug that slows the heart and improves cardiac function. Labs were done yesterday to check the level of Digoxin in her blood after her episodes. A safe level is 0.5 to 2.0, Lucy's level was 3.3, which is highly toxic. Still unsure why it is so high, but could have slowly accumulated since August.
The inflammation around Lucy's GJ site has gone down dramatically, but we still have several things to figure out today.
Tuesday, February 16, 2010
She had an X-ray and CT scan to check placement and blood flow. Everything came back okay, she's just in extreme pain from stretching the site to accommodate two ports.
Her pain-med cocktail of Tylenol with codeine, morphine and Motrin appears to have helped ease some of the pain.
Monday, February 15, 2010
Lucy will start to get small amounts of milk back into her tummy, until she can handle full feedings again and we can finally get rid of her feeding pump and be one toobie free.
Sunday, February 7, 2010
Thursday, February 4, 2010
It will take some time to truly know if Lucy requires the Nissen surgery, after we get milk and food back into her belly. She would have a gastric emptying study and an upper G.I. before we would proceed further with any surgery.
But all was not wasted while we were in the hospital. Lucy is now only on 1 liter of oxygen and tolerating it well. We hope to have her off of oxygen and one more toobie free by the end of summer.
Wednesday, February 3, 2010
Stay strong, everyone is cheering for you over here.
You can follow along at his and big sister, L.C.'s blog at lcgrace.blogspot.com.
Tuesday, February 2, 2010
Lucy Kate Hopkins
This is the story of Lucy, delivered 10 weeks premature, weighing only 2lbs. She was born with Downs Syndrome and multiple congenital heart defects, spending 75 days in the NICU. She has underwent two open heart surgeries in August 2009 and June 2010 to repair her Atrioventricular (AV) Canal Defect, Ventricular septal defect, double outlet right ventricle, mitral valve and extra superior vena cava. We hope she touches your heart as much as she has touched ours.
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