March of Dimes

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.

Team Event
April 25, 2010
White River State Park
Downtown Indianapolis
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.

Love,
Josh, Sarah & Lucy

Music Makes Me Hungry

"I'm having trouble fitting this whole thing in my mouth."

Maraca Player

Lucy practicing for her solo maraca career.

Back Home

We're finally back home. Lucy's morning labwork came back normal, so they discharged her from the hospital. She feels a lot better today and the site around her GJ feeding tube is much less swollen and red, and we can touch it without her yelping out in pain.

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.

We got that rhythm and beat

What an exciting adventure this has been. After 14 hours in the emergency room on Tuesday, Lucy was admitted back to the Heart Center.

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.

Count Toobula

We've been in the emergency room since 4AM this morning with Lucy. Her outpatient procedure to switch her feeding tube yesterday has not gone well and she's been absolutely miserable since.

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.

Mic-Key Button

Lucy had her Mic-Key GJ tube button placed today. It's not the Mickey she had in mind, especially the mouse kind. She is really sore, because they had to stretch the site where her original J Tube was placed, from a size 10 French to a size 16. After the local anesthetic wore off, she let us know exactly how she feels. Yuckie.

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.

Snowsuit

"I can't put my arms down!"

Too Cool

"Are these sunglasses polarized?"

No G-toobies

Unfortunately, we wasted two days in the hospital. The doctors were unable to switch Lucy's tube at our developmental pediatrician's hospital, so we are scheduled to go back to the doctor who originally placed Lucy's J-tube on the 15th. That will be a quick outpatient visit and should only take a couple of hours.

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.

Super Zip

Lucy's friend, Jace Heigele, had open heart surgery today and we hope you will keep him in your thoughts and prayers. He's a strong little guy and is already off of the ventilator and living up to his nickname, Zippy.

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.

G-Tube

Lucy is now in the hospital to get her J-tube switched to a G-tube, into her stomach. We hope it's a short visit. We also have to address her severe reflux and if surgery is the right option to help correct it. We dread putting Lucy through another surgery, but if it's something that she needs, then we have to do what's best. Please keep her in your thoughts this week.