Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect, Hypoplastic Right Heart, Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis. Currently she has had 11 heart surgeries,15 heart caths & over 30 blood transfusions.All of her surgeries have been performed at Lucile Packard Children’s Hospital in California by one of the best surgeons in the world, Dr. Frank Hanley.This blog is dedicated to her and her journey as a survivor with Congenital Heart Disease.Her battle is by no means over but we take one day at a time and rejoice in ALL the good times. Please join us in praying for our sweet girl.

Wednesday, March 30, 2011

Sweet Baby Girl

Callie did great with her cath and it was only a couple of hours. Although, we waited for ever for a room because of no beds available. But, thats okay...Callie is all settled in her room now and relaxing watching her favorite T.V. show, Caillou.

In recovery, everyone kept saying, how sweet Callie was. She was so good, bless her heart. When it was time for her xray, I told her they were going to take her picture...so she smiled while having her xray. She is really adjusting to her stays in the hospital. Laughing at the nurse and her Mama, despite all what she was just put through. What a trooper!

So, her cath went well and I'm waiting to talk with her surgeon, Dr. Hanley. Her cath results were a little confusing because in order to have your Glenn your pressures haveto be a certain number, which anything below 30 is good. Well..her right side has always been perfect to have the Glenn at a pressure of 22. It's always been her left side that has been on the high side of 40, which is way too high to do the Glenn. Today her pressure on the left side was 30 which was odd because her upper left pulmonary vein that had the stent placed in it last time, once was again narrowed off with little blood flow. So, her pressure on that left side really should be on the high side with a pulmonary vein looking like that plus having that lower left vein being compressed! Her pressures right now, would be ideal to do the Glenn, but the actually circumstances of her heart are not ideal to do the Glenn. I know it is a lot to understand, especially if you haven't lived it. But, I try my best to explain everything in the simplest terms possible.

Long story short, I haveto wait to talk with Dr. Hanley to see what he thinks about everything. I'm hoping I will get to speak with him early tomorrow....fingers and toes crossed!

Thanks for all the prayers, she is most certainly a miracle and continues to beat the odds. I am so blessed to have her as a daughter.

Will update as soon as I can tomorrow. Callie has a lung perfusion scan scheduled and then after that she is being discharged. So, it might be later in the day before I get time to update.

Cath started

Callie was taken back about an hour or so ago. She was nice an loopy from the medicine they gave her before the cath to calm her. She was giggling up a storm, it was hilarious!

Please continue to pray all goes well and the news we recieve is positive.

Will update as soon as I can!

Monday, March 28, 2011

A Long Day...

Callie and I made it to California, but it sure has been a long day! We almost missed our connecting flight in Houston, due to our plane leaving Jacksonville late:/ Callie was a superstar on the flight:)

We arrived in SFO with no place to go because a room still wasn't available at RMH and the Housing Dept. that gets you in a Hotel, never returned my phone call!! Very stressful situation, thankfully Callie's social worker at the Hospital helped to book us a Hotel.

So, we are now in a Hotel and praying a room opens up at RMH very soon! Callie has pre-op tomorrow at around 12pm California time. Her cath is currently scheduled for 11am on Wednesday but that is subject to change, we will know for sure tomorrow after pre-op what time it will be.

Please continue to keep Miss Priss in your prayers. Please pray for me, my stress level seems to be at the max this trip and things just seem to keep mounting up. These trips are never the easiest and anytime things go a little crazy, it really puts me at the edge....especially when Callie and I are 2200 miles away from our family!

Will update tomorrow after pre-op.

Tuesday, March 8, 2011

Growing Up....

Callie is growing up so fast, I can't believe she will be 4 in September! She has been attending a Mommy's Day Out at the Church every Thursday for the past month now. It is from 9-3pm and she just LOVES it:) Her favorite part is all the crafts they do, Callie is very artsy. Everyday, all day, all she wants to do is draw, paint, etc!

We have been enjoying the nice weather here before it gets too hot and taking lots of trips to the park. Callie never wants to leave!

Callie has made a BIG accomplishment, that I am very happy about! She is now potty trained...hooray!!!!

We leave in 3 wks for California, so please continue to keep Callie in your prayers and that good news will come from this trip.

Also, please pray for this little boy, Caleb he is 4 and having open heart surgery next week.