Learn About Callie's Journey with CHD

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Callie was born with an extremly rare, complex congenital heart defect.She has Pulmonary Atresia with an Intact Ventricular Septum, MAPCA’s, Pulmonary vein stenosis in her upper left vein & Hypoplastic Right Heart Syndrome.Currently she has had 8 heart surgeries,13 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.Callie is currently awaiting her 9th open heart surgery. Please join us in praying for our sweet girl.

Saturday, February 22, 2014

A month later...


Exactly 1 month ago this was how we were looking at our sweet girl, just hours after her 9th heart surgery.


           And this is my view today, crazy hair and all :-) 


Callie is doing awesome, her appetite is picking up and soon she will be returning back to school. Looking back on the past month, everything happened so fast and sometimes I think it is better that way. Your mind doesn't have time to go over all the "what if's" of all what surrounds raising a child with CHD. While Callie will be up for another surgery in about 2 yrs. we don't worry about the future. She is healthy and thriving now, which is what ultimately matters!! Having Callie has taught me a whole different way at looking at life and what is most important. We live in the now because nothing is promised in the future. I look at her and am in amazement at her life and what a blessing she is. Callie is my one forever reminder of God's constant provision in her life and ours. Knowing his plan for her is greater than we can ever dream.

Friday, January 31, 2014

Happy to be Home


 
 
 
 
Haven't had much time to update, everything just seemed to happen in a blink of an eye this go around! Callie was discharged on Wednesday morning, exactly 1 week after her 9th heart surgery. So, we headed home early Thursday morning.
 
It seems like just yesterday we were flying out there and now we are already home. We are so thankful for her smooth and speedy recovery. Thank you to everyone who supported us and prayed for our little girl....she is such a miracle and we are blessed to be her Mom & Dad.
 
 

Tuesday, January 28, 2014

Busy Day


Callie moved from the CVICU to 3 West which is the step down unit. She had all her lines removed yesterday and not only has one IV for access in case we need it. She is back on all her oral home medications. Her blood pressure is still running a little high but seems to slowly be improving. Her chest tubes continue to drain which is the main thing keeping us in the hospital. You never can tell how long a chest tube might drain but we prayer not much longer. She is having some pain here and there but that is to be expected.




Here is Callie and 1 of her nurses from the CVICU, this was the 1st time Callie had been out of the bed since her surgery....they were showing off their tattoos. Callie has been giving them to all her nurses, including Mommy and Daddy! Today, we were able to get Callie to the playroom in the afternoon and evening so tonight she is pretty tired. Tomorrow we hope to get her over to the school in the hospital here just to keep her active and learning as much as she can ;-)


Sunday, January 26, 2014

Amazing


Think this picture says it all!

Callie is doing awesome to be just 3 days post op. The doctors are so pleased with her recovery especially since she got a late start off the ventilator compared to most glenn patients. She spent a whole extra day on the ventilator rather than getting off in a matter of hours like most patients. Callie's Glenn procedure was a very unique procedure it was not performed the conventional way and we are so thankful for surgeon who was able to successfully perform this surgery despite Callie's complex little heart. Dr. Hanley will never know how thankful we are for him and what a special place he holds in our hearts. 

Callie had some lines removed today and is back on all her medication from home, she has started back on her night feeds and she is only wearing oxygen here and there in hopes to help her heal faster. The oxygen isn't a requirement but the doctors believe that in glenn patients it help their recovery if they wear it as their healing. So, we try our best to keep it on her even though she hate it :-/ Callie still has her chest tubes and we are praying that they will stop draining so she can get those out ASAP. Her blood pressure is high right now so we are working to get that under control. So, the 2 main prayer requests are for her blood pressure issue to resolve and the chest tube drainage to dramatically slow down. At this point those are really the only things keeping her from being discharge.

I amazed when I look at her and just how resilient she is, the child seems to rock surgeries like a champ! She has more strength and determination than really anybody I know. I am thankful the Lord has allowed me to be a Mommy to such a special little girl. Again, thank you for the continued prayers, for all the financial contributions it has helped us out in ways that you can only imagine. 

Also, we finally got a room in the Ronald McDonald House as of yesterday. Praise the Lord! It feel like we would never get in...this is a huge blessing. 

I know I haven't been on top of my updates but I am trying. Callie has been very demanding this go around and she is wearing me out ;-) 

Friday, January 24, 2014

Holding Steady

Today was a pretty good day. She is still intubated, they want to give her more time to rest and all the work she had done to settled and make sure it is healing before they extubate. Basically, they are just being extra careful with her. Her lungs look good on x-ray, her blood gases are good. Her blood pressure has been a little crazy and it has been a balancing act all day! She was a little wild earlier today but they seem to have her sedation under better control this evening :-)

Tomorrow morning sometime they will try and extubate her and please pray that all goes well and there is no complications. She is doing well for having had such a big surgery but she has watchful eyes on her due to her complexity and passed issues.

Until tomorrow, I will leave with this pic....



Thursday, January 23, 2014

Quiet Night

Callie did well with surgery, they did have to put her on bypass for 1 hr. due to calcification she had, it was so thick that Dr. Hanley actually had to get drills to drill through it. But, praise the Lord she tolerated bypass fine and had no issues coming off. Overall, her surgery was a success and once again we are so thankful such a talented surgeon!

Right now, they are just letting her rest....her lungs are a little irritated from such an intense surgery. The hope as of right now, is to get the breathing tube out early in the morning. With the Glenn they like to get them off the ventilator as soon as they can but in Callie's she is not typical and very complex so they have to tread lightly. Just to ensure her safety and a good recovery. 

I am praying for a quiet night and that her lungs make some good improvement over night so she is ready to get that breathing tube out in the morning :-)

Thank you for all your prayers, he is hearing them and we couldn't ask for anything better right now. Everything is heading in the right direction. We are going to try and get some rest tonight, well she is knocked so we can be prepared for her "wild" self when they extubate possibly in the morning.


Wednesday, January 22, 2014

Ready To Roll


This was all of us this morning before she went back. Despite saying, she doesn't want to have her surgery or her favorite line, "Can't we do it next week?" She was happy and being such a brave girl.


They took her back around 830 CA time and they are still putting lines in etc. So it will probably be closer to 11am before they actually start and from there it will be 6-8 hours.

Praying for a smooth, successful surgery. My Mommy heart is scared but know she is in the best hands, please Lord, watch over my baby!