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 9 heart surgeries,14 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.

Thursday, July 2, 2015

Everyday, Crazy, Life

It has been a while since I have posted, I hope to start posting more regularly again. Callie is doing awesome, I have no complaints! Callie finished up 1st grade in May and is enjoying her summer. She is in the pool every chance she gets :-) She is looking forward to school starting back in August, she misses her friends very much! Callie recently started tumbling and loves it! It is really good for her and pushes her to build her endurance, which needs! It is tough for her sometimes, but she pushes on. 

So, health wise how is Callie? I can honestly say, probably at her best :-) Her heart is stable and she will see her cardiologist at the end of July. From there I will be scheduling her heart catheterization to go to California for Jan. 2016 which is exactly 2 years out from her Glenn procedure. Dr. Hanley wanted her to have a cath 2 years out to see where she stands. Callie next surgery would be her Fontan, 2 years ago when she had her Glenn, she wasn't a candidate for the Fontan.....but we are praying with time she will become one just like she did with the Glenn. Onto her next battle, the vomiting syndrome.....we seem to have a good handle on that. Callie's last episode was back in January, since then we have been able to get it under control with her meds and a very strict lifestyle. It is tough but it beats watching your child vomit for a week straight. Never take for granted just being able to pick up and go out of town or staying out late for a special event with your child. Callie cannot do things like that and it really sucks at times, she has to be in bed before 8pm, going out of town is a big stressor for her, especially if we all aren't together as a family. Just little things you would not think about are a big deal for her. But, the good news it one day she should outgrow it! I just remind myself this is only temporary ;-) 

When you think about 2 years, it seems like a long time but living it, it is like a snap of the fingers! If that makes sense....lol! I say this because this coming Jan. is 2 years since Callie's Glenn, her 9th heart surgery and we will head to California once again. I just can't believe it has been 2 yrs. and once again we will be facing all this all over again. Yes, there is never a day that goes by that I do not worry about her, I am constantly worried. But, being in California really puts it all in your face. Someone, commented to me the other day, that I deserve praise for all we have been through, all the traveling for her surgeries, etc. And this is coming from someone who has a child with CHD and other health complications. Here is how I see it, each and everyone of us has our "normal" or crazy life we live, however, you want to see it ;-) For us, being prepared to travel at a blink of an eye, is our normal/crazy life, I do not even think twice about it anymore... we have adjusted over the past years and it is a journey that God has put us on and there is a reason, it might be tough at times and I always wish that Callie didn't have to go through what she goes through but none of us were promised a life without pain and heartache. But God is with us and he is faithful and good!

Thursday, January 15, 2015

Almost a year later....









Well it has been quite some time since I have updated on here. I can't believe how fast time seems to slip away....Since my last update in February, Callie started 1st grade in August, growing up way too fast!






Then she welcomed her sweet baby cousin, Skylar. Callie loves her more than words describe!

 
 
September 4, 2014

My baby turned 7!!! She had a frozen B-day Party with Elsa and Ponies!!




Multiple Check ups during the year, with Dr. Lacey, Callie's cardiologist who love and adore!



Of course, Callie has to act silly during pictures;-)

Callie is doing very well from a heart standpoint, she is stable and no major changes have occurred in this past year. We are hoping to make it to Jan 2016 and at that point she will need a check up in California.



Christmas!!!!!!



We tried visiting Santa for a Christmas pic, but this was the only pic we achieved, while visiting Santa. Callie has always been afraid of him and we have yet to get a pic with her sitting with him. Maybe when she is 18, we will finally get that pic! LOL!!!

Overall, 2014 was a great year for Callie. She was able to have her Glenn procedure in January, which went so well. We are so thankful that her surgery went off without a hitch and her recovery was awesome. She finished out Kindergarten and had a great summer!
August, she started 1st grade and has been doing just marvelous. I am so proud at how well she is doing despite all the challenges she has faced.

Speaking of challenges, as most of you know, her Cyclic Vomiting Syndrome has been very hard to control for about the past 3 yrs. May 2014 she had her last episode up until December - which was so awesome!!!!! December 12 she started with another episode which was triggered by a cough, the cycle was brutal as always. It ended Dec. 22 and then she turned around and had another one start on Jan 2 that one lasted another week. We have her on maintenance and preventative medications but the key to keeping it under control is lifestyle. Which is very difficult on our family at times. Your just not free to be out and about as much as you would like, it controls you! Callie has to be in bed by 730p every night, no exceptions, she can't get up too early , you can't drag her all over creation running errands, a cold, cough, certain foods, the list goes on and on of her triggers. So right now because she just had 2 episodes back to back, we have to super careful not to trigger another one. Talking about walking on eggshells, it is exhausting and frustrating at times because she misses out on so many things at times.

But, as frustrating as it is, we are thankful for how healthy and stable she is. God has blessed us with countless blessings this past year, his love is awesome! Difficult days, I pray for him to remind me that his plans are perfect, they may not be the plans I have for myself but if I just trust him and follow him, he will provide the best for my family and I.

Thanks for checking in and I hope to be better about updating the blog this year :-)

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....