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.

Sunday, January 29, 2012

1 year....

We arrived home this past Tuesday and finally heard from Callie's surgeon, Dr. Hanley on Wednesday afternoon. Are you ready for this?? Callie doesn't haveto go back for 1 YEAR!!!!! We were shocked to hear those words, since 3mths. of age she has been traveling to California every 4-6mths.

Dr. Hanley said, he was happy with Callie's numbers and if she didn't have such a complex heart defect then he would proceed with Glenn. But, given Callie's situation he believes it is best to leave her and allow her more time to grow and then next January check her pressures again. Since Callie doesn't really grow that fast, he believes coming back in 6mths would be a waste of trip. Callie is stable and doing great with the shunt he put in back in August, this past cath did show the upper left pulmonary vein was pretty much closed off again even though he surgically fixed it last time. Unfortunately, it is pretty much a given that it is going to be fully closed off our next trip which Dr. Hanley said, isn't the ideal situation but he can work with it;) (he is so awesome!!) So, the only reason we would haveto return to CA sooner than a year would be if Callie's oxygen starts to drop and her stats stay low for long periods of time, Dr. Hanley said. This would probably mean she is out growing her shunt. Which there is a strong possibilty this could happen but only time will tell. If she does out grow it before a year the she would have her Glenn at that point.

We are so exicited just be home and know there are no trips planned back for a while. It is an awesome feeling:) You never know what is around the corner....nobody could have predicted Callie would have had 3 heart surgeries last August all in a matter of days of each other, just like it couldn't have been predicted that she wouldn't have surgery this trip and that her numbers look so good and that her aorta situation is a million times better now. Sometimes it can be rough all the ups and down we go through on this journey, but no matter good or bad....we just have to hang on and roll with what life throws at us;)

Friday, January 20, 2012

Surgery OR No Surgery????

We recieved our answer about surgery a few hours ago. Dr. Hanley said, No surgery right now!! He was happy with most of Callie's results from her cath but wants her pressures to be a little lower. So, he is hoping by giving her a little time that it will come down from 2.8 and get closer to 2.0.

So, when is our next trip out here, you might ask!??! Probably in 6mths or sooner. This is yet another answer we are waiting on, he is supposed to call us on Monday to discuss with us Callie's results from the cath and tell us when he wants her back.

I think at this point we are a little thrown off, overwhelmed but happy she doesn't haveto go through another surgery at this time. Nobody wants to see their child go through what we have had to watch our child go through and you can't possibily understand until you have experienced it. With that said, we were hoping for Callie to get this surgery done and over with! So, she and us as a family could experience a stretch of normal life lasting more than 6mths and give her a chance to just enjoy being a child and not have to put her through this stress every so many months. Uprooting our lives every so many months has been hard, never knowing what to expect when we get out here.....we fear for Callie's life and whats ahead for her, we struggle to keep things going back at home while being in CA but this is our lives! And as hard as it can be at times and all the ups and downs we are handed, I would not change it for anything because we have the most precious, silly, hard headed, beautiful little girl and she is worth every bit of it. We love you Callie Ann and we will continue to do whatver it takes to get your little heart mended for good and one day all you go through will be a distance memory but a huge part of you at the same time. We can't wait to see the awesome things God has in store for your future!

"I will go before you and make the crooked places straight"
Isaiah 45:2)

Sorry for rambling but thanks for stopping by and checking on Callie:) Just needed to vent a bit;) I will continue to update as we figure out what is next. We hope to be home sometime next week, we are in the process of getting plane tickets figured out.

Wednesday, January 18, 2012

The waiting game....

We thought we would have an answer from Callie's surgeon, Dr. Hanley by now...but no such luck!!! We were very eager to get out of the hospital today after a sleepless night. Callie had to have a lung perfusion scan before she could get discharged, it took forever for them to come get her for the scan so Callie wasn't discharged until 415pm!!! Better than another night in the hospital.

She is exhausted, feel asleep after dinner and has been asleep since. They did switch Callie's blood pressure medicine to every 12hrs!! YAY! So, no more every 6hrs:)

This is the plan as this afternoon, we are hanging around and keeping her surgery date of Monday for now. When Dr. Hanley finally does get all the info from Callie's cath (which from what we are told won't be till Sat. or Sun) we will hear from someone at that point, as to what he's exact answer is. The cardiac team did discuss her in conference this morning but without Dr. Hanley there it is all irrelevant. We will more than likely find out Sunday night the for sure answer!

Please pray the Lord gives Dr. Hanley the knowledge he needs to make the best possible decision for Callie. Will update as soon as we find out the answer!

"I wanna go home"

Callie did very well with her cath. She was in the cath lab from 1130am to 530pm, Callie is such a unique patient;) She always has the longest cath you can possibily dream of! LOL From the moment we arrived till she was put to sleep and then when she came out of the heart cath, all she has said is, "I wanna go home!!" Poor baby:( But, she is a lot more happier at the current moment and watching her favorite movies. She is spending overnight in the hospital and will be discharged tomorrow.

I know everyone wants to know, Is she having her Glenn?? So, that brings me to the result of her cath. As we all know, Callie is very complex so it is a challenge to explain every detail, so as always I will do my best and feel free to ask any questions;)

Let me start with, Callie is probably NOT going to have her Glenn at this moment.Her pressure that they go off of to determine whether or not she can have the Glenn is borderline to high. The perfect number is 2.0 and Callie's is 2.8, the main reason is because Callie's main central shunt she had placed back in August is a BIG shunt for her and her lungs are getting TONS of blood flow to her lungs which in returns makes her pressure high! They think if she would grow and put on some weight and more or less grown into her shunt then that pressure could possibily come down. BUT, Callie has a major thing working against her in the weight gaining department the narrowing in her aorta which is actually better and there was nothing that could be done to make it better in the cath lab, so they just left it alone is putting extra stress on her heart which it turns makes her heart work harder and therefore she burns twice as many calories and can't gain weight. Callie has been 25lbs since July!!! All this being said is from the cath doctor. We are supposed to hear the finally word from her surgeon tomorrow about surgery and the future plans for Callie.

The results aren't exactly as we hoped but the Lord's timing isn't always our timing;) Which is hard sometimes to accept. Tonight, we are just thankful she did well and that she is doing so well despite everything going on in her little body.

We hope to be out of here and back to the Ronald McDonald House as soon as we can tomorrow. I will update when we find out the final word from her surgeon.

Thank you for all the prayers and for everyone who called and text to check on Miss Priss, it means a lot and we love all of you.

Tuesday, January 17, 2012

Heart cath tomorrow.....

So, tomorrow is Callie's heart cath. Everything is riding on the results of this cath to determine whether or not she can have her Glenn she so desperately needs.

Please everyone pray for a safe, easy cath with GREAT results. Callie's cath is scheduled for 930am our time. So, everyone back at home that 1230pm is your time. Please take a minute and stop to pray for Callie around then, we need all the prayer warriors we can get, praying for our little girl.

I will update as much as I can tomorrow to keep everyone up to speed.

Also, I have been asked by a few people if it is okay for them to share Callie's story and the blog....100% YES;) Please feel free to share, it never hurts to have an extra person praying;) Also, Callie's story helps spread Congenital Heart Defect awareness to people!

Saturday, January 14, 2012

Quick Update

Pre-op went well today. In fact, Callie did so great at the end she was rewarded with a babydoll by the echo tech:) She is such a trooper and growing up so fast. All Callie had to have today was an echo and ekg. They decided not to do blood work because Callie's veins are shot and it wasn't necessary to get a chest xray. So, today was pretty easy.

After the echo and ekg we were given a room to talk with the physicians assistant, Heidi. She had saved Callie a yummy cupcake from "Sprinkles"! She has been seeing Callie since we started coming here back in 2007. It may suck to be here but its nice to be welcomed by such wonderful, caring people!

Callie is all set for Tuesday, we haveto be at the hospital at 8am and her cath is scheduled for 930am.

We are going to relax and enjoy the weekend with Callie:) Hope everyone has a great weekend!

Thanks for checking in.

Friday, January 13, 2012

Day of Travel...

We have arrived in California:) We had 2 great flights, Callie was awesome on both flights. We were able to get into The Ronald McDonald House which I am truly thankful. If you come here enough, you know getting in this RMH can be a challenge at times!

Tomorrow is pre-op day! A day filled with echo, ekg, chest xray, blood work not the most exicitng day but hopefully we can make it short and sweet.

Callie is fully aware of why she is here this trip and it breaks my heart. She will tell me, "Mommy, I dont wana have another surgery!" What do you say to that?! But, we talk about it and how we are going to do fun things while we are here also and talk about her other heart friends who are having surgery. Callie finds comfort in the fact she is not the only one and I'm happy that helps her feel a little bit better about what she is fixing to have to go through once again.

One another thing I thought was kinda of funny, that happened in the airport at Jax today. We were just sitting killing some time and this man kept walking by us and finally stopped and asked, "Is she the little girl with all the heart problems?" Will said, yes! The man had seen her on the news a few times and I think he was kind of amazed to see her in person. It is hard to grasp at times that this little 25lb, 4yr old has had so many surgeries but looks so AWESOME she is truly amazing and the Lord gets all the glory for what a miracle she is.

With that said, many of you know we almost lost Callie twice back in August due to 2 aorta bleeds which resulted in 2 emergent open heart surgeries. I have never been so nervous to start this process again, at the same time I am very hopeful that Callie WILL GET HER GLENN and she will have a little break for a couple of years.

Please join us in praying for a great heart cath with awesome results that lead to Callie receiving her Glenn. With continue prayers that the Lord will continue to prepare her little body for this upcoming surgery and that she does OUTSTANDING:)

"For where two or three are gathered together in my name, there am I in the midst of them."Matthew 18:20

FYI- Callie's heart cath will be this coming Tuesday at 930am. That time could be changed but right now thats where we stand.

Thanks for checking in, will update tomorrow! Thank you again for all the support we are receiving from everyone, thank you just doesn't begin to describe what it means to us!( I know I say it ALL the time but we are so blessed to have so many great family and friends)