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.

Saturday, December 21, 2013

Sickness:-(

Today is the 1st "good" day Callie has had since Dec. 9th...she came down with that cold and it just consumed her !!! The cold triggered her vomiting syndrome, so not only has she had a horrible cough, she had to deal with vomiting every 2 seconds. Finally today she hasn't coughed her head off and only vomited once. Praise the Lord, it has been rough the past couple of weeks. She has been to school since Dec. 6th and now she is on Christmas Break so hopefully we can start the New Year off fresh and sickness free.

Callie is excited for Christmas but does not like Santa, she will not have anything to do with him. Poor kid is terrified!!!! One day I will get a pic of her and Santa together but not this year ;-)

On other news Callie has been looking very blue here lately, her lips stay pretty blue...please pray her oxygen hasn't dropped too much and we still have some time before traveling back to California.

Merry Christmas :-)

Tuesday, December 10, 2013

Sweet Girl

It has been a while since my last update but as always that is usually good news! As you can see Callie was a cowgirl for Halloween, she is in love with horses right now :-)

She is doing well in school and we stay very busy........I spoke with California about a month ago and we are on the waiting game at this point. They for sure want he oxygen in the 60s before she returns, so they will know for sure she will need a heart surgery they see her next. So, we just wait and I am supposed to call when she is consistently in the 60s. I know most of you are probably like, "Wow, that is scary!" But, not really...she will most certainly be blue but she has been that low in the past..it is just the nature of having a heart kiddo.


So, her next trip with out doubt will be her 9th open heart surgery. I have not checked her oxygen recently and will be doing that soon because her hands and lips are staying fairly blue here lately. My guess she will end up going to CA in Feb/March. We are thankful for the break from surgery and that she continues to beat the odds and thrive despite everything. This past Sept. was 2 yrs since her last 3 open heart surgeries and words cannot describe how grateful we are!

Callie is right now fighting a cold so please pray she will get over it quickly, she has a pretty nasty cough.

I will leave with a few pics and will update soon.......


Sunday, September 29, 2013

Birthday Pics!!








 
Mommy loves you, Callie!!

Sunday, September 15, 2013

One rough weekend:-(

This has been the worst weekend in a while. Callie started vomiting with massive diahrrea late Friday night along with fever:-( The stomach bug has been going around her class for the past 2 weeks, I thought she was doing a great job of avoiding it until now! Saturday morning she seemed better and I thought she was over it since what has been going on in her class was a 24hr. bug but that was short lived, since her body was stressed from that sickness it triggered her vomiting syndrome so now she is on her vomiting kick with no end in sight:-( Please pray for this to stop as quickly as it started! This throws your whole life out of wack, Callie misses school, I miss work and most of all we have to look at our baby miserable.

Our continue prayer is that we can also get her into a smaller class setting in a private school sooner rather than later since sickness triggers her vomiting syndrome, it would be in her best interest to be in the smallest class size to reduce her chances of sickness. The policy for returning to school after illness isn't very strict at her school. So, she has had tons of children in and out of her class sick since school started. We know from experience the smaller class size does tremendously help with illness since in her last school the class size was very small and Callie rarely caught anything there.

On another note, we have people who are continuing to purchase "caringforcallie" bracelets which is awesome and thank you so much! But the question has been what will this money be used for since Callie might not go to California anythime soon?! We usually hold all the money in account so when it is time we have it. But right now, the demand for her to be in a different school setting is so great we will be saving all that in hopes to move her to a private school when the funds provide. And when the time comes to go to California we will have a fundraiser at that point.

Please just pray for body to snap out of this state of vomiting, so we can see this smiling face again.



 
I will also post pics from Callie's Birthday party soon, this pic is actually from her party! Her cake was awesome, birthday post to follow:-)


Wednesday, September 4, 2013

6th Birthday :-)

Look at my sweet 6 year old!! I can't believe it, seems like just yesterday she was this little tiny baby.
Pumpkin, you are everything to your Mommy & Daddy, our world. We couldn't imagine our lives without you. The Lord has blessed us with one extraordinary, beautiful, determined, strong, girl. You never let anything hold you back and stay that way;-) Stay determined, stay hard headed, stay bossy, never back down, Callie you came through so much and the Lord is going to light your way if you let him. Remember what Mommy tells you, "you can always turn to him anytime, anywhere." I can't wait to see all the wonderful things you will achieve as you continue to grow.

HAPPY 6TH BIRTHDAY TUKI!!!! MOMMY & DADDY LOVE YOU!!



Thursday, August 29, 2013

Kindergarten Time!!!!!






 

This big girl started her 1st day of Kindergarten almost 2 weeks ago. I can't believe she is in Kindergarten, time sure does get away from us :-( And to think she will be 6 years old this coming Wednesday!! My baby is just growing up way too fast.

She is adjusting to her new school and I pray that things will all fall into place very soon. But, at the current moment we are hitting a few bumps in the road. Callie has 21 other children in her class and it is improving to be not the best situation for Callie. We are finding she isn't being engaged enough and seeking attention. Seeking attention meaning doing things like saying, she is sick all the time and trying to throw up. As most of you know the vomiting syndrome Callie has is brought on my stress and anxiety so we have to very careful not to bring that on. So at times we are walking a fine line. We were very blessed for her to attend a private school last year for Pre-K and that was an awesome setting for Callie and the teachers were phenomenal with her and student to teacher ratio was very low so she received the attention she needed educational and health wise. I fear she is just not going to get the attention she needs this year in a public school setting and it is breaking this Mommy's heart and stressing me out. This little girl has came so far and she deserves the very best . Unfortunately, we are just not in the financial situation to be able to send her to a private school again this year. I pray daily for the Lord to make a way for Callie to attend a school that is better for her and her needs. He knows the desires of my heart for my sweet girl.
 
Trust in the Lord, and do good; dwell in the land and befriend faithfulness. Delight yourself in the Lord, and he will give you the desires of your heart.
Psalm 37:3-4

Monday, August 19, 2013

Cardiology Visit w/our fav doc :-)

Callie had her 3 month check up with Dr. Lacey about 2 weeks ago. Lets just say, "Callie is doing AWESOME!!" Callie has put on 3lbs. which makes her 34lbs and is about 42.5in. Her oxygen remains basically unchanged, which means she is just adjusting well to her shunt and doesn't seem to be out growning it at this moment. Callie is doing so well, that Dr. Lacey doesn't want to see her back for 6 months!!! Which we are going to miss seeing our "FAV" Doctor all the time, but thankful Callie is doing so great.

 
 
 
 

I will be calling California in the next month or so to give them an update on Miss Bossy Pants!!  Since we are coming up on 1 year since they saw her last and generally they do not like her going over a year without a check up from them. So, we will have to wait and see what they have to say. Callie needs her next surgery which is her Bi-directional Glenn but her surgeon wants her to outgrow the shunt she has before they perform her Glenn, so that is why we are on this waiting game before they will do that surgery. Which will take the break from surgeries and relax in these moments that Callie is doing so great. Praising the Lord all while for all he has done for our little girl and continues to do.
 
 





Friday, August 9, 2013

Cyclic Vomiting & Dr. Perszyk

A couple of weeks back Callie saw Dr. Perszyk for her Cyclic Vomiting Syndrome. Dr. Perszyk is a Multi-specialty doctor and most people know him for his work in genetics. But, he also specializes in this pain in the behind vomiting syndrome Callie has acquired.

One word about him "AWESOME" :-)  I loved him, he was so good with Callie and had so much insight into this syndrome. He started Callie on a new medication on top of the others she is on for this and we will see how this works. He gave us suggestions on how to deal with her everyday anxiety and stress with school, hospital, etc. He was a wealth on information and I am so thankful I followed my gut and took her to see him. I hoping with his help we can pretty much put this to bay for the most part.

The positive part is she has been doing great all summer long with no cycles. So, I am hoping with his pointers and this new medication this school year will be a successful one! Yes, my BABY will start Kindergarten in a little over a week:-( Time goes by in a blink..... she is excited but her Mama is not so excited. LOL

We will have a follow up appointment with him in October to see how she is doing with starting school and all the adjustments.

Stay tuned for the next update from her appointment with Cardiology and our favorite doctor;-)

Off to get Callie from Dance Camp....

Tuesday, July 23, 2013

Where to begin??


Where to begin.....it has been FOREVER since I have posted anything!! I have been slacking:/ Callie had her 1st Dance Recital back in May, she did wonderful and looked gorgeous as always:-) She can't get enough of the dancing, she did a Dance Camp a couple of weeks ago and will do another one in August.




Callie's new "LOVE" is also horses!! Here she is having her 1st horseback riding lesson, that Nana did as a special surprise for her. She was thrilled and would have sat on that horse all day long. Not sure the horse even felt her back there, she is so tiny and light;-) lol



And we can't forget the big graduation, Callie graduation from Pre-K in June. She will started Kindergarten in August and is so exicited she just about can't stand it.







 Health wise Callie is doing great. From Jan till the end of May she battled with recurring sinus infections which eventually started triggering her vomiting syndrome:-/ Which let me just say, "IT WAS MISERABLE!!" She would get a sinus infection then start vomiting. As most of you know, Callie suffers from Cyclic Vomting Syndrome that is brought on by stress and usually she doesn't have any issues with it unless she is in the hospital because being in the hospital is a stressor for her. But, apparently now sinus infections are also a trigger for her body. So, we have her back on preventive medication for the vomiting and have an appointment with a Specialist that deals with this. Since being out of school though she has not had one sinus infection or vomiting spell:-) YAY!!

In August she will see cardiology for a check up before school starts and at that point we will discuss Callie's next trip to CA. Which if she keeps doing this good, with unchanged oxygen levels then we shouldn't have to got till January. So we shall see...will update after her cardiology appoinment in August. Hope everyone is enjoying their summer!!

Saturday, February 16, 2013

All smiles:)

 
This was at the Ultra Marathon last weekend to raise money for our hospital here. Callie was one of the many faces for this event this year. She was recognized on stage and given a medal with her name engraved on it.
 

                                    Callie on stage receiving her medal :)

       
                   This was Valentines Day at Callie's school.


                                              Callie and her sweet teacher:)

In other news, Callie has 2 teeth coming in behind her baby teeth and those 2 baby teeth are very loose. So, she should be loosing at least one tooth very soon:) Will post pics when that happens;)



 


Saturday, February 2, 2013

All Better:)

I am happy to report Callie is all better and has fully recovered for her fevers, sinus infection, etc. She is going well:) Praise the Lord.

We are continuing to be real careful right now when we are out and about because of flu season but hope in the next few weeks the flu will start to die down some more.

Ready to get back into the swing of things and just enjoy watching Callie grow.

And...........................

IT                                       IS



February Is Heart Awareness Month

Each year, 1 out of every 120 babies in the United States, and 1 million babies worldwide, is born with some type of heart defect, making congenital heart defect the most common type of birth defect in children.

More children die from Congenital Heart Defects than all the childhood cancers combined!

Join me in spreading awareness this month in honor of all the children who have lost their battle with CHD and who are currently fighting CHD. Children like Miss Callie Ann:)


AND...................

8 open heart surgeries


13 heart catherizations


1 gtube surgery


30+ blood transfusions



 
Countless hospital stays, blood draws, IVs, 50+ Echos & EKGs and countless other procedures no child should ever have to experience.
 
 
BUT.......Callie has, our little fighter faces CHD everyday and is a miracle who is proud of each one of her scars.
 
AND...Thanks to this man right here, Callie is a vibrant, hilarious, brave and thriving 5 year old who is currently awaiting her 9th open heart surgery!
 
 

Wednesday, January 23, 2013

This past week...

As I posted before, Callie has been struggling with fevers since last Tuesday. We made it home on Friday morning, where she continued to spike fevers and was just not doing well at all. On Saturday evening her fevers took a turn for the worst, hitting 104.5. Scary!!!!! I took her to the ER where they tested her for the Flu/RSV and checked her white blood cell count. She was negative for both Flu & RSV and her white blood cell count was totally normal just like when they did blood work on her in CA. They admitted her overnight for observation since her fevers were so high.

In the hospital she continued to spike fevers all night. She received two IV rounds of antibiotic and was looking better the next morning. She was discharged that afternoon and sent home on oral antbiotic. Callie continued to spike fevers into Tuesday and so far has been fever free today. So, where are these fevers coming from you might ask?! Cardiology here and the docs in CA, all think it is sinus related. They think when Callie went in for her heart cath her sinus infection was not fully cleared up and from being intubated and everything it irritated and stirred that bacteria up in there. She also had fluid behind her ears on top of them being red and a nasty cough which is a combination of the normal cough she gets with her sinus infection and then a cough from her cath. Her head is basically one BIG infection, poor baby:( She is coughing so hard it is making her so tired, that coughing takes so much out of her. On the bright side, her lungs looked good on the xray, so she is good as far as that goes.

As far as her heart goes, CA wants her BLUE and her oxygen in the 60's before she returns. These symptoms will mean she has outgrown her shunt and then it will be time to do her Glenn procedure. So, we are just taking it month by month and wait for these symptoms to occur. Her surgeon, Dr. Hanley, doesn't not want to do the procedure till she has outgrown this shunt. There is no reason to touch her if she is doing well. I am thankful for a surgeon who always has Callie's best interest at heart and does not rush into things just because it is convenient. Callie's next trip to CA will forsure hold a surgery for her but we are very thankful that it could be 6mths or more before she will need that done. God is good, grateful that his plan is greater than any plan we could ever have for ourselves!

Please continue to pray for Callie's recovery from all this nasty sinus stuff and she can make it thorugh this flu and cold season without catching anything!!!!

Thursday, January 17, 2013

Fevers:(

Callie has been spiking fevers for the past 24 hrs. She was discharged earlier yesterday morning and then by 230pm she had spiked a fever. They had her return to the hospital that same evening to be admitted. We got there around 630pm, they took some blood to check her white blood cell count and to send cultures. Her white blood cell count came back fine so they allowed her to go back to hotel and as of this afternoon her cultures still have not grown anything. With that being said, we were back at the hospital this morning because she ran a fever all night:( They saw her in clinic to just recheck her. Her right ear was apparently very red. So, the thought is that might be why she has been spiking a fever. She issued Callie antibiotics and sent her on her way. To back track, Callie can only take Tylenol because she is on  a blood thinner and she doesn't respond to it. So, that was another reason I was having such a hard time getting rid of her fever. We have backed off on her blood thinner some so we can give her Motrin instead of Tylenol. She had Motrin earlier today and after about an hour her fever was gone. But, just in the past hour she has spiked another one.

On top of everything, Callie's cyclic vomiting syndrome has started back full force. Needless to say, she is vomiting A LOT:(

Thank you to everyone who is praying for Callie and for everyone who has called or texted to check in on her . I apologize if I haven't responded to everyone. I am exhausted and running on very little sleep. So ready to be home. We hope to make it home Friday sometime.

Tuesday, January 15, 2013

A Long Wait In Recovery!!

Callie spent over 5 hrs. in recovery waiting for a bed up on the 3rd floor:/ Finally by 930pm we got up to the room. Callie's cath went great, no complications and her results were the best they could have asked for:)

As for surgery, the word right now is that she will not be having surgery this trip. They want to give her some more time. Her pressures were perfect to proceed with her Glenn procedure but the surgeon feels like it would be better to wait a little bit. The hope is we won't have to come back for about 6mths but if her oxygen dips before then, we will be back sooner.

Callie is resting right now, watching "Tangled" and we hope to get some rest tonight. Not so sure how much rest we will get but we will try;)

Thank you for all the prayers, the results are promising and when the time is right, Callie will get her Glenn:)

We hope to fly home on Wednesday sometime! YAY!

Monday, January 14, 2013

13th heart cath started......

My brave girl was ready for this heart cath this morning. She kept asking me while I was getting ready, "Mama, is it time to go yet?" She was a trooper the whole way to the OR. Her strength is amazing!!!
My prayer today is that all goes well and whatever is best for Callie will be done. We know the Lord is with her every step of the way and she is in the best hands possible.

I will update as soon as I can. As of right now, they are still in there looking at everything, they have been at it for almost 2hrs. now. It could be as long as 6hrs, so just trying to be patient :/ Thank you for all the prayers and words of encouragement. Keep praying, Callie can never have enough prayer warriors:) 



Friday, January 11, 2013

Hello California

Callie and I arrived late last night in CA, our plane was delayed a few times so we arrived later then anticipated. But, the flight was good and everything went well.
Callie had her pre-op today and all went well. We were in and out pretty fast, since they know Callie and we are no stranger to all this. The docs were so excited to see Callie and thought she looked great. Callie gave them a big hug...if my daughter has to go through all of this, I am glad she is somewhere that cares so much for her. So, now we wait for Monday. Callie is scheduled for 1115 so it will be evening time for those of you on the east coast before Callie is done. I will update as soon as she is done.
                   What better way to end the day than eating cupcakes for dinner:)