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, December 30, 2012

Antibiotic Round #6


Callie saw her allergist on Thursday and after a lot of discussion of what she has been going through. He decided to change her antibiotic, this is the 6th round of antibiotic! I am happy to report that after only 24hrs. on this antibiotic her cough was totally GONE:) Praise the Lord! So, the talk was if this does work then we might need to look into putting her on antibioitc prophylactically. In other words, she would get a small dose of antibiotic daily to prevent her from getting these recurring sinus infections. There is also blood work pending that will take about another week to come back, we don't really expect much but the docs wanted this done, to ensure we are covering everything. We are so happy to have all the coughing gone and her appetite is picking back up :)


                                                        Callie riding on Christmas Day!

Wednesday, December 26, 2012

Follow up ENT appointment

Callie had her follow up ENT appointment bright and early this morning! BLAH! I hate getting up early. The doc went over her CT results and said her CT did not show anything abnormal and her adenoids were a little enlarged but not by much, he thinks they are a little large just as a result of her having infection for so long up in her sinuses because a few weeks ago they were not enlarged. So, at this point he DOES NOT recommend her having  adenoids out or the sinus surgery, her said all that would be elective surgery that from all the tests the problem does not have anything to do with her sinuses. He also said, that the cough she has does not match the normal so called dry cough you get with a sinus infection. Callie's cough is very wet:/ So, he believes there is something else contributing to all this. But what?? We are not sure yet. They are keeping her on antibiotic permanently till they get to the root of the problem. I am not happy about her staying on antibiotic, it makes me so mad.


With all that, she had allergy testing today. Which will take weeks to get back and tomorrow she has appointment with the Allergy doctor to see if he can offer up any advice on this matter. This is very frustrating and we are so tired of hearing her cough. Please pray for light to be shed on this matter and that we can get her better once and for all. As I said before, this might extend our stay in CA. We still have bracelets for sale to help with all the expenses of the upcoming trip or you can just donate. Every little bit is very helpful and very much appreciated.

Tuesday, December 25, 2012

Happy Birthday, Jesus!

Merry Christmas, Everyone! Callie has had an awesome Christmas and we all have been blessed beyond measure.
Callie is still struggling to get rid of her cough. They can't seem to clear up her sinus infection, she is on her 5th round of antibiotics in just over a month. We have appointment tomorrow with ENT to discuss her issues more. As of right now, the plan is for her to have sinus surgery in CA and also have her adenoids removed. But, we will know more tomorrow. So, please pray that we can clear this cough up, otherwise we might have to delay her cath which would put us in CA longer and she would have her sinus surgery 1st and then a week later or so have her heart cath.

Friday, December 14, 2012

Little update:)

My sweet girl had her Christmas pageant at school today. It was a precious sight to see:) Callie is so exicited about the fact that Jesus' Birthday is Christmas day! She talks about that more than presents. I am so thankful to be able to send Callie to a place that does such a wonderful job of teaching her the love our Savior has for us.









In exactly 1 month from today, Callie will be in the hospital for her 13th heart cath!!The 13th time is just as hard as the 1st, it never gets easier. Please just keep her in prayer over this next month and that come January all will go well.


"Glory to God in the highest, and on earth peace, good will toward men." Luke 2:14

Thursday, December 6, 2012

We have been getting ready for Christmas around here! Callie is so exicited for Christmas, although she is still terrified of Santa!! LOL Callie has been battling her cough again for over 3 weeks now which is a result of another sinus infection. She is on her 3rd week of antibiotic and will remain on them till the 21st. YUCK! I hate her being on so much antibiotic. Monday she will see an ENT to see if we can figure out why she has so many sinus infections and if there is anything we can do to help the problem. As most know, we leave next month for California. Callie will forsure have a heart cath and is schedule for open-heart surgery but there is always a chance it will canceled if things aren't how they want them in order for her to have her next surgery, the bi-directional glenn. I really hope that she won't have a surgery in January, she went through so much back in August 2011 with her 3 open-heart surgeries with in just days of each other that was enough to last all of us FOREVER! But, I try to remember God's timing is perfect. It can be hard at times to keep that in the front of my mind. But, for now, we just continue to be thankful for how awesome she is doing and just take day by day. We have bracelets for sale if you would like to support Callie on her coming trip(see on right side of blog) or you can just donate; every little bit helps no matter the amount. Proceeds will help with things such as traveling expenses, housing, rental car, medications, etc. Please continue to lift Callie up in prayer as her next trip inches closer and closer. I will update again next week and share about Callie's ENT appointment. Pray for answers and solutions. Thank you to everyone who continues to support my sweet girl and our family, each and every one of you have made the past 5 years a little easier for our family and we are so grateful.

Wednesday, November 21, 2012

Simply enjoy:)

Callie is doing well, has another sinus infection that she is currently on back to back antibiotics for but she is GOOD;)Here are some pics from the last couple of months. Callie was in a fashion show for Wolfson Children's Hospital and she was awesome! It was hard to get good pics so there aren't many.
I enjoyed a Thanksgiving Feast with Callie at her school last Friday! Isn't she the cutest pilgrim??
Hope everyone has a wonderful Thanksgiving with family! We are thankful to be home and that Callie is happy and healthy. Thank you, Lord, for your wonderful blessings and miracles you work everyday.

Friday, November 2, 2012

Good times.....

Callie had character day at school about 2 Fridays ago. Callie chose to be Ariel!!
Isn't she ADORABLE?? (I think so) She had a good time with all her friends. They had a pumpkin patch for the kids at school, so each child was able to pick at pumpkin. And in class they had all kinds of activities for that day.
Callie had her 1st visit with the dentist on Halloween. I was so nervous because of her heart and the risk that she faces going to the dentist even with the antibiotics. But, Mommy faced her fears and we made it there!
Happy to report, she has NO CAVITIES:) :) As for later that night we it came to dressing up, Callie decided she was going to be her new FAV character, "Doc Mcstuffins" for those who do not know who she is, LOOK IT UP;) It is a show on Disney and it is about a little girl who is a doctor to her toys that come to life when only she is around! Really cute show!! So here she is
Callie had a blast Trick or Treating, but she did tell us that she did not get enough candy because her bag wasn't full;) Callie isn't big on candy so the half bag she collected will last her the rest of the year! Unless, Mommy eats it;)

Friday, October 12, 2012

3 months...

I have thought a lot about this post and when I should write about our upcoming trip to California. Only in the past week have I started to tell people that Callie will be returning to California in January. It is hard to believe that it has been almost a year since our last trip. Time seems to just go in a flash. I hate that the good moments seem to go faster than the bad:/ Having a child that is part of the CHD community I am reminded pretty much on a daily basis how precious life is and not to take any moment for granted. And this past week was no different.... Precious 4 yr. old Mia who was born with a Congenital heart defect went to be with the Lord this past week. She had a heart transplant as an infant and was on her Make-A-Wish to Disney when she became very ill and was rushed to the hospital. She went it for a heart cath that determined she was in rejection and suffered cardiac arrest and never recovered. Once again I am reminded how special Callie's life is and in a blink of an eye it all could change. I would be lying to say, that I don't worry about her everyday because I do. I worry when she is at school and what could happen to her. I worry at night when she goes to bed that she might not wake up the next morning. It is hard to say all of that but it is the TRUTH. This is her blog http://mcdonaldfam.blogspot.com/ please take a moment to pray for her sweet family.
            
For we walk by faith, not by sight. 2 Corinthians 5:7

At this time 3 months from now Callie will be in California. We will leave Jan. 10. She is schedule for a heart cath and then for open heart surgery 2 days later. There is not much I really have to say about it, other than I wish we were getting on a plane to go on vacation instead of this. Callie is aware this is coming up but we don't talk about it much, as I belive there is no reason to keep discussing the matter, she pretty much fully understands her situation as much as any 5 yr. old can and knows she needs another surgery to help her get better:/ Please be in prayer over the next few months for Callie and her health, for the Lord to prepare her sweet body for what is ahead. Also for us as a family and financially.

There has been bracelets made for Callie that we are selling to help raise some funds for her upcoming trip.
I am going to post a way to pay for them through the blog, if you are interested. As for Callie these days, she is doing awesome and I couldn't be any happier with where she is at with her health. Just plain out THANKFUL!! She is enjoying school and loving her dance class she started a couple of months ago. Always has to be the center of attention and laughs all the time. Wouldn't have it any other way:)

Wednesday, September 26, 2012

Appointments

Look at my baby! At our appointment last week at cardiology, I walked in and glanced up at the wall and thought to myself, "man, that little girl looks familiar!" HAHA! Looking back a second time, realizing it was Callie;) She had some pics taken by Wolfsons back in August for an event coming up called, The Ultra Marathon. So, I guess they decided to use her picture for this. Was very flattered to see her up on that wall, made my heart smile:) So, on to the cardilogy visit......Callie's appointment was AWESOME. She gained 2 lbs. in 3mths and gre 2in which is wonderful! She is now 29lbs. and 40in., such a little toothpick. Her oxygen was great and her echo remains unchanged. Her next appointment will be in Decemeber which will be our last appointment before we head back to California in January. (That will be another post to come about our upcoming trip) Her 5yr. check up went just the same, everyone is beyond pleased with how well she is doing! I will leave you with this pic, this is a pic at 1yr. and then at 5yr. Love my babygirl more than anything in this world!

Sunday, September 16, 2012

Latest & Greatest...

Here are pics of Callie's cake that was done by http://www.loveandsugarkisses.com/ she did an awesome job. I applied Callie through "Icing Smiles Inc." to have a cake created for the birthday. Icing Smiles provides custom celebration cakes for ill children. Callie qualified and they found Love & Sugar Kisses to do the cake. She did an AWESOME cake, it was so pretty.
Thank you so much to Icing Smiles and Love & Sugar Kisses to giving my little girl such a pretty cake for her 5th birthday:) Here are some pics of the birthday girl.
Daddy and his Princess!! Callie had a follow up appointment recently at the pulmonologist and they have concluded that Callie has been experiencing reoccuring sinus infections which has been causing her onging cough. Who would have guessed!!! All her blood work came back fine except for her tetanus antibodies, so she had to go for a tetanus shot and she will haveto do repeat blood work in a month to make sure her tetanus antibodies are holding steady. Which I'm sure they will. She has a cardiology appt. this Wednesday and her 5yr. check up the following week. Thanks for checking in:)

Tuesday, September 4, 2012

5 years old!!!

This silly, beautiful, strong, hard-headed, little girl turned 5 years old today! I still can't believe it has been 5 years since we were looking at this miracle laying in the NICU at Baptist wondering what battles were ahead of her. I can say today, Callie has been through more than most grown adults but she has been so strong and fearless through it all. For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Mommy and Daddy love you sweet girl! Always remember through everything hard and great the Lord is with you and if you just trust him, he will take you some great places:) Happy 5th Birthday, Callie Ann Carver!!!

Wednesday, August 22, 2012

The cutest ballerina ever....

Callie starts today and she couldn't be more excited:) Just thought I would share, how adorable my soon to be 5 yr old is!! Have a great day:)

Wednesday, August 15, 2012

1st Day of VPK

This was Callie's pose on her 1st day of VPK:) She was ready to go, it only took her a few seconds to warm up and she was was off. So, I didn't get any more pics:( I wanted to so badly but since she was doing so well, I didn't want to disturb her.....Maybe tomorrow I can get a few more pics out of her!?;) It is crazy to think that Callie is in VPK and in just a few weeks she will be the big 5!! She has came along way from the little baby that doctors worried wouldn't make it to see her 1st Birtday. Look at Miss Priss now!!! She sure has shown them what she's made of:) Such a strong, brave heart warrior. Mommy and Daddy are so proud of you sweet girl!

Friday, August 3, 2012

1 year....

1 year ago today, I was looking at my baby like this.....
And today, thank the Lord, I get to see this smiling face....
Callie had her 6th heart surgery a year ago today and then that weekend had her 7th and 8th heart surgeries that were only 12 hrs. apart from one another. Those were the most terrifying moments of my life to date and I can remember those feelings all too well. I was so scared for her life and crying out to God not to take my baby yet. In the moment of all the chaos it is hard just to say, " Lord I lay it all at your feet" but over the years of this rollercoaster we've been living on with Callie, I've quickly learned that is the only way to live. I am so thankful for the sovereignty of our God knowing he has everything in his hands. "For I know the plans I have for you, "declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11

Wednesday, August 1, 2012

Pulmonologist...

Well, Callie had her appointment with the pulmonologist yesterday and to start with, I really, really liked the doctor. He had great bed side manner and listen to everything I had to say. He repeated a chest xray on Callie and also did a xray of her sinuses. The xray showed that her sinuses looked a lot larger than they should be which would indicate a sinus infection but she doesn't have any of the classic signs of a sinus infection...so he was a little thrown off by that. We talked about her espisode back in May when her white blood cell count was so high but chest xray looked great and they couldn't find anything in her bloodwork. He said, usually sinus infections don't elevate your WBC count that much, maybe a little but not as high as hers' was! In the end, he ordered a whole bunch of bloodwork on her. Retesting her WBC count, testing for different immune deficiencies (which I doubt she has b/c she would be sick all the time & shes not), also did an antibody test and various other tests. In Addition, he order the panel for allergy testing. He wants to cover all the bases to ensure we aren't missing anything which I appreciate. We completed all the bloodwork yesterday except for the allergy testing, it was just so much blood at one time for her. So, we will go back later this week to do the allergy testing. They are putting her back on antibiotics and treating her like she has a sinus infection for this current moment. We will repeat another xray of her sinuses in 6weeks. And it will take about 7 days to get the results of her bloodwork. Thanks for checking in and look forward to upcoming posts about Callie starting VPK and the 1 year anniversary of her 6th,7th & 8th heart surgeries!!

Saturday, July 28, 2012

My Diva:)

Little Diva! Love her to pieces. Finally was able to get Callie an appointment with a pulmonologist for this coming Tuesday! We shall see what they say, of course I'm not expecting much since I have feeling thats what were going to get. This all could be nothing, but her going on antibiotic every other month isn't exactly the best thing for her!!! Hope everyone is enjoying there weekend. Callie and I did errands, now resting indoors in the nice, cold air conditioning:) Callie hates the heat and doesn't tolerate it well, so if were not in a pool were not outside;)

Wednesday, July 25, 2012

Here we go..........

I feel like I keep living the same dream over and over:/ Callie just got off antibiotics a week ago this past Sunday and Sunday she started with her dry, annoying cough and as of today, it is once again her horrible, mysterious cough. She doesn't have any other symptoms than being sick just this cough. This cough has been coming and going for a year now and everytime they just stick her on antibiotics to get rid off. So, about a month ago I sat down and charted every single time that I had documented about this cough and that's when I really realized how long this has been coming and going. Long story short, talked with her cardiologist and we both agreed that we think Callie should see a pulmonologist. Been calling since yesterday at 130pm to get her in to be seen while she has her symptoms and before she has to be put on antibiotic again. So the pulmonologist can see this cough in action! But IT IS MISSION IMPOSSIBLE!!! :/ Will be harassing them tomorrow, bright and early at 8am:) So, that is what has been going on this week so far! Beyond frustrated, just wanna cry! Please be in prayer that this is nothing serious. If anyone has any suggestions or their child has experienced anything like this, I would love to hear from you. I will update as soon as I hear anything from docs.

Friday, July 20, 2012

Summer 2012

We have been very thankful for enjoying this summer at home, just hanging out and relaxing as a family. Callie has been enjoying school and feel blessed she has such loving teachers that we can trust our little girl with.
Playing w/friends at school!
Callie on the 4th of July Here lately we have been working real hard on Callie eating and trying to backoff on the feeding pump, so that she feels like eating more during the day. So far, she has been doing very well. Here is Callie showing off her plate.....we tell her an empty plate is a "happy plate":)
This month marks 6mths. since Callie's last trip to California. Which means we only have 6mths till we haveto return, that is if Callie remains stable. We are hopeful that she will make it to January but at the sametime we know it is a possibilty that we will return sooner. One of those harsh realities of our lives that we have just learn to accept. Callie is becoming rather good at writing her name and her speech continues to improve. Getting so big;)Her new thing lately is chewing gum, not something I am thrilled about....but she definitely loves, she thinks it makes her a "BIG GIRL";)
At the beginning of July she had another mysterious cough appeared. That once again, she went on a 2 week course of antibiotic for and by the end of the 2nd week it finally disappeared. She had no other symptoms of being sick, just a nasty cough. So, we aren't sure why she keeps getting this cough. But, we are looking into consulting a pulmonologist. Callie's lungs have been through a descent about of stress over the past 4yrs. with surgery after surgery, so we know her lungs are not 100%....so a pulmonologist might shed some light on this crazy, recurring cough.
Daddy & Callie cutting up, like always!
ZOO FUN!

Wednesday, June 20, 2012

Cardiology Appointment

Callie had her check up with Cardiology today, it has been 3 months since her last check up. Which seems like forever, when we are used to going at least once a month if not more!! Her vitals today were: Weight: 27.4lbs. Oxygen Saturation: 79-81% Height: 39in. The praise is she put on pretty much a pound since the last time she was seen!! Hooray:) Her oxygen may have dropped just a bit. But, at this time not enough to be concerned about. Each visit I am reminded what Callie is faced with.....not that I ever forget in the slightest bit but I like to think we do a pretty good job of raising Callie as she can do anything any other child can do and let her enjoy being a kid. I believe that is very important. But, I am reminded today that we are on borrowed time....no matter how great she looks and is doing. She still as a pretty severe narrowing in her aorta, that will always be concerning. And sometime in the next coming months she will NEED another surgery! I try my hardest to rest it in God's hands, in knowing his timing is perfect:) But, I am only human and still stress about it everyday and worry about her...she my sweet baby girl! And did I mention she is growing up WAY TOO FAST;)

Tuesday, April 24, 2012

A little bit of everything......

Callie came down with a cold over the weekend and as a result woke up Monday morning with a horrible cough:( Which always happens when she gets a cold because any cold she gets goes straight to her lungs since they are not 100% from everything they have been through. So, the doc prescribed her some antibiotic after hearing a few crackles in her lungs! Today, she seems much better...the cough still sounds pretty bad but usually that takes some time. Thank you everyone who has been praying for her:) On Saturday, we attended the Heart Carnival put on by Wolfsons and University of Florida Peditric Cardiology which is for all heart patients. This is the 1st year we have actually been able to attend, we've always either been in California or Callie wasn't well enough to attend. So, I was very thankful to be able to be part of it this year! Here is an interesting fact, a surgeon that practice under Dr. Hanley at Lucile Packard actually moved here last July to be part of the staff here....this is very exiciting for Pediatric Cardiology here and I am very happy for them. While Callie does not benefit from this awesome man, I pray that others will benefit tremendously from the "AWESOME TEACHER" he had in California!!! And forgive me, I do not know the new surgeons' name! I am horrible with names:( But, he is super nice and I enjoyed meeting him on Saturday! Callie is enjoying going to school everyday, these past couple of days she has been home sick she has been begging to go back to school. It is so nice for her to be able to enjoy normal life as a kid and not having to worry with the hospital and surgery. Very thankful for these moments! I think often of all the little ones in the hospital right now dealing with surgery and procedures, etc and it makes me that much more thankful that Callie is doing as well as she is. April marks the anniversary of Callies' 5th heart surgery which was 2 years ago. Blows my mind!!!! God is good:) Here is some pics we had taken for Easter and Callie's 4yr pics ( a little behind on the 4yr. pics since she will be 5 in just a few short months but better late than never!!)
And I almost forgot, I have a praise....for the past couple of months Callie and I have prayed nightly for sweet Lucas who underwent a bone marrow transplant. He was discharged yesterday, he still has to visit the hospital daily but at least he has the nights with his Mommy, Daddy and sweet baby brother. Yay, Lucas:) We love you.

Saturday, April 14, 2012

Easter


Hope everyone had a nice Easter with family and friends. Callie had a blast coloring eggs and hunting for them. We really didn't go anywhere because I came down sick Saturday and felt horrible by Sunday. The Easter Bunny was very good to Callie this year;)

Coloring eggs...she had blue hands the rest of the day;)

Such a happy girl waiting to attack the yard to find those eggs!


Look at all those eggs:)

Funny Face:)




"He is risen from the dead, just as he said would happen"
Matthew 28:6