Learn About Callie's Journey with CHD

My photo
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.

Friday, June 8, 2018

Staying in Cali for a little longer....

Due to some results of Callie's heart Cath, her cardiologist at home and her team in California felt it best if she remained here for additional testing. To give a little detail of her heart cath results , her narrowing in her aorta required some ballooning and more than likely will need to be surgical address in the future. Her fenestration was tested to see if it could be closed but this increased her fontan pressure to high, therefore they did not close the fenestration.

Her oxygen saturation is lower than what it should be even with having a fenestration. Therefore, she will be meeting with a cardiologist here who is a Pulmonary vascular specialist. He has ordered a cardiac MRI which will be performed on Monday and we will meet with him on Tuesday. She has already completed another test that he ordered also, which watches what her oxygen does after walking consistently for about 5 min. The team here in California also wanted her to meet with a pulmonologist and we are hopefully meeting them also on Tuesday.

All this is to determine what they can do to get her oxygen up to where it should be for her current fenestrated fontan anatomy. Something to keep mind, Callie was a high risk fontan to begin with and we hope staying and seeing these specialists will keep us ahead of any majors problems in the future.

Please pray for Callie as she has to remain still for 1 hour for this MRI and everyone's goal is to not to have to sedate her during this procedure.

Thank you for the continue prayers and support during this time. We are all ready to be home but we know this is where Callie needs to be at the current moment. We are making the best out of trip, doing fun things with her when we can. Very thankful for the Ronald McDonald House, she is having a blast playing in the playroom every afternoon and has made a few friends😊 We are thankful she is where she needs to be and we have such a great team of doctors standing behind her, they have all been working so diligently to get everything schedule as quick as possible, so we can hopefully get home soon.

As soon as we know more, I will update.



Monday, June 4, 2018

Pre-Op Day for Heart Cath

Pre-op went well, everyone was very pleased with how Callie is doing. They all commented on how great she looks😊 So happy!! Her heart cath is scheduled for 8am tomorrow and prayers that we do not get bumped. Prayers for an easy cath with no intervention needed and she can be discharged the same day to rest at the Ronald McDonald House.

Callie is in great spirits! Here are some pics from today.




Tuesday, May 29, 2018

Callie Goes To California

We are at that time for another trip to California. It has been 2.5 years since Callie's last surgery the fenestrated Fontan. Callie has been doing wonderful and we could not be more happy with her progress since the Fontan.

Due to the complexity of her heart condition, her team in California feels it is important for her to be seen by them and have a diagnostic heart cath. We are praying for a great trip with results to match.

We will be leaving in just a few days for our trip, Callie has appointments starting on Monday, June 4th and her heart cath will be Tuesday, June 5th. Will you please join me in praying for her and our family? No matter how many times you make this trip, it never gets easier but we are always determined to make the best out of it! Excited for her team in California to see her and how great she is doing.


Callie has been taking horse back riding lessons since March and is absolutely loving it. She has the best instructor in the world! She just finished up 4th grade with A/B honor roll for the whole year and would have had perfect attendance, if her Mom didn't pull her out during flu season. Wanted to protect her as much as we could. Super proud of our girl !

If you would like to help support our family financially during this next trip, here is the link:

https://www.gofundme.com/callies-2018-heart-trip-to-california




Friday, January 20, 2017

1 year post op & hello 2017

January 13th was 1 year post Fontan for Callie, a year sure does go by fast but also seem to drag by at moments. 2016 was a hard year for our family, between Callie's surgery in January and not really bouncing back from it, she seemed to face one obstacle after another last year. Then, Will lost his job - combine that with the needs of a medically complex kiddo and you feel as if you are drowning 90% of the time. Most of the time, family and friends don't get it or can't understand everything you live with on a daily basis. Only the families who have a medically complex child can truly understand. At times, you are in a constant state of worry over half the time, if not about the child, then about how your going to take care of all your financial needs because you struggle to work even 20 hrs a week because the needs of your child are so great. We might not constantly tell everything Callie deals with or our family but it doesn't mean the struggles aren't there. That just means we are doing everything humanly possibly to live a "normal" life and not dwell on things we cannot control.

It truly has taken Callie 1 full year to recover from her fenestrated Fontan, that surgery was so hard on her body. Her heart was thriving so well on the Glenn and she was already a high risk Fontan patient that the Fontan was pretty much a shock to her body. Thankfully, I pray the worst is behind us and brighter days are ahead. She seems to be adjusting better now to the Fontan and thriving. Her anemia is being treating and her energy has returned :-) At her cardiology appointment this week, she was 48 lbs so she is starting to put weight on...hooray!!! 2017 seems to be off to a good start!

Callie will have a trip to California sometime during the summer, no date has been set at this time. She needs a cath to see if they can close her fenestration, if they cannot close it then she will have to go back in another year. At this point, she is still actively depending on her fenestration so I'm not sure they will be able to close it but we will just have to wait and see.


I pray 2017 holds an abundance of blessings for our family & yours!



Tuesday, November 15, 2016

Exhausted & Looking Ahead

I have not updated in while, mainly because things have been very hectic and stressful for our family. Callie started 3rd grade in August and continues to love school. She has some amazing teachers and we could not ask for a better school for her. August was a pretty good month for her, with the exception of some fatigue. However, September hit with a vengeance, she had a vomiting cycle hit that lasted for a week. She just couldn't seem to recover, the fatigue she was having was just crazy. Then, October came and once again, she had another vomiting cycle. Around the same time she had a couple of appointments, one with her specialist for the vomiting and the other with her Pediatrician. Both agreed, her hours needed to be cut at school, her weight was down and the fatigue continued to get worse.

Which brings us to November, now she has her check up at the Cardiologist. Her heart rate is elevated but echo, ekg all look unchanged. So, due to her extreme fatigue, elevated heart rate and the lack of weight gain, her cardiologist order some blood work. A few days later, her pediatrician ordered additional labs and some xrays to cover everything, in hopes we get an answer to what is happening with her. Well, our answer is she is severely anemic! Which we think was set off by her GI bleed back in July and because we were unaware of it, her fatigue has just been getting worse. Let me just say, I am thankful for 2 wonderful doctors who take such wonderful care of my baby. They will never know how much I appreciate them and all they do. Will and I have been extremely worried about her, words cannot describe how thankful I am that it is something that can be corrected.

Callie will have some repeated blood work in a few weeks and along with some new blood work, just to make sure they are not missing anything. Our hope is over the next few weeks, she will regain her energy, her heart rate will return to normal and she will start to gain her weight back. Seeing your child so tired, that everyday is physically a struggle is absolutely heart breaking and I am ready for my spunky girl back. Sweet girl is also getting over the flu :-(

Please pray for Callie and everything will resolve itself soon. We will continue to cut back her hours at school until she proves she feels well enough to go back to full days. Which means I will continue to cut my hours at work, I have missed a tremendous amount of work over the last few months due to the need to be home with her. This has created a bit of a financial strain on us and we have yet to really bounce back since her trip to California in January. Callie will always be #1 and as long as she is healthy, well then the bills and everything else will just have to wait.

Thursday, July 28, 2016

Healing & Prayer Requests

Thank you for all the prayers! Callie is doing much better, she was discharged Tuesday evening and we have just been watching her closely for any signs of possible bleeding...very nerve racking! She is on a restricted diet and some new meds to help her stomach lining heal.

She will be starting back to school very soon, so please pray that she will be in tip top shape for when school starts back :-) Cardiology follow up will be this coming week and as always we are hoping for stable and great news.

On another note, please pray for our family - we have some very specific financial needs coming up, among so very other important areas of our lives, please provide for the Lord to provide.

Tuesday, July 26, 2016

Surgery & GI Bleed

Callie had her fistula closed a week ago today, which was where her gtube used to be. The surgery went well but the stressed triggered her vomiting syndrome. Well, on the Thursday she started having like brownish stuff in her vomit which I knew it was probably old blood.

Monday morning she was in extreme pain and had lots of brown stuff in her vomit, in addition,  her bowel movement she had was all darkish as well. So, to the ER we went and she was admitted for observation. They believe she had some type of GI bleed, she threw up this morning and it did not have any abnormal color in it, so that is good. We are waiting to hear what they want to do with her.

Please pray for total healing of her tummy and that there will be no more bleeding. Also, that she will start to feel much, much better and for to get her appetite back. There is always something happening, nothing can ever be simple.