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.

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.

Saturday, February 20, 2016

Let's be real for a moment....

Callie has been sick with her cyclic vomiting, it was triggered by a cold she caught. We were in the ER for about 7hrs Tuesday night, getting her some IV fluids. Today she is doing better, the vomiting has stopped but she is still nauseous and exhausted from the days of vomiting and not being able to sleep.

We are so thankful that Callie has conquered CHD like a true fighter over the years. But, I can't help but be angry over how unfair life is as I watch her experience all of this. As much as I do not blame anyone, it sucks to watch people enjoying the beautiful day and my baby does not feel well enough to get out of bed. Fair? I THINK NOT!  Not only her but all the other children who are battling illnesses.  She misses out on so much not only due to having numerous heart surgeries over the years but from her vomiting syndrome. Vomiting up to 20 times an hour is absolutely heart wrenching to watch your child go through. People say they feel for her but you cannot fully understand what she goes through unless you live with her and walk by her side through every hospital stay. Yes, she bounces back like a trooper. But, she fights like hell to get there!!

She has missed over a month of school and wants so badly to go back. I am out of work caring for her until she is well enough to resume the normal routine.  She has a follow up appointment with cardiology this week. We hope she will be back to school by March, please pray she is able to catch up and jump right back into school without struggling to hard with the work.

This is not directed towards anyone just more to vent, sometimes you just have to put it all out there. We are thankful for all the wonderful people who have reached out to brighten Callie's day and help our family over the years. Please continue to pray for her recovery. She has lost a lot of weight and we have lots of work to do to get her back to where she was before. Pray for positive results at her upcoming cardiology appointment.

Friday, February 12, 2016

10 Days Home

We have been home now for 10 days :-) Callie is doing well but has been very tired. The thinking is that it is still just her body trying to recover from such a big surgery. Due to Callie's complex anatomy,  the Fontan is a little harder for her body to adjust to and may take some time.

Last week, she followed up with her cardiologist and was sent home with a 24 hour holter monitor due to some PACs and PVCs that were occurring in the hospital and have continued to occur.

***Premature atrial contractions (PACs), also known as atrial premature complexes (APC) or atrial premature beats (APB), are a common cardiac dysrhythmia characterized by premature heartbeats originating in theatria. While the sinoatrial node typically regulates the heartbeat during normal sinus rhythm, PACs occur when another region of the atria depolarizes before the sinoatrial node and thus triggers a premature heartbeat.

**(PVCs) are heartbeats that occur earlier than they should. These early beats briefly interrupt the heart's rhythm.

The good news is she is having more PACs then PVCs. But, it also has to be watched closely. So, this coming Wednesday when she sees cardiology she will have to wear another 24 hr. Holter monitor and hopefully the results will show it is happening less frequently.  Callie never had this problem before the Fontan so this is something new since her surgery.

She still has not been cleared to return to school. We are hopeful after her appointment next week she will get the all clear. Please continue to pray for her overall healing and her energy level will start to pick up. At this moment, there is no way she could make it through a whole day of school. Please also pray for her PVCs & PACs that are happening and pray for them to STOP. I would be lying if I said, I wasn't worried about them.




Monday, February 1, 2016

Home It Is

Callie's chest x-ray went just fine, the doctor said, everything looks good :-) So, we will be flying home tomorrow at some point, still trying to iron out all the details. We are about $400 short for Daddy's ticket, please pray we can get that squared away.

Callie has been doing better the past few days. Her tummy pains continue to improve, thankfully. She is pretty worn out and has been taking long naps, as to be expected. We are very thankful Callie is doing well and we are able to return to the comfort of our home!

Saturday, January 30, 2016

1 Day at a Time

We have just been relaxing at the Ronald McDonald House since Wednesday. The 1st couple of nights were a little rough, Callie was battling a lot of nausea. I think towards the end of her admission she was starting to get very stressed out due to all the people messing with her. This all plays on her vomiting syndrome and makes it a battle for her. 

Yesterday evening and today have been better but she still complains of not feeling well. She is having a nap right now, hopefully she will wake up feeling much better. We know it will take some time to build back up to her normal self but you wish it would happen much faster....there is nothing easy about about this life. But, all you can do is take it 1 day at a time! 

Wednesday, January 27, 2016

Diva Discharged

The Diva was discharged today! We are so happy to have her out of the hospital. She is very tired and has spent most of the afternoon sleeping at the Ronald McDonald House. No plans for the next few days, just have her resting up and building her strength back up.

We will have a follow up with a chest x-ray on Monday at the hospital here and if all is well, they will give us the final okay to go home.

Tuesday, January 26, 2016

Looking Forward

Callie will hopefully be discharged tomorrow....as long as she has a good day with  no hiccups and her chest xray looks okay in the morning.  Her lungs took a real beating from the hematoma that was sitting on her lung, so it is going to take a good 8 weeks they think for her lungs to fully recovery. But, now that she has her chest tubes out they want to make sure she isn't going to accumulate any fluid. Please pray for things to continue to move in the right direction so she can be discharged tomorrow.

We will not be able to go home right away, they want her to follow up in clinic here on Monday and then probably fly home Tuesday or Wednesday as long as all goes well at the appointment.

She will also have to come back in a few months to have another heart cath to have her fenestration closed. Yep, another trip!!! She will be monitored closely at home to determine the right time for her to return California.


Monday, January 25, 2016

Busy Day

The rest of Callie's chest tubes were taken out today, along with her stitches and her pacing wires. She is officially rid of everything, the only thing remaining is her central line and that will be taken out sometime this evening.

Not sure when discharge is but should be rather soon :-) She had an echo early today to get a good look at everything.

Thank you for all your prayers and support during this time. We are very thankful for all the support from each and every one of you. It makes times like these a little easier.

Sunday, January 24, 2016

Bye ICU

Yesterday, Callie was moved from the ICU to the step down unit :-) She had a good day yesterday and we are hoping for an even better one today! She will be getting 2 of her 4 chest tubes removed this afternoon!  Hooray!!! Very happy about this.

After those 2 chest tubes are removed, we are going to get her up and walking around the unit. She has been getting out of the bed but just to go to bathroom. So, she needs to start doing some real walking. 

Please continue to pray for her recovery, specifically for her lungs and that junk she has in there will start to go away.

Friday, January 22, 2016

Post op Day 8

Today was a pretty good day for Callie. Her leg is looking much better from that clot, she is still having some discomfort but nothing like she was.

The lines running in her heart will possibly get pulled tomorrow. If that occurs then she will be free to get out of bed. Hooray!!! She needs to get out of that bed so bad, to get some of that junk in her lungs moving. She does still have 4 chest tubes and on 2 liters of oxygen, hopefully that will be weaned down over the next few days.

Thank you to everyone who is praying for Callie and our family. Prayer works and he hears, she shows us that everyday. Her time left in the hospital is still unknown and our bills do not stop coming, these times can very difficult. Thank you to all who have so generously gave to our family because of this we can be here for Callie and focus on getting her better.

Wednesday, January 20, 2016

Post op day 7

Callie had a much better day, she actually ate some food today and is looking more like herself. Her blood clot in her leg seems to be getting better, her leg is slowly returning to normal size. She is still requiring high flow oxygen but hopefully she will be on a regular nasal cannula by tomorrow. All 4 chest tubes are in still, please pray the drainage really slows down on these so she can get some out, they are really uncomfortable!

She still is not allowed out of bed due to some lines she has running directly into her heart but hopefully soon those can be removed.

Please continue praying, we are seeing the prayers working :-)

Monday, January 18, 2016

Post Day 5 from Fontan

Callie had a rough day yesterday, her liver took somewhat of a hit from her surgery. So, she was out of it all day yesterday because her body was sluggish at clearing all the drugs. Today is much better as far as that goes. She is awake and talking. She is still on high flow oxygen and they will start weaning that slowly.

Our biggest issue at the moment is her left leg and arm are swollen. Left leg is almost double the size of her right. They are doing an ultrasound at this very moment to determine if she has a clot and where that is.

Callie's surgery was a Fenestrated Fontan meaning is the simplest terms is that Dr. Hanley placed a small hole in the Fontan circuit so it can act as a "pop-off" so if the pressure gets too high it can allow her to still mix some of her red and blue blood if needed. The hope is he can close that soon, like before she leaves the ICU. It is a small procedure, he tied like a noose around the hole and the ends of the string are hidden in her ribcage. So, a small incision will be made and he will just grab the ends till it closes then she will be a completed Fontan. He did this to side in her recovery. There is no guarantee it will be closed now, it may need to be done in a few months which at that point would require a heart Cath to do. So, we just have to wait and see what Dr.Hanley decides.

Other than that, Callie is moving in the right direction, she just has had some difficult days but we are thankful to see progress today. Once we figure out her leg issue, I will be more at ease. Again, please continue to pray for her recovery and her lungs start to pick up on their recovery and for her leg. She is in some pain with it, so please pray we can start to get it resolved rather quickly.

Sunday, January 17, 2016

Post op Day Day 4

Callie was taken off the ventilator last night and put on high flow oxygen.  She is maintaining but struggling a little with all the junk in her lungs. Please pray this will get better so she will be more comfortable. She has some things to overcome before she can really start moving along. Please pray today will be a day of great progress for her and she will start feeling more comfortable today. 

Thank you for all you continue prayers and support for the family. Was so grateful for everything.


Saturday, January 16, 2016


Today was thankfully a good day for Callie. Her blood pressure swings are becoming less frequent and overall much more stable. They mainly just wanted her to rest today and tonight due to all what her body has been through the last 2 days. As you can imagine having your chest opened twice in a 24 hrs period is not ideal.

The goal is to hopefully get the breathing tube out tomorrow, as long as her night goes well. Which everything seems to be moving in the right direction, so we should get to see our little firecracker awake tomorrow:-)

Thank you for all your prayers, we are so blessed to have so many praying for our little girl. We are very thankful to all who have donate, we both are out of work and trying to keep up with bills at home plus paying for everything here gets very difficult. 

Please continue to pray for her recovery over the next couple of days, she still has a way to go. 

Friday, January 15, 2016

Quiet Night

Callie's surgery yesterday was successful in removing the blood clot sitting on her lung, she had some other little areas that were seen to also. They placed a 4th chest tube just in case there was any more blood that accumulated, that would help it drain.

Over night, things were quiet and she was very stable. Her bleeding has stopped, so they.are happy about that and her blood pressure is remaining more stable. Her blood pressure swings are less often, she was having swings of dropping her systolic to 50s all the way to high 130s which can be scary so that seems to be much better. That tends to happen after being on bypass and she was on bypass for almost 3 hrs. Usually, the Fontan is done off of bypass but because of all her calcification it was not possible.

We are just waiting on doctors to round to hear the game plan for the day. Thank you for all the prayers, we know the Lord is hearing them, keep them coming she still has a long way to go.

Thursday, January 14, 2016

UPDATE!!!

Callie will have to go back to the operating room later today due to a huge clot sitting on here left upper lobe of her lung. So they will go and wash it out and that should help get herback on track. 

She had a rollercoaster of night with bleeding, blood pressure and some other things. Today she is better from a bleeding standpoint but her she cannot keep her oxygen saturation up due to the clot compressing her lung.

Keep her in your prayers, that things will start to calm down and she will be able to start her recovery process soon! 

Wednesday, January 13, 2016

Surgery done

We got to see Callie around 430pm she did well with surgery. She had a lot of scar tissue, so she had some extra bleeding which required her to go on bypass sooner and longer than originally anticipated. But, the surgery was successful and went well. She will remain intubated over night to allow her body to rest. Tomorrow morning they will evaluate to see if she can be extubated and go from there. 

Prayers for a quiet night with no surprises and that tomorrow will be a great day for her 😃 

Heart Surgery #10

Please say a prayer for my baby, they just took her back about 45 minutes ago. Please pray for a smooth, successful surgery and rock star recovery!

Surgery will be about 6-8 hours.
Thank you for all your continue prayers and support during this time.

Saturday, January 9, 2016

Fontan here we come!!!!

Fontan!!! That word was used very little over the past few years. Callie has never really been a candidate for the Fontan and they never were really sure if she ever would be. Well, this little feisty, unique, 1 million 8 year old will be receiving her Fontan on Wednesday!! Yay! We were excited to hear her numbers were perfect to proceed with the surgery but not so excited to have to send her into another surgery. But, it is the light at the end of the tunnel and we just have to keep reminding ourselves this will be great for her.

We briefly spoke with her surgeon, Dr. Hanley, today and let me just say, this man will never know how loved and appreciated he is by Will and I. He has given our daughter what nobody else thought could be done, he is amazing and I thank the Lord for sending such a wonderful man to give my daughter and so many other children the best chance at a normal life. So, back to what he said ;-) Callie's anatomy is extremely unique as he has reminded us many times so any surgery for her is risky but all the variables are spot on for her to have a successful Fontan. After recovery and as long as she continues to do well with no issues, she pretty much will not need to return to California, at least for a good 10 yrs or longer. So, this is what I mean by light at the end of the tunnel!!! She will be repaired and can forget surgeries hopefully for quite some time. There is a chance down the road she will require a transplant but that is a worry for another day...

It is extremely hard on us as parents to send her in for a 10th heart surgery, our hearts break to have to send in her in once again. We have many prayer requests going into this, please pray for a smooth and successful surgery, for an awesome recovery and for our family during this time.

We know she is going to own this surgery! Just look at this feisty,  sassy girl :-)


Thursday, January 7, 2016

Quick update

Callie was discharged yesterday afternoon and is doing well. Her cath went awesome, she is a candidate for her Fontan - they said her pressures were spot on, which is such a miracle!!!! So, we are waiting to hear from her surgeon if he wants to do the surgery now or bring her back at a later date. I full trust his opinion so whatever he says, is what we will follow.

They were able to also remove her g-tube and Callie is so happy :-) She is tired today and just taking easy, pray for her continued rest and recovery from the cath.

Just wanted to do a quick update, so everyone knew what was going on. I will update once we hear from surgeon.

Thank you for your continue prayers and support. Callie has done so well this trip with her vomiting syndrome and I know all the prayers are being heard :-)

Tuesday, January 5, 2016

Pre-Op Day

We arrived safely in California, it was a long day of travel but Callie managed it great, thankfully. She had her pre-op appointment today and while it took forever,  it was a great appointment.

Everyone was so excited to see how wonderful she looks and how she has grown over the past 2 years!

She is 1st case tomorrow for her cath, she should go back around 830 am. If she doesn't require any intervention during the cath and does good, she will be able to be discharged later that day. So, please pray no intervention is needed and we receive great news from her cath results. Please continue to pray Callie will remain during well and her cyclic vomiting will stay under control, it is a very hard balance at times. After, pre-op we managed to get out and have a little fun :-)




Thank you for all your continued prayers, they are being heard and how well Callie is doing is the proof!