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 25, 2011

Merry Christmas 2011

Merry Christmas everyone! Hope everyone enjoyed the day with family and friends, remembering the reason for the season:)
Callie and her new bike!

We can't say enough how thankful we are to be at home with Callie, watching her enjoy this day! Please, take a minute to pray for all the children in the hospital who cannot be at home on this Christmas.

“For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace” Isaiah 9:6

One last pic of Callie and her drums, which was a gift from Grandma!!!! My ears are not liking it at all, I think I have a permament headache;)But, Callie is loving it and thats all that matters!

Wednesday, December 21, 2011

Callie had her routine check up with the Cardiologist on Monday and everything went well.
As you can tell from the pic above she was happy to be there:) She enjoys are visits here, loves seeing everyone and her favorite is begging them for lollipops:)

She weighed in at 25lbs and 38in. Oxygen saturation was between 79-82% which is just fine for Callie. Her cardiologist said, her narrowing in her aorta actually looks a little better, which was good to hear. And overall, she seems to be in the best point with her heart to hopefully go forward with her Glenn in January! All smiles on that one and continue to pray that this cath she will have before her surgery, will show great things in that little heart of hers!

Callie is very exicited for Christmas and she can't wait to get those gifts!! She also has been enjoying reading about baby Jesus and talks about him non-stop and how he was born on Christmas:)

The above pic is Callie playing her new fav game "Monkey Dunk" that she received as a gift! As you can tell, she loves it. We are enjoying this time of year with Miss Callie and can't wait to see her open her gifts on Christmas morning!

I want to extend a huge, thank you to everyone who has opened their hearts to our family and for all your generosity! Words do not describe how touched we are by all of you.

Merry Christmas to everyone!

Saturday, November 26, 2011

Thanksgiving 2011

Hope everyone had a nice Thanksgiving.

We had a nice Thanksgiving with family and enjoy lots of yummy food;)
Callie had the privilege of riding a horse for the 1st time ever!! She was so exicited about this:)

She had no fear at all and couldn't wait to jump on!

Callie being silly with her Daddy

Callie has been doing great and I am so very grateful. We are happy she is home and doing so well, thankful Thanksgiving was spent with family and not in the hospital.

I think daily about Callie's upcoming trip to California and everything she will go through, Will and I both dread it and wish we didn't haveto take her! But, I am hopeful this surgery will be her Glenn and she can have a break and be surgery free for a couple of years! ( which will be the 1st time in her life)

As many of you know, these frequent trips to California are very hard on our family not only emotional but financially. If anyone has any frequent flyer miles that they are not using and would like to pass on, we would very much appreciate them to buy Will's plane ticket.

As always thank you for lifting Callie up in prayer! Please continue to pray with us, that the Lord will prepare her little body for this upcoming surgery in January.

Friday, November 18, 2011

Simply Thankful

My little Indian:) Today as I look at Miss Callie, I am so thankful that she is doing so well despite what is going on with her little heart and that she is able to enjoy school with her friends. 2mths from today Callie will be going in for her 9th heart surgery, please pray over the next couple of months, the Lord will prepare her little body for this and that she will do AWESOME!

Sunday, November 13, 2011

Trick or Treat 2011

My Little Minnie Mouse:)

And of course, we couldn't forget carving a Mickey Mouse pumpkin!

Posing with her pumpkin!

Trick or Treat!
Callie had it easy, Mommy pushed her to each house in her stroller! Spoiled Rotten!!

Hope everyone got lots of candy for Halloween;)

Tuesday, October 25, 2011

Meet Pebbles!

Callie was sent by "Dreams Come True" to spend some time with the dolphins at Marineland about a week ago!! What an exiciting day for Callie. For those of you who don't know, Callie is in love with dolphins!!

As soon as they put the lifevest on her she ran for the water! She wasn't scared at all....she really enjoyed herself and talks about going back all the time.

She thought it was hilarious that is she splashed Pebbles, Pebbles splashed her back:)

Callie has been doing very well and I pray for this trend to continue. We have been vomit free now for 2wks and so far this month only had 1 short cycle of 5 days.

Check back soon for pics of our day at the pumpkin patch:)

One last pic of Callie and Pebbles.

Thursday, October 13, 2011

Meet The New Cleaning Lady!!!

I employed some cleaning help this past week, isn't she adorable?
She cleans better than some adults I know!! Even if the vacuum is a big as her;)

Callie is over her cycle!! YAY:) I think we are starting to get a handle on these cycles, praise the Lord. She has had more good days this month and her last cycle was only 4 1/2 days. Thank you Victoria, for being someone I could talk to about this and for recommending the Neurontin.

Her cardiology appt. went well, except for the fact my 4yr. old weighed 22lbs.!! Yikes! But, how can anyone keep weight on puking 20 times an hr. Now we work to put the weight back on, so far she is doing an excellent job of that. Filling her tummy with pizza, ice cream and all the things we shouldn't eat but Callie most certainly should;) Callie will not have her MRI tomorrow because she needs anesthesia for it and well she isn't at the stablest point with her heart so, Dr. Lacey doesn't feel comfortably putting her under. Which I totally respect that and grateful she is being so cautious will my baby! Callie will probably have this test done in California when she has her heart cath.

Thanks for checking in!

Sunday, October 9, 2011

Callie had her appt. with Neurology and it wasn't exactly what I was expecting. The doc didn't have much to say. He did prescribe her another medication (Neurontin), to see if it would help during her cycles. He does what to do an MRI of her brain, to totally make sure there is nothing from a Neuro standpoint that he needs to treat. If that is clear, then Neurology doesn't care to see her back. Her MRI is schedule for this Friday. So, we shall see.

Callie's last cycle ended Sept. 24 and she was doing great, back to her giggling self. Until this past Friday, when it all started again. My heart breaks when this starts, it is so hard to watch because there is nothing that really helps. Callie cannot afford to be going through all this, she is so skinny. Everytime she starts to put weight back on, this starts and then she loses it all again.

She sees Cardiology on Wednesday for a regular check up and then MRI is schedule for Friday. Callie will follow Cardiology every 2 weeks until we return to CA. Please continue to pray for her heart and that January holds good things for her. Going back for another surgery terrifies me but I know that this could be "The Surgery" we have all been waiting for and it will be so great for her!

Please pray that this cycle is short for her. Also, please pray for Moriah and her parents, Victoria and Justin. momentswithmoriah.blogspot.com Moriah is in the hospital with a fever and they are hoping to figure what it is and get her back home asap.

Thank you for checking in and all your prayers and support, it all means a great deal to us.

Ending on this note, a sweet friend recently posted a post which started with this verse,

Give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:18

Since having Callie, I have always kept this in sight but lately have struggled greatly with being thankful as we deal with our circumstances on a daily basis. Thank you Terra, for sharing and opening your heart to us.

Sunday, September 25, 2011

Thought I would do a follow up from my last post, so everyone could be brought up to speed with what is the latest with Miss Callie.

All of Callie's GI test were normal, she saw the GI doctor a week ago and at that appointment that diagnosed Callie with Cyclic Vomiting Syndrome. If you don't know what this syndrome is, take a minute and look it up. Let me just say, it is HORRIBLE. Basically, it comes in cycles and you have know idea how long a cycle will last. Her last cycle was 10days, 10days of nausea, vomiting and feeling horrinle 24/7, it is miserable to see your child like this and your helpless. It puts your life on hold because doing anything is impossible. Callie gets Ativan as needed to help and they started her on Cyproheptadine to hopefully give her longer breaks in between her cycles. As of right now, she has only had a total of about 8days this month where she hasn't been sick=( This vomitng syndrome has triggers, such as stress, excitement and whatever else. Obviously, Callie's is stress! Everyone's thinking is all the physical stress her body encountered this last hospilization brought this out in her. Thursday Callie has an appointment with Neurology, I am hopeful they will be able to start her on an additional medication to help with this cycles.

We attended the Heart Walk on Saturday for the first time since Callie was born. Every year we have been in California, so this year I was very happy we were home for it =)

Thanks for checking in!

Will update after her appointment on Thursday.

Wednesday, September 14, 2011

We are home. Been home for 2wks now tomorrow.....My little girl turned the big 4 on the 4th:) I can't believe how fast time has gone by, I still cannot believe she really is 4.

The picture to the right was taken this past Saturday when we celebrated Callie's birthday with family. She is holding her "Beads of Courage" that was started this last hospilization. Each bead represents a procedure she has had done. Although, we did not include every bead for every procedure we including the major ones and will continue to do so. I think it is nice for the kids to have as they get older, it defiently tells a story:)

Callie has been struggling with vomiting since before we left CA. So far, it comes in cycles. She will be sick for 4 days and then better for 5 days and the cycle so far has continued to repeat itself. Not exactly sure what is wrong. Callie has been seeing her cardiologist weekly since returning home ( a HUGE thank you to Dr. Lacey for being so caring and doing all that you do for Miss Callie, we love you) and there are no obvious answers for her vomiting. So, today we went for a stomach xray, tomorrow she will have a stomach ultrasound and a barium swallow to look at her stomach and intestines. Please pray for some answers and that this will all stop! It has been 100% miserable for her and her voice is completely GONE due to vomiting so much.

We are thankful to be home and are looking forward to Callie feeling better so she can get back to her normal routine of things.

Callie will return to CA in January she is currently schedule for a cath and surgery. Her surgery would be to repair her narrowing (that is causing her high bp) and then her Glenn. I will breath a huge sigh of relief when she gets that Glenn!

This last trip was extremely terrifying and I never want to see my child go through any of that every again. Thank you to the CVICU and Dr. Hanley for being so awesome and saving my daughter's life!

Lord, you have been by Callie's side every second, through every surgery and every blood draw. Your plans for her must be out of this world because you have created one strong little girl, that I admire and love with every ounce of my being. Thank you for blessing us with one beautiful, amazing 4 year old!

Will update soon with Callie's continued progress.

Saturday, August 27, 2011

Free at Last:)

Callie was discharged yesterday...Hooray! I was so happy to get her out of there and I know she is just as happy. Callie is doing well, she is very sleepy and still trying to get her strength back. Right now, she is sleeping the majority of the time. I know it feels good to be able to sleep and not have someone bugging you every 2 seconds for blood or to take your bp.

Her bp remains under control with 2 bp meds. One every 12hrs and the other every 6hrs. She was weaned off of oxygen but seems to be requiring some oxygen when she sleeps. Once her body recovers and adjusts to the new central shunt, she should level out her oxygen saturations and not desat when sleeping.

She doesn't want to eat and has been having a time with tummy issues. Poor thing! I'm positive it is from all the medications she is on making her feel so yucky. If anyone can lend some advice to any over the counter meds for upset tummies in kids, that is okay to take with a butt load of medication....please let me know.

Callie has blood work and a chest xray on Monday at LPCH, then on Wednesday she has a follow up appt. w/Cardiology. Usually, we do not follow up in Clinic here but since Callie has had so many major events happen this hospitalization, I did not feel comfortable flying home without them checking her out one last time! Then, hope to fly home a few days after:)

Thank you to everyone for all of your emotional support, generosity and prayers during this trip, we are so grateful! God has blessed us with some pretty amazing family and friends, not sure what we would do without all of you! Big hugs to all.

Sunday, August 21, 2011

I was able to get Callie sitting up in a chair today, she did this once the other day but not since. So, it was good for her to get out of the bed. In the next day or two, I am going to get her in a wagon and take her for some sunshine;)

Last night, she spiked a fever but never spiked another one. As a precaution they started her on an antibiotic. She went for her swallow study and she does aspirate, so now she can only have thickened liquids. But, they want us to repeat the study in 4-6wks, everyone believes it is only temporary. Fingers crossed!

Blood pressure continues to be an issue but is more under control today and they are going to up her next dose of bp med. So, I think in the next day or so it should be under control.

Now, another mystery.............Why is Callie requiring so much oxygen? Her xray continues to improve, but her requirement for oxygen is still the same. Please pray this resolves itself and we don't have to think anymore about it.

Your prayers are still needed, she still has the couple of hurdles to get over. This trip has been so mentally draining, I can't even begin to find the words to describe it.

Thursday, August 18, 2011

Callie had a good day today, she slept well last night. I'm not sure how she gets any sleep in the ICU, it can be so loud at times! This morning I fixed her hair, put a pretty new bow...she wasn't thrilled with me brushing her hair but was happy to have me put the bow in:)She did some coloring today and watched lots of movies.

They are playing around with her blood pressure medicine, she will be going home on bp meds until she returns for her next cath. They started up her feeds again today and she was able to eat a little cereal and ice chips. She will possibly be going in for a barium swallow to rule out if she aspirates when she swallows. Everyone believes she will be fine because she has a good strong cough and her vocal cord should return back to normal working in order in a matter of time. ENT believes it is only temporary:) YAY! Her one chest tube is still putting out a fair amount, I'm praying it slacks off and she can get that out very soon. She is still on high flow oxygen, they are working on weaning that down.

Will leaves to go home on Friday, so that sucks:( I'm hoping Callie does okay with him leaving, hopefully she won't mind too much.

Wednesday, August 17, 2011

11th Heart Cath

Callie's cath went well, she did not have any issues. Praise the Lord!! They were able to balloon open the area that was blocked or pinched, however you may want to word it. However, her blood pressure is stil high, so we will see what happens.

Hoping Callie sleeps well, so I can get some rest too:)

Tuesday, August 16, 2011

Prayers Please...

Things have been such a rollercoaster this trip. Will and I are so physically and mentally exhausted. We feel so defeated and helpless when it comes to Callie. Poor baby has been through so much and its just not fair.

So with saying all that, Callie has to go in for a heart cath at around 1pm California time to see if they can put a stent in a narrowing she apparently has that is causing her high blood pressure. This is really an odd situation because her blood pressure is only high in one arm and all other extremities register a normal bp. This is because where the narrowing is, I haven't been able to talk with Dr. Hanley just yet so its a little hard to explain. Dr. Peng will be doing her cath and she is going to check out everything. This cath is consider more risky because she is so fresh out of surgery so please pray that everything goes GREAT!

Callie is a little more talkative this morning...with that said, they looked at her vocal cord yesterday and it is paralayzed:( I'm praying and thinking only positive thoughts that it will only be temporary.

All I ask, that everyone prays for my baby and everything goes well with no complications and we get positive news.

Monday, August 15, 2011

Moving Along...

Callie had a little set back, so she was extubated on Friday but then on Saturday morning had to go on CPAP because her right upper lobe of her lung had collapased some:( Today she was able to go back on high flow oxygen for part of the day and then tonight was put back on CPAP just for overnight. Then, in the morning if her xray looks better she will get rid of the CPAP all together and go back to high flow.

She was able to get 1 of her chest tubes out! YAY! We are slowly making the transition from IV meds to oral meds. Her gtube feeds were started back today and hopefully she will continue to do well with that. Making progress, so thankful!

There is still question of what is going on with her blood pressure. She has been on 2 IV blood pressure meds since Sunday to control it. Anytime the docs would try to go down on them her systolic (the top number) would eventually make its way to 150 or higher! So,last night they were able to get her off of 1 but had to go to the ma dosage on the other and add a oral bp med. They don't really know what is causing her bp to be so high. Tomorrow she will have an ultrasound to check her kidneys to make sure there is no clots, apparently if you have a clot that can cause high bp. But, they don't think she does because she is peeing well and her blood work looks fine. Guess we just haveto wait and see. Please pray it is nothing and a simple solution or just resolves its self.

Callie will also have her left vocal cord looked at tomorrow by ENT to see what the status is with that. Having been down this road before, I think her vocal cord is fine or could be just temporary because her voice is quiet but not too bad. I think it will be fine.

Callie has been sleeping a lot today, she has been coughing a lot due to her lung situation and the medication they are giving her for her breathing treatment. So, all that coughing wears her slap out. She also is very quiet, doesn't say hardly anything. She looks at you like, what the heck!?! I feel so bad, I just want to scoop her up and get her outta here. But, hopefully not too much longer. She is doing awesome and everything is heading in the right direction:) Thank you, Lord.

Please continue to pray for healing of her little body and for her stay not to be much longer in the hospital. Recovery is so much better in the comfort of home:)

Thank you everyone for your continue prayers and support. We are so very grateful, this has been a tough trip and having all the support makes it a bit easier.

Saturday, August 13, 2011

Extubated :)

My little trooper was extubated today:) She did well, just very sleepy and has been resting well. Callie is on high flow oxygen for now and will be weaned to regular nasal cannula in the next few days. Her blood pressure has been a little hard to control and they aren't exactly sure why. Should get more clarification on that tomorrow, thinking it probably has something to do with her surgeries on Sunday. Her neck is also swollen which is moving don her arm, that is most likely due to her central line in her arm. Again, we will be talking about that tomorrow as well.

Overall, she is doing great and has overcome Sunday's events incredibly well!

Thank you to a dear friend, Victoria for stopping by the hospital today:) It was nice to see you and I hope to meet Miss Moriah and Jadon very soon;) We love you, Nelson Family!

Thursday, August 11, 2011

A Good Day

Callie had a quiet, awesome day:) No major changes for Callie today...the docs are taking everything very slow. They were able to come off of her Morphine drip a bit and come down on her ventilator settings some. They are working towards extubating her very soon. There was talk of possibily tomorrow but I'm thinking it might be more like Friday. We will just haveto wait and see........baby steps!

I am very thankful for this day, she was opening her eyes some and answering questions by shaking her head yes or no. Its nice to be able to communicate with my baby some, I miss her loud, silly self. So, today was good:)

Thank you everyone for your continued prayers and support.

Tuesday, August 9, 2011

Urgent Update

Callie has had a lot going on since Sunday morning. Will and I received a phone call around 6am Sunday morning to head to the ICU ASAP. Callie around 4am had started to pour blood out of 1 of her chest tubes and out of her incision. She was taken back to the OR where Dr. Hanely did emergency surgery. A long story short, Callie's chest tube ripped her Aorta!!! From what I was told, it is a very freak accident. But, I believe the chest tube made its way up there near the aorta due to all the movement she was doing when they couldn't get her sedated. So, she was stablized and brought back to the ICU. Dr. Hanley stitched the tear and all was well.

Our nightmare occured again later Sunday night at 930pm. The same thing occured she started bleeding out, she was opened up bedside by Dr. Hanley where he explored the problem. It was then discovered she had another tear in her aorta! He believes from all of her surgeries, scar tissue and then the chest tube incident it weakend the aorta tissue and thinned it out. So, instead of stitching this tear, he put a patch over her aorta to prevent this from happening again!

As of right now they have her paralyzed as a percaution to make sure no more bleeding occurs. As soon as they know that patch is set, then they will allow her to start moving again! She is having a few issues with her blood pressure, so she has 2 meds controlling that. Overall, things as far as meds and such have not change since my last post.

This has been the hardest and scariest past couple of days I have ever been through in my life and I feel so helpless.

Please say a prayer for Callie, that the Lord will heal her and there will be no repercussions from all the tramua her little body has had to endure.

Thank you Lord for being with our little girl through all of this and blessing us with such an amazing surgeon! We love you Dr. Hanley!

Saturday, August 6, 2011

Post Op: Day 3

Not much happening with Miss Callie. She has been a real challenge to keep sedated, but right now she is resting very nicely. If they allow her to wake up she is not the greatest patient:/ She basically tries to keep up and walk out, which is kinda hard to do when your hooked up to a ventilator! HAHA! She is a mess, I wouldn't have it any other way =)

The hope was to extubate her tomorrow but not too sure if they is going to happen, now. Her xray and oxygen saturation looks great, breath sounds are great but she is still having just a little trouble which the docs tend to think it is because of all the extensive work that was done on her heart. Basically, she just might require another day or so of rest. Which I am completely happy with....we will just continue to take one day at a time.

I am so amazed when I look at her, her strength and determination is unbelievable! Looking at Callie during these times and all she is faced with, she really reminds me how powerful our God is and nothing is impossible. Having to watch her lay there kills me, I want so badly to hear her sweet little voice. But.....on the other hand she would probably be yelling at me so it might be a good thing she is knocked out right now!! LOL Because man, that child has one heck of a temper and a hard head=)

I had a doctor tell me today, how exicited Dr. Hanley was when he finished Callie's surgery. This is such a HUGE step in the right direction for Callie and many were not sure if she would ever get this far. She is not out of the woods yet but we will continue to pray and take one day at a time. I think I have prayed every night since the day she was born for God to perform a miracle and heal her. Well, I think I'm living that miracle!!

Thank you Dr. Hanley, for all you have done for Callie and continue to do for her. We love you!!!!

Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Matthew 19:26

Friday, August 5, 2011

Post Op: Day 1

Callie had a very uneventful day, she has remained very stable! Today was all about keeping her comfortable so she can continue to rest and heal.

We did find out on rounds this morning that she might possibly have left vocal cord paralysis from her heart surgery =( Your vocal cords are in such close proximity to your heart, that they can be in danger during any heart surgery. So, it was reported from Dr. Hanley to keep an eye on the left vocal cord after she is extubated because apparently he was very close to it and feels it could be damaged! This makes me sad but I know it may turn out to be nothing! And it also could only be temporary which is what I pray for. Her 2nd heart surgery at 8mths old she suffered from right vocal cord paralysis and it turned out to be temporary and she recovered just fine from. We won't know more until she is extubated and can evaulate the situation. But, please pray with me that it turns out to very minor and temporary.

I would like to say, thank you to Lisa a friend of one of our close heart families, The Williams Family. The have an adorable little girl Reagan that I have posted about before and we met here in CA at RMH way back when. Long story short, Lisa brought Will and I a huge amount of groceries today and we are so grateful. Thank you so much Lisa, it means a great deal=)

So, it was a good day for Miss Callie and I am off to bed to get some much needed rest.

God is Good!

Thursday, August 4, 2011

So far.....

Callie is doing well, no real issues at this point! Her blood pressure was a little high in the evening yesterday but has come down some and they seem to be happy with that.

Nothing else to report, she is still zonked out of her mind=) Which I'm happy about because I know she is resting comfortably.

Will update soon!

Wednesday, August 3, 2011

Surgery Completed!!!!

Hi Everyone! Callie is done, praise the lord. She did awesome, the Lord was with her today and we are so thankful to each one of you who prayed for our little girl. Callie handled the bypass machine just fine and everything was done successfully without any complications.

Dr. Hanley removed her 2 central shunts and replaced them with one main shunt. He removed her lower left pulmonary vein away from her aorta and also removed the stent from her upper left pulmonary vein. So, both left pulmonary veins have awesome blood flow now. He is confident this upper vein will stay open now and hopefully there will be no further complications with it! Fingers and toes crossed=)

The objective of this surgery was to help get her pressures in a range that will be safe for her to have her Glenn. So, we will return in 6mths for a heart cath and if her pressures have lowered then and everything looks good then at that point she will have her 7th open heart surgery The Glenn!

I am so relieved and grateful right now=)

I will update after we see her!

Surgery Started....

Callie was taken back to the OR around 8am and we just got a call that they were making the incision at 10am. I will update was we get updates.

All smiles and giggles

Callie had her pre op today that started bright and early at 730am. She was so very happy to have her picture taken (echo and xray) Callie helped the echo tech get everything ready for echo. She was as good as gold:) Then we met with anesthesia she was all giggles and smiles for them! Doing anything she could do to be silly, little Miss Personality.

We haveto be at the hospital at 630am, Callie is the one and only case tomorrow. So, there shouldn't be any delays. I will do my best to update during the day to keep everyone up to speed.

Thank you to everyone who has Callie on the prayer list at Church and praying everyday for her. Please continue to pray for her safety and successful surgery.

Love to all.

Friday, July 29, 2011

Go Home?!

We arrived in California yesterday afternoon, Callie was a superstar on all the flights. Couldn't have asked for anything better!

Currently we are staying in a hotel waiting for a room at RMH to open open:/

Early this morning we had our meeting with Dr. Hanley to discuss the plan for Callie's surgery on Wednesday. The plan is to remove both of Callie's central shunts she have a replace with 1 shunt. And then remove the aorta of her lower left pulmonary vein. Doing this will hopefully prepare Callie for her Glenn in 6mths. The BIG thing with this surgery is she HAS TO be on bypass!! As most of you know, Callie has never been on the heart-lung machine with any of her surgeries. Dr. Hanley has always tried to avoid the machine due to Callie's complex anatomy and the risk it holds for her. But, this surgery has to be done on bypass there is no way around it. I am scared about this but know he would never do anything that he didn't think her body could handle. Please pray for her and that her body tolerates this well and she comes off of it just fine and there are no complications. All in all, it was a good meeting. Callie continues to head down the right track and this is one more step to her much needed Glenn.

After our meeting, we decided to take Callie to the Monterey Bay Aquarium.
Will and I have been before but Callie has not and we knew she would love it:) Her favorite were the penguins! We had a nice time just taking our time and enjoying the day with Miss Callie. The weather was much cooler there than in Palo Alto which was nice!
Callie and Daddy at Lunch
Mommy and Callie at the Aquarium
We are enjoying the next few days with Callie before she goes into surgery. So, yes she continues to be spolied rotten;) Callie has been asking since when arrived, "home, me go home" She misses home already and we've only been here a day:( Poor baby, she doesn't understand. It's so hard, but we are doing are best to keep her occupied:)

So, pre-op on Tuesday at 730am and surgery Wednesday.

I will continue to update on our happenings!

Thursday, July 28, 2011

Heading out....

We head out in the morning for California! I've been busy packing, cleaning and all that kind of fun stuff;) Callie seems exicited about her plane ride but she did tell me tonight, Mama no doctor! Breaks my heart to hear her say that, but we will try and make it as fun as possible before she goes into the hospital.

We have a meeting Friday morning with Callie's surgeon, Dr. Hanley to discuss the details of her surgery.

Please pray for a smooth and safe trip.

I will update when we get settled!

Friday, July 8, 2011

These days..........

Callie been enjoying lots of trips to the beach, pool and movies this summer. She loves the beach but not the pool so much. She just isn't comfortable in the water yet! I think by next summer she will be ready to teach how to swim a little bit....at least I hope!
We took Callie to the Georgia Aquarium a few weeks ago and she loved it.
When Callie recieved her dream last September she recived something they call a "passport" and its good for so many different places where the family gets into for free! So, we figured we better take advantage of it since it will expire very soon.

Callie fell in love with dolphins! We are hoping in the next year or so to take her to Discovery Cove in Orlando so she can swim with the dolphins.

Callie's speech has exploded over the last month or so. I never thought I would hear here tallk so well! It is unbelievable...I love it but at times I wish I had ear plugs too! haha
We are busy getting ready for Callie's next trip to California for her 6th heart surgery. We leave on July 28th and her surgery will be August 3rd. Will and I are stressed more so this time I believe than ever before, at least I am. Callie has had so many surgeries and there are no words to describe my fear. But, I try my best to lay it all at the Lord's feet but sometimes its not the easiest thing to do. But, I have great faith she will do awesome:) She will show you her scar now and say this my heart. She is very proud of it and so she should be:)

We are doing a fundraiser in a week (Sat. July 16th) to try and offset some of the expenses of this upcoming surgery. It will be a Blood Drive & Cookout w/Jewelry and a painting being auctioned off. The location is Victory Chapel Parking Lot: 7830 Normandy Blvd 10am-4pm. Sairah Grace will be providing entertainment through out the day. Callie also has another Vystar donations account that has been opened in her name. The information is under the paypal account info on the side of the page.
Callie enjoying the fireworks!

Please keep Callie in your prayers as her surgery approaches. Also, prayers for our family as a whole during this time. I currently barely have a voice and fighting whatever this crap is I have, I guess stress really does breakdown your immune system! Hope everyone is having a nice summer:) I will update before we leave for California! Thank you to everyone for all support, we are very blessed to have all of you.

Sunday, May 15, 2011

Callie has been doing awesome since returning from California in April. Her appetite has picked up and she is eating quite a bit now. She has put on some weight as a result and grown about an inch since returning from California:)

Callie had a blast at Easter hunting eggs!

Miss Chatterbox, that should be Callie's new name! She talks nonstop, when I think about this time a year ago, she has come so far. Callie is so full of herself and her personality lights up the room.

I received a call from California a few weeks ago, they had already went ahead an scheduled Callie's next open heart surgery. It kinda took me by surprise because I had been plannig to schedule it. So, Callie's surgery is scheduled for August 3rd. We are leaving July 28th. Seems so close and my heart is so heavy about it. But, it is what she needs and its one step closer to having a completely mended heart:)

We are thankful we have the summer to spend doing whatever we want as a family and we plan on making the most of it:) Callie continues to be in love with the beach, so I'm sure our summer will include lots of trips to the beach!

Thanks for checking in!

Friday, April 1, 2011

Visit with Dr. Hanley

Our meeting with Dr. Hanley went well, he is such a kind man. So, he thought Callie's cath looked pretty good. The pressures were lower but not low enough to start thinking about her Glenn. He wants to get rid of Callie's 2 central shunts she has and place one big shunt, that way she will get more blood flow and that's one step closer to the Glenn. He said, placing the bigger shunt will allow her more time for her pressures to hopefully come down even more. And then hopefully at that time she will be a better candidate for the Glenn.

So as far as surgery, she does not need surgery at this moment. But, we will be back in July or August for her to have another open heart surgery and have that one big shunt placed. All in all, she is moving in the right direction and that's all that matters:)

Dr. Hanley did say, that her oxygen saturations need to be 75 or greater. If she dips lower before we are scheduled to come back then we need to go ahead and make the trip back to California. Right now, she is pretty steady in the low 80s so we are pretty sure she will make it to the 1st week of August. That is when we are aiming for since Will will have more vacation then.

Callie and I are flying out tomorrow at 11am. We can't wait to get home =) Thank you for all the prayers and support during the trip. Callie is proof of the power of prayer! Without all the support, I'm not sure how we would do it because it's definitely not easy at times. But, we will do whatever we haveto for our baby!

Sleepy Girl

Callie was discharged at around 11am, we went back to the room and she climbed right in the bed and slept while I took a shower. She was so tired and relieved to be out of that hospital. I had to wake her up so I could go get something to eat...the last time I ate was like 2pm yesterday! I was starving!!!!!!!!! Poor baby, slept the whole entire time I ate and then came back to RMH and slept another 4hrs. She was able to do some arts and crafts tonight which she really enjoyed=) Please pray for her, she is having a hard time understanding why her Daddy isn't here! She doesn't realize he can't just jump in the car and come and see her=( Breaks my heart!

I have a meeting tomorrow at 930am with Dr. Hanley to discuss the results of the cath. I am very anxious to see what he has to say.

Thanks for all the prayers, we are so grateful for all the support.

Wednesday, March 30, 2011

Sweet Baby Girl

Callie did great with her cath and it was only a couple of hours. Although, we waited for ever for a room because of no beds available. But, thats okay...Callie is all settled in her room now and relaxing watching her favorite T.V. show, Caillou.

In recovery, everyone kept saying, how sweet Callie was. She was so good, bless her heart. When it was time for her xray, I told her they were going to take her picture...so she smiled while having her xray. She is really adjusting to her stays in the hospital. Laughing at the nurse and her Mama, despite all what she was just put through. What a trooper!

So, her cath went well and I'm waiting to talk with her surgeon, Dr. Hanley. Her cath results were a little confusing because in order to have your Glenn your pressures haveto be a certain number, which anything below 30 is good. Well..her right side has always been perfect to have the Glenn at a pressure of 22. It's always been her left side that has been on the high side of 40, which is way too high to do the Glenn. Today her pressure on the left side was 30 which was odd because her upper left pulmonary vein that had the stent placed in it last time, once was again narrowed off with little blood flow. So, her pressure on that left side really should be on the high side with a pulmonary vein looking like that plus having that lower left vein being compressed! Her pressures right now, would be ideal to do the Glenn, but the actually circumstances of her heart are not ideal to do the Glenn. I know it is a lot to understand, especially if you haven't lived it. But, I try my best to explain everything in the simplest terms possible.

Long story short, I haveto wait to talk with Dr. Hanley to see what he thinks about everything. I'm hoping I will get to speak with him early tomorrow....fingers and toes crossed!

Thanks for all the prayers, she is most certainly a miracle and continues to beat the odds. I am so blessed to have her as a daughter.

Will update as soon as I can tomorrow. Callie has a lung perfusion scan scheduled and then after that she is being discharged. So, it might be later in the day before I get time to update.

Cath started

Callie was taken back about an hour or so ago. She was nice an loopy from the medicine they gave her before the cath to calm her. She was giggling up a storm, it was hilarious!

Please continue to pray all goes well and the news we recieve is positive.

Will update as soon as I can!

Monday, March 28, 2011

A Long Day...

Callie and I made it to California, but it sure has been a long day! We almost missed our connecting flight in Houston, due to our plane leaving Jacksonville late:/ Callie was a superstar on the flight:)

We arrived in SFO with no place to go because a room still wasn't available at RMH and the Housing Dept. that gets you in a Hotel, never returned my phone call!! Very stressful situation, thankfully Callie's social worker at the Hospital helped to book us a Hotel.

So, we are now in a Hotel and praying a room opens up at RMH very soon! Callie has pre-op tomorrow at around 12pm California time. Her cath is currently scheduled for 11am on Wednesday but that is subject to change, we will know for sure tomorrow after pre-op what time it will be.

Please continue to keep Miss Priss in your prayers. Please pray for me, my stress level seems to be at the max this trip and things just seem to keep mounting up. These trips are never the easiest and anytime things go a little crazy, it really puts me at the edge....especially when Callie and I are 2200 miles away from our family!

Will update tomorrow after pre-op.

Tuesday, March 8, 2011

Growing Up....

Callie is growing up so fast, I can't believe she will be 4 in September! She has been attending a Mommy's Day Out at the Church every Thursday for the past month now. It is from 9-3pm and she just LOVES it:) Her favorite part is all the crafts they do, Callie is very artsy. Everyday, all day, all she wants to do is draw, paint, etc!

We have been enjoying the nice weather here before it gets too hot and taking lots of trips to the park. Callie never wants to leave!

Callie has made a BIG accomplishment, that I am very happy about! She is now potty trained...hooray!!!!

We leave in 3 wks for California, so please continue to keep Callie in your prayers and that good news will come from this trip.

Also, please pray for this little boy, Caleb he is 4 and having open heart surgery next week.

Monday, February 7, 2011

Congenital Heart Defect Awareness Week

It's CHD week, help spread awareness! You think you have it bad, take at look at the picture below of Miss Callie and now tell me how bad you have it!
Help spread awareness this week, here are a few facts about CHD:

•Congenital Heart Defects are the #1 birth defect.
•Congenital Heart Defects are the #1 cause of birth defect related deaths.
•Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
•The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.
•This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
•Though research is ongoing, at least 35 defects have now been identified.
•4-8% born with CHD have Hypoplastic Left Heart Syndrome
•4-10% born with CHD have Atrioventricular Septal Defects
•8-11% born with CHD have Coarctation of the Aorta
•9-14% born with CHD have Tetralogy of Fallot
•10-11% born with CHD have Transposition of the Great Arteries
•14-16% born with CHD have Ventricular Septal Defects

By the way, Callie's defect didnt even make it on the list, just shows you how rare Callie's defect really is.

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held her, I'd waited so long,
It's knowing that I need to help her grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking her sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do her nails look blue?
It's cringing inside at what she's been through.
It's dozens of call to her pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching her sleeping her breathing is steady.
It's surgery day and I'll never be ready.
It's handing her over, I'm still not prepared,
It's knowing that her heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that she'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching her chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little girl who loves playing with her babies,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.
This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)