Caring For Callie

Living In A Dream With CHD......

2012-02-01T12:04:00.001-05:00

The title for this post might not make sense to most but to those who have a child with CHD, I'm sure it will make sense as this post continues. At this moment my child has one of the rarest, most complex heart condition there is, her furture is uncertain but at this very moment she is doing FANTASTIC!! For the first time in a long time, I feel relieved, almost like this isn't real no trips for 1 YEAR but at the same time you never forget her severe things really are. (hence my title for this post)

February 1st marks CHD Awareness month...WHO DO YOU WHERE RED FOR???

1in100 babies are born with a Congenital Heart Defect & CHD kills more kids than all pediatric cancers combined yet gets 1/10th funding. Help spread awareness!

Like most, I had never even heard about Congenital Heart Defects before I had Callie and knew very little about the human heart. Today, I know more than I could ever imagined. Share Callie's story with someone this month or if you know another child with CHD share there story. Raise awareness, get the word out, help give these kids the fighting chance they deserve.

I AM A CHD SURVIVOR!!

Callie her follow up with cardiology here yesterday and everything looks good! She is just over 38 inches tall and still 25lbs. my string bean;) Thanks for checking in and remember FEBRUARY IS CHD AWARENESS MONTH:)

1 year....

2012-01-29T21:44:00.000-05:00

We arrived home this past Tuesday and finally heard from Callie's surgeon, Dr. Hanley on Wednesday afternoon. Are you ready for this?? Callie doesn't haveto go back for 1 YEAR!!!!! We were shocked to hear those words, since 3mths. of age she has been traveling to California every 4-6mths.

Dr. Hanley said, he was happy with Callie's numbers and if she didn't have such a complex heart defect then he would proceed with Glenn. But, given Callie's situation he believes it is best to leave her and allow her more time to grow and then next January check her pressures again. Since Callie doesn't really grow that fast, he believes coming back in 6mths would be a waste of trip. Callie is stable and doing great with the shunt he put in back in August, this past cath did show the upper left pulmonary vein was pretty much closed off again even though he surgically fixed it last time. Unfortunately, it is pretty much a given that it is going to be fully closed off our next trip which Dr. Hanley said, isn't the ideal situation but he can work with it;) (he is so awesome!!) So, the only reason we would haveto return to CA sooner than a year would be if Callie's oxygen starts to drop and her stats stay low for long periods of time, Dr. Hanley said. This would probably mean she is out growing her shunt. Which there is a strong possibilty this could happen but only time will tell. If she does out grow it before a year the she would have her Glenn at that point.

We are so exicited just be home and know there are no trips planned back for a while. It is an awesome feeling:) You never know what is around the corner....nobody could have predicted Callie would have had 3 heart surgeries last August all in a matter of days of each other, just like it couldn't have been predicted that she wouldn't have surgery this trip and that her numbers look so good and that her aorta situation is a million times better now. Sometimes it can be rough all the ups and down we go through on this journey, but no matter good or bad....we just have to hang on and roll with what life throws at us;)

Surgery OR No Surgery????

2012-01-20T20:32:00.000-05:00

We recieved our answer about surgery a few hours ago. Dr. Hanley said, No surgery right now!! He was happy with most of Callie's results from her cath but wants her pressures to be a little lower. So, he is hoping by giving her a little time that it will come down from 2.8 and get closer to 2.0.

So, when is our next trip out here, you might ask!??! Probably in 6mths or sooner. This is yet another answer we are waiting on, he is supposed to call us on Monday to discuss with us Callie's results from the cath and tell us when he wants her back.

I think at this point we are a little thrown off, overwhelmed but happy she doesn't haveto go through another surgery at this time. Nobody wants to see their child go through what we have had to watch our child go through and you can't possibily understand until you have experienced it. With that said, we were hoping for Callie to get this surgery done and over with! So, she and us as a family could experience a stretch of normal life lasting more than 6mths and give her a chance to just enjoy being a child and not have to put her through this stress every so many months. Uprooting our lives every so many months has been hard, never knowing what to expect when we get out here.....we fear for Callie's life and whats ahead for her, we struggle to keep things going back at home while being in CA but this is our lives! And as hard as it can be at times and all the ups and downs we are handed, I would not change it for anything because we have the most precious, silly, hard headed, beautiful little girl and she is worth every bit of it. We love you Callie Ann and we will continue to do whatver it takes to get your little heart mended for good and one day all you go through will be a distance memory but a huge part of you at the same time. We can't wait to see the awesome things God has in store for your future!

"I will go before you and make the crooked places straight"
Isaiah 45:2)

Sorry for rambling but thanks for stopping by and checking on Callie:) Just needed to vent a bit;) I will continue to update as we figure out what is next. We hope to be home sometime next week, we are in the process of getting plane tickets figured out.

The waiting game....

2012-01-18T23:29:00.000-05:00

We thought we would have an answer from Callie's surgeon, Dr. Hanley by now...but no such luck!!! We were very eager to get out of the hospital today after a sleepless night. Callie had to have a lung perfusion scan before she could get discharged, it took forever for them to come get her for the scan so Callie wasn't discharged until 415pm!!! Better than another night in the hospital.

She is exhausted, feel asleep after dinner and has been asleep since. They did switch Callie's blood pressure medicine to every 12hrs!! YAY! So, no more every 6hrs:)

This is the plan as this afternoon, we are hanging around and keeping her surgery date of Monday for now. When Dr. Hanley finally does get all the info from Callie's cath (which from what we are told won't be till Sat. or Sun) we will hear from someone at that point, as to what he's exact answer is. The cardiac team did discuss her in conference this morning but without Dr. Hanley there it is all irrelevant. We will more than likely find out Sunday night the for sure answer!

Please pray the Lord gives Dr. Hanley the knowledge he needs to make the best possible decision for Callie. Will update as soon as we find out the answer!

"I wanna go home"

2012-01-18T01:52:00.000-05:00

Callie did very well with her cath. She was in the cath lab from 1130am to 530pm, Callie is such a unique patient;) She always has the longest cath you can possibily dream of! LOL From the moment we arrived till she was put to sleep and then when she came out of the heart cath, all she has said is, "I wanna go home!!" Poor baby:( But, she is a lot more happier at the current moment and watching her favorite movies. She is spending overnight in the hospital and will be discharged tomorrow.

I know everyone wants to know, Is she having her Glenn?? So, that brings me to the result of her cath. As we all know, Callie is very complex so it is a challenge to explain every detail, so as always I will do my best and feel free to ask any questions;)

Let me start with, Callie is probably NOT going to have her Glenn at this moment.Her pressure that they go off of to determine whether or not she can have the Glenn is borderline to high. The perfect number is 2.0 and Callie's is 2.8, the main reason is because Callie's main central shunt she had placed back in August is a BIG shunt for her and her lungs are getting TONS of blood flow to her lungs which in returns makes her pressure high! They think if she would grow and put on some weight and more or less grown into her shunt then that pressure could possibily come down. BUT, Callie has a major thing working against her in the weight gaining department the narrowing in her aorta which is actually better and there was nothing that could be done to make it better in the cath lab, so they just left it alone is putting extra stress on her heart which it turns makes her heart work harder and therefore she burns twice as many calories and can't gain weight. Callie has been 25lbs since July!!! All this being said is from the cath doctor. We are supposed to hear the finally word from her surgeon tomorrow about surgery and the future plans for Callie.

The results aren't exactly as we hoped but the Lord's timing isn't always our timing;) Which is hard sometimes to accept. Tonight, we are just thankful she did well and that she is doing so well despite everything going on in her little body.

We hope to be out of here and back to the Ronald McDonald House as soon as we can tomorrow. I will update when we find out the final word from her surgeon.

Thank you for all the prayers and for everyone who called and text to check on Miss Priss, it means a lot and we love all of you.

Heart cath tomorrow.....

2012-01-17T01:29:00.000-05:00

So, tomorrow is Callie's heart cath. Everything is riding on the results of this cath to determine whether or not she can have her Glenn she so desperately needs.

Please everyone pray for a safe, easy cath with GREAT results. Callie's cath is scheduled for 930am our time. So, everyone back at home that 1230pm is your time. Please take a minute and stop to pray for Callie around then, we need all the prayer warriors we can get, praying for our little girl.

I will update as much as I can tomorrow to keep everyone up to speed.

Also, I have been asked by a few people if it is okay for them to share Callie's story and the blog....100% YES;) Please feel free to share, it never hurts to have an extra person praying;) Also, Callie's story helps spread Congenital Heart Defect awareness to people!

Quick Update

2012-01-14T00:02:00.000-05:00

Pre-op went well today. In fact, Callie did so great at the end she was rewarded with a babydoll by the echo tech:) She is such a trooper and growing up so fast. All Callie had to have today was an echo and ekg. They decided not to do blood work because Callie's veins are shot and it wasn't necessary to get a chest xray. So, today was pretty easy.

After the echo and ekg we were given a room to talk with the physicians assistant, Heidi. She had saved Callie a yummy cupcake from "Sprinkles"! She has been seeing Callie since we started coming here back in 2007. It may suck to be here but its nice to be welcomed by such wonderful, caring people!

Callie is all set for Tuesday, we haveto be at the hospital at 8am and her cath is scheduled for 930am.

We are going to relax and enjoy the weekend with Callie:) Hope everyone has a great weekend!

Thanks for checking in.

Day of Travel...

2012-01-13T00:36:00.000-05:00

We have arrived in California:) We had 2 great flights, Callie was awesome on both flights. We were able to get into The Ronald McDonald House which I am truly thankful. If you come here enough, you know getting in this RMH can be a challenge at times!

Tomorrow is pre-op day! A day filled with echo, ekg, chest xray, blood work not the most exicitng day but hopefully we can make it short and sweet.

Callie is fully aware of why she is here this trip and it breaks my heart. She will tell me, "Mommy, I dont wana have another surgery!" What do you say to that?! But, we talk about it and how we are going to do fun things while we are here also and talk about her other heart friends who are having surgery. Callie finds comfort in the fact she is not the only one and I'm happy that helps her feel a little bit better about what she is fixing to have to go through once again.

One another thing I thought was kinda of funny, that happened in the airport at Jax today. We were just sitting killing some time and this man kept walking by us and finally stopped and asked, "Is she the little girl with all the heart problems?" Will said, yes! The man had seen her on the news a few times and I think he was kind of amazed to see her in person. It is hard to grasp at times that this little 25lb, 4yr old has had so many surgeries but looks so AWESOME she is truly amazing and the Lord gets all the glory for what a miracle she is.

With that said, many of you know we almost lost Callie twice back in August due to 2 aorta bleeds which resulted in 2 emergent open heart surgeries. I have never been so nervous to start this process again, at the same time I am very hopeful that Callie WILL GET HER GLENN and she will have a little break for a couple of years.

Please join us in praying for a great heart cath with awesome results that lead to Callie receiving her Glenn. With continue prayers that the Lord will continue to prepare her little body for this upcoming surgery and that she does OUTSTANDING:)

"For where two or three are gathered together in my name, there am I in the midst of them."Matthew 18:20

FYI- Callie's heart cath will be this coming Tuesday at 930am. That time could be changed but right now thats where we stand.

Thanks for checking in, will update tomorrow! Thank you again for all the support we are receiving from everyone, thank you just doesn't begin to describe what it means to us!( I know I say it ALL the time but we are so blessed to have so many great family and friends)

Merry Christmas 2011

2011-12-25T18:09:00.002-05:00

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!

2011-12-21T11:56:00.002-05:00

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!

Thanksgiving 2011

2011-11-26T20:36:00.000-05:00

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.

Simply Thankful

2011-11-18T22:24:00.001-05:00

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!

Trick or Treat 2011

2011-11-13T16:04:00.001-05:00

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;)

Meet Pebbles!

2011-10-25T23:03:00.000-04:00

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.

Meet The New Cleaning Lady!!!

2011-10-13T16:46:00.000-04:00

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!

2011-10-09T21:04:00.000-04:00

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.

2011-09-25T21:25:00.002-04:00

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.

2011-09-14T14:18:00.002-04:00

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.

Free at Last:)

2011-08-27T19:25:00.000-04:00

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.

2011-08-21T02:28:00.001-04:00

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.

2011-08-18T01:08:00.001-04:00

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.

11th Heart Cath

2011-08-17T01:59:00.000-04:00

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:)

Prayers Please...

2011-08-16T13:04:00.000-04:00

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.

Moving Along...

2011-08-15T01:41:00.000-04:00

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.

Extubated :)

2011-08-13T04:28:00.000-04:00

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!

A Good Day

2011-08-11T02:41:00.000-04:00

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.

Urgent Update

2011-08-09T12:43:00.000-04:00

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!

Post Op: Day 3

2011-08-06T23:36:00.000-04:00

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

Post Op: Day 1

2011-08-05T03:51:00.000-04:00

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!

So far.....

2011-08-04T12:10:00.000-04:00

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!

Surgery Completed!!!!

2011-08-03T20:09:00.000-04:00

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....

2011-08-03T13:33:00.003-04:00

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

2011-08-03T00:04:00.001-04:00

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.

Go Home?!

2011-07-29T22:23:00.000-04:00

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!

Heading out....

2011-07-28T00:30:00.000-04:00

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!

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

2011-07-08T21:15:00.000-04:00

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.

2011-05-15T16:14:00.001-04:00

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!

Visit with Dr. Hanley

2011-04-01T18:09:00.000-04:00

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

2011-04-01T00:27:00.000-04:00

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.

Sweet Baby Girl

2011-03-30T23:06:00.001-04:00

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

2011-03-30T15:31:00.000-04:00

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!

A Long Day...

2011-03-28T21:52:00.000-04:00

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.

Growing Up....

2011-03-08T15:27:00.000-05:00

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.

Congenital Heart Defect Awareness Week

2011-02-07T17:32:00.002-05:00

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)

Thinking out loud......

2011-01-26T19:50:00.000-05:00

Callie had a cardiology appointment on Monday and everything was great! Dr. Lacey said, it looks as if that upper pulmonary vein is still open. So, that means that possibly the stent that was placed in October is working and still in place. Which is AWESOME! But, at the same time brings a ton of emotion along with it.

Callie goes to California in March for another heart cath. At that time we will find out for sure if that stent did its' job. If it has, then that could possibly mean a very risky surgery for Callie to move that lower vein so it's not being compressed anymore. Then, after that she would be ready to have her GLENN procedure!!!

I'm happy that she might actually reach her Glenn but at the same time I'm scared to death. Yes, everything Callie has been through has been scarey. But, this procedure to remove that lower vein from being compressed is extremely risky for her due to the fact she has to be on the heart-lung machine. And for Callie due to her anatomy makes her exceptionally high risk. My daughter has came so far and did so awesome that my biggest fear is the unthinkable to happen, now. I've feared for Callie's life from day one but as she gets older I fear more and more because of the odds she is up against. There's not a worst feeling in the world than getting on a plane every 3-6mths and wondering if this is the time I might not return with my baby.

I hate to haveto write all of the above. But, this is the reality Will and I live in everyday. And at some point, it's time to be real with everybody in your life. I don't believe I have ever written a post like this before but now felt like the right time. Sometimes, I feel as if people don't get it and don't realize just how serious Callie's heart defect is. We don't travel to California all time because we choose to, we do it because WE HAVE TO!!

Despite my fears, I have all the faith in the world that the Lord will continue to carry Callie through her journey and continue to help her surpass every obstacle, that she may be faced with. As for me, I will continue to be the best Mom I know how to be and be by her side every step of the way.

I plan on posting some new pics very soon:) I know some of you have been asking and I'm sorry. I've been slacking! Very soon, promise.

Wishing everyone a Happy New Year!

2010-12-26T18:45:00.003-05:00

Hope everyone had a Merry Christmas! Callie had a blast this season, she really understands the Santa thing this year and was so exicited to leave him cookies and milk:)

Callie is doing wonderful, growing like a weed. Still only 22lbs. but as long as she is growing that's all that matters! Latley, it seems everyday she is saying a new word. She is starting to come along with her speech, she has made so much progress since this time last year. So, we are very happy!

She maintains stable from a heart standpoint and will return to California in the end of March, possibly early April. She did have a breathing episode shortly after returning from California in October, we are praying that this was NOT a sign that the upper vein that has a stent in it did not hold. Her stats remain stable but there is no way of telling about that upper vein other than through a cath, so we will wait and see.

Thank to everyone who constantly lifted Callie up in prayer and offered support to us this past year. We will never be able to express how truly grateful we are.

We are hopeful that 2011 will hold great things for our family and most of all Miss Callie. Praying for that little twist of fate that will get her the surgery she needs, inorder to get a break from all this for a bit.

Hope everyone has a Healthy and Happy New Year!

Results of cath

2010-10-14T19:26:00.003-04:00

First of all, sorry for the lack of posts but things have been hectic lately and it's hard to sit down and type when I'm by myself in California with Miss Priss!

So, Callie did GREAT with her cath, she was able to go to the general floor instead of the ICU after her procedure. It's been forever since we've went to the floor, she always required ICU the past few times. Thankful she did so well this time:)

Her cath results overall were good, she is stable and does not require a surgery right now. But, the left upper pulmonary vein that Dr. Hanley worked on in April was almost completely closed off again (NOT GOOD)!!! And the left lower vein is still being compressed, that isn't going to change until something surgical is done to fix it. A stent was placed in her upper pulmonary vein to see if that will work to keep the stubborn thing OPEN. Fingers crossed that it works. That vein has to remain open in order for her to be a candidate for her Glenn surgery that she so desperately needs.

Callie has been saying home, Daddy and Nana the whole time she was in the hospital, she misses everyone so much and I know she cannot wait to be back :)

We fly home tomorrow and will return to California again in 6mths for another cath to once again evaulate the situation.

These trips are only getting harder as she gets older in one way, but in the other she is becoming more and more used to the hospital, nurses, etc. And as a result she is an ANGEL when she is there and helps the nurses when it's time to take vitals and says Hi to everyone she sees:) She is something extraordinary and Will and I are so blessed to have her as a daughter.

Trip #????

2010-10-03T21:35:00.003-04:00

Well, we are off to California once again a week from tomorrow!!!! So, this is trip number.....well,not really sure, I'm starting to lose count we go so much!!! Callie has pre-op on Tuesday the 12th and heart cath on Wednesday. Please keep her in your prayers that all goes well and she only needs to spend ONE night in the hospital.

Praying hard for good news, Callie has been doing really well and looks great. Praying the same is true on the inside!

Please, also pray for Callie having to be away from her Daddy, it gets harder as she gets older, going without seeing him for days at time! She misses him a lot when we are there and it breaks my heart to see her cry for him! Pray that a room will be available at Ronald McDonald House and for safe trip.

Thank you for all the prayers and support, we are grateful for everyone who is praying for our little girl and the family.

Happy 3rd Birthday, Callie Ann

2010-09-04T22:06:00.004-04:00

Callie turned the big 3 today:) I can't believe my baby is already 3, time sure does fly. Callie is such a blessing and we are so very thankful for her.

Happy 3rd Birthday Bean, Mommy and Daddy love you so much! We look forward to celebrating many more Birthdays with you and watching you florish over the next years to come. You are such a beautiful, incredibly strong little girl and we know you are destined for great things.

Chunky Monkey:)

2010-08-09T19:42:00.004-04:00

Callie had a cardiology appt. on Friday, at which she weighed 21 lbs. That's my Chunky Monkey, we all have been working hard to get to that mark!!! Lots of trips to Dairy Queen, McDonalds and any other high fattening places you can think of:) Whatever Callie wants, Callie gets!!!! I believe Dr. Lacey was very impressed with that 21 lbs.

Callie from a cariac stand point is doing well, the only concern is still her lower left pulmonary vien. But, we will see what is going on with that in October when we go to California for Callie's 10th heart cath.

Next month, my Bean will turn the big 3!!!!!!!!!!!! I can't believe it.....time sure does fly.

July 2010 so far......

2010-07-08T20:01:00.009-04:00

It's been a while since my last post, there's not much going on with us:) Callie remains stable and doing great, she actually has a cardiology appt. tomorrow. We are hoping for some weight gain. Callie hasn't gained any weight in about 6mths now:( Despite, even eating better since her last surgery. So, we will see what that scale says tomorrow!!!

We didn't really do anything for July 4th. Will had to work and Callie doesn't really care for the fireworks. So, Callie and I just sat at home and watched them on T.V.

The following day my Mom and I took Callie to a place called PUMP IT UP, it is filled with gigantic inflatable slides, bounce houses, etc. This was her first time and once she got used to it, she had a blast. She was worn out when we left, which is exactly what she needed:)

Enjoy the pics of Callie in her July 4th outfit and from Pump It Up.

Summer Time

2010-05-31T00:50:00.005-04:00

Our family has been enjoying the HOT weather this summer, whether its at the beach, out in the yard, where ever it may be, just time together:)

Hope everyone enjoys their summer with family and friends! Stop a minute, to take in what's before you and be thankful. Sometimes it's easy to take for granted the everyday little things because time just keeps on rolling.

By the way, Callie is doing AWESOME:) Words cannot express what a GREAT feeling it is to be able to say that!!!!!!!!!!!

ALL BETTER:)

2010-05-21T21:57:00.001-04:00

Callie woke up this morning and was just quiet. But, within about an hour back to being Callie:) Hasn't vomited at all today! Praise the Lord!!!! Praying whatever it was will stay gone. Looking forward to a day at the beach with Miss Priss:) Hope everyone has an AWESOME weekend.

Can We Get A BREAK?????

2010-05-20T19:17:00.001-04:00

Callie finally returned to her normal self, built her strength up and was eating GREAT:) Until, last Friday night.....she started vomiting. Each hour it seemed to get worse and worse. We just thought it was a stomach bug and it needed to run it's course. But, by Tuesday she wasn't really any better, still vomiting just not as bad and still very NAUSEOUS. I able to keep her hydrated because of her g-tube, otherwise she would be in the hospital. She has had NO fever or diarrhea along with this vomiting. Called the pediatrician yesterday to get her in to be looked at. So, today we went in at 9am, we were sent straight to Wolfson's for X-rays and blood work. She said, something is NOT right, you don't have a stomach bug for a week. She wanted us to got to the ER but I'm to familiar with the ER and I wasn't going to go sit for 6hours so my child could catch something else and then in the end for them to send me home with NO answers. Went to Wolfson's, had all the test ran and then back to the pediatrician where we sat for 2 1/2hrs waiting on results. Everything came back NORMAL!!! The next suspicion was a urinary tract infection, I guess sometimes, you can vomiting with those!?! Guess What???? NO UTI!!!!! In the end, we were sent home and to follow up in the morning to possibly have more testing, if she is not better. So far tonight she is the same:( As of tomorrrow it has been 1 week since this all started and we have no idea what is causing this vomiting. Praying it will STOP just as FAST as it CAME. Poor baby does NOT feel good at all, she just lays on the couch watching Mickey Mouse. Please pray for healing of her little body (and that nothing is seriously wrong), in time for the weekend and possibly a day at the beach. We have yet to got to the beach since we've been home:(

CT Scan, Discharge and Home

2010-05-05T18:23:00.003-04:00

Callie had her CT Scan done last Thursday and the results were not surprising. In order to fix the issue she would have to be on bypass during surgery. So, we will return in October for Dr. Hanley to reevaluate the situation and go from there. This is an issue that has to be resolved in order for Callie to have her Glenn. But, we will take it one step at a time. We know Callie will get to her Glenn, one day:)

A few hours after her CT, Callie was discharged and on Saturday we flew home:) Callie was discharged with Methodone and Ativan, so for the first couple of days all she did was sleep. So, I cut her from every 6hours to every 12hours and what a difference. She is finally awake enough to get up and walk around:) The hospital was weaning her slowly due to her withdrawal issues but I think they had her a little too medicated!

Callie's color is sooo much better since her surgery almost 3 weeks ago. It's amazing!! She actually looks pink compared to the shade of blue she has been for so long. I can't wait till Callie gets her full repair, somewhere down the road! Her fingers and toes will be pink then:) In Addition, her breathing is no longer heavy and loud. That shunt definitely needed to be replaced!!!!! Now, we just haveto put some meat back on her bones:)

Can't wait to start going to the beach this summer with Miss Callie! She loves the sand:) We will enjoy our time at home over the next several months. Then, head out again in October for another heart cath. Thank you to everyone for all the support you gave us during this last trip to California. We are very thankful for everything and cannot say, thank you, enough.

Also, please keep 2 very special little girls in your prayers. Miss Reagan who went in for heart surgery this morning and is hopefully getting her full repair:) And baby Arden who is supposed to go in tomorrow for her heart surgery. Please pray that both of their surgeries are successfully and that there are no complications.

Change Of Plans

2010-04-28T22:35:00.002-04:00

Callie was supposed to have another surgery this past Tuesday. But, surgery was cancelled. Dr. Hanley was under the impression he had only did an upper aortapexy in the past. So, Tuesday he was going to do a lower aortapexy. But, actually she has already had both upper and lower aortapexy. Futhermore, he is not so sure it is her aorta that is laying on her lower pulmonary vein after all. After looking over previous caths, they are starting to think it might actually be her spine pressing against her pulmonary vein!!!! That totally caught me off guard! Now the plan is to do a CT scan tomorrow morning to find out for sure before proceeding with anymore surgeries. She is supposed to go in at 10am, please pray everything goes smoothly and quick.

On a different note, Callie is now out of the ICU and moved to the 3rd floor today. If all goes as planned and no complications with the CT scan she will be discharged tomorrow afternoon/evening. She is doing AWESOME, thank you for all your prayers.

Dr. Hanley will look at her CT scan tomorrow and from there we will find out if Callie will have another surgery now or if he will wait before doing anything else. Will update as soon as I get any new information. New pics to follow in the next day or so:)

Prayer Request For Heart Friend

2010-04-26T03:52:00.003-04:00

Please keep our heart friend, Reagan, in your prayers today. She will be having a heart cath to find out if she will need another open heart surgery. Please pray for everything to go smoothly and for positive news. Here is a link to her blog: http://reflectionsofreagan.blogspot.com/

EXTUBATED:)

2010-04-24T13:39:00.002-04:00

Callie had her breathing tube removed yesterday around 3pm:) Hooray:) She is doing very well on high flow oxygen and they have been weaning that down fairly fast. The hope is by tomorrow have her on regular oxygen! Her x-ray this morning was a little hazy compared to yesterday but overall not too bad. Callie is now off most of her drugs but is still very sleepy. Hopefully, she will wake up some today, to enjoy some Mickey Mouse Clubhouse! Callie's favorite show:)

Callie is schedule for surgery on Tuesday to have her aortapexy. Please continue to keep her in your prayers. Callie has been through soooooo much and I hate to put her through another surgery. It breaks my heart. There isn't anything harder in this world than having to watch your child hooked up to a million things and in pain. Please pray for the continued recovery of her lungs and little body, for the STRENGTH that she will need for this upcoming surgery and that the Lord will be with her every step of the way.

As always, we are so grateful for all the support.

One day at a time....

2010-04-22T15:08:00.001-04:00

Almost there!! Callie was going to be extubated this morning. But, she didn't tolerate the bare minimum settings on the vent this morning:( So, they are going to give her another day of rest and reevaluate in the morning. Her x-ray was basically on changed from yesterday morning to today. Please pray for total healing of Callie's lungs and we can get this yucky breathing tube out of her VERY soon!

We were able to speak with Dr. Hanley last night and he thinks Callie has done well enough, that she would do just fine having her next surgery. Which would be the left thoracotomy (that I spoke of in the last post) where he would remove the aorta off the lower pulmonary vein. My baby is such a tough cookie! It's so hard to have to watch her go through all this, but I know these surgeries are what she needs and that light at the end of the tunnel is getting closer and closer. We are so thankful to Dr. Hanley for all he has done for our little girl and continues to do. He is such a blessing to so many people:)

We ask for prayer for healing of Callie's lungs, this upcoming surgery, financially since Will continues to be out of work to be here to support his little girl and me. Just for overall strength for Callie, that she continues to pull through like a champ:)

Thank you to everyone for all the support.

Miss Priss Update

2010-04-20T18:47:00.002-04:00

Callie is doing awesome:) Both her chest tubes have been removed and things are slowly dropping off!!! She is still on the ventilator just to give her some extra rest time but the plan is to extubate tomorrow:) YEA!!!! Not too much more to report, which is good.

On the other hand, we are waiting to speak with her surgeon, Dr. Hanley, tomorrow because he had told us after her surgery on Friday that if she recovered well that he could go ahead and do another surgery to remove her aorta off her lower pulmonary vein on the left side. That surgery would be a left thoracotomy which is through her back like her past surgeries. So, not sure what the decision will be on that but we will see what he has to say. The reason for going ahead in doing this surgery is so she doesn't have to in 6mths.

So, if 6mths from now what he did with the upper pulmonary vein and then possibly this surgery with the lower vein worked then she would be a candidate for her Bi-Directional Glenn:) Which would be so AWESOME!!!!!

Will update tomorrow with a follow up post of what's going on.

Doing Good:)

2010-04-17T19:22:00.004-04:00

Callie is doing very well. No major changes today, just letting her rest. Her x-ray this morning showed her left lung was a little hazy but nothing much, yet. We are waiting to see if her lungs suffer from reperfusion, it usually happens when you increase the amount of blood flow to the lungs.(like Callie has had done) It takes about a good 48hrs. to show up. So, so far so good. But, I won't be satisfied until Monday's x-ray then I will safely say, No reperfusion injury. If it does end up showing up, it just means a little more time on the ventilator. One day at a time:) Overall, everything is going GREAT! We are so thankful for how awesome our lil trooper is doing. She is such a tough cookie:) Will update again on Monday, hope everyone has a great weekend. Here are some pics.

ALL DONE:)

2010-04-16T16:56:00.001-04:00

Callie is all done, just waiting to see her! She did very well. Thank you for all the prayers. Will update later.

Surgery Started

2010-04-16T12:17:00.002-04:00

Callie was taken back around 730am for her 5th heart surgery. Please keep her in your prayers that the Lord will be with her and work through Dr. Hanley's hands. I will update as soon as we here anything, but we usually do not get updates. So, the next post will probably be saying, she is all done. Fingers crossed, that this surgery isn't as long as her previous surgeries! Will update soon.

On The Right Track......

2010-04-15T14:14:00.002-04:00

Callie is doing much better:) Her lung is finally recuperating from the trauma of the heart cath on Monday. Today's goal is just to keep her comfortable and sedated. Hopefully, everything will continue on this track and she will go into surgery tomorrow morning as planned.

We were able to talk to Dr. Hanley yesterday morning and the plan is to replace her shunt with a bigger shunt and he also wants to patch her upper pulomary vein to prevent it from narrowing all the time. He is pretty positive that this will work for her and stop that vein from narrowing every 2 seconds. Dr. Hanley still has hope (even more hope now than ever before) that Callie will make it to her Bi-Directional Glenn, as most of you know, that is the surgery Callie needs to get. But, has had some bumps in the road that has prevented her from getting that surgery. The long term goal is too bring her back in 6mths-a year depending on her progress and do another surgery to remove the aorta of that lower pulmonary vein. And at that point and time, she would possibly be able to have her Glenn somewhere down the road. Which makes us all very HAPPY:) We have full confidence in Dr. Hanley and are so thankful for all he has done for Callie because without him our daughter might not be here today. He is an amazing man and I LOVE HIM:)

Please continue to pray for a quiet day and that things continue in an upward trend and Callie will be good for surgery in the AM. I feel very confident that the Lord has been preparing me for this over the past few days and this is what Callie needs. I know the Lord will see her through this and be with her every step of the way. Will update again in the morning.

Heading Into 5th Heart Surgery..........

2010-04-13T16:27:00.000-04:00

Callie is doing well, her cath was about 2hrs this time. She was finished about 745pm and she has been resting in the ICU since. The results of the cath showed that really nothing had changed since the last cath in January. Her right shunt is smaller and now TOO small for her and the right upper pulmonary vein was narrowed once again. But, everything else remained unchanged. So, they balloned open that vein again and that was about it. Callie is still resting on the ventilator, her left lung is suffering some. So, it needs a little time to heal. The left lung is her worse lung of the two, so when anything is done it hits it hard sometimes.

The game plan for Callie is to have her right shunt replaced with a bigger shunt. She is scheduled for Friday as of right now for surgery. It's always hard sending your child into a surgery but this upcoming one is weighing exceptionally hard on me. It's been a year and half since Callie's last surgery and it's been so nice. It's very hard to send her into another one but I know she needs this shunt replaced badly and replacing this shunt will hopefully get her breathing back comfortably. And all around in a better place. VERY HARD!!!!!

Right now, it's a little hard for me to sit down and gather my thoughts. So, please forgive me if there are things I haven't explained or are forgetting. Will is hoping to fly out on Thursday and will stay as long as he can. It's very hard on him to be away from Callie during times like these. It just very stressful in general to have your family split up in such an emotional time. I will update as things happen and if anything changes. I appreciate everyone and all the support and prayers everyone has sent our way. Please keep Callie in your prayers, for a successful, uneventful surgery and a speedy recovery.

WE ARE HERE!!!

2010-04-10T11:54:00.000-04:00

We made it to California and had pre-op yesterday. Everything went well. Callie is scheduled for 11am on Monday. Praying everything goes fast and smoothly!!!!! Will post more on Monday. Please keep Callie in your prayers and that we are home very soon with GOOD NEWS!!

Bye, Bye Florida...Hello California:(

2010-04-08T23:20:00.000-04:00

Just wanted to let everyone know, that we leave early in the morning tomorrow. Callie has pre-op at 2pm and then we have the weekend to rest up for her heart cath on Monday. I believe her cath is scheduled for 8am. Please keep us in your prayers that we have a safe trip and that good news is in store for our little girl.

Easter 2010

2010-04-04T21:23:00.015-04:00

We had a wonderful Easter. Callie had a blast hunting for eggs, I think she would have did it all day:) Enjoy the pics.

California...Again

2010-03-14T22:39:00.002-04:00

I apologize for not updating lately, but I really haven't felt like it. To be 100% honest! Callie is doing okay. Hanging in there, I guess you could say. We will be heading back to California on April 9th. We've only been home just over a month. The first 2 weeks we were home, went great. Then, it was like someone flipped a switch and Callie's breathing got harder, she turned dark blue in her hands and feet again and her oxygen returned to the 60's awake. Exactly, how she was before the trip in January. She is also struggling to gain weight, she has shot up in height and her body can't keep up. Her appetite hasn't been the best latley, either:(

Will and I have been very stressed the past few weeks, just hearing Callie and how loud her breathing is, stresses us out. Being so far away from the one place that gives us hope and is capable of dealing with Callie, is very hard. We wish so much that we lived closer to California. If we are ever able, we will definitely be moving closer or to California. We can't ever get settled, when we haveto pick up a travel back to California every 2 seconds. Just like, we looked into buying a house, to take advantage of first time home buyer credit, etc. But, we soon realized we just aren't able because we never know what is around the corner with Callie, which makes our financial situation to unreliable to make such a commitment as buying a house. Which is fine. All I want, is for Callie to be thriving, happy and healthy. I am very stressed about this upcoming trip because there is a very strong possibilty of open heart surgery. Which I am very scared about. Explaining how I feel, is extremly hard because there is so many emotions that go along with Callie's health, traveling and all the unknowns that lay ahead of us.

Sorry for venting but I am mainly lost for words because I really can't believe what my daughter continues to be faced with. It really is the hardest thing in the world and I would do anything for it NOT to be her! Since, the day Callie entered this world, my prayer has been for the Lord to heal her heart and I will continue to pray that prayer every night to come. That's what I hold onto, that miracle waiting around the corner. In the same prayer, I thank him for blessing Callie with her health and where she is today. Because there are no words that explain, how grateful I am for what the Lord has blessed Callie with because I know there are many children and have seen it first hand, who have a lot more issues (health wise).

Please keep Callie in your prayers, she needs everyone praying for her. As of right now, we leave on April 9th. Fingers crossed, it stays that way. But, if need be, we will leave sooner. It all depends on Miss Callie. Callie also has a donations account at Vystar Credit Union to help out with things. Account #: 702811982 Will continue to update with any changes.

Recent Pics

2010-02-22T22:38:00.010-05:00

Settling In....

2010-02-11T22:48:00.002-05:00

Sorry, for not updating sooner. But, we have been trying to settle back into being at home and getting Callie back into her normal routine. Callie was having major seperation anxiety and wouldn't even sleep unless I was in her room. The past couple days she has been doing a lot better and I finally believe she is feeling much more relax. ( and not like someone is going to hurt her every 2 seconds, like in the hospital)

This last trip was extremly stressful and I am very thankful to be back home. Lots of different things were discussed in this trip. The first cath she had when we arrived, was not good as explained previously. They told us, to talk to the transplant team ( for a heart and lung transplant) because there was nothing more surgically her surgeon good do to fix her and they were almost positive Callie would not reach her next stage of surgery, the bi-directional glenn. The only thing they offered was that, they would do a heart cath as often as needed to sustain her, until heart caths couldn't help her anymore then look into transplant.

Then, she had the next cath and things looked more promising. I then spoke with her surgeon, who said, Callie is a special little girl with a very complex situation and continues to keep trucking along. He also stated, she is out growing her shunt on the right side and that will need to be replaced soon and at the same time he also wants to address the issue with the aorta,it is laying on the lower pulmonary vein and also try to surgical fix the upper pulmonary vein that keeps narrowing on her. This would be open heart surgery and she would have to go on bypass which they have never did with Callie before. This surgery would be another step, in hopes to get her where she needs to be to have her Glenn. Depending on how fast Callie grows and her weight gain will determine when this next surgery will be. Thoughts are it will be sometime in the next 6-8mths.

Callie does not have a schedule appointment to go back to California. Basically, when her breathing starts to get harder, that's when we head back out. Since you cannot see what is narrowing very well on echos , it's hard for the cardiologist to instruct us when to go. Just like we were not supposed to go in January but because her breathing was heavier we did and it is a VERY good thing we went when we did. So, we have no idea exactly when our next trip will be.

This trip was a rollercoaster of emotions. It never gets easy watching your child go through hell, if anything I believe it gets harder as they get older because they understand more. There's not a day that goes by, that I do not fear what the future holds for Callie. But, I try to face each day like Callie. Fearless. Because dwelling on what may be, does not get me anywhere. I've learned to take what the doctors say, with a grain of salt because things change in the blink of an eye. And they do not know the future only God does. It hard to understand God's plan for Callie at times, but I know it is an awesome one:)

Quick Update

2010-01-27T21:24:00.000-05:00

Callie did well with her cath yesterday, it was a very long cath procedure. We handed her off at 1215pm and didn't see her again till 7pm. She stayed intubated all night, due to the bleeding she had in the cath lab. Also, her lungs needed some time to rest. They were able to finish what needed to be ballooned and her pressures look much better now. These results from the cath seem to be more promising for the future, than the last cath. Callie was extubated today around 3pm and is doing well on oxygen. Mainly just sleeping because she was on some pretty heavy sedation when she was intubated. Praying for an easy, smooth night!!!! Will left today around 10am to head back for Jacksonville:( I meet with Callie's heart surgeon, Dr. Hanley, tomorrow at 930. Just to try and get some answers on certain issues that are going on with Callie. Will update more on that later. Hoping to get her out of the hospital tomorrow afternoon, if all goes well:) Will update soon, off to sit with Miss Callie:)

Cath #8

2010-01-25T18:55:00.002-05:00

Callie's cath is scheduled for tomorrow, Tuesday the 26th at 130pm. Please keep her in your thoughts and prayers. A big update will follow in the next day or so, to explain all what is going on with Callie.

Cancelled once again.....

2010-01-22T18:56:00.007-05:00

Callie's cath was cancelled once again, now scheduled for Tuesday. We will confirm that day on Monday. It was cancelled due to Callie spiking a very tiny fever, barely a fever. They had her come in to have blood work and chest x-ray done to be sure nothing was trying to brew. Everything came back good. In fact, her chest x-ray looked better yesterday then it did we she was discharged after her last cath. But, we rather be safe than sorry. So, it was decided to put the cath off until next week. Will was able to fly out here, to spend some time with us:) He will be flying back probably around Tuesday. Thank you for everyone for all the prayers and I will continue to update on any news.

Cath CANCELLED

2010-01-19T21:59:00.001-05:00

Callie's cath was cancelled today. She is now on the schedule for Friday. Today was a very stressful and frustrating day! Tomorrow we are supposed to find out if she will be having a heart surgery. So, at least we will be getting some questions answered tomorrow. Callie hasn't been sleeping the best, she wakes up in the middle of the night very frantic and it takes a while for her to get back to sleep. Also, her eating has declined a little, thinking it's the stress of being away from home and her Daddy. Wish Will could be here with us, it would help to relieve some of the stress! Please continue to keep Callie in your prayers and for good news tomorrow. I could use some uplifting news right about now.

Callie's Cath

2010-01-15T22:49:00.001-05:00

Where do I beginning!?! Needless to say, Thursday was a very long, stressful day. Callie went in about 930am and finished around 3pm. This cath was to look at the pulmonary viens on her left side and collaterals, etc. Callie's right side looks great, getting great blood flow to that right lung. I wish the same could be said for the left side. Her left side has many narrowings everywhere. Her upper pulmonary vien was narrowed again, like always, they balloned that back open along with some collaterals. They were only able to balloon half of what needed to be ballooned because they didn't want to do it all and put her lung through extra stress.For some reason it has went from only a few narrowings back in September now to LOTS of narrowings throughout that left side. Her pressures were also very high on the left side, due to all the narrowings. Her pressures were in the 40's, which for those of you who don't know it should be more like 20!! So, Callie spent the night in ICU as an extra precaution due to some bleeding she had in the cath lab and fluid build up on the left lung. She was discharged today around 1230 and is doing well. They want to bring Callie back on Tuesday to have another cath. Callie will have her cath around noon on Tuesday to finish opening up the rest of the areas that are narrowed. Then on Wednesday the are supposed to have a meeting about her with her surgeon to decide the next step. To decide if it's best to send her home or to do another heart surgery. It's discouraging to get this type of news but trying to be strong and positive that this to Callie will overcome and the Lord can bring her past this. My Mom leaves in the morning, so it will just be Callie and I. Sorry, for not updating sooner but things have just been so hectic and stressful. Didn't even get to talk to GI but right now that is the least of my worries. Please keep Callie in your prayers and for my strength to just "DEAL" with everything. I won't deny it's hard but holding on to the Lord is in control and he will see us through this like he always does:) Of course, Miss Callie is a trooper and is so brave! But, I wish I could be the one going through this and not her. She shouldn't have to endure all this, but I know the Lord has great things in store for her. That's the only way I can look at it. Just so everyone knows, I didn't bring my laptop so that's why I haven't been doing a lot of updating. I haveto use the computers at the house and it's hard to get there and sit down and type with Miss High Maintenance. But, I will do my best so bare with me:) Hope everyone is having a great new year.

We Are Here......

2010-01-12T21:22:00.003-05:00

We arrived safe and sound. Had pre-op done and heart cath will be on Thursday. They had to move her from Wednesday to Thursday because Callie's caths take so long sometimes. GI is also going to see her for her throwing up, so maybe we can get some answers out of them. That's all for now, Callie is cranky and ready for bed. Will update soon. Thanks for all the prayers and support:)

#6 Trip to California.....

2010-01-09T10:49:00.001-05:00

Hi Everyone,

Just wanted to update before I got to busy, before we leave for California. We are flying out Tuesday morning, bright and early at 530am. I hate getting up early!!!!!! Callie has pre-op the same day at 2pm. Then, her heart cath is schedule for 830am on Wednesday morning. If all goes well, we plan on flying home on Saturday. Fingers crossed!!! Will cannot go on this trip, so my Mom is coming with me to help out. Which I am so grateful for because Callie can be a handful at times when she is at the hospital! Please pray for a safe trip and our plane gets there on time especailly since we have pre-op the same day. Please pray for Miss Callie and for the Lord to be watching over her, for good news and for no surgery at this time. Also, pray for the Nurses that Callie doesn't knock them out! LOL She has some what of a temper:)

Christmas 2009

2009-12-27T11:02:00.005-05:00

Callie had a great Christmas:) My house is covered in toys. JOY!!! As soon as she walked into the living room, she wanted to dig into her gifts. I am happy to report Callie's vomiting issues seem to be resolved. It will be 2 wks on Monday that she has been off the Zantac and since being off that med, we haven't had anymore vomiting issues!!!! I'm thinking she was having a reaction to the med. But, time will only tell if it was the med or if we are just having a good period. If she starts vomiting again then we will try the Prevacid and see how that works. If that doesn't solve it then we are on to doing bloodwork, to see if there's more behind this then what meets the eye. But, hopefully Callie will continue vomit free:) Callie has been proving just how stubborn she can be the past few days. Callie still drinks from a bottle! So, I have put my foot down the past 3 days and been giving her the milk in a sippy cup. Well, the child hasn't drank any milk from that thing in 3 days. She refuses!!!! So, I guess we will continue to butt heads until she decides to drink from the sippy cup:) She drinks everything else frim a sippy cup so there's no reason she can't drink her milk from it. Just being hard headed. That's about all going on around here.

Pics from the month of December

2009-12-19T21:05:00.013-05:00

Cardiology and GI appointments...

2009-12-17T22:36:00.002-05:00

Callie saw cardiology on Monday, everything was good. Her weight was still 19lbs. and her height still the same. Everything looked the same since her last echo, which is great. Now, she won't see cardiology until she gets back from her Jan. trip to California. Callie also saw GI on Wednesday for her throwing up, she has been throwing up more and more in the past 3 weeks and I wanted to try and work on get this resolved. Since, we know Callie doesn't have reflux and has had enough swallow studies, upper GI scans done to last her a life time. But, like always he blamed it on her heart and changed her reflux med to Prevacid and sent us on our way. So, we are going to continue to watch her and if things don't start improving we will be doing some blood work. Please pray for her GI issues and we get some relief from the vomiting and our upcoming trip to California. I'm already antsy about this trip! Will update more later with some pics, very tired and ready for bed. Hope everyone is enjoying the COLD weather:)

Callie showing off her skills.....

2009-12-03T21:35:00.002-05:00

Here is Callie doing just a few of the signs she knows, she has learned so many that I have lost track. Some of the ones she does at the beginning are kinda halfway, lazy because she is being shy. But, then she warms up:) I was lucky to even get to video her, usually she always wants to take the camera away from me! LOL

Cardiology Appointment

2009-11-16T18:37:00.003-05:00

Callie saw her cardiologist today, her appointment went well. She weighs 19lbs. and is 32.5in. One pound away from the glorious 20lb mark!!!!!! Callie remains stable, no real changes. Her breathing is a little harder, which we have notice since returning home from California in September but nothing to be too concerned about. Her next trip to California is schedule for the second week in January. She will have her 7th cardiac catherization and possible heart surgery depending on the results of the cath. We are still working on teaching Callie more sign language, since she is not making any progress with talking at this time. We know it will come, just a matter of when. She still says, her same few words and no more than that. Callie is into baby dolls right now and loves carrying them around, putting her diapers on them and rocking them. She is such a character;) I'm thinking she is really going to enjoy Christmas this year! I can't wait to put the tree up and lights outside, she will be so excited to see all of it. Last year, she still wasn't old enough to really care. Hope everyone has a Happy Thanksgiving:)

Halloween Fun:)

2009-11-04T21:16:00.006-05:00

Callie refused to where her costume for Halloween, Nana had bought her a cute butterfly costume. But, Callie is a freak about bugs and because it had antennas, she wouldn't go near it. It was pretty hilarious:) We did however try and dress her up as a cheerleader the best we could. She had fun with that! Our pumpkins we carved turned out AWESOME!! All in all, it was a fun day. Hopefully, next year Callie will actually where her costume. LOL In my dreams;)

Pics from the last couple weeks....

2009-10-24T21:18:00.005-04:00

Callie really loves her swing, she could swing all day long and not get tired of it:)

Sleepy!

2009-10-19T21:48:00.002-04:00

We missed our cardiology appointment today because we over slept. Oops! So, we will be rescheduling but probably won't get in till next month. Callie is doing well, her lastest thing is McDonalds. She loves the fries and nuggets. Which we are all for!! That's all for now, I will update soon. I am very tired and can't wait to relax:) New pics to come of Miss Callie very soon;)

Callie's Blog Page....

2009-10-18T17:11:00.001-04:00

This is now where I will be posting updates on Callie Ann. I will slowly do away with Carepages. I figured this would be easier for everyone, since you won't haveto log in or anything. Callie has a cardiology appointment tomorrow at 9am, so I will update more tomorrow. Hope everyone is enjoying the cool, crisp weather:)