The other night as we were making dinner Caden said to me that he and Cameron were special because they had heart surgery.  I had to tell him that no, it is just him that is special for heart surgery.  He doesn't fully realize how special he is.  Only .01% of babies born in the U.S. have what he has.

I get anxious before his cardiology appointments.  He goes in next month for his annual checkup.  The fact that he has been on annual checkups for several years now is amazing in and of itself.  While I don't believe that he is ready for another surgery just yet, we were told that his next replacement surgery will be between the ages of 7 and 10.  He'll be 7 in November.  It scares me.

There was a moving - and haunting - experience last weekend that will never leave my memory.  I hate to see Caden struggle to keep up with his friends. I hate the fact that he is "special" gets thrown in my face every once in a while.  I don't notice his setbacks most of the time.

Last weekend we went to a hometown football game with friends.  Caden could not keep up with the other kids running around and jumping down and climbing up a small (3 foot?) retaining wall.  He would try so hard to get up, then have to run around the hill to the gate, or sit down and scoot until he could jump off.  By the time he was up or down the kids had run off to another part of the football stadium and he'd be lost, searching for his friends.  This happened over and over and over and it was truly heart breaking.

I watched this for a few minutes, seeing the disappointment on his face over and over again.  I went down and stood by the retaining wall watching the other kids so that I could tell him where they went so that he could catch up with them.  He was so tired with red cheeks and breathing a little heavier than normal.  I told him what he already knows - that if he's tired he can come sit with us and watch the game.  Of course that was not an acceptable option for him.  I kept reminding myself that he's 6.  He wants to run and play and have fun with his friends.  He wants to be able to do what they do - and he SHOULD be able to do.  I hate that for him.  Hate it.  The look of defeat on his face, the look of exhaustion and disappointment.  I would do anything to change that for him.

I worry that this is what happens to him every day at recess.  He won't talk about it which only heightens my suspicions. I wasn't exactly popular in school and the last thing I want is for my child to be left behind or "uncool" for something that he cannot control.  Caden is COOL!  He's so fun and so witty and he deserves to have fun like the other kids without getting behind or tired.

Like I said, I get anxious before cardiology appointments.  I can't help it.  The closer he gets to appointments and the bigger/older he gets the more I worry.  He's eating an amazing amount of food right now, which most likely means that he is not ready for surgery.  When the conduit needs to be replaced the most common signs are extreme exhaustion during normal activities, heavy sweating and a lack of appetite.  He has none of those during the average day.

Being a heart mom is hard.  I am so proud of him, for something that he doesn't even comprehend yet. While on the other hand I am scared to death for him.  I would do anything to make his heart healthy.  To change the fact that he'll need future surgeries.  There is no way around that.  He will get bigger (he's so tall for his age!) and the conduit they placed in his heart as an infant will soon become too small or will calcify over time.

I wish I could convey my own heartbreak in a way that would suffice over text.  I can't seem to bring words to the feelings that I have for Caden and his heart defect.  I don't blame myself for his heart defect.  All I can do is be strong and take things in stride.  I will explain to him the hows and whys of the ways that he is "special" as time goes along, I only hope that he has enough time before the next surgery for him to be able to truly understand and accept the fact that he will need surgery again.  I know if I were him I would be so scared.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

Cardiology Checkup (10/2012)

A photo from Caden's annual cardiology checkup in October of 2012.  Everything looks great!  We go back in one year for another checkup.

Caden's Cardiology Checkup - 10/5/11

We went in today for Caden's 6 month cardiology checkup. We didn't tell him until yesterday because he freaks out about going to the doctor - understandably. Once he realized that it was the heart doctor he calmed down and actually got excited because she lets him watch movies while he gets the echo done. So sweet.

The appointment went as usual, but this time there were two residents in the room with us. That was almost nicer because Dr. Battiste would explain everything in more detail. So... we have good news!!

Caden's pressures are still relatively low, about the same as they were 6 months ago. This is important because the higher these numbers go, the closer he is to needing another surgery. We're hoping for a few more years yet. It seems like we've been saying that for a few years now.

All of his valves leak moderately (still no change). She did say that his lower number of the pressures will have to get to around 40 before we have to go to Kansas City. Today he was at 21.2, almost exactly the same as last time. Yay!

What is even more exciting? Because she lowered Caden's meds last time, he doesn't have to get labs drawn today. That is the worst part about cardiology days around here. He knows exactly what's going to happen before we even get to the lab and it is not pretty. I am so relieved we didn't have to do that today.

We go back in one year, Caden will be almost SIX years old by then! I cannot believe his is as old as he is now, although he thinks beyond his age. I think these lessons he's had to learn so early in life will benefit him in the long run. The heart kids sure do teach us adults a lesson or two sometimes.

Hugs to my heart mom buddies, and to all of our friends. Your support means a lot more than you may realize. ♥

Scars

It's been a while since I posted. Nothing big, nothing new with us... for once. Caden will be 5 years old in a few months. Five years... seems like forever. I had a thought last night. I went and looked at some old pictures of him. The ones before all of the scars.

Every time I touch Cameron's chest I think about Caden's. I can't help it. It angers me that I don't have more pictures of Caden before surgery. He was so young. I find it ironic that I literally cannot imagine my child without scars, while most parents can't imagine their child with scars.

I don't like to look. I don't have a choice. Neither does he.

I'm still waiting for him to ask. I'm dreading the thought of explaining it to him. I wish it would just go away. My poor baby has been through enough. Our family has been through enough. He has an estimated 2-4 years before the next surgery. I wonder how things will be different then? He'll be in school. He'll have friends and want sleep-overs. He'll want to be "normal".

When we left the hospital in May of 2007, our social worker told us to treat him like a normal child. Normal children don't have scars like this. Normal children aren't in the hospital for months. Normal children don't have to have open heart surgeries. How can we treat him normally if he's not normal?

How can we treat him like a normal child when we constantly watch him for signs of heart failure? There are things he cannot and will not be able to do. Things that we have to tell him that he can't do... because of his heart.

I truly believe that at this stage in the game, it's harder for Paul and I than it is for Caden. He doesn't realize the extent of his medical issues. He doesn't realize that him being alive is a miracle. I look at his beautiful little face and I can't imagine him not here. His quirky little attitude. His hilarious sense of humor. His thoughtfulness.

I just had to get some things off my chest. It's not healthy to bottle these things inside. There's nothing wrong, don't worry. These are just some of the things I think about. Love you guys.

Cardiology Checkup - 4/27/11

This morning was Caden's semi-annual cardiology check up with Dr. Battiste in Wichita. Caden was so brave! They ran the tests they always run, and there are some changes from his previous reports.



There are two numbers they check for the pressures across the homograft. Neither of the two numbers are high enough to require surgery, or a trip to the cath lab in Kansas City, but they are higher than they have been in the past. His numbers before have always been relatively low.



She did change the dose on his medicine. Now, instead of taking liquid Captopril (10 mg) 3x per day, he will be taking 12.5 mg in a pill form 2x per day. This is good news, because now we don't have to worry about keeping his medicine refrigerated when we go on a road trip, to the zoo, or even just a holiday get together at Mom's.



We go back on October 5th for another checkup. We have always known that surgery will be required again, there is no way around that. Knowing that his homograft will eventually need to be replaced is hard, and this is the first time that his numbers have changed since we brought him home nearly 4 years ago. There is nothing we can do to change that fact, or the fear associated with it, but we are hoping to get at least another 2-3 years out of his current "part".



Thank you all for your prayers and for thinking of us today. This is not over, and in truth, it never will be. Your support means more than you will ever know. Love you guys!

Caden getting his EKG done this morning. He was so brave!!

March Update

Things are going well, it's just been a while since I've updated. We are (and have been) in the midst of the "anniversaries" of Caden's hospital stay. I hate to think of them as anniversaries, can't there be another word? I've been debating about doing an update post for a while now, so I'll bite the bullet and get some things off my chest.

I can already tell you that this weekend will be hard for me. April 2nd was the day of Caden's second surgery, and the 3rd was the day that he crashed and was given CPR for an hour. The day they put him on that machine. The day that I wrote about in Caden's Feet.

I can also tell you that April 11th will be a mini-Birthday bash for Caden. That's the day he came off of the machine. I've said it before, but it was almost like him being born again. He was pumping his own blood again, all on his own. It's so amazing. He's so amazing.

I like to think that my family has grown a lot since those days and months 4 years ago. A lot has changed for us. A lot of good things. I guess in this time of the year, I have to remind myself of these good things instead of the "anniversaries".

One thing I know without a doubt: I love all 3 of the boys in my life, and I am so happy to be living the life I am. I am thankful that things have not been more hectic than they are, I know they could be! Caden does have another checkup in April. I am not going to say too much, but I think we will be getting good news once again. He shows no outward signs of tiring easily, sweating, turning colors. I will update with the results from the next check up.

On a side note, I'm just going to throw this out there. Please do not refer to my family as "the one with all of the heart issues". It may not sound bad to you, or to whomever you're speaking with, but it upsets me and it makes me think of things I quite frankly do not want to revisit. Even though we will someday. I'd like to keep those days as far away as possible, and memories only make it worse.

Thank you for keeping him and us in your thoughts.

Medicine and Potty

Strange title, huh? But it's all exciting! Caden has successfully been weaned from his two diuretics, so now he's only on ONE medication! At one point, he was on 12 medications (I believe... it's easy to lose track). So this is a BIG deal! It's very strange only having to draw up one med as opposed to all three. He still takes it 3x per day, but that may change in the future. Most kids with his condition do get off of the meds at some point, so we'll see how long that takes.

Both of the kids did have horrible colds last week, and Paul took them to the Dr. I was afraid that it might be the weaning of the meds, but the Dr assured us not. He prescribed an inhalant steroid and refilled the Xopenex (Albuterol for heart kids), and after a few days, he is now back to normal. He's such a big boy when it comes to taking his breathing treatments.

Now on to the other big news! Cameron has been consistently going #1 and #2 on the potty at least several times a day! Woot! He won't be 2 until January, so this is very impressive to me. Caden was much older by the time he was fully potty trained. I am soooo looking forward to the days of no diapers! He loves to rip the diapers off and climb up on the big boy potty. It's adorable! As long as he doesn't fall in, I think we're good! :D

Happy Thanksgiving!

We are busy running around like crazy getting ready for the Thanksgiving Holiday, but I wanted to post an update for you guys. :) I've been told that I should do it more often... Forrest.

Caden turned 4 on Monday this week, and so far he has had 1 BIG bowling party, 1 dinner (on his actual birthday) and he'll have 1 more party on Friday (after the rest of the family gets in town). WOW! That's a lucky kid! And a big thank you to everyone that came to his party on Saturday!

Cameron is starting to use more and more words. He is very adamant when he wants something, and then as soon as you give it to him, he throws it down... only to pick it up 5 seconds later and walk away. Oh boy! He's going to be a handful like his brother. He's a very good dancer as well (which he obviously does NOT get from his dad). Hahaha

We started doing "sleepovers" for the boys on Friday nights. We let them both sleep in Caden's bed, and they watch a movie before bed. We have to go check on them every few minutes to make sure no one is bleeding, but they have a blast in there together!

Caden is the smartest little booger. He remembers everything! We were driving down the highway and he saw the car dealership. Last SUMMER (before he was even 3!) they had one of those huge inflatable slides for kids. He went down it with his Nana. When we drove by it just the other day, he said "Remember when we went there and went down the slide?" Crazy!!! It's almost scary, actually! LOL

On the way to work this morning, it was "rush hour" and the light turned green. It took a while for the line of cars to start moving and he must have been watching. He said "Green means go!" Ha! We talk about and learn things when we're driving, and I know he didn't mean it as road rage, but it was funny nonetheless!

I'll try to remember to update this more often, Forrest. :D

Caden's Annual Checkup

We went this morning to Caden's checkup. Overall, it is GREAT news!! :)

I didn't want to spring the appointment on him, and he loves going to the Dr (weird, right?!) so I told him on the way home last night that we were going to the Dr in the morning. He told me he didn't have any ickies, so he didn't need to go. Smart kid!

He didn't fully remember when we went a year ago, but he did AMAZING through the entire checkup. He had some silent tears at the beginning because he was nervous/scared, but after those were gone, he was very relaxed and even a little happy. I let him bring his Sponge Bob DVD for the echo, so I think that helped!

Overall, Caden's heart is doing amazing! :) He will be 4 next month, and he still has his original conduit (not uncommon) which they placed when he was 3 months old. She said that for the most part, the conduit still looks brand new! There is no narrowing, no calcification, and the gradient across the homograph is very low (which is what they want).

Caden is currently on 3 different medications, one for his heart and blood pressure, and 2 are diuretics. The Captopril (heart) is staying the same. The Lasix will be cut in half for 2 weeks, then stopped completely. (YAY!) Two weeks after we finish the Lasix, we will start the Aldactone wean, which will also last for 2 weeks before stopping completely. (Double YAY!)

We are going back in 6 months (April 27th) to check on how he is doing without those two medications. Hopefully things are still going great, and we will go another year before he has to get checked again!.

I also have to mention that Cameron was a real trooper through the entire appointment, which lasts about 2 hours! He didn't cry once, and he even sat on my lap while Caden was getting the echo. He held his hand and leaned over to put his head next to big brother's. How sweet!

Thank you all for your prayers, your thoughts, and of course for your support. ♥

It's that time again...

It's almost time for another checkup for Caden. We went last October, can you believe that?! WOW! Overall, he is doing well. He is just as active as his brother, he just sweats a little bit more. I truly believe that this will be a good checkup.

Cameron and Caden are becoming the best of friends... sometimes. Ha! Brothers, I guess. :) Cameron still has his blankie that he has to sleep with. He is now saying a ton of different words. If I ask him if he wants to be tickled, he points to his stomach and says "right there" and pretty well too! His favorite things to drink are juice and milk. He will eat 3 bananas a day if I let him. He looks like a little monkey with half a banana stuck in his mouth! :) I'll try to get a picture of it for you. We went to the KU game last weekend. We whooped 'em, and every time we got a touchdown, everyone started screaming. Both of the boys looked around as if to ask "Can we yell too?" They started screaming and MAN did they have a blast! I'll add some pics:

This has become Caden's standard picture face. Not sure about that... LOL

And Cam was a big cheeser the entire time! He was actually growling at the football field. Haha

I will post an update after our appointment on the 27th of October.