Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}

I’ve been battling with myself for years, whether or not to share this with you. As many of you know, our oldest (9 year old) son was born with a rare, severe congenital heart defect. His specific defect has required three open heart surgeries to date – the first at age 3 months, the second at age 5 months and the most recent being August 12th, 2015.

I cannot express to you how much your prayers, comments and your general support meant to Paul and me during that time last summer. Much love to you all. ♥

Learning that your child will have to face procedure after procedure and endure surgeries and more surgeries and heart catheterizations and CT Scans… well, it sucks. Adjusting to this life sucked. Watching him go through his fight with CHD still sucks, and it will always suck.

Congenital Heart Defects {CHD} occur in about 1 in 100 births. Too many. There is no cure, there is no real fix, there is no answer to the “why” that so many of us heart parents ask ourselves in the earliest days after learning the diagnosis – whatever it may be.

If you have a friend or family member facing a similar issue (or a medical issue of any kind) please be sure to share with them. ♥  You are NOT ALONE and all of those feelings are completely normal.

Caden’s Feet: Written October, 2007

I am so thankful that Caden is alive. He came so close, and I have just recently let myself accept that fact. The hospital seems like such a nightmare. I almost can’t remember it… or at least emotionally remember it, if that makes sense. I remember every date that everything happened, and I remember the morning that we drove to the hospital when they were giving him CPR for an hour and it was hailing and raining cats and dogs. We were driving 40 mph and it should have only been a 20 minute drive, but it was 45 minutes. I think about that morning a lot. Paul and I both were so quiet. The only things we talked about were calling the family and telling them to get to the hospital. Who did we call already and were they coming? That was the scariest and the most peaceful drive at the same time. I wasn’t scared for Caden, I was scared for me. I was thinking about how I would get through losing him. I knew that he would be fine whatever happened. Isn’t it funny that it took us 45 minutes to get there and that’s how long they were doing CPR? If we would have gotten there in 20 minutes, we would have been waiting around feeling even more helpless than ever.

When I think back on the hospital, I think about how he looked to me. He, for the most part looked beautiful to me. At the time, I focused on how good things were going to turn out. Every new day was an opportunity for things to get better. He always looked so beautiful. He’s our baby… we created him. I made sure that he was warm enough, just like when I was pregnant. I rubbed his head, and put lotion on him. I sang to him and read him books, even though he was put under. I read my own books, and a lot of them. The moments that I got to hold him were few and far between, and so precious. He lost his voice and he would be screaming without making a sound. That was scary to me. He looked so scared and helpless with that breathing tube down his throat.

When he was on life support my uncle and aunt came up. It was the morning that my dad and step-mom and my brother came from Denver. It must have been April 5th… give or take a day, and I remember my uncle saying that they were coming from Denver to see him again. He shouldn’t have said that to me. He said “Just in case, they want to see him again.” What the hell was that supposed to mean??? It’s funny the things that we choose to remember. Why that? Why then? I think about that a lot though. How everyone was just waiting for it to happen.

He looked like a blow fish all puffed up. His eyelids were starting to crack because they were so puffy. He still has really dry skin from being so bloated and tight. It looked like you could just pop him like a balloon. I felt bad for my Grandma, seeing him like that. She took it in stride though, and I was proud of her for that. There were so many tubes everywhere. After he came off of life support, about a week later, he was so skinny. His head looked huge because he was so thin. His eyes sunken in. He was still beautiful.

He was paralyzed and sedated for two weeks. I remember standing at his crib for what seemed like forever, just waiting to see his finger twitch, or his toe move. I would get so excited. I was so proud of him for a little muscle spasm. The first time I saw him open his eyes, you could have popped me like a balloon, I was so proud. I felt so full of hope and love for that little man. I hated feeling his bones through his skin. His spine just poked out. But he needed lotion, so I did it anyway. His skin on his legs just hung there. He looked like Frankenbaby with his staples and stitches. But he was still beautiful.

I made sure that his IVs weren’t pulling on his skin, and that there weren’t any bubbles in the lines. He has so many scars from just the IVs being in for so long. I kiss them now. Somehow, I might make it better. I would put baby oil on his head, because his scalp was so dry. The nurse thought he was sweating, but I was just being a good mommy. That binky looked so huge against his face. His big eyes just looking at me, telling me that he hated it there. Maybe that’s why I felt at peace when we were driving to the hospital. I knew that everything would be okay, no matter what.

That morning, when they let us back to see him, he was completely out. There was blood everywhere. It had dried and crusted in his ear. I couldn’t clean it out very well because he wasn’t supposed to move his head at all. He got so used to self soothing. When we came home from the hospital and still a little bit now, he didn’t want you to hold him. That’s all I wanted to do. I just wanted to touch him and feel his heart beat. That tiny heart that almost stopped. That did stop. That started again. That beautiful, tiny heart. He is so beautiful.

He had this cart full of stuffed animals and books and toys. Some of the nurses thought that it was the hospital cart. You know, the one with toys for all of the kids. Those were Caden’s. I don’t let him play with those now. Somehow, it’s like all those toys and animals and books were tangible prayers that people had given him. His crib was stuffed with so many animals, the nurse made us move them because she couldn’t see him. I wanted him to have his friends around. The frogs that my dad and step-mom gave him were there because they couldn’t be. The lamb and Mickey Mouse and the dog that was Paul’s as a boy. The bunny and the walrus… that ugly ugly walrus. Caden liked it because it was the brightest.

The morning that he had his first surgery, one of Caden’s grandmas held him for a long time before they took him. I didn’t have the nerve to take my own son. I wanted to look at his chest one last time before it was scarred. To touch it, and remember that it wasn’t scarred at one point. He was so happy. He looked like any other three month old, except for the tiny hospital gown they made him wear. There shouldn’t be hospital gowns that small. It was too big for him though. That ugly green gown. I tried to keep him warm, because it was so cold in there. At least he had his diaper on. I wonder if he had his diaper on during surgery.

When he was on life support, Paul and I asked everyone how long they were going to stay. Someone said “As long as it takes” and everyone else agreed. Three days later, everyone was gone. Except for me and Paul. I sometimes think about whether everyone thought that that was as long as it took. Or if they couldn’t take it anymore. It took so much longer.

I like to think about the day he was born. When we thought he was perfect. (He is, mind you!) My mom put the mirror up, and I saw how close I was. It only took me a couple of pushes after that. His little head popped out and I saw him in the mirror. All I could say was “He’s so cute! He’s so cute! He’s so cute!” I had no idea… he is so beautiful. That little man has taught me so much already. I guess I was naive thinking that it would be the other way around. I look at his feet a lot now, and kiss them and tickle them, and I help him stand on them. Sometimes, when I look at them, I think about how much I miss them kicking my ribs. I thought he was going to break out, like he was in prison. Sometimes I wish that I were pregnant again. That I didn’t know that he wasn’t healthy. That I was sustaining his life on earth. I guess that’s the scariest part about being in the hospital, in our situation. I wasn’t sustaining his life anymore. He had to do it on his own.

I guess I realize now that I didn’t blame myself for his heart defect, I just wished that I could give him back his umbilical cord. I wished that I could have given him a back-up generator. Turn on the reserves. That he would have had a constant spotter, so that if he dropped the ball, I would catch it. But he didn’t drop the ball. I guess that’s a mom thing. His beautiful little feet. Those little feet were the only part of his body that nothing was hooked up to. Maybe that’s why I love looking at them so much. They look just the way they did before. No one has scarred that part of him.

Thank you for reading. If you are facing ANY kind of medical procedure with your child, I recommend reading more on how to prepare and what to expect when you get to the hospital, during surgery, after surgery and more. What you can do if you are the FRIEND in the equation and more. I truly hope that this helps someone out there. I highly recommend the book Matty’s Heart. A guide for both the parents and the child facing open heart surgery.

Caden is doing much better now. We visit the cardiologist every few months for checkups, and his “new part” they placed in his heart during his last surgery is holding up well – but it is pulling at the seams a little. They are monitoring that narrowing and will go back in or attempt to repair via heart catheterization if possible, but hopefully that is a long ways away.

Our experience with Caden’s CHD is the reason we have donated so much over the years to the Ronald McDonald House and why we will continue to do so. Pay it forward!

~Ashlea