The Day I've Dreaded For 10 Years.....

Ten and a half years ago on November 24, 2001, I was blessed with a beautiful and healthy baby, Cain. For two weeks I had what I assume is a very normal newborn. Sleepy and cuddly and cute. Two weeks after his birth my world was turned upside down when at his two week well check the doctor heard a heart murmur. She assured me many kids have murmur's so I shouldn't worry, but she wanted a cardiologist to check it out, just in case. She said she'd get me the info and be back in a moment. She came back and handed me the card with the name, address, and phone number of a pediatric cardiologist. I told her I would call and make an appointment when I got home. She said, no, I've already called and they're expecting you now. Right then my heart dropped. I knew it wasn't as unconcerning as she led me to believe. Even at 20, I knew you didn't get an immediate appointment with a pediatric cardiologist if it was "likely something he'll grow out of". I drove the the office in Atlanta and that is the day I was told that he was born with a congenital heart defect: Severe Aortic Stenosis.

I remember that day as clear as if it were yesterday. He came in and explained what was going on with his Aortic Valve and let me know that he would schedule Cain for a balloon valvuloplasty, where they would put a balloon into his aortic valve and blow it up in an attempt to stretch it out. This was an outpatient procedure and would hopefully solve the problem. A few days later he had the procedure and all seemed to go fine. We were discharged thinking there would be no other problems. One hour at home and Cain got a high fever. We were told to come to the ER and from there Cain was admitted. A few days later Cain got an aortic aneurysm and was taken in for emergency open heart surgery to repair the aneurysm. The surgery went well but Cain developed an infection in his blood and endocarditis, which is infection of the inside lining of the heart chambers and heart valves (endocardium) along with pericarditis, which is an infection of the protective lining that surrounds the heart (pericardium). Then his lung collapsed....

Two weeks after the first surgery, he got another aortic aneurysm. He was taken in for emergency open heart surgery to replace the aortic valve. The doctor told me if we didn't do the surgery immediately he would die. If he did the surgery he would likely die due to the infection in his heart. Infected tissue will not hold a stitch and without stitches, he would bleed to death. But he had to try. I was completely heartbroken at the thought of losing Cain, but after research about the surgeon, I knew that if anyone could save his life, it was him. I handed my baby over and 8 hours later I got the call that the surgery went good but to prepare myself to see him as he was bloated to twice the size he was normally and they were unable to close his chest. His skin was covered in a rash from the blend of medicines he'd been on and he was intubated and had wires and tubes coming from everywhere. I wanted to go see him but I was scared to go see him as well. I remember having to talk myself into it. It was terribly hard to see him like that. Tubes coming from everywhere. A cut down his chest, 5 drainage tubes under the incision across his belly, iv's, breathing tubes. I don't have a great memory, but that moment, walking through the double doors and seeing him for the first time after the surgery is ingrained in my memory forever.

The following months were hard and we dealt with his central line coming out and him losing most of his blood, a bout of RSV which required him to be in isolation in the hospital for a couple of weeks. Medicine and more medicine. Doctors visits and more doctors visits. But regardless of the medical needs Cain had, he was a joy. He was a happy baby that went through so much, yet thrived. He sat up early on his own, he ate so much food and he was just so smart. When he turned one year old I remember feeling for the first time like it was going to be ok. The rough part was over.

For the next 9 years Cain lived as normal of a life as possible. His doctor allowed him to play some sports, he played with his friends as normal and he excelled in school. After he was 3, our biannual visits to the cardiologist turned into annual visits, as he was doing so well. In the back of my mind I knew there was an impending surgery. I knew one day it would come, but even considering that I was expecting it someday, didn't prepare me for the day we were told "it's time".

So, here it is, "time" and I have a lot of emotions. Happy that this surgery will fix the problem for many years, if not forever. Scared about such a big surgery. Heartbroken for Cain that he is going to miss out on some things that are important to him at the moment. And most of all confused because although we've been through all of this before, I've not been through this with a young man or dealt with the emotions of a 10 year old that's been told they have to have this huge thing happen right away. Cain obviously doesn't remember all he has been through and so although we've been down this road before, the scenery seems so different now.

 Even while there is uncertainty, I am confident in a few things.... I know Cains heart will be operated on by one of the best pediatric cardiothoracic surgeons in the country and I know I have an amazingly strong son that will also come through this surgery and thrive. He will have a long, happy, healthy, and beautiful life, and for that I am so very thankful.