Wednesday, November 24, my son will turn 9. Nine birthdays, nine years ago I wasn't sure I'd see. Every time people sing Happy Birthday to Cain, I get a lump in my throat. That lump that tells you the tears are coming. The emotion is not just because my baby is getting older and I can't believe it. Well, it is that, but so much more. It's because I am so thankful that I've been blessed yet another year with a child that I was told more than likely wouldn't make it past January 9, 2002, just a little over 6 weeks from the time he was born.
At Cain's two-week well check, his pediatrician heard something while listening to his heart. She left the room and came back with a doctors name written on a piece of paper, along with directions. She told me I needed to go to see a pediatric cardiologist. I asked her what was wrong and she told me she heard a loud murmur, but they are quite common and just wanted me to have it checked out a little further. I told her I'd call and make and appointment, and she said, "no, go now, they're expecting you". I felt pretty confused. If it was so common, why did I get an immediate appointment with a specialist? I just said ok, took the information and drove over to the office at Scottish Rite Childrens Hospital.
They ran an EKG and an echo cardiogram (which is an ultrasound of the heart). A few minutes later, the cardiologist came in and told me Cain didn't have just a murmur. He had Severe Aortic Stenosis, which is a thickening of the aortic valve which makes it difficult for the blood to get pumped through it. He also had a tear at the top of the the aortic valve, causing blood to leak out of the valve instead of being pumped through the body. He said they'd go in and do a heart cath and try to open up the valve with a balloon. It was scheduled for a few days later. I remember driving home and crying. Not just tears coming out, but crying. Crying hard and begging God to make sure he'd be ok.
The heart cath seemed to work well. He was sent home a few hours after it was done, and I had instructions to take him to the ER if he got a fever or his lips or fingernails turned blue. A few hours after getting home he had a fever. I called the doctor, they told me to give him some Tylenol and call back in a few hours. His fever went up to over 103. I took him to the ER and they admitted him. After a few tests they realized the cath didn't work. They started him on IV antibiotics and told me they'd watch him really close and set up another heart cath procedure. Before they could set up a heart cath they realized he'd gotten an aneurysm. They scheduled his surgery for the next day. It was December 29, 2001, just 4 weeks after he was born. The surgeon came in to talk to me about the procedure and let me know that realistically, he had a 50/50 chance of making it through it. At that moment I remember stumbling. My legs felt like jelly and my heart felt like it was on the floor. I said my good bye's to him and sent him with the nurses into surgery.
A few hours later it was over and he was in the ICU on life support. My poor baby had his large chest incision and they'd cut 5 holes across his stomach for drainage tubes. He had tubes everywhere. His arms, his face his stomach his legs. I didn't know where to touch him. I stayed by his side and watched him. And prayed for him. All of the medicines he was on gave him a rash that covered his body. His skin felt like sandpaper, and he was still the most beautiful thing I'd ever seen. On December 31, 2001 Cain was baptised at the hospital. We didn't know if he'd make it at all, but miraculously he came through and was able to move to a regular room just after the new year.
Cain got a fever and after every test known to man was performed on him they realized he had a staff infection and endocarditis, an inflammation of the inner lining of the heart, the endocardium, and a collapsed lung. He was moved to the ICU, put on strong antibiotics and monitored closely. On January 9, 2002, after a routine echo cardiogram, it was realized that he had another aneurysm. They took him immediately into surgery. The surgeon told me that because he had the staff infection and the endocarditis, he could not give me a percentage of the chance he'd live. He told me, "honestly, without the surgery he WILL die, with the surgery, he will probably die from bleeding to death because infected tissue cannot hold a stitch, but we have to try, and if by a miracle he does make it, he will probably be very weak and sick his entire life."
Six or seven hours later the nurse called the waiting room to tell me I could come see him. It was 8:20. I couldn't go. I remember someone telling me, well they called, we can go see him now. And I couldn't. I needed a few minutes to just collect my thoughts and prepare myself for seeing him. When I was finally able to go in the doctor stopped me to tell me that he was bloated and swollen. Bad. They were unable to close his chest because he was so swollen, but that he did pretty well and he was on Morphine and a ventilator, so prepare myself. All those tubes that were in last time, were in again, but this time he was large and his chest was open, covered with a clear dressing. I could see my child's insides and he was twice his normal size. It was traumatizing. It was heartbreaking. It was terrible. A mothers worse nightmare.
Over the course of the next few weeks Cain got better and stronger. He was able to go home with me. He was on up to 19 medicines at one time. At some points he required medicine every hour on the hour. I'd set an alarm to give him his IV's. I had to have a nurse come to the house everyday. I had to do dressing changes for his chest incision and his pic line. At some point he pulled the pic out and with every breath a gush of blood would spew out. I drove him to the local hospital where he was taken by ambulance to Egleston. He had lost most of his blood, and he had RSV. He was admitted in isolation for a week.
Through all of this I was scared. Strong but scared. I was young and alone and had a sick kid. But scared didn't matter. What I had more than anything was this inexplicable bond. This love that just cannot be conveyed to anyone in words. Cain has been through more than most adults. Cain and I have been through more hard times together than I'd wish on anyone in a lifetime. For the first few years of Cain's life I stayed scared. Scared that he'd die if I let him do too much. When he was three and wanted to play soccer, his cardiologist asked me what my reservations were. I told him that I was scared if he played, he'd die. He told me, "Nicole, Cain needs to live his life, you need to let him. Unfortunately, Cain could die just as easily sitting on the couch as he could on a soccer field" That is exactly what I needed to hear to realize that I didn't want to hold him back because I was scared, and I didn't want him to grow up thinking he should be afraid.
Cain will have to have more surgery for this problem. For the rest of his life he needs to be aware of his condition, and monitor it closely, but life is short. We shouldn't be scared to live it. I am thankful for every day I am given with him- good or bad. His life is a miracle and I am so grateful that he is a part of my life.
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