Did you know that it is Congenital Heart Defect Awareness week? That may be a mouthful but it is a pretty special thing. Its a week dedicated to the awareness of heart conditions just like yours.
"Congenital heart defect" meant nothing to me until 2 years ago. I don't think I had every really considered what it was, or that it could happen to someone so close to me. I was more than half way through my pregnancy and everything was going as planned. I remember the day we got to see your face for the first time. December 2nd. I got choked up, and I think daddy even cried. It was the day that everything became real. You weren't an "it", you were a "he", you were my Gage. I remembering wanting to hold you so badly that I found myself constantly rocking and holding my belly. Daddy would talk to you every night. You were perfect.
I received a DVD in the mail only 2 weeks later with the whole ultrasound. Daddy doesn't know it but I used to watch it when I was home alone. I loved the soothing sound of your heartbeat. There was no reason to think you would come into this world suffering in any way. You can imagine that it came as a surprise to us when they wanted to take you to the NICU for the first time. The nurse had stepped out of our room for the night, daddy hit the lights and we gave you lots of kisses before setting you down to sleep right by my bedside. Sounds perfect, right? Well, we lay there for a few minutes, and I think I checked on you at least 7 times. I may not have known a lot about newborns, but your breathing was even more irregular as the day had gone on, it was at its worst, and it seemed hard for you to catch your breath. I thought the Hospital was taking extra precautions when they took you away from us that night, they thought it would be best for you to sleep with more supervision. And that was the start of a very hard week.
Test after test, they still couldn't quite figure out what the problem was. I was anxious to have you in my arms again. I got to visit you every 3 hours around the clock. I fed you, I changed you and then I was asked to leave and sit in a waiting room while you rested. Sure you breathed a little funny but was it really necessary to keep you from me? April 26th is when we finally got the news that you had 2 heart defects. I was handed a piece of paper with some information about your septal defect. What did it all mean? I was looking at gibberish. Your uncle Rocky was in Med school at the time, and you can imagine he was bombarded with questions, we all wanted to better understand the severity of the situation, and if you were going to be okay. It wasn't too much longer that we were finally able to take you home.
I don't think I slept that first night at home.We checked on you constantly. I would get my head really close to your face so that I could feel your breath. We were told there was nothing we could do at that time and that we just needed to love you. Hopefully everything would heal on its own. We sure hoped.
As time moved forward it became hard to be scared of your heart defects, you were so happy. We didn't realize at the time that sleeping as much as you were was a symptom of heart failure. We had no idea that you had started to get so skinny, and that eating should not be that much work. You were easy, and you made motherhood a dream for a young student like myself. So we kept on living. We didn't want to slow down. We took you every where. You were at your first Jazz party the day you came home form the Hospital, a professional football game at 2 weeks, the zoo at 3 weeks. Momma and daddy were even crazy enough to haul you to Costa Rica at 6weeks old. You were portable, and perfect, and were always up for the adventures.
It wasn't until we returned from our ventures and you had a check up that we realized the issues with your heart were more serious that we had realized. That appointment with Dr. Schmidt was suppose to be a well-baby check up. This was the first time daddy couldn't make it to an appointment, so I tried to hold myself together and not over think the reason we were asked to get an x-ray and blood tests. I received a call from the nurse while I was at work only 2 days after. She said that she had scheduled an appointment with the a cardiologist at Primary Children s, and that the x-ray you had had indicated that your heart was enlarged. She tried to console me. Se stayed on the line asking what she could do for me. It was obvious she could sense the tears running down my face.
By your first cardiology appointment it was made clear that you were in heart failure and would need surgery in the future. It was so hard for me to grasp at the time that this was the best thing for you. Your dad on the other hand never questioned it. When he had heard that this was an option he wanted it sooner rather than later, he knew that if we were able to get you the surgery you would be on your way to a healthy life. It makes so much sense now that we are beyond that stage of life, but at the time, the thought made me cringe, it made me ball. I hated having to discuss the details with everyone. I remember trying to keep it secret as to distract myself from thinking about it all together. Being alone was hard. Too bad everyone loved you and everyone wanted to know everything. Weeks leading up to your surgery I was numb to the details. I could spit out all sorts of big words, and your dad could draw fancy pictures. We knew more about the heart and more about congenital heart defects than ever before. It is now a part of all of our lives.
Congenital heart defects are present at birth, and are a common cause of death in newborns. We have been so blessed to know from such an early stage in your life that this would be something that you would be dealing with for the rest of your life. We are even more blessed to be so close to a Primary Children s Hospital, with amazing doctors that care so much about you. Appointment after appointment, the defects seemed to multiply. And even after your surgery they seem to continue to appear. At one point I think we were up to 8 defects in your itty bitty heart? How it is still functioning, we have no idea. I like to think its because you are needed here on Earth for a bigger better purpose. I certainly need you, who else will feed me all their goldfish handfuls at a time? or spend an hour making faces to the ipad to pass the time when I am bored? Who else will insist that we snuggle when I am cranky? And who will laugh at my stories when they are not even funny?
I think it is great that there is a special week dedicated to remembering that congenital heart defects are a scary thing. I appreciate so much all the efforts made to research, education, and better technology, so that babies in the future suffering from Congenital heart defects can grow as big and as strong as you.
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