My Never Ending Fight

Heart Failure Part 1

Smile through your problems. 

Hello, my name is Amanda. I hope to inspire someone with my story so let's get into it and cut the beating around the bush. When I was born the doctors had trouble keeping my body temperature stable. I was either too hot from the waist down and cold from the waist up or vice versa so with this being said, I couldn't be out of the incubator. 

My doctors came to a conclusion that I needed open heart surgery or I wasn't going to make it; let's keep in mind at this time I was premature and only 4 tiny pounds. So with this decision I was flown with my mom by helicopter to Driscoll in Corpus Christi, TX (I was born in Brownsville, TX). I was only 6-days-old when they proceeded with my surgery and as I said before, I was 4 pounds. They advised my mom that they needed to do what was called a coarctation of the aorta, my aorta being my main heart valve, and that the surgery would take anywhere between 7-15 hours and they also told her that if she knew how to pray that she needed to pray very hard because I was very sick and the only one to determine whether I lived or didn't was God. They proceeded with my surgery but to my mom's surprise, the surgeons came out of the operation room at around 5 hours into the surgery. My mom automatically thought the worst since they said the surgery would take a lot longer than it did. They informed her that I was a fighter and that I made it through the surgery and they explained to her that they sliced my aorta to make it more elastic to allow the blood and oxygen to flow easier through my aorta and to my heart to regulate my body temperature. 

My mom couldn't help but cry but she was also very relieved that I was okay, but the surgery was only the beginning of a long long journey. After surgery I was in the hospital for about the first two to three months of my life because now I had to gain weight and breathe completely on my own. It was a struggle for my mother to see me this way and frustrating because she just wanted to take me home. Finally I gained 2 pounds and was able to head home! There were some side effects I was going to have to take with me—one, for example, was I had to sleep on my stomach because when the surgery was done, they opened me from my back because I was too little to open from the front and they didn't want to break my ribs. So I slept on my stomach and I also was on a lot of morphine after the surgery so I was going through withdrawals when I was sent home. I would shake and sweat in my sleep kind of like someone getting off drug addiction. 

Regardless of these things I was going through, my mom says I didn't cry much and I was actually a very good baby although I was very sick. Now let's fast forward a little bit to when I was almost 2. I stayed with my grandma often because my mom and dad worked so she would sit me outside on the grass to play and she noticed something odd one day and decided to bring it to my mom's attention. My mom gets to my grandma's house to pick me up and my grandma tells my mom that she thinks my left arm is shorter than my right arm. My mom goes over and carries me and checks it out and sure enough, my left arm was just a bit shorter than my right arm. Obviously she brought it to the surgeon's attention and they said it was because I was so small and they were racing against the clock to save me they didn't have time to put all my ligaments back together and in place and they had to put my shoulder bone high on top of the bone underneath it because the ligaments weren't in place. So with all this my mom knew my childhood was probably going to be a tough one, more than she thought. 

Stay tuned to find out how it went for me. 

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