Sunday, July 24, 2011

The beginning

        Our journey starts in a place where dreams come true. We were on a lovely trip in Disney World with our two kids, Nathan(7) and Delilah(2), when the symptoms started. Surely this couldn't be number three. We had tried for over a year and a half with no success. It couldn't be happening now. I had just restarted school online to obtain my BSN and we had finally moved on from the idea of a third child. Yet, our dream did come true, number three was on its way.

      We had decided this time around we had to know if it was a boy or girl. So on the day of our anatomy scan, we were overjoyed to hear it's a girl! We informed our family and friends and started to think of the many possibilities of names. During the ultrasound Dr. Robichaux had quietly counted the chambers, but finally gave up due to the fact that she would not cooperate. He reassured us that everything was probably fine, but a follow-up appointment with cardiology would be just for good measure. We wrote off all bad possibilities and moved on. This pregnancy was going so smoothly.

       At 20 weeks, I was hospitalized with pericarditis. Nothing new for me, but the medications I had to take meant close monitoring of her fluid and a fetal echo a little sooner than originally planned. I quickly recovered and went by myself for the routine fetal echo. After flipping and flopping and attempting to get good pictures, an hour and a half had passed and the pediatric cardiologist finally gave up. He didn't want to take away all hope due to the difficulty of the scan, yet he was pretty sure she had either one ventricle or and av canal malformation. I was stunned. How did this go from routine to horrid? I walked to Dr. Robichaux's office in a gaze and lost it after seconds in his office. Dr Mulder, the pediatric cardiologist, had already called and told him of the findings. He kindly calmed me down and reassured me that at any time I could come back for him to take a second look. I had a second ultrasound scheduled with the cardiologist in two weeks. Now, we wait.

      Brett decided to go with me for the second go round of ultrasounds. When we got there, the ultrasound tech slowly and calmly took pictures without saying much. When Dr. Mulder came back in, he confirmed the diagnosis. It is HLHS. He drew pictures and answered as many questions as we had. Dr.Robichaux called later that afternoon and asked about performing an amnio for genetic studies. I watch amnios all the time. Was this really something I had to endure? I told him I had to think about it and talk to Brett about. I lived in a fog for the first 4 days, with crying spells and sheer exhaustion. The one good thing was work was crazy and it allowed me the freedom to occupy myself with other thoughts.

     After a few days, the research process started and we hit the ground running. We reached out to other families and have found angels in disguise. We are debating where is the best place for treatment of her heart condition. We do not want any regrets and this is our chance to give our baby the best possible fighting shot. I truly wish someone would hand me a list of what to do and when it has to be done so success was guaranteed. But I have learned first hand, life is not fair.

     For those who have not heard of HLHS, it is one of the most severe congenital heart defects. It is where the left ventricle that pumps blood from the heart to the rest of the body does not develop correctly for one reason or another. Think of it as though only half of her heart is working.  She will have to have at least 3 open heart surgeries, and a tough recovery.  The first surgery is at 7 days of life, second at 6 months and the final is at 3 years old.

    We are finding out more and more everyday.... and we will update as much as possible.

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