March 13, 2012, I went in for an ultrasound and our baby girl’s heart rate was in the 70s. They did not know what was going on, but I did. Aliyana Grace had complete heart block: a rare heart condition where the electrical system is disrupted and the atrial and ventricles do not communicate, which causes a dangerously low heart rate.
I was at NYU the next day for a fetal echo and her heart rate was in the 50s. I was started on steroids: meds that made our hearts beat faster, plaquenil, and ivig treatments. We were told she would not make it.
We did not give up, however, and I was determined to fight as hard as I could as long as she kept fighting with me. We fought until I went in for a regular ultrasound at 34 ½ weeks and found out I had no fluid. That night, June 19, 2012, at 9:30pm our beautiful girl was born.
She was immediately taken from us and they got her heart pumping enough. The next day she was temporary paced. She did great in the hospital and won the hearts of everyone who came to see her. She had such a big personality for such a tiny 4lb 13oz baby!
At one month, Aliyana was scheduled for her permanent pacemaker. She got through the surgery like the little fighter she was, and we were expecting to bring her home very shortly. We soon found out that her lung collapsed due to the breathing tube in too deep during surgery. It was just too much for her.
A week later God took our Aliyana to Heaven. We had 5 weeks with her and it was the most amazing 5 weeks of our lives.
Our hearts are broken and we will never be the same, but we are sure our little angel is watching over us.
There is not a minute that goes by that we don’t think of her.
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