At my 20 week ultrasound, my daughter was diagnosed with hypoplastic left heart syndrome (HLHS). I had never heard of it before, and while the doctors were explaining it to my husband and me, I felt as though my world had crumbled.
I could not go to the doctors for an ultrasound without bawling my eyes out, hearing her heart and knowing it was broken. The day Emmalyn came into this world (December 23, 2011), I knew she was my Christmas miracle and she would not be broken but fight for every breath she took. I did not get to see her until four hours after she was born. They were running tests and hooking her up to what seemed like millions of wires.
On December 26, Emmalyn went in for her first surgery, “the Norwood procedure.” The surgery went so well, she was out in four hours instead of the eight that they thought it would take. I wish I could say her recovery went as well, but Emmalyn had a lot of trouble with her lungs collapsing and not having enough blood. We finally got to take our baby girl home 19 days later.
She thrived. She did so amazing once we were home, no one could believe it. She came home on a nasogastric tube, and that was taken out a month later. She was eating from four oz bottles. In May, I noticed Emmalyn’s breathing was very shallow and her color was horrible. We rushed her to the hospital to find ourselves in the middle of a nightmare, as the ER doctors were not prepared for infants with heart conditions. They did not have a clear understanding either of her oxygen stats.
Her doctor looked her over and said she needed her second surgery early. So, we were sent by ambulance to the University of Michigan, where they confirmed that the shunt they had placed had narrowed at both ends due to good growth on her part. So on May 14th 2012, Emmalyn had a hemi-Fontan procedure (also known as a bidirectional Glenn procedure). She went through the surgery in two hours and was sent home in six days.
She is now nine months old and doing great. She is a little behind with crawling, but every day is a step closer. Emmalyn will have her third and hopefully last open heart surgery, a Fontan, sometime between June – December of 2013!