written by Melinda, Emma’s mom

Emma Katherine Porch was born on July 12^th 2017 and she was ready to get here! She was born via repeat c-section, so no surprises with that, but the surprise was Emma Kate. We had no clue she would be born with a special heart. I was blessed with an OBGYN who knew something was wrong and called in a specialist to look her over in the NICU and within four hours of delivery she was transferred to our children’s hospital, Blair E. Batson, in Jackson, Mississippi.

Emma Kate was diagnosed with Hypoplastic Left Heart Syndrome and Shone’s Complex. When she was only five days old she had the Norwood procedure. That was the scariest moment of my life. I had only been able to hold my baby for three days and I had to hand her over. To have her heart stopped. To have a machine do the work for her. Her surgeons’ hands were bigger than her. We were blessed to be close to our hospital living only 20 minutes away; we were able to go home and shower. Also during all of this chaos, we had a four-year-old at home who was wondering why his little sister was not home. Owen loves his sister! After surgery Emma Kate was in the PICU for a week and then transferred to the cardiac floor for 2 weeks. After 3 weeks we FINALLY brought our baby home! That is when I discovered the Heart Heroes organization! What has helped me the most is all of the connections and mom friends I have made through Heart Heroes. My husband has also made several dad friends and we have discovered several close friends’ children actually have different types of CHD. 

When Emma Kate came home she had the normal struggles of eating, gaining weight, and meeting milestones. We had our ins and outs of the hospital due to colds, two heart caths, and needing NG tubes put in/replaced. When Emma Kate was eight months old she was finally ready for her Glenn Procedure in March of 2018. Emma Kate flew through it and didn’t even lose a beat. She is now fixing to be two and is nonstop! She is walking, playing, climbing, jabbering, and eats nonstop. She still has her struggles of weight gain, infantile scoliosis and catching up on milestones. She is able to attend a medical daycare designed for our medically complex kiddos and it warms my mom’s heart. I was afraid she would always be home (the first year of her life we had home health nurses at our house to keep her). She runs and plays and bosses everyone around at school! She receives OT and Speech services right now and has been dismissed for now from PT. We now go every six months to cardiology (which we used to go EVERY SINGLE WEEK) and we are waiting for our Fontan procedure. 

Emma Kate has made me appreciate the little things in life and to live in the now instead of the future. Having Emma Kate introduced us to a world we never thought we would be a part of. A world that is full of gains, smiles, laughter, and seeing the sunshine through the rain. It is also full of the awareness that my child is not broken, but mended. I often have to explain, there is no cure. She will never be healed. She is stronger and braver than me. She is a fighter. She is a warrior. We follow the stories of other children with HLHS and we grow and cry together. We celebrate the good days and the hard days. We are a family.  

And even though she is tiny, she is mighty!