We received Renee's diagnosis of HLHS at our 20-week ultrasound in January 2002. After spending a couple of days with a large box of tissues in several doctor's offices, we found ourselves in the wonderful care of Dr. Rychik's Fetal Heart Program at the Children's Hospital of Philadelphia (CHOP). We were very encouraged by the surgical outcomes at CHOP for all three surgeries, and decided to continue our pregnancy.
When Renee arrived on June 11, 2002, she was one week early and way faster than we thought. Consequently, she was born in the Emergency Room at Cooper Hospital in Camden, NJ which thankfully is a much better hospital than you'd expect. Renee was stabilized at Cooper, placed on her prostaglandin IV and transported to CHOP about 2 hours after birth. She had her Norwood procedure the following day and never missed a beat in her recovery. Renee was released from the hospital to go home at 11 days old, 10 days post surgery.
Renee came home on an NG tube to supplement her breastfeeding. At one month of age she decided she was "all done" with that and pulled it out. She has since been on breast milk supplemented with oil for extra calories.
In November, Renee had her hemi-Fontan. I credit an excellent surgical team and her hatred of all medical staff with our quick return home 4 days after surgery. Since then, Renee has started eating solids (she's learned to hate the medicine syringes we used for oil as well) and is looking very cherubic.
We feel extraordinarily blessed to have this little girl in our lives. Renee has done extremely well through her two surgeries and recovery. To top it off, she is just the sweetest baby I could have ever dreamed of. She smiles all day and loves playing with her big sister and her parents. She is working on sitting up by herself and has flipped herself from tummy to back, though never the other way.
Our journey with Renee has been remarkable. The initial grief we have felt at her diagnosis has been turned into so much learning about ourselves. We feel lucky to have had so much support through this journey. We want to thank Renee's surgical team, headed by Dr. Spray as well as the CICU doctors and all our fabulous nurses. Thank you to her cardiologists at CHOP and at Georgetown University. Also, many thanks to all our friends, our families and our local and internet communities. Never did we know that so much warmth would come our way. Happy holidays.
