My husband and I went into the ER with contractions in the middle of the night expecting our second daughter. Throughout our pregnancy, we never had any idea the pains we were about to endure. Medical personnel monitored us and concluded that we just have a small baby due to us being small people and ruled out any medication conditions. Our daughter was breech and never flipped so we ended up having a C-section. After she was born the complications came barreling in. Due to being breech, she had hip dysplasia, her legs and labia were swollen, she had excess fluids on her kidneys, a weak valve to her bladder, dysfunctional liver, and most importantly a heart defect (total anomalous pulmonary venous return). She would need heart surgery and sooner rather than later. Many different tests were done in order to try to find an answer. Finally, genetics came back. It was a rare condition with 500 cases known. Phelan McDermid Syndrome or 22q13 and one the severe end. She would function as a one-year-old at ten years old, two-year-old at twenty, and so on so forth. She wouldn't talk, eat, play, etc. and there was no guarantee that she would make it through the recovery period from the heart surgery.
My husband and I had to make the decision that no parent wants to make or should ever have to, and stop IVs and let her pass peacefully instead of letting her endure a life of pain. Our nurse Jessica had been there with us when we made the fatal decision. She comforted us. She took extra special care of L, decorated her room with all of the things we had brought from home, even called and updated us on how she was doing when we went to lunch. She offered to help us do her footprints (which we ran out of time that day). We knew L was having special care in the hands of Jessica. When we came in in the morning there was a heartbeat bear with L's heartbeat from that day with a handwritten note. I can't explain what her small (and big) gestures mean to me and my husband knowing that we will soon no longer have her here with us and will always have the small things as reminders of the special care we had while staying at the children's hospital. While all of our nurses have been outstanding, Jessica will always stand out. Thank you, Jessica!