trying to help our baby hold on

Meet Amirah and her twin sister Nevaeh. These are my two youngest babies. Both born prematurely Amirah, in her entire six month life has never actually left the Newborn Intensive Care Unit at VCU Children’s Hospital. But her two brothers, father, and I had hope as she was a bright, happy baby despite her situation. Recently she developed Tracheomalacia, the cartilage in her trachea is soft and “floppy” causing it to collapse, even while intubated. Our baby has coded or technically died numerous times in the last few weeks and been resuscitated. Last Friday doctors and medical staff was unable to get a pulse back for 20 minutes. During this occurrence her CO2 levels were over 200, in fact they were too high to monitor. Generally once she is resuscitated, she will cry for a few moments. That is my release, my cue that my baby is ok… at least for now. Friday that didn’t happen. She laid with her eyes closed having only mild tremors. I knew right away something was wrong. When she did open her eyes, she looked right through me and her Daddy. Her mild tremors became larger, obviously involuntary, movements throughout her tiny body. Our worst fears were confirmed. She has suffered serious brain damage and if her heart stops again she will be brain dead. We are forced to do what no parent should ever have to do. We have to prepare both emotionally and financially for her passing. I don’t think we can ever be fully prepared to lose our sweet baby girl. So now, with my heart heavy and my pride swallowed, I ask for assistance in the cost of our baby’s final expenses. We do not want to be in a financial position where we are scrambling to make final plans while facing the immense loss. We appreciate your kind words, encouragement, positive thoughts, and prayers.