As Lillian approaches her birthday, I thought it would be fun to share her life with you. I know I do that in bits and pieces and much of her life's battles are documented in this blog, but - for those that may just be stopping by or haven't had the time to read almost nine years of life maybe I can do some brief overviewing.
The day before she was born, we celebrated Thanksgiving with Matt's sister Rita. She, along with her daughter, had made dinner for us. We had recently lost our home, I was on bedrest, and we had moved into a new place. The next morning I was going to the hospital to have some procedures done. All of that threw me into labor, and she was born in the evening on the 25th of November. Most people know, once somewhat stable, she was whisked away to the Children's hospital. In that early morning, I a wakened in a hospital room, alone, no husband, no baby. Emptiness crushed my chest. The nurse happened in the room and asked about my tears, she placed the phone in my bed and dialed the NICU number for me. I think.
Within 25 days, our daughter, our Lillian went through more in her life than most people face in a lifetime.
She had to be on a ventilator just to continue to live for the first two months of her life. Pulmonary hypertension was making her very sick. Multiple defects kept emerging in major organs, aside from breathing being a major issue.
On Dec 5th, we were given a "plan of action" the team had made their findings and were giving us the sit down. Trach, heart surgery, chromosome anomalies, mental retardation, death.
On December 8th, a tracheostomy was performed. 10 days later, her ribs were spread to remove a portion of her aorta and to close a whole in her heart.
My life stopped. Everything I knew as a parent went out the window. All I can tell you, is I faced on day at a time. Crying my eyes out each night, alone, in prayer.
Welcome. This is just the beginning.