MARCH FOR BABIES: A MOTHER OF A MOVEMENT™
Syracuse March for Babies
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Onondaga Lake Park
4585 West Seneca Turnpike , Syracuse, NY 13215
Date: Sunday, September 16, 2018 11:00 AM
4585 West Seneca Turnpike , Syracuse, NY 13215
Date: Sunday, September 16, 2018 11:00 AM
Our ambassador
The Hurlbut Family
The Hurlbut Family
Our daughter Lily has been a miracle right from the start. She is our rainbow baby and has made our family complete.
Lily was born at 26 weeks exactly, due to HELLP syndrome. The doctors had prepared us, for me to be in the hospital for months, but I ended up having an emergency C-section just days after being admitted. The doctors tried to take me off magnesium to see how I would do, but my blood pressure got high quickly. Lily was born weighing 1 lb. 3 oz.
Lily stayed in the NICU for 95 days. It was a trying time for us all, with us living 45 minutes away. Lily was a fighter right from the start. She took out her own tubes and showed us her strength daily. Kangaroo care was a bonding experience, being able to hold our baby girl. Even little things like changing her diaper and bathing her were moments to be treasured, not taken for granted. Any “normal“ things we could do to be connected with our daughter, were greatly appreciated.
Finally after 95 long days in the NICU, we got to take Lily home. She was still under 5 lbs when she left the NICU. Lily came home on oxygen and a monitor, but it quickly became the new normal. We were already used to the machines at the NICU, so it was even a bit comforting to know she was being monitored still. We embraced it all, medications, therapies, equipment, tubing, medical supplies... It all became the new normal and we were just happy to have her home.
Lily was diagnosed with spastic cerebral palsy at the age of 2. It was heart breaking, but Lily is a very happy, motivated young girl, so we don’t let the sadness of her diagnosis overshadow her light.
Lily is going into her 3rd year of preschool this fall. And she loves school! She is now walking with her gait trainer and using a communication device. She is very good at expressing her feelings and we are very anxious to hear all she has to say. Even though she cannot walk, there’s no slowing her down. She crawls and pulls herself up to stand. She also sits independently and entertains herself with books daily.
We support March of Dimes because any early detection and research for premature babies is worth fighting for. Lily is a prime example that great strength comes in small packages!! She is an inspiration and we are thankful every day for our little miracle!
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