Bailey's Story

Many of you know Bailey’s story and how far she has come. When we look at photos of Bailey when she was just a few days old, having just undergone heart surgery and hooked up to all the machines and tubes, it's hard to believe we are looking at the same child. Bailey’s on the Munster Seahorse Swim team, plays softball, and has decided to play the trumpet next year in middle school. Bailey has not let her past define her. She has never said “why me.” Bailey truly inspires me. She gives me the strength and courage to never give up.

 

Bailey's Story

How far she’s come

Before she was born, Bailey was diagnosed with complete fetal heart block, resulting in a dangerously slow heart rate. We met with the pacemaker and heart surgeons before she was born. Within minutes of birth she was rushed by ambulance from Prentice Women's Hospital to Lurie Children's former facility, Children's Memorial Hospital. I was only able to see her for what felt like a minute before she needed to be transported. It was very hard to be separated, but we knew Bailey was in the best hands there. I remember feeling thankful that she was with them. I felt that she was safer there. Bailey was born on Monday and I wasn’t able to see her until I was discharged on Thursday. My friend Elizabeth blew up pictures of Bailey for me to hang around my hospital room while I waited to be able to see her. Now, the new Lurie’s hospital has a bridge so mothers can be wheeled across from Prentice to Lurie’s to spend time with their new babies.

The next day, Bailey underwent surgery to have a one-lead pacemaker implanted to regulate her heart rhythm. She then spent three months in the hospital's Neonatal Intensive Care Unit, where she was also treated for a lung disorder. When Bailey came home, she was on a feeding tube, oxygen and thirteen medications. Bailey was so tiny and frail. She returned to the hospital when she was six months old to have a hole in her heart repaired using a minimally-invasive surgical procedure employing a catheter. Finally, she was able to come off oxygen. When she was a year and a half old, surgeons implanted a new two-lead pacemaker. In 2016, Bailey had another heart surgery to switch out the generator, which is located in her abdominal wall.

Over the past eleven years, Bailey has had many setbacks and illnesses, but nothing stops her. Bailey has overcome all odds. She has proved statistics wrong numerous times. Nothing can stop her. She truly lives each day to the fullest. Carpe Diem.

Thank you friends, family, co-workers, and total strangers for continued support for Lurie’s Children Hospital. When people say to me “I don’t know how you do.” We’ve survived, because we have had such a supportive support group, YOU!

 

Sincerely,

Megan

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