Our Miracle

Reed was a miracle from the beginning. We found out at 17 weeks gestation that he had some medical issues. Upon delivery, Reed was immediately transported to Nationwide Children’s Hospital where he stayed for the next 206 days.

During that 7 months, Reed stole the hearts of NICU nurses and doctors alike. He had many major surgeries including airway repair, 2 heart surgeries, tracheostomy placement, GI surgery, cleft surgeries, and countless minor procedures. We had many, many hard conversations during that time. The future just seemed grim. Reed, however, had different plans. He continued to prove to everyone around him what a strong, stubborn little boy he is.

The inability to hear, breath, swallow, or process sensory input didn’t stop him. The doctors added a few “pipes” to help with the breathing and eating, and he is compensating for the rest.

Fast forward 3.5 years, Reed is still strong-willed, stubborn, and hilarious. He typically loves taking pictures, so we were a bit surprised when he decided that school picture day was NOT the day to cooperate. So, instead of getting a cute school picture, we got the best blooper ever. You can’t see his hands because they’re tucked behind his back, and he refused to even look at the camera.

If only I had known 3.5 years ago what the future held. We still worry about Reed’s longevity and his quality of life. But we also get to worry about trivial things like bad school pictures. We never imagined in those early days that he would be able to attend school. We just couldn’t see that far into the future. But, here we are — sending him to school where he is learning things so quickly. Just this week he drew vertical lines and strung beads on his own — two skills we have rarely worked on at home yet he has learned through school.

If I could go back in time and talk to my previous self, I would say:

“It will be okay. God has a purpose here. Reed is in the best hands possible at NCH. Also, don’t spend so much time stressing about the distant future. Enjoy today. Enjoy tomorrow. Soak it all in and burn these smells/sounds/feelings into memory. It goes by quickly.”

We will be forever grateful for the staff at Nationwide Children’s. Without them, there’s no way Reed would be thriving as he is. From the NICU staff to the outpatient therapy staff (and all the people in between), we owe them everything. As cliche as it sounds, they have become extended family.

For more information on CHARGE Syndrome, please visit: https://www.chargesyndrome.org

https://flutter.nationwidechildrens.org/wp-content/uploads/gravity_forms/4-ede9f44fbfc12d4ad796078917b471d6/2017/12/Reed-2017-School-Picture.jpg
https://flutter.nationwidechildrens.org/wp-content/uploads/gravity_forms/4-ede9f44fbfc12d4ad796078917b471d6/2017/12/IMG_4207.jpg
  • Name: Reed S.Reed Sabins
  • Condition(s): CHARGE Syndrome
  • Age at Treatment: 2 hours
  • Age Today: 07/18/20148 Years

Reed was a miracle from the beginning. We found out at 17 weeks gestation that he had some medical issues. Upon delivery, Reed was immediately transported to Nationwide Children’s Hospital where he stayed for the next 206 days.

During that 7 months, Reed stole the hearts of NICU nurses and doctors alike. He had many major surgeries including airway repair, 2 heart surgeries, tracheostomy placement, GI surgery, cleft surgeries, and countless minor procedures. We had many, many hard conversations during that time. The future just seemed grim. Reed, however, had different plans. He continued to prove to everyone around him what a strong, stubborn little boy he is.

The inability to hear, breath, swallow, or process sensory input didn’t stop him. The doctors added a few “pipes” to help with the breathing and eating, and he is compensating for the rest.

Fast forward 3.5 years, Reed is still strong-willed, stubborn, and hilarious. He typically loves taking pictures, so we were a bit surprised when he decided that school picture day was NOT the day to cooperate. So, instead of getting a cute school picture, we got the best blooper ever. You can’t see his hands because they’re tucked behind his back, and he refused to even look at the camera.

If only I had known 3.5 years ago what the future held. We still worry about Reed’s longevity and his quality of life. But we also get to worry about trivial things like bad school pictures. We never imagined in those early days that he would be able to attend school. We just couldn’t see that far into the future. But, here we are — sending him to school where he is learning things so quickly. Just this week he drew vertical lines and strung beads on his own — two skills we have rarely worked on at home yet he has learned through school.

If I could go back in time and talk to my previous self, I would say:

“It will be okay. God has a purpose here. Reed is in the best hands possible at NCH. Also, don’t spend so much time stressing about the distant future. Enjoy today. Enjoy tomorrow. Soak it all in and burn these smells/sounds/feelings into memory. It goes by quickly.”

We will be forever grateful for the staff at Nationwide Children’s. Without them, there’s no way Reed would be thriving as he is. From the NICU staff to the outpatient therapy staff (and all the people in between), we owe them everything. As cliche as it sounds, they have become extended family.

For more information on CHARGE Syndrome, please visit: https://www.chargesyndrome.org

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