My daughter, Bethany Joy, was born at 28 weeks 26 years ago on May 23, 1991. I still remember the 6 month stay in the NICU. She was delivered in emergency C-section. No one knew that when they went to give her oxygen in order to breathe and live, that there was a connection from her trachea to her stomach. The connection, called trachea esophageal fistula, not only caused her stomach to perforate or burst, but her esophagus was in two pieces in which the top piece ended in a blind pouch. Therefore, nutrition for her came through a gasterostomy tube (g-tube). Bethany was born at our local hospital, but was rushed to Philadelphia the next day to undergo her 1st surgery of many to come. She only weighed 2lbs. 6 oz. at birth. I received a call that morning saying that Bethany had a 50/50 chance of living. I seriously look back on that moment as pivotal because my faith in a loving God allowed me to see later that I wasn't alone, as an older friend, like a second mother to me, was in the room when I received that call. Bethany is a fighter, and with the care, devotion, and knowledge of all the staff, Bethany is alive 26 yrs. later, a certified Medical Assistant, and works now as a teacher's assistant.
Doctors had originally told my husband and I she would never be able to eat normally. But the NICU nurses worked tirelessly and she began to suck. After over 5 months in the NICU, with a machine and tube in her mouth suctioning the saliva out of her mouth, she was ready to have her esophagus undergo the final repair to join the two pieces together. Every day was an emotional roller coaster as we never knew what each day and medical step would bring. Mantras like two steps forward and one step back, were words the NICU staff used to console our anxieties.
During the time in the NICU, I would sing and talk to Bethany, and treasure any time I could hold her--because it was over 4 weeks until I first held her--and then holding her was on and off, depending on her condition or post- surgery incubator stays.
But eventually the time came to go home! Six months later! Weighing 9+ lbs., she came home in November of 1991!
To any parent or caregiver in the NICU, I would like to say to take each day/minute at a time, singing and talking( no matter who's in the room) to your child, and try to look and find the stories of preemies who've made it to give you hope and encouragement. Oh and go back and visit the NICU when your child is older and well to say thank you to the staff--it really does bless them and means so much to them!
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