James C. ~ Super Hero Alias: The Invisible Man
Age: 6 months (now deceased)
Weight at Birth: 5 lb, 6 oz
Weeks Gestation: 37 weeks
Time in the NICU: 191 days
Diagnosis, complications, surgeries?
Giant Omphalocele, VSD, Cox-C deficiency
Why should your child be recognized as “Preemie of the Year”?
James personified the NICU and demonstrated without a doubt that some people need a lifetime to make a difference; he only needed six months eleven days.
From his earliest moments he demonstrated an uncanny ability to light up a room, bring family together, and soothe even the most frazzled nerves. Through 9 procedures, he never was unhappy.
Though James has left us now, his caregivers have remained close friends. What better way to be able to remember your child then with the friendships you made while caring for him that continue after they’re gone?
Using three or more typical characteristics of a Super Hero, please describe your child.
Courageous, never backing down in the face of adversity.
Benevolent, always finding the perfect moment to make everyone else feel better even if he didn’t.
Patient, always gave Mom and Dad time to enjoy his company, put up with endless flashes, and hours of endless talking.
What advice do you have for future NICU parents?
Be patient, realize that the staff is there to help, visit as often as you can, take lots of pictures, and just love your kiddo. Miracles and tragedies are daily occurrences in the NICU. Your miracle today could be your tragedy tomorrow, so always leave with a kiss and a smile. No one wants to see Mom and Dad cry………..
Describe how Hand to Hold’s services are meaningful to you and future families. What kind of support would have helped you most during your journey?
Hand to Hold is that rare organization that reaches out to guide and stay with a family with someone who can empathize not sympathize with the NICU family.
