For Mackenzie's first birthday we had a huge celebration. We needed to put a closure on 12 very difficult months. Through all the pain, there have been life's lessons of love, commitment, and the will to live. I am constantly amazed at my daughter's strength and I feel tremendous joy in her smile. We celebrate each of her milestones and take nothing for granted. We continue to deal with issues surrounding chronic lung disease and her oral aversion. Developmentally she has had her struggles but we are encouraged by her progress. We are hopeful that someday she will be able to function normally in society and that no one will be aware of her incredible struggle.
If reading this article makes you feel overwhelmed with information, imagine living it on a daily basis. I have learned a great deal from our journey both as a nurse and as a parent. I hope that by sharing our experiences, other health professionals will be better informed in helping parents cope with the realities of the first year of a premature infant's life.
I would like to thank Amy Tracy, Sandra Gardner, Dr. Jessie Groothuis, Dr. Brian Carter and Jim Toscano for their editing and contributions to this article. My husband and I would also like to thank Dr. Bruce Reddix, Dr. Jeff Hanson, Dr. Jessie Groothuis, Dr. Ed Goldson, Dr. Steve Rothenberg, Glenda Louch, Barb Hepp, Marsha Lehr, Cloy VanEman, Lyn Stevenson, Shay Markle, Ann Cotton, Robin Gonzales and all of the other wonderful people who took care of Mackenzie for their exceptional, committed care.
Dianne Maroney spent over 17 years working as a neonatal intensive care nurse. She recently received her masters of Science in Psychiatric/Mental Health Nursing from the University of Colorado Health Science Center in Denver. Dianne is the co-author of "Your Premature Baby and Child: Helpful Answers and Advice for Parents," (Berkley, 1999). She is also the mother of a premature infant, born 3 1/2 months early. As a national speaker and a member of many local and national organizations, she works with medical professionals and parents advocating to further incorporate a parent perspective and family needs into the care of the pre-term infant and child, both in the NICU and at home.
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