Leaving the secure if somewhat claustrophobic bubble of the NICU after three months was tinged with many conflicting emotions. We so desperately wanted to be a “normal” family, yet in our hearts we dreaded the day that the enormous responsibility of caring for our daughter would be placed on our shoulders alone. Our parenting journey to date had been filled with medical emergencies, medical interventions, enough medical personal to fill a football team and very little family time to enable us get to know Amelia.
“No society can long sustain itself unless its members have learned the sensitivities, motivations and skills involved in assisting and caring for other human beings.” -Urie Bronfenbrenner
The process of becoming a caregiver has always intrigued me, ever since I decided, many years ago, to become an early childhood special educator. As part of this process I volunteered at schools, institutions, and sheltered workshops that provided services to both children and adults with physical and learning disabilities. I was struck by the comments from family, relatives, friends and even individuals, newly introduced to me, when they discovered that I was interested in becoming a special educator. They often praised me for my interest in caring for these children and adults. This praise was usually followed by “I could never do that, it would just be too difficult for me;” or “It takes a ‘special’ kind of person to do that kind of work.”
Feeding is a developmental milestone for babies in the Neonatal Intensive Care Unit (NICU) – both for those born prematurely, and for those born with medical problems. Even though we are saving babies who have more medical problems, or who are very premature, the average gestational age that babies are able to eat everything and go home continues to be around 36–37 weeks. Babies born with medical problems are often not able to eat everything until closer to their due dates (40 weeks).
My perceptions of motherhood prior to the birth of Amelia were filled with moments of touching, loving, holding, breathing in her smell, caressing and caring, however, the reality that I was faced with was so very different. For three months I traveled 90 minutes each way to spend 12 to 14 hours sitting at my daughter’s incubator. There was very little touching or caressing her tiny frame. The only smells detectable were the smells of the hand sanitizers, the hand wash soaps and the unit’s cleaning products. I didn’t get to hold Amelia until she was four weeks old even though my baby girl lay inches away from my tear stained face. I reached out to her in my head and heart and I’m certain that you could hear my heart beating in my chest every time her monitor alarms triggered.
It was September 7, 2003 and I had been on bed rest for a little over a day. The day before I had been in a car coming back from an extended family outing when I felt my bladder let go in the front seat. Embarrassed, I said nothing, but quietly asked my husband, Gregg, to get to the nearest bathroom. All alone in a grocery store bathroom, I discovered that my water had broken. With tears streaming down my face, I apologized to my daughter in quiet hysterics and then frantically called family members in the car only to get voicemail after voicemail message. So I cleaned up as best I could and headed to the front of the store, stopping in at the office and in a surreally calm voice relayed and asked, “I believe I am in preterm labor. Where is the nearest hospital? May I borrow your phone to call my doctor?” Continue reading
May 2006, strolling along the sun-kissed shores of the Indian Ocean, having spent 16 glorious days on the beautiful island of Mauritius, I turned to my partner, John. No longer could I keep the secret that I had been saving for the “right moment” and announced that we had a much longed for baby on the way. This news was the icing on the cake for what had been a wonderful year for us as a couple and now we had a bright future to look forward to with a child of our own. We returned to Ireland filled with excitement and looking forward to the pregnancy and our new roles as parents. For the next nine weeks my pregnancy was a mixture of day long “morning sickness” followed by periods of extreme fatigue, but nothing could dampen the joy and love that we felt for our growing infant. Continue reading
This is my first blog ever, so I chose a big topic that can be discussed generally and then followed-up with additional, interesting information that I’d love to share. Although the initial topic is big, it is just one word – warm.
The meaning of words has always fascinated me. Warm has two different kinds of meaning and both are important in the NICU environment. One meaning of warm is thermal, referring to moderate heat. The second meaning of warm is emotional, implying a positive attitude or support. These dual meanings – thermal and emotional – are not just an oddity of English. The same duality appears in every language that has been analyzed for this: Arabic, Bambara (from Mali), French, German, Hungarian, Finnish, Wolof (from Senegal), and more. Continue reading
It was New Years Eve, 1997 and life was good. Our home in Palo Alto was filled with people we loved; candles flickered, a fire crackled, and I played DJ, blaring everything from Earth Wind and Fire to Dave Matthews. The small crystals attached to my sweater rubbed against my pregnant belly as my husband twirled me around the makeshift dance floor in our small living room. My due date was April 15th. Continue reading
As the NFI (NIDCAP Federation International) launches its first blog, it seems appropriate to share how the seeds of NIDCAP (Newborn Individualized Developmental Care and Assessment Program) germinated. The purpose of the NFI’s blog is to build awareness for our organization and its visionary and dedicated members, who, quite literally, change lives. This and future posts by NIDCAP Researchers, Trainers, NIDCAP Professionals, parents of preterm infants, members of our Board of Directors, and special guest bloggers will provide an opportunity to convey the NFI’s perspective and to receive your comments and questions. Continue reading