The Journey Never Ends: A Time to Reflect

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Melissa Johnson, PhD

This month marks a major transition in my life. I am retiring from WakeMed, where for 30 years I have served as the Pediatric Psychologist in the NICU, in our Special Infant Care Clinic for children 0-3, and in the pediatric inpatient service. I am also a Senior NIDCAP Trainer and now certified as a NIDCAP Nursery Assessment and Certification Program (NNACP) Site Reviewer. Transitions are especially good times for reflection, and I appreciate the opportunity to share some thoughts with the NFI community and beyond. Here are some of the things that come to mind when I look back on 30 years spent working in one of the NICUs that undertook the transition to NIDCAP-based care relatively early in the process… Continue reading

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When Life Gives you Lemons: A Personal Story from Bulgaria about Pregnancy, Birth, Loss & Family, Part 1

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Nina Nikolova

It was the summer of 2008 and I spent the most wonderful vacation carrying my twin baby girls. At our 21 week antenatal check-up upon our return to Sofia the doctor flagged a “small” problem: one of the babies didn’t appear to have enough amniotic fluid and the doctor recommended frequent checkups and bedrest.

Nina pregnant with her twin girls

At week 22, I experienced some minor bleeding and went to the emergency room of the hospital. I spent two very difficult weeks on total bedrest in the hospital; resting alone in bed and praying. I had some visitors, but the only thing that was important to me was to hold my babies inside of me as long as possible. Continue reading

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Individualized Developmental Care to Improve the Lives of Children with Congenital Heart Disease

Samantha Butler, PhD

As members of the Newborn Individualized Developmental Care Program (NIDCAP) family know all too well, preterm birth is a global challenge with developmental and physical challenges and disabilities which can not be completely explained by medical complications alone. The overexposure to unexpected noxious sensory stimuli and diminished positive experiences in the hospital contribute to the developmental picture for a child born early. NIDCAP, through minimization of the mismatch between the immature brain’s expectations and experiences of stress and pain in the hospital environment, has proven repeatedly to improve outcomes for children born preterm. Despite the research and publications on the positive outcomes for NIDCAP and the increasing availability of NIDCAP training, it is not consistently practiced in every intensive care unit (ICU) caring for fragile infants, though an increasing number of newborn ICUs (NICU) understand the importance of individualized developmental care and provide at least partial support in selected aspect of the NIDCAP model. Continue reading

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An Irish Mother’s Journey: Preterm Birth and Beyond, Part 3

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Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

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.

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On Becoming a Caregiver: Part I

“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.”

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Nourishing and Nurturing during Feedings

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Erin Sundseth Ross, PhD, CCC-SLP

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).

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An Irish Mother’s Journey: Preterm Birth and Beyond, Part 2

Mandy Head Shot cropped reduced res

Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

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.

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Shedding Light on the Newborn Intensive Care Nursery

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Kathleen A. VandenBerg, PhD, NIDCAP Master Trainer

Parents often experience shock when their baby is born too early. As they enter the intensive care nursery for the first time, they may note that the environment is not at all what they expected. Instead, they may experience the overwhelming barrage of stimulation that is the newborn intensive care nursery or NICU. Having walked this path with hundreds of parents, I see that they immediately notice the loud ringing sounds that fill the unit: blaring monitors; the constant hum of respirators attached to some of the babies; and most especially the glare of bright lights used for medical procedures.

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NICU Parent Involvement is Crucial to Outcomes

Deb Discenza, mother of a premature infant and Head of PreemieWorld

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

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An Irish Mother’s Journey: Preterm Birth and Beyond

Mandy Head Shot cropped reduced res

Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU

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

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