Tag Archives: developmental care

What NIDCAP meant to my NICU experience…

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Latoshia Rouse

Just 7 days earlier, I had an OBGYN visit. After a great visit, I asked other moms of multiples if they thought I would make it to 36 weeks. My doc seemed very confident that I would, but I wanted to talk to moms who had accomplished it. We laughed and giggled at the possibility of me breaking the record for triplet birth weights. Everything was going great! This day I was super tired. I was beginning to struggle with standing for short periods of time. I was seeing the toll this pregnancy was having on my body. I decided to lay down and rest, but I needed to go to the bathroom first. Once I got in there, I realized my water had broken. Within an hour I was in the emergency room. I still was not sure what all this meant, but I knew I was not going back home until I had them. I had a 3 year old at home and I was not able to be with him. I was so torn. Everything was messed up. My body was failing the babies I was carrying and I was not able to parent the baby that was here. This was a Tuesday and after the steroids/ magnesium, I delivered my babies on Friday morning. They were 26 weeks 6 days. 2lbs 10oz, 2lbs 8oz, and 2lbs 3oz of perfection. It was a whirlwind. I had 4 kids. From 1 kid to 4 kids in about 29 mins.

Latoshia, first time holding all three babies

After they were born, my kiddos went to the NICU. I didn’t get to see them at all. I was so anxious to see their faces. I felt like them being with me was a way I could help keep them calm. It was just a feeling. Later I would find out that my hunch was right. Meanwhile, my husband brought me pictures. We named them for the NICU staff and I was able to touch them gently. I was so proud of them. They were handling it. All the world was crashing down on them and they were still here. After some struggles in the beginning, I was starting to settle into the NICU life. I was taught about liquid gold and how breast milk was life saving. I was taught about how my touch would stabilize their breathing and heartrate. I was taught about brain development and how being there as much as possible to kangaroo would help develop their brains. All of a sudden, I was back. I was important in the life of my children. I could make a difference and I could parent them in the NICU. They were mine again.

Mommy Latoshia holds Ava and Layla

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Dad, William, holds Landon

I started to pay attention and learn each one to become the best expert I could be on them. What else do you do when the kid doesn’t talk back? You study them. You want to make sure your baby has the best premature experience they can have and you want to make it easy for them. After a few weeks of studying them, I showed up and there was a report taped on their isolette. It had NIDCAP and a rainbow line under it. I knew my hospital was a level IV, but I didn’t understand NIDCAP at the time. I started reading the report and it was spot on. The person who wrote this knew my babies. The report talked about what the baby liked and disliked. It made my babies individuals. It made the nurses aware that this child was different. This child has needs and was talking to them the best way he or she knew how.

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Ava, Landon and Layla, 5 years old

Layla, Latoshia, Brandon, Ava, William, and Landon

I later met with a soft-spoken gentle-natured doctor, actually the Infant & Family Specialist, and he was not like others I’d met. He was the person who wrote the report and he handled me with kid gloves. He spent time with me and explained the report. He answered my questions and gave me reassurance that what I was doing was great. It was the things that made me feel like my kids were getting the best possible care. They were there to care for my babies emotionally and not just physically. They were there to mitigate and that is exactly what I wanted. We could not turn back the hands of time, but we could mitigate the effects of prematurity for my kids. And that is the very best next thing. I’m forever grateful that my babies were born in a NIDCAP hospital. I credit that good fortune with the fact that all of my children are happy, healthy, and completely normal 5 years later.

-Latoshia Rouse
NICU Family Advisor and Coach

 

 

 

 

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The Journey Never Ends: A Time to Reflect

Melissa Johnson photo

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…

Every NICU experiences the transition from “the way we’ve always done it” to developmentally supportive and family centered care differently. Shortly after I arrived at WakeMed, to join colleagues Jim Helm and Ann Marie Elmore on the developmental team, our nursery embarked on this journey. We were fortunate to have visionary leaders at the nursing and neonatal levels, as well as dedicated bedside nurses and other nursery staff. One of the things I learned over the years is that this kind of collaboration is not just helpful – it is essential. Everything that the developmental team accomplished was made possible by this teamwork. As I talk with my neonatologist and nurse friends about the years we have spent together, it is clear that those who were there from the beginning remember the transition as an exciting though daunting time; younger colleagues appreciate that they had the privilege of beginning their careers caring for babies and families in a way that was both scientifically supported and just felt right.

The process of providing NIDCAP care and of training in the NIDCAP model has evolved significantly in ways that make it even more powerful and rewarding. Over the years, we have been increasingly intentional and effective in incorporating our deepening understanding of how to keep the entire family at the center of our thinking and our care. When we began to use the practicum experience (following one baby and family throughout their NICU experience with both regular observations and frequent family meetings) as part of the process of achieving NIDCAP certification, virtually without exception we saw trainees who were already wonderful family support professionals become even more sensitive and aware of family needs and strengths. One of the strengths of NIDCAP itself is that it has continued to grow and develop based on both research findings and real life experience.

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James Helm, PhD, Director, Carolina NIDCAP Training Center and Melissa Johnson, PhD, NIDCAP Trainer, accept the NFI’s NIDCAP Nursery Certification Award from Heidelise Als, PhD, Founder of the NFI

An example of how the NIDCAP model has continued to grow is evident in, the NIDCAP Nursery Certification process, which has evolved to be an effective and rewarding way to help nurseries achieve high levels of excellence, and to recognize this excellence in a meaningful way. While the progress that the NNACP program has made in the last several years is incredible, it is based on years of painstaking preparatory work, led by Karen Smith, Deborah Buehler, Rodd Hedlund and of course Dr. Heidelise Als, and involving many other members of the NFI. This too is an example of the importance of teamwork and collaboration, and of valuing the process of transition and improvement. Our own NICU’s participation in this process as a “pilot” NICU taught us that the process itself was immensely valuable in supporting our efforts to improve our care, with the eventual achievement of NIDCAP Nursery Certification serving as acknowledgement to the staff of their hard work, but also an inspiration to continue their dedication to this approach.

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Melissa with granddaughter, Stella

On a personal note, I began my work at WakeMed as the mother of a four year old and a three year old. My older child spent three weeks in a NICU where the intelligent and caring staff did not yet have the benefit of the work of Dr. Als and her colleagues; my first view of my child after delivery was of a baby on her back on a flat board, wrists and ankles tied down, scrunching her tiny face against the bright overhead lights. Happily, resiliency overcame risk and many positive factors united to make her future bright. But the lessons I learned at her bedside were joined with the wisdom provided by several thousand families in the last three decades- among these lessons, that there are many ways of being a good parent, and that the explicit and implicit messages provided by hospital staff may be critical in shaping each parent’s confidence and sense of readiness to take that tiny person home.

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Melissa and Stella

Each of us who has been fortunate enough to be part of the NIDCAP work will find that its influence is life-long. It will continue to inform my continued role as a site reviewer, and new roles as a volunteer child advocate and proud and delighted grandmother!

– Melissa Johnson, PhD
Pediatric Psychologist, North Carolina, USA
NNACP Site Reviewer
NIDCAP Federational International, Inc.

 

 

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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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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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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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