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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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.

Everything changed one day at 4pm, when I experienced a terrible internal pain and my waters broke. Instinctively I knew it, it was the beginning of the end. My husband spent the night on the floor next to my bed trying to sleep and trying to comfort me.  Intermittently he would leave my bedside and go for a walk. I often wondered why he left me, but a year later he confessed he simply had to be alone to deal with the pain of the situation and his fear that he could lose our children and me, and he didn’t want me to see his tears and heartache.  Premature birth affects not only the mother, but has a ripple effect on the entire family network, in particular those close to us. We have to remember that we are not alone in that journey and that the person next to us is there to support us.

After 22 hours of huge and unbearable pain, I delivered my baby girls at 24 weeks of pregnancy, naturally. Every step of the labor is etched in my memory: the pain, the anger, the unbearable fear of the unknown and the feeling of powerlessness.  Immediately after the delivery my two beautiful little girls were taken away from me. I didn’t have an opportunity to see them, touch their fragile bodies, tell them I loved them (and was so dreadfully sorry). It would be several hours before anyone would tell me how they were. I just lay there in my limbo state wondering if my babies had even survived.

I was transferred to my room and after I woke up, the only thing I wanted to do was go home, to start my life from the very beginning and to forget what had just happened to me and to my family. Suddenly my whole world change completely. The doctor came to my bedside and asked if I was ready to meet my babies. I was utterly shocked to discover that they had survived.

Our 5 month NICU journey unfolded… I approached the incubator with trepidation to meet my beautiful baby girls… They were so small, tiny, beautiful, and perfect. Unfortunately my second daughter passed away after two days without us having the opportunity to touch, hold, hug or kiss her.  Bulgarian law decrees than an infant that is born below 1000 grams and does not survive for 7 days is not entitled to receive a name so our beautiful little girl who had lived inside of me for 24 weeks and had blessed our lives for 2 short days was taken away from us by the hospital and burnt along with the hospital garbage.  Words cannot describe the pain of losing a child and having to be strong for the surviving twin. My heart was broken for my loss, but I cried my tears at home before putting on my strong supportive face for our daughter.

I waited with bated breath for day 7 to arrive so we could finally name our daughter Alexandra. I was lucky to deliver my babies in one of the most modern hospitals in Bulgaria, so we were permitted to visit Alexandra every day. Our visitation was limited to one hour and only one visitor was permitted at a time.  After the birth of our girls I was given pills by the doctors to stop my milk and it was so distressing to see the other mothers in the unit breastfeeding when I had been denied the option.

I found myself immersed in a world that I knew nothing about; I had never heard the word premature birth let alone know anything about the risks and consequences.

The NICU is a strange place; noisy, full of fear, lined with incubators, strange machines and equipment, babies with tubes and lines coming from every inch of their little bodies and staff that scared you. It was extremely difficult to obtain reliable information about preterm birth, but I did manage to find an online site and started to inform myself.

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Alexandra held by her father

Alexandra’s respiratory status continued to worry her doctors and after many investigations on her lungs it was discovered that she was suffering from Bronchopulmonary dysplasia.  Her lungs were not developing and despite the initial elation that the lungs would recover the outlook soon turned bleak – she would require oxygen to stay alive. We were summoned to the head doctor’s office to be told that the doctors had done all they could for Alexandra and they could do no more for her.

We set about contacting hospitals in Germany, Canada, Israel and Australia in the hope that someone might be able to offer Alexandra some hope. However all the replies reflected what the Bulgarian doctors had told us until we received some hope from a hospital in Israel. Following a conference call and a transfer of 70,000 USD (an enormous amount of money for us given the average monthly Bulgarian salary in 2008 was €300), we prepared to transfer Alexandra to Israel for treatment.

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Alexandra at four months old

Unfortunately, there was no dedicated neonatal transport service available in Bulgaria to transfer Alexandra, so we had to privately fund the transfer ourselves (€20000). Transporting an intubated infant is difficult even with the best of medical support and we were faced with the prospect of having to source a transport incubator ourselves.  Making that journey to the airport with just Alexandra, the doctor, and the driver was a terrifying experience. My mind was in turmoil, my heart was breaking with the pain and fear that we might lose Alexandra and I had no-one to share my burden. Initially the doctor refused to transport Alexandra because she was intubated, so they tried for 30 minutes to extubate her and they hoped to keep her alive with an ambu bag for the flight, but regrettably it was not possible and on that freezing cold night in February the plane left without us. I was crying so hard the only thing that would have eased my pain was death. On Tuesday February 172008 Alexandra returned to the hospital a very, very unwell baby.

Fortunately the Israeli hospital refunded the money we had paid them, but we lost the 20,000 euro –none of that mattered.

On Friday, the 20th of February we were summoned to the hospital by Alexandra’s medical team; we knew the news wasn’t good and this was the beginning of the end for our little girl. The doctor felt that she only had a few hours of life left in her tiny body that had fought so hard these past few months. My husband fainted to the floor when he entered Alexandra’s room.  I entered and approached the incubator. She was staring at me, with an empty look, her breathing labored; saturation 80/40. I put my palm to the very cold incubator, I didn’t want to cry, I was to be strong for her, for my little hero. I told her that she can go.  I left the room, I left her and I left the hospital.

At 5 pm we received the phone call that no parent ever wants to receive…Alexandra had passed away…a part of me died that day. The only clothes I had been brave enough to purchase for her, which were intended to be her discharge home clothes, ended up being her burial garments.

We cremated her and put her ashes in a tomb next to her grandfather. She will always be my little fighter, my angel, and my little daughter.

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Alexandra listens to her mother singing

I had the best time with her for 5 months, singing to her, hugging her and loving her with all my heart.

Alexandra smiles at her parents

It is not easy to lose a child, but we have to be strong and happy to have the little time together. She made me believe that everything is possible, that everybody has his own way and time to Earth and we have to spent this time as much as we can and remember the good things and the happy moments.

NIDCAP did not exist in Bulgaria in 2008 and it still doesn’t today in 2016. I am just setting out on my journey to learn more about the NIDCAP care philosophy and am hopeful to one day ensure that all the babies cared for in our nurseries get this gold standard of care.

 

 

– Nina Nikolova
Chairwoman and Co-Founder of Our Premature Children Foundation, Bulgaria
Member, Parent Advisory Council, NIDCAP Federation International, Inc.
Sales Manager, Bulgarian Land Development

Note: In Part 2, Nina Nikolova will share stories of the birth of her now five year old twins (born at 29 weeks gestational age), and how the “Our Premature Children Foundation” began, as well as how she became involved in the NFI’s Parent Advisory Council.

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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

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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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