It’s found in every steady hand And every brave pursuit.It’s the light that guides the way, A heart so bright and true.

The magic here at Cook Children’s Starts with mothers like you.

From all of us at Cook Children’s, #HappyMothersDay weekend! 

“People are truly choosing to come here,” said Tiffany Pullom, nurse manager for the pediatric intensive care unit (PICU) and neonatal intensive care unit (NICU).

Pullom and Suzanne Whitbourne, M.D. neonatologist, noted that many admitted infants arrive through the emergency department. Families often share that they chose the Prosper location specifically for its specialized pediatric reputation and its proximity to home.

“We have a long history of taking care of the babies in our NICU (stemming from our flagship medical center in Fort Worth,” said Dr. Whitbourne, “I think a lot of the reassurance comes from that expertise and that experience that we have, and they can see it day by day.”

The NICU typically cares for and admits infants up to 30 days of age. Since its opening, the unit has primarily treated upper respiratory illnesses and babies transferred from surrounding delivery hospitals.

The NICU features:

• 11 beds: 10 private rooms, including a room for twins.
• Family-centered amenities: On-site laundry services and single rooms equipped with bathrooms, breast pumps, milk warmers, and refrigerators.
• Dedicated nutrition lab and formula mixing.
• Virtual connection: A bedside camera system that allows parents to see their babies via an app when they cannot be at the hospital.

Pullom said these amenities reflect Cook Children’s holistic approach to healthcare.

“We have our lactation services; we have speech therapy. We have a multitude of subspeciality specialists here,” said Pullom. “Anywhere from ear, nose, throat (ENT) to pediatric surgeons, pulmonologist and sleep studies can be done here.”

 The care extends beyond the clinical needs of the infants to support the entire family. Case management and social workers assist parents with logistics, such as adding a newborn to an insurance policy.

“This facility supports families,” said Dr. Whitbourne. Having been with Cook Children’s Health Care System for 24 years, she believes established trust in the community is why families continue to choose their care.

 Related Stories:

• Finding Her Voice: How North Texas’ Newest NICU Helped an East Texas Newborn Heal from Vocal Cord Paralysis
• Cook Children’s Medical Center – Prosper Opens Neonatal Intensive Care Unit, Expanding Care for Newborns in One of the Nation’s Fastest Growing Regions
• Cook Children’s Looks to Expand Medical Campus to Keep Up with Unprecedented Growth in Fort Worth

"Our new NICU is a promise to families that their children will receive expert, compassionate care without having to leave their community," said Kevin Greene, President of Cook Children's Medical Center - Prosper. "With each investment we make into our medical center and in our outpatient clinics, we are building a foundation for exceptional pediatric care close to home."

With more than 46,000 new residents moving to Prosper and surrounding cities each year, many of them young families, Cook Children's NICU ensures that even the smallest and most vulnerable patients have access to specialized pediatric care close to home.

“Unlike NICUs in adult hospitals, every physician, nurse and clinical team member here is exclusively trained in pediatrics,” said Jonathan Nedrelow, M.D., neonatologist and Chief Medical Officer at Cook Children’s Health Care System. “This means newborns benefit from care designed specifically for babies and children, backed by the full resources of Cook Children’s nationally recognized pediatric subspecialties.”

We can provide a consultation from a pediatric specialist in more than a dozen subspecialties, onsite. This significantly reduces the need for families to endure stressful transfers to other facilities, likely an hour away in Dallas or Fort Worth.

In the event a baby needs the highest level of medical care, they can be seen via telehealth by physicians at the Level IV NICU at Cook Children’s Medical Center – Fort Worth, and quickly transferred by Teddy Bear Transport, if necessary.

 We are a multidisciplinary, holistic care team led by Neonatologists. Cook Children's is committed to growing the NICU in both size and capabilities, and currently, our NICU features:

• 10 rooms, including a room for twins (11 beds total)
• Single rooms with bathrooms, breast pumps, milk warmers and refrigerators
• Dedicated nutrition lab and formula mixing
• Bedside camera system so parents can see their babies via an app when they’re away

Designed with families in mind, every detail of the NICU is crafted to support both patients and their loved ones. Bright, whimsical colors and geometric shapes create an uplifting and calming environment, while bold polka dots and playful floor designs serve as a thoughtful wayfinding system, helping parents and visitors navigate the space with ease.

 Every feature, from the oversized rooms that allow for more family members to gather to the extra cabinetry for personal storage, prioritizes comfort, privacy and convenience during what can be a stressful time. Each room provides dedicated sleep spaces for parents, ensuring loved ones can remain close to their baby at all times.

“The opening of this NICU reflects Cook Children’s continued mission to improve the well-being of every child in our care and strengthen the health of our communities,” said Sheralyn Hartline, DNP, RN, CENP, RNC-NIC, Vice President, Nursing and Patient Care at Cook Children’s Medical Center – Prosper. “We’re looking forward to growing further to meet the needs of families.”

Just a few years earlier, orphan trains rumbled through Texas towns, carrying vulnerable children westward seeking new homes and opportunities. In Fort Worth, amidst the challenges of a growing frontier town, individuals and families opened their hearts and homes to these children. Some specifically chose to take in the sickest among them, the ones with special needs, or those whom others might have overlooked. It was a poignant time in the nation’s history, but that legacy of compassion would soon inspire a new kind of home for vulnerable children—a place devoted to healing and to a Promise to improve the health and well-being of all children in its care and communities.

A lot has changed in a century. Orphan trains are a thing of the past, replaced with child welfare services that aim to keep children safe and families together if possible. Camp Bowie is now a boulevard bridging history and commerce; the Stockyards are an entertainment hotspot showcasing cowboy culture; and Fort Worth’s population is nearing 1 million, making it the 12th largest city in the country.

But one thing remains the same. The spirit of embracing the vulnerable and offering hope to those most in need still runs deep in the heart of this community. Through all of Cowtown’s transformations, Cook Children’s has risen to meet the needs of the moment—expanding its campus, evolving its technological capabilities, and adding services to improve the health and well-being of all children in its care.

Today, Cook Children’s begins a new chapter in its 107-year history of hope and healing by breaking ground on the site that will soon see the rise of a new 760,000-square-foot patient care tower, currently referred to as the West Tower.

“About 59 people move to this area every day,” said Stan Davis, president of Cook Children’s Medical Center – Fort Worth. “To keep pace with this unprecedented growth, we must also expand. This isn't just about getting bigger. It's about ensuring we can continue to be that steadfast home for every child who needs us. It's about equipping our exceptional doctors and nurses with the leading-edge tools they need, providing a comforting space for our tiniest patients, and offering a sanctuary for our sickest children.”

Expanding the Blue Peaks
The addition of the West Tower will enhance Cook Children’s Heart Center, already home to the nation’s top pediatric cardiologists and cardiovascular surgeons. The growth, which includes two new dedicated cardiovascular operating rooms, paves the way for Cook Children’s surgeons to perform life-saving heart transplants.

The West Tower also makes way for the expansion and redesign of Cook Children’s Pediatric Intensive Care Unit (PICU). Designs for the new PICU focus on two key elements for supporting healing and improving the patient and family experience—sunlight and privacy.

Over the past decade, studies have shown that a lack of natural light and loud environment can increase the risk for what doctors call ICU delirium, according to Kyle Brown, M.D., PICU co-medical director. It is a common occurrence in intensive care settings, especially those like Cook Children’s current 20-year-old PICU where there are few private rooms and natural light is hard to find.

“Some kids that come into the ICU after a serious injury are thinking clearly and know 100% where they are and who their family is. Mentally, they are their usual selves,” said Linda Thompson, M.D., co-medical director of Cook Children’s PICU. “Then, with a few days of not sleeping well, with pain medicine on top of that, and being stuck in bed, they can start to get confused. They don’t recognize people as well and they can start to see things that aren’t there. This is considered ICU delirium.”

One Patient’s Experience
For former PICU patient Emerson Bellucci, it only took 24 hours for the delirium to set in.

In 2024, Emerson spent 36 days in Cook Children’s PICU following a rare and life-threatening allergic reaction to the common antibiotic Bactrim. The reaction damaged her lungs so severely she required life-support via extracorporeal membrane oxygenation, or ECMO. It is the most advanced form of life support available. Essentially, an external artificial lung. A pioneer in her own right, Emerson was one of very few patients to remain awake and even walk around while on ECMO. Most are fully sedated during this life-supporting treatment.

In the initial days of Emerson’s PICU stay, she and her family shared space with 42 others healing from severe and traumatic injuries and illnesses. In her case, Emerson was separated from neighboring patients only by a curtain. The sights and sounds of every other patient’s monitors, machines, televisions, and even the cries of an infant patient, often interrupted her sleep and added to her own anxiety about her illness. The lack of natural light caused her to confuse her days and nights.

“There were no windows to notice it was night and we were supposed to be sleeping,” said Ashlee Bellucci, Emerson’s mom. “I think that was the beginning of her delirium that really set her pattern to where she was up a lot at night. As a mom, you’re up with her, too. So it was hard.” 

Despite the best efforts of Cook Children’s PICU staff to institute daytime quiet hours for napping, simulate nighttime hours with low light settings, and minimize disruption while caring for a neighboring patient, the scenario described by Dr. Thompson and experienced by Emerson happens over and over again.

“When we have increased delirium, that increases the length of time that patients spend in the ICU and the length of time that they spend in the hospital,” Dr. Brown said. “It also leads to what we now call post-intensive care syndrome, which is something that both patients and families can experience after they leave the ICU. This includes things like PTSD and anxiety.”

Once Emerson was placed on ECMO, she was moved to a more private, enclosed space in the current PICU. While it had a small window that helped regulate her sleep, it did not have a private bathroom. Emerson’s parents still had to trek to the family waiting area for showers and restroom breaks.

“Having to walk down the halls in my pajamas to the bathroom was very inconvenient,” Ashlee said. “But I think one of the hardest things was shower time. Her dad and I had to plan showers around when doctors would be visiting so that we could be sure one of us was there. I felt like a college kid in a dorm taking all my things, and having to go down and sometimes wait for a shower. Inevitably, you would forget something.”

The design of the new PICU aims to change that.

“Instead of making families feel like they're coming into our place, we need a way to make it feel more like home for them and more like we're actually entering their space,” Dr. Brown said. “That's really what creates a more healing environment for the patient and family,” Dr. Brown said.

Hope Lights the Way
In the redesigned PICU, every patient will have a fully enclosed private room with a window, as well as a private bathroom. A sliding glass door with a curtain for privacy will shield patients from the sights and sounds of their neighbors’ care and machines, while allowing the medical team to keep a close eye on their patients. Quiet sleep will go uninterrupted by the commotion of a middle-of-the-night admission of a new neighboring patient. Parents and young patients can focus on their own healing without the added trauma of witnessing the circumstances of others. When the sun rises, patient rooms will be drenched with natural light, awakening their souls to the hope of a new day.

“I think the first time I noticed the little window it just reminded me of outside and that I won't be stuck here forever,” Emerson said about the more private ICU space she was moved to while on ECMO. “Having a window definitely increased your mood. Having sunlight is just like a happy thing.”

New Frontiers
The West Tower will be a place where Cook Children’s charts new frontiers in medical research, ensuring that every step forward in patient care is informed by the rigorous pursuit of knowledge. While Cook Children’s already has 300 open clinical trials, as well as 500 ongoing studies, the expansion of services like Cardiology and Pediatric Intensive Care opens new doors for even more research that advances medicine and shapes the quality of care.

Take cancer treatment, for example. Over the past 50 years, research-driven protocols have decreased the five-year mortality for Acute Lymphoblastic Leukemia—the most common pediatric cancer— from 80% to 5%, according to a 2021 article published in the Journal of Clinical Medicine.

“The centers that do research have higher, better quality numbers than the centers that don’t," said William Stigall, M.D., Cook Children’s chief research officer. “Research is one of those things that make you better at everything, and the robust space and technological capacity of the new tower will give us the capacity to do even more.”

Design Through the Eyes of Others
Planning and design of the West Tower is a collaborative effort between staff, patients and the design and construction teams.

“We have thought long and hard about what is important to us and our patients,” said Melodie Davis, DNP, RN, CENP, Director of PICU, ECMO and Dialysis at Cook Children’s. “For several months we have gathered input from our team and our patients. Bringing together evidence from literature on how PICUs can create healing environments with our lived experiences and collaborating with the construction team is truly a dream come true. Our patients, their families, and our staff have so much to look forward to.”

Today, Emerson and her family joined Cook Children’s executives, members of the board of directors, city officials and community supporters to turn the first shovels of dirt on the site of the future West Tower. Construction is expected to take five years.

“This groundbreaking of the West Tower is not just the laying of concrete and steel. It is a powerful continuation of the pioneering spirit,” said Rick Merrill, president and CEO of Cook Children’s Health Care System. “It is a tangible manifestation of our enduring commitment to the future, a bold step driven by the same courage and vision that defined Fort Worth from its earliest days.”

Fast Facts

• The West Tower will seamlessly integrate with the existing medical center floor by floor.
• The services/units moving to the West Tower will make way for the expansion of Hematology/Oncology as well as the Neonatal Intensive Care Unit, which will grow from 106 beds to 143.
• The Heart Center will gain two new operating rooms, a third cardiac catheterization laboratory for advanced diagnostics and interventions, 14 additional cardiovascular intensive care beds, as well as a new Step-down Unit for transitioning care as heart patients heal. All Heart Center inpatient services will be conveniently located on one floor in the new tower, from procedure prep spaces, to operating rooms and special procedure areas, to the Cardiovascular ICU and Step-down Unit.
• In addition to the Cardiovascular Operating Rooms, the West Tower will house eight new operating rooms. Two will be specifically equipped for Orthopedic surgery and two for Neurosurgery.
• The redesigned PICU will feature 56 private patient rooms with private bathrooms.
• Anticipating future growth, shell space will be included in the build.

The Cook Children’s NICU hosted its annual reunion on Sunday, April 6 to celebrate those connections. Over 490 attendees joined staff members for the rodeo-themed occasion. Everyone dressed in costumes representing their favorite animal, cowboys and cowgirls.  

The event allowed Cook Children’s former patients and their families to reunite with their care teams, including nurses, physicians, therapists, child life specialists and more. The care teams spend a significant amount of time with their NICU patients and their families while they’re admitted to the hospital and they always look forward to seeing how the former patients are doing after they are discharged from the medical center.

The NICU reunion also marks milestones and celebrates the achievements and successes of each patient.

About Cook Children's NICU

Cook Children’s NICU is designated a Level IV NICU, which is the highest level of neonatal care for medically fragile babies. Our NICU offers 106 beds in 99 rooms, including rooms designed for twins, triplets or quadruplets. The unit hit an all-time high of 101 infants in January 2024 – evidence of the North Texas region’s population growth and our medical center’s impact on the community.

We provide advanced technology and access to specialists including cardiology, genetics and neurology. Emergency surgery can be performed without having to leave the unit. The NICU care team also includes lactation specialists, physical therapists, occupational therapists, respiratory therapists and social workers. Watch a video tour or call 682-885-4375 to speak with a member of our team. 

Logan Magane entered the world as a bundle of joy in June 2023. While his parents were surprised by his Down syndrome diagnosis at birth, they quickly embraced the unique journey ahead.

“My labor had already been very different from what I had envisioned, as we both had complications,” Logan’s mother, Thais Magane said. “When the doctor told us they wanted to test him for Trisomy 21, my heart sank.”

According to the CDC, Down syndrome is the most common chromosomal condition diagnosed in the U.S. It’s also called Trisomy 21 because a baby with Down syndrome is born with an extra chromosome 21. Down syndrome affects how the brain and body develop, leading to varying levels of lifetime care needs.

Logan spent 14 days in the Cook Children’s Neonatal Intensive Care Unit (NICU). When he was discharged, he went home to meet his big brother.

When Logan was 2 and a half months old, he and his family met Cook Children’s Geneticist Alexandra Garza Flores, M.D.

“Logan has been a happy and charming little guy ever since I first met him,” Dr. Garza Flores said. “His diagnosis was not known prenatally, and so it was a surprise to his parents. However, they have been wonderful, proactive advocates for him from day one.”

Joining a Community of Supportive Families

Thais looked for local support and education and found the Down Syndrome Partnership of North Texas (DSPNT).

“DSPNT was very welcoming and absolutely incredible!” Thais shared. “Someone came to my house with a welcome basket and a ton of advice.”

Thais also turned to social media to communicate with others and share what she’s learned.

“They wasted no time in connecting with other families via social media and the local DSPNT, providing Logan with every resource available from the get go,” Dr. Garza Flores said.

Thais and her family have friends, family, church and work colleagues who’ve supported them. She joined the Abilities Team Member Resource Group at her work to support the Down syndrome community.

“Learning about the diagnosis can be overwhelming, but it’s opened us up to a wonderful world and community that we would have never known otherwise,” Thais said.

Caring for Logan and connecting with others has taught Thais a lot about what’s most important.

“My advice is that taking care of our mental health is just as important as taking care of our babies,” Thais advised. “Find your sweet spot in the community.”

Becoming Passionate Advocates

Logan is now 16 months old. His body naturally takes more time to develop motor skills and other growth milestones. Thais advises others to focus on every child’s unique timeline.

“The amazing thing about Logan is that he surprises my family every single day,” Thais said. “And I work hard not to compare. Logan will show us in his own time.”

Dr. Garza Flores also keeps an eye on Logan’s growth.

“Today, Logan is cruising, blowing kisses and finding his voice! He loves his big brother and can charm anyone he meets,” Dr. Garza Flores said. “It’s a privilege to be part of Logan’s health care team and watch him grow.”

Logan's care coordination is also done with Cook Children's Early Support and care Transition (NEST) Center for his growth and development. 

Thais and her husband also work with Early Childhood Intervention (ECI), a Texas state program that supports families with developmental delays, disabilities or certain medical diagnoses.

“I love ECI’s model of setting up 2-3 goals to work on instead of checking a long list of things we need to be able to do by a certain time,” Thais said.

Staying Excited About the Future While Managing Challenges

“Having Logan in my life is teaching me to slow down,” Thais said.

Thais and her family make accommodations, realizing they may have to for the rest of their lives. Even so, she’s excited to watch Logan’s personality form through his facial expressions, babbling sounds and interests.

“To me, the challenge remains with me,” Thais said. “I want to make sure I am the mama both my little boys need, and I take one day at a time. My baby is worth it. Logan is strong, handsome and has a beautiful smile that just makes you melt. Snuggling is the best!”

Thais and her husband’s unwavering love and dedication are a testament to the extraordinary potential that lies within every child.

National and Local DS Foundations

• Global Down Syndrome Foundation
• National Down Syndrome Society
• Down Syndrome Partnership of North Texas

At the beginning of this year, Catie Pulsifer, RN gave birth to the first set of quadruplets Cook Children’s has seen in over a decade. Catie is a Psychiatric Nurse in the Behavioral Health Unit at Cook Children’s, making this extraordinary event all the more special for everyone at the hospital. 

While she was in the NICU with the quads, Catie would often run into her coworkers in the hallways. 

“They were all so sweet and supportive,” she said. “A lot of them gave us their hand-me-downs and sent things from our registry.”

The Pulsifers' Journey

Catie and her husband Cameron already had two children—3-year-old Allie and 5-year-old Robin—when they decided they wanted a third. On July 4, 2023, the pair discovered they were finally expecting.

When Catie went to her first ultrasound, her scan showed not one, not two—but five gestational sacs. Cameron was out of town on a work trip during the appointment, so Catie had him on speakerphone when the doctor broke the news. 

“It was definitely silent on the other end of the line,” Cameron laughs. “We had a feeling we might be dealing with multiples, but we did not anticipate that many.”

After the initial shock passed, the couple was unbelievably excited. Their doctor, however, warned them of the high risk of miscarriage with that many embryos. At around 10 weeks gestation, they lost one of the babies. 

“It was really tough, but I'd had a miscarriage the year before and I think that prepared my heart to know what it felt like,” Catie said. “At the same time, we were just glad we had four that were doing so well.”

Week after week, Catie, Cameron and their doctors continued to monitor the quads, who just kept growing and getting stronger.   

“We celebrated every week that passed,” Catie said. “When I started getting really big and feeling them kick, that was really exciting.”

The Quads Make Their Entrance

Catie was admitted to Texas Health Harris Methodist at 26 weeks gestation so that she and the babies could be under constant observation until she gave birth. 

“That's when it really set in, and I was like, it’s happening! We’re having four kids,” she said.

On Jan. 8, at 30 weeks and one day, the quadruplets made their debut. James was born first, followed by Hannah—the only girl of the four. Next came Mark, thenLogan, the tiniest of them all, came last. All of the babies were born at least two pounds or bigger—a feat Catie had hoped for.  

After they were born, the quads were transported to the Cook Children’s NICU, where they were kept together in a suite known as “The Quad Room.” With a rotating group of nurses assigned to them alone, the four received round-the-clock care and attention. It didn’t take long for them to capture the hearts of the NICU staff. One of their primary nurses, KK Harding, joked that everyone fought over who would take care of the quads each shift. 

“They're so precious,” she said. “It brought us such joy to help this amazing family care for their babies and to help them grow.” 

“Even though I don’t work in this unit, I know firsthand how great the caliber of care is at Cook Children’s,” Catie said. “All of the nurses, doctors, staff, and respiratory therapists made this journey smoother than we could have ever imagined, and we are so thankful the babies could come to this NICU.”

Finally Home With Family

After eight weeks in the NICU, the quads made their way home at the beginning of March. Catie and Cameron transported the babies in their new Sprinter van—the only vehicle that could fit all four of their car seats.  

Catie is happy to report that the babies are doing great and continuing to develop their own distinct personalities. James, who she calls their “little James Bond,” loves being the center of attention. Hannah is leading the pack by being the best eater and sleeper, and Mark, who’s either stoic and brave or pouty, can’t decide what he wants. Logan loves cuddles and is the most pensive of the group—he’s also the tiniest and hungriest, trying to catch up to everyone else’s size.

Though Robin and Allie didn’t realize how much crying they would have to endure, they love being a big brother and sister. They especially enjoy having family reading time before bed and helping mom and dad out with diapers, bottles, and pacifiers.

It’s safe to say the Pulsifers have their hands full. They go through upwards of 64 total diapers and bottles per day, but they have been fortunate to have an outpouring of support from family, neighbors, and their church community. 

The days ahead for Catie and Cameron will certainly be far from boring. At one point, all six of their kiddos will be in elementary school together. Helping just one child through life’s major milestones is a lot for any parent—and the Pulsifers will have four navigating growing pains simultaneously. But if there’s anyone who’s equipped to handle it and ready to enjoy the ride, it’s this family.

“We can't really prepare for it, but the thought of what our life is going to look like is really exciting,” Cameron said. “A little scary, a little nerve-wracking, but exciting more than anything.”

Cy and Jennifer McGuire spent a grueling two months at their infant son’s side in the Neonatal Intensive Care Unit (NICU) at Cook Children’s Medical Center – Fort Worth in 2016.

Today, Tate is a healthy and cheerful 7-year-old. He knows he was hospitalized as a baby, and that his Peaks Dragon stuffie came from that hospital. He’s eager for cotton candy, the bouncy house and hugs from his favorite nurses when his family returns for a NICU reunion April 28 on the front lawn.  

Tate has come a long way since his first trip to Cook Children’s, rushed there by ambulance when he was only a few hours old. Tate was a preemie born with a malformation of his esophagus and trachea that made it impossible to feed and difficult to breathe. He needed surgery and then treatment for pneumonia during his recovery in the NICU.

His parents look back with gratitude for the nurses and doctors who took care of Tate during his ups and downs and scary moments. Cy and Jennifer remember the names of many of the medical team members, especially those they saw and spoke with routinely.

Even after seven years, Tate’s parents still have a soft place in their heart for the nurses … for their swift and coolheaded response every time Tate’s alarms sounded. For their reassuring words of encouragement. For taking the time to answer questions. For making the McGuires feel heard and respected and involved in their son’s care.

The trust that Jennifer and Cy placed in the NICU staff back in 2016 created a bond that still exists. That’s why it’s important to them that Tate gets to know Colleen Reinelt, RN and Jonathan Nedrelow, M.D. and others who provided his critical care.

The McGuires make it a point to travel from Aledo for the annual NICU reunions at Cook Children’s. The gathering in 2023 was the first since the start of the COVID-19 pandemic. Jennifer takes photos every year of Tate with Colleen, Dr. Nedrelow and the other caregivers they recognize. Because she treasures those encounters, Jennifer wants to save the memories in a timeline of images to show her son. 

Each reunion is a chance to say hello, give hugs and celebrate how much the former NICU patients have grown.

“It was wonderful to see everyone,” Jennifer said of the 2023 reunion. “They all remembered Tate, and it was so nice to see it come full circle. They saw him at his worst, and now he’s doing amazing.”

Staff members enjoy the reunions because they get to visit with the children who were once the sickest babies at the medical center. The average length of stay in the NICU is slightly less than a month, but some infants remain much longer. Once a baby is discharged from the NICU, the family doesn’t usually see those same caregivers again. 

Colleen said every patient in the NICU makes an impression. She remembers taking Tate to surgery, his nickname (“Tater Bug”), and what room he stayed in. She was happy to receive another hug from Tate each time their path crossed at last year’s reunion.

It’s rewarding at these events, she said, to see a thriving child who was once a baby with a brain bleed or needing resuscitation, for example. Nurses, doctors, Child Life specialists and therapists love to visit with those kids and their parents and siblings again -- outside the NICU.

“You develop relationships with these families. It’s hard on them and it’s hard for us when they leave,” Colleen said. “You remember their smiles and you remember their laughter. All of the kindness in their heart. And it means so much that they want to stay in contact with you.”

The 2024 Cook Children’s NICU reunion promises carnival food, fun and circus-themed festivities from 1-4pm on Sunday, April 28, at the Fort Worth medical center. Past patients are invited to come in costume as a circus animal, ringmaster or performer.

Families are encouraged to bring posters decorated with photos, a short write-up of their baby’s time in the NICU, and updates on how the child’s doing now.

"Our NICU stay at Cook Children’s was mentally, physically, and emotionally draining,” Jennifer wrote on her storyboard in 2017. “That said, it was absolutely the best place for our Tate to spend his first 2 months of life!  Cook Children’s is such a special place.  Everyone works together as a team with a genuine desire to help heal your child.  They encourage parents to take an active role in that team, which eases the trauma of it all.  Plus, the ability to spend both days and nights with our son, in his room, was priceless.”

Making Connections

Dr. Nedrelow serves as Senior Vice President and Associate Chief Medical Officer for Cook Children’s Health Care System. He came to Cook Children’s almost 20 years ago as a neonatologist.

The NICU environment tends to create unique connections, Dr. Nedrelow pointed out. Strong relationships form because the patient families and medical staff are moving together through victories and hardship. It’s a place of intense emotions, teamwork and a shared purpose: Helping the infant heal and go home.

Children who spent time in the NICU as babies like to hear the stories, he said. At the reunions, they stand in long lines to meet and greet the nurses and doctors they know from those stories.

“It’s magical to see the child’s face light up,” Dr. Nedrelow said. “They’ll say, ‘I remember my time in the NICU.’ Of course they don’t, but they remember other people’s memory of it.”

The reunions are powerful and joyful for everyone involved. They provide a sense of closure. 

“It feels very meaningful to these families to be able to come back and interact with the staff for no other purpose than to celebrate the health of their child,” he said.

Tate’s Journey

Tate was born in September 2016, five weeks before his due date. Nurses in the delivery room had trouble suctioning his throat, which was a red flag for a complex condition called tracheoesophageal fistula with esophageal atresia. In simplest terms … Tate’s windpipe and food tube were abnormally joined, and his esophagus ended in a pouch instead of reaching his stomach. His airway was not fully developed and would collapse on itself, another concern.

“He wasn’t able to eat, and his breathing was not as good as it should be because part of the air was going into his GI tract,” Jennifer explained.

Tate was taken by ambulance from the delivery hospital to Cook Children’s. Cy followed the Teddy Bear Transport to the NICU. It was a whirlwind of activity, he recalls, but the staff helped him settle in.

Jennifer, meanwhile, remained in the delivery hospital. She was released two days later and immediately went to Cook Children’s, where she was able to hold Tate for the first time just before he underwent surgery. Colleen was the nurse in the NICU who placed Tate in Jennifer’s arms.

“Colleen, who later became our primary nurse, was actually the first person I saw,” Jennifer said. “She showed me how to hold Tate, with all that he was connected to, and she calmed my fears. She was amazing.”

Pediatric surgeon Marty Knott, D.O. repaired Tate’s esophagus and trachea, stretching his esophagus to reach his stomach. He developed complications afterward and was placed on a ventilator. Until his chest tube came out, his parents couldn’t hold him. They could rub his back, hold his hands, talk and sing to Tate. The nurses gave encouragement.

Jennifer was also thankful that the NICU staff encouraged moms to pump breastmilk if possible. Tate was able to take her milk through a nasogastric (NG) tube in his nose. Gradually his breathing and eating improved.

Another blessing, they said, was having a single-patient room with a foldout couch. Cy or Jennifer spent every night with Tate while the other parent stayed home with their two other sons, a kindergartener and a 3-year-old at the time. Tate’s grandparents took turns coming to Aledo to help out at home.   

Over their two-month stay in the NICU, the McGuires got to know all the staff. They have distinct memories of the interactions with caregivers they knew by name, including the nurse who calmly did chest compressions the time Tate was unresponsive.

They remember Dr. Nedrelow as extremely knowledgeable and skilled in neonatology. At the same time, he advocated for parents being an active part of the team in caring for their child. They credit Dr. Nedrelow’s openness to their questions and any concerns they expressed.

Tate grew in the NICU to 7 pounds, 6 ounces. After he was discharged, the family visited the Cook Children’s NEST Center, a support and evaluation program that follows up with former NICU patients.

The family celebrates the anniversary of Tate’s homecoming with a cake of his choice every year. He’s able to eat anything and keep up with his brothers. Tate loves hugs, which his parents attribute to the frequent cuddling in the NICU once he could be held.   

His dad says they’ll continue attending the NICU reunions because Tate’s medical team deserves to see the impact their skills and kindness made on his life. 

“They got to see him at his rough start,” Cy said.  “And now here’s this cheerful kid running around giving the world joy.”

More about the NICU

Cook Children’s NICU is designated a Level IV NICU, which is the highest level of neonatal care for medically fragile babies. Our NICU offers 106 beds in 99 rooms, including rooms designed for twins, triplets or quadruplets. The unit hit an all-time high of 101 infants in January 2024 – evidence of the North Texas region’s population growth and our medical center’s impact on the community.

We provide advanced technology and access to specialists including cardiology, genetics and neurology. Emergency surgery can be performed without having to leave the unit. The NICU care team also includes lactation specialists, physical therapists, occupational therapists, respiratory therapists and social workers. Watch a video tour or call 682-885-4375 to speak with a member of our team. 

RELATED STORIES:

• Record Broken: Cook Children’s NICU Reaches New Milestone with 101 Patients
• Patients, Families and Care Teams Reunite at Cook Children’s NICU Reunion
• Raising Joy Podcast: A NICU Parent’s Guide to Managing Emotions

On January 25, Cook Children’s Neonatal Intensive Care Unit hit its highest patient volume with 101 babies. Brittany McLaughlin, NICU Director, says this milestone is evidence of the continued growth in our community and its impact on our hospital. 

“We are so very grateful to have the unit and resources to care for the infants in the community that need our support,” said McLaughlin. “We wish our services were not needed but we are thankful that we are here to provide for these infants and their families.”

Cook Children’s NICU has 99 private rooms and is the only one in Tarrant County that offers single-patient rooms. With roughly 450 employees, the department is the size of a small hospital in itself.

Support NICU Patients and Families

The milestone coincides with one of the biggest fundraisers supporting Cook Children’s NICU. On Wednesday, January 31, the legendary Fort Worth Stock Show and Rodeo will donate half of all proceeds from tickets to Cook Children’s NICU.

Stock Show and Rodeo President, Brad Barnes, is proud to be a continuous source of support for Cook Children’s.

“The joy that comes with knowing the children at Cook Children’s will benefit from this special rodeo performance is immeasurable,” he said. “Of all the projects we’re involved with in this wonderful city, hosting Cook Children’s Day stands out among them all. We look forward to seeing Dickies Arena packed for this wonderful event.”

Brittany says if you live in Fort Worth and have never been to the rodeo, now’s the time.

“It's so much fun, and the fact that this night also directly impacts our tiny patients is just the icing on the cake,” she said.

Treasured Partners

The love and support given to the Cook Children’s NICU does not go unnoticed by the staff.

“I can’t express how blessed I feel every day to be able to come to work and have all the resources we need,” says McLaughlin. “It helps us as a staff to focus on what really matters and take better care of our tiny patients.” 

“As the only Level IV NICU in Tarrant County, we provide the highest level of care available to the sickest babies in our communities,” said Grant Harris, Chief Development Officer of Cook Children’s Health Foundation. “We hope families never need to visit our NICU, but if they do, partners like the Fort Worth Stock Show & Rodeo help make it possible for their babies to receive world-class care right here in Fort Worth.”

Purchase tickets for Cook Children’s Day at the Rodeo here. Can’t make it to the event? Support Cook Children’s NICU families by making a donation here.

On November 12th, 2023, the Cook Children’s NICU Early Support and Care Transition (NEST) Developmental Follow-Up Center celebrated its ten-year anniversary.

About the NEST Clinic 

NEST provides crucial early intervention for babies born prematurely or with medical conditions who may be at risk for future challenges with hearing, seeing, talking, feeding, motor skills and intellectual development. The clinic reduces the risk of long-term challenges for NICU babies by providing early detection and care coordination through the age of five. 

The NEST Clinic’s Medical Director, Yvette Johnson, M.D., M.P.H., came to Cook Children’s in 2013 with the express purpose of establishing the clinic.

“Before NEST, a lot of NICU patients’ care was fragmented,” Dr. Johnson said. “There was no systematic way of evaluating them early on from a developmental standpoint and connecting them to services.” 

Comprehensive Care for NICU Graduates and Their Families 

The NEST Clinic connects families and patients with sub-specialists like psychologists, dietitians, behavioral health counselors and more to provide a comprehensive neurologic and developmental assessment. The clinic also connects families in need with community resources for housing, food, transportation, and finances.

“We provide holistic care for families because a child’s development doesn’t exist in isolation,” Dr. Johnson said. “We really look at the whole family as our patient.” 

By using evidence-based assessment tools to determine kids’ developmental progress, NEST is able to connect them to early interventions. This approach capitalizes on the neuroplasticity of young brains, giving them the best possible chance to reach their fullest potential. 

The clinic also provides post-partum depression and post-traumatic stress screenings for mothers and fathers. “We want to address the mental health issues that often exist within families and that are sometimes triggered by the stress and anxiety of the NICU stay,” Dr. Johnson said. 

NEST offers direct counseling to families both in the clinic and in the NICU. The clinic also partners with NICU Helping Hands, a peer-to-peer support program that connects families with other parents who have been through a NICU journey. 

Continued Growth, Fueled by Compassion

Over the last ten years, the NEST Clinic’s staff has grown from four to 15 members—and this dedicated team is just getting started. The clinic recently received funding to expand its feeding program. It is also in the process of implementing a regional program for early detection of developmental delays and cerebral palsy. 

“That will allow us to pick up those kids who are at the highest risk,” Dr. Johnson said. “We’re expanding our reach, participating in quality improvement and raising the standard of care for this high-risk population.”  

The NEST Clinic staff walks alongside families for as long as they need with the goal of empowering parents to be advocates for their children.

“We have a very dedicated and compassionate team that goes above and beyond for families as they're transitioning out of the NICU and navigating the complexities of care afterward,” Dr. Johnson said.

Having a child in the NICU can be a very stressful and emotional experience for parents. In this episode of Raising Joy, we talk to Landy Blackmore, whose daughter, Tillie, was born prematurely and spent time in Cook Children's NICU. Landy shares her personal story and offers practical advice on how to cope with the emotional rollercoaster that comes with having a child in the NICU.

Whether you're feeling overwhelmed, scared, or simply exhausted, Landy's insights and support can help you navigate this difficult time.

If you're a parent whose child is in the NICU, or if you know someone who is, be sure to listen to this episode of Raising Joy!

Raising Joy is part of Cook Children’s Health Care System’s Joy Campaign, a communications initiative aimed at preventing youth suicides. For more information about the Joy Campaign, visit cookchildrens.org/joy.

New episodes of the Raising Joy podcast will be available each Tuesday. It is currently available on all major streaming platforms including Apple, Spotify and Google Podcasts.

Patients admitted to the Cook Children’s Neonatal Intensive Care Unit (NICU) can spend days, weeks or months there. No matter the amount of time spent there, the connections built between the tiniest patients, their families and their care teams last a lifetime.

For the first time since 2019, the Cook Children’s NICU hosted its annual reunion on Sunday, April 30 to celebrate those connections.

The NICU reunion allows Cook Children’s former patients and their families to reunite with their care teams, including nurses, physicians, therapists, child life specialists and more. The care teams spend a significant amount of time with their NICU patients and their families while they’re admitted to the hospital and they always look forward to seeing how the former patients are doing after they are discharged from the medical center.

The NICU reunion marks milestones and celebrates the achievements and successes of each of our patients.

Among the over 680 excited attendees was the Dorsey family, who spent 216 days in the Cook Children’s NICU with their son, Bryan.  

Bryan was born at 23 weeks weighing 1 pound, 3 ounces. During his stay in the NICU, he spent the first 100 days of his life on a ventilator, underwent several procedures and received 14 blood transfusions.

“He is a fighter!” said his mother, Natalie Dorsey. “Bryan was discharged from the NICU on one liter of oxygen and feedings via G-Button but was able to move past those supports rather quickly. He is a very healthy 4-year-old who attends school and plays T-ball.”

Dorsey said she looked forward to reconnecting with friends at the 2023 NICU reunion.

“I looked forward to seeing familiar faces of people who made a huge impact in our life,” she said. “The last reunion we went to, Bryan was still on oxygen.”

Dorsey added, “Our NICU friends are still some of my most favorite people. My overall experience with Cook Children’s has been phenomenal. After living the NICU life, I decided to give back as a volunteer and now I’m an employee!"

As the parents as partners coordinator, Dorsey often has the opportunity to share stories from her family’s journey at Cook Children’s. 

“All my best stories come from our NICU days!” she said.

By Baylee Simmons, CCLS, Child Life Specialist at Cook Children’s Neonatal Intensive Care Unit

A child life specialist is commonly known as someone who can help a child understand and cope with his or her hospitalization, diagnosis or medical experience.

That being said, I am often asked what role a child life specialist plays in the Cook Children's Neonatal Intensive Care Unit (NICU) where patients are far too young to talk, comprehend preparation for procedures, diagnosis education or participate in play and therapeutic activities typically provided by child life. 

Great question! Child life in the NICU looks very different than in other areas of the hospital. Still, our goal is the same -- to provide support and interventions that promote emotional safety, improve patients' and families’ ability to cope, and reduce the negative effects of unavoidable stress and trauma they endure.

Stress and coping in the NICU

When an infant is born prematurely or with medical needs leading to a NICU admission, the whole family is affected. Most parents expect to take their baby home to a quiet, calm environment where they can heal, bond with this new baby and begin adjusting to life with a new member of their family.

A NICU admission can turn all of those expectations upside down. For the first few days, the mother is often still admitted to another hospital, the delivery hospital. While this is necessary for moms to heal and recover, it creates a lot of stress for the family. The baby’s father and/or other family members have to navigate where to spend their time, who will care for any children at home and so much more.

Patients admit to the NICU for many, many different reasons and these admissions range from a few days to many months depending on the severity of their condition and medical needs. Over the course of a patient’s admission, the stress may change but continues to bring new challenges.

Some parents grieve their first days or months with this baby not looking how they thought, some struggle to feel connected with their baby amidst the restrictions and treatments needed to grow or heal, or wonder how to support, explain things to and include the baby’s siblings without overwhelming them.

Other families find themselves unable to understand/process their baby’s diagnosis and care, juggling time between work and the hospital to maintain income, or processing a tragic situation where their baby might die and making decisions about how to honor their child’s memory or explain that to their siblings. All of that stress impacts a family’s ability to cope with the hospitalization and ultimately provide a secure, nurturing environment for their baby, which plays a critical role in their development and health.

Child Life in the NICU

As a NICU child life specialist, I can often be found hanging a name banner in a new patient’s room, making ink prints of tiny feet or seated on the couch next to an overwhelmed parent listening to whatever troubles their mind that day. These are a few ways I begin getting to know a family, what is meaningful to them, and what individual stressors or challenges they bring to the NICU experience.

This careful assessment allows me to identify what support, education or therapeutic intervention they might benefit from on any given day. I strive to give families the tools they need to be successful in the NICU environment and overcome the stress they inevitably encounter here. That could be using my knowledge of child development to help validate or explain why their 4-year-old daughter is regressing and acting out uncharacteristically or offering a more simplified explanation of new medical equipment being used on their baby using a teaching doll or other resources to strengthen the family and siblings’ understanding. 

I make ink prints or take photos of big moments and milestones babies meet to help encourage their parents and foster that connection throughout their stay. We celebrate holidays and “firsts” throughout the unit to bring a little bit of joy or normalcy into a place where most families feel that they are missing them. And on the darkest days when families are told their baby will not be coming home with them, I offer bereavement support and the opportunity for families to choose how they will honor and memorialize their child’s last moments of life.

Child Life exists in the NICU to support the WHOLE family so that they can better care for and support their baby both in our unit and as they transition home.

Twins AmieLynn and JamieLynn Finley won the hearts of the nurses who fed, diapered and bathed the girls a little differently from other babies in the Cook Children’s NICU.

For the first three and a half months of their lives, AmieLynn and JamieLynn were joined from their breastbones to their bellies. The girls could lie only on their sides, face to face, because their chest/abdomen areas were connected. Caring for them in the NICU required some modification of the usual tools and techniques for infants.

Surgeons at Cook Children’s separated AmieLynn and JamieLynn on Jan. 23 in a rare and complex operation, a first for our medical center. Two separate isolettes brought the girls back to the NICU to recover under the watchful eye of the neonatologists and nurses who know them best.

“I’m excited that we’ve been part of their story,” said NICU Director Brittany McLaughlin, RN. “The team’s been very creative and innovative.” 

Born in October at Texas Health Harris Methodist Hospital Fort Worth, the pair were transported at five weeks to Cook Children’s, where the NICU staff stepped up to the unique challenges of caring for conjoined twins. Consider diaper changes, for instance: “There’s lots of legs flailing everywhere. When they’re both awake and moving, you have to kind of wrangle one’s legs away while you change the other one,” said Brianne Galvan, RN. “You have to be fast.”  

Or lifting their combined weight of about 22 pounds: “You’re not just picking up one heavy baby. It’s a lot more positioning,” said Raye Urbanek, RN. “You have double the number of wires you’re trying not to tangle as you’re taking them from the bed.”

Brianne has been JamieLynn’s primary nurse and Raye has been AmieLynn’s primary nurse since their arrival in November. NICU Manager Megan Maxwell, RN, prepared the setup for their room, which required a bit of layout reconfiguring for monitors and other equipment. Color coding – green for AmieLynn, purple for JamieLynn – designated the name bands, cords and other gear on each girl’s side of the bed.

An additional step to safeguard patient identification happened every time the nurses turned the girls over. Nurses would alternate the spot where the girls’ heads and feet went in the bed to keep AmieLynn always on the left and JamieLynn always on the right after they were turned. “That’s so that we’re not confusing which one’s on which side,” Megan said. “That was obviously a big point of concern. We wanted to keep them safe.”

During the time they were conjoined, the girls’ faces were so close that they could suck on each other’s mouths. That made it tricky to feed them. Speech therapists at Cook Children’s helped by recommending ways to angle the twins’ heads to accommodate bottles.

Bath time required a round TurtleTub rather than the narrower standard model. The girls wore mittens even during their baths to cover their fingernails.

“We just swaddle them up and keep mittens on them because they will start to scratch on each other and then get angry,” Raye said. “If you keep the mittens on, then you can position them in the TurtleTub and have padding for their heads. They’re calm and happy and they love bath time.”

The twins could be propped up on a Boppy pillow or under a jungle gym for playtime. Other stimulation included music, physical and occupational therapy. Stretching exercises helped with the tight muscles in their necks and arms.

Family visits were key too. Their parents, James and Amanda, came to the NICU every day from Saginaw to feed and hold the girls. The babies liked to watch their entertaining 7-year-old brother and be soothed by the songs their grandmother sang to them.

Despite their shared anatomy, the twins developed distinct personalities. JamieLynn is known for her sass and strong will, while AmieLynn is easygoing and observant. Nurses say the girls used to arch their backs like they were trying to get away from each other. It wasn’t easy to keep a fussy baby from waking up her sleeping sister when they’re joined together.

“Amie’s gotten pretty good at sleeping through a lot of Jamie’s antics. But sometimes Jamie’s just punching her and it wakes her up and she is not happy,” Brianne said.

The nurses use words like “amazing,” “feisty” and “beautiful” to describe the twins. They look forward to cuddling the girls one at a time. Now that they're recovering in separate beds, Brianne predicted that AmieLynn and JamieLynn would miss the constant close proximity of being connected. “We’re going to have to figure out something so they can see each other in the NICU.”

Mary Frances Lynch, M.D. is the neonatologist for JamieLynn. Chad Barber, M.D. is the neonatologist for AmieLynn. Each has 16 years’ experience at Cook Children’s.

Dr. Lynch cited some medical complications that arose from conjoining:

• Limited mobility. The twins couldn’t be placed on their backs or tummies. They had to be turned frequently to prevent positional deformities and skin from breaking down.
• Breathing issues. JamieLynn needed oxygen by nasal cannula.
• Feeding concerns. IV nutrition and nasogastric feeding tubes allowed them to get their full feeding if they weren’t able to bottle feed. One twin grew significantly more than the other, likely related to their shared blood supply.

“Our primary focus in the NICU prior to surgery was to optimize their nutrition so that they could grow as much as possible,” Dr. Lynch said. “The bigger they are and the better their nutrition is, the easier their recovery after separation.”

During their post-surgery stay in the NICU, Dr. Barber said, major concerns include respiratory support and pain control. He and Dr. Lynch feel fortunate to take care of sick babies alongside the entire NICU team.

“It’s a big honor to be trusted by parents in the NICU,” Dr. Barber said. “Every day we have parents who are basically turning their child’s life over to us and believe in all the decisions that we make.”

Written by Ashley Antle. 

All babies are special, but 16-week-old twin sisters JamieLynn Rae and AmieLynn Rose Finley are making history in one of the most unique ways possible. On Monday, they became the first conjoined twins ever to be separated at Cook Children’s Medical Center in an 11-hour procedure months in the making.

Conjoined twins are estimated to occur in only 1-in-200,000 live births. JamieLynn and AmieLynn are omphalopagus twins, meaning they are joined at the abdomen and share one or more internal organs. In their case, it’s a liver.

“As far as conjoined twins that reach and stay viable after birth, at least for the first few days, there's really only about five to eight of those per year on the entire planet, so it is very rare,” said Jose Iglesias, M.D., Cook Children’s medical director of pediatric surgery.

Even so, the girls’ story begins like many others.

James Finley and Amanda Arciniega of Saginaw, Texas, wanted to add one more baby to their family of five. The youngest of their three children at the time, 7-year-old James, was elated at the prospect. He’s always wanted a younger sibling and playmate.

Little did any of them know — or expect —their hope for one more would become a gift of two.

“She said that's the baby's head,” Finley said, describing how their obstetrician shared the unexpected news of twins at their 10-week ultrasound. “I was like, ‘What is that?’ and she said, ‘That's the other baby's head.’ And I was like, ‘What?’”

Double Blessing

The revelation of the twins' connection came early in the pregnancy. The 10-week ultrasound showed the babies had little to no separation between them. Images taken at the following appointment confirmed the babies were conjoined. Suddenly, the family’s excitement for welcoming two new additions was covered by a cloud of questions, uncertainty and fear. 

“I would not have thought in a million years that I would have twins,” Arciniega said. “And then conjoined twins on top of that.”

In the months that followed Arciniega enjoyed an easy and uncomplicated pregnancy, save for the many appointments with specialists across the state to determine who best to deliver the twins and what hospital was most capable to care for them after birth.

The couple settled on maternal-fetal specialist Bannie Tabor, M.D., whose practice is located at Texas Health Harris Methodist Hospital Fort Worth in Fort Worth, Texas. He is also the medical director for Cook Children’s Fetal Center. In his 32-year career of caring for high-risk pregnancies, Dr. Tabor has delivered more than 5,000 babies.

Soon after taking Arciniega and her unborn babies as patients, Dr. Tabor reached out to Dr. Iglesias, a longtime colleague, to review the case and discuss the possibility of separation.

“It was a big surprise when I got the first phone call from Dr. Tabor saying he had conjoined twins that he was starting to follow,” Dr. Iglesias said. “At that time they really didn't know the babies’ anatomy specifically. So I said there is a big range of possibilities and we need to see what happened with the initial MRI to make some plans from there.”

Many conjoined twins die in utero or do not survive long after birth because of the nature of their joining and the organs they share. But scans showed JamieLynn and AmieLynn each had their own heart and heart sac, increasing their chance of survival and making them candidates for future separation.

“I think the key thing when we first met the family was they had a lot of anxiety about the situation, what the options were and what they could do,” Dr. Tabor said. “I think I gave them the confidence that, while I could not promise everything would work out, we would do everything that we could and, with everybody involved — from me to the neonatologists to the surgeons — they were in the right place.”

Family Ties

Texas Health Harris Methodist Hospital Fort Worth and Cook Children’s Medical Center have a long history of physical and professional collaboration. Both facilities are located in the heart of Fort Worth’s Medical District along a historical stretch of Pennsylvania Avenue that cattle barons once called home. The two facilities are joined by a skywalk and, in Cook Children’s early days, even shared some utilities. Local neonatologists practice at both hospitals’ neonatal intensive care units (NICUs) and many Texas Health Fort Worth obstetricians, including Dr. Tabor, regularly consult with Cook Children’s pediatric specialists.

“The working relationship between the whole team, that's made possible by the close relationship of the hospitals, allows us to be the center that can provide this type of highly advanced service to North Texas so families don’t have to go halfway across the state or halfway across the country or even to Dallas for care,” Dr. Tabor said.

Early in the pregnancy, Finley and Arciniega also consulted Ben Gbulie, M.D., F.A.C.S, of Posh Plastic and Reconstructive Surgery in Mansfield, Texas, and a member of the plastic surgery faculty at Cook Children’s. They learned of Dr. Gbulie through Finley's mother, whose friend told her of a local plastic surgeon with experience in multiple conjoined twin separation surgeries.

After long discussions with the couple, he pointed them toward Cook Children’s Medical Center.

“I explained to them that traveling for surgery is not a problem, and a lot of people do that,” Dr. Gbulie said. “But if you can get the same quality of care where you live, it's always better because you want to be able to have long-term follow-up. While this is a major, complex operation, it is not something that is beyond what I felt Cook Children’s could do.”

Finley and Arciniega were relieved to hear Dr. Gbulie’s recommendation. The family lives less than 30 minutes from Cook Children’s. To know that they could stay close to home, close to their other children and close to their support system was comforting.

Cook Children’s was also familiar. Two of the couple’s older children have received care at the medical center. Their daughter, Aaliyah, 13, spent weeks in Cook Children’s pediatric intensive care unit (PICU) when she was 7 for a nearly deadly bacterial infection called Bartonella henselae. It’s commonly known as cat scratch fever and can be acquired when scratched by a cat. Big brother, James, is a frequent visitor to Cook Children’s as he manages sickle cell disease. 

“Sometimes we come in here and I’m like, ‘Hey, I’ve seen you before,’ to a doctor that has been around our son or Aaliyah, and they’re like, ‘Hey, I’ve noticed you, too,’” Arciniega said. “So it’s kind of like we’re family here.”

“Everybody’s always treated us nice,” Finley added. “It takes a lot of pressure and anxiety off when you know your kid is going to be taken care of.”

Delivery Day

As the babies grew in utero, Dr. Tabor closely monitored their progress and, together with a team of doctors from both hospitals, prepared a delivery and post-natal game plan. During Arciniega’s third trimester, Dr. Tabor became concerned with the slow growth rate of the babies and determined it was best to deliver them early.

On Oct. 3, 2022, at 34 weeks gestation, JamieLynn and AmieLynn were delivered via C-section at 10:40 a.m. at Texas Health Fort Worth. Arciniega required a vertical incision over the traditional horizontal approach to delivering the babies safely. Both weighed 4 pounds, 7.8 ounces. JamieLynn was the longer of the two, measuring 16.9 inches to AmieLynn’s 16.5 inches.

“It wasn’t an easy delivery, but we made it look easy,” Dr. Tabor said reflecting on that day.

Upon delivery, neonatologists Chad Barber, M.D. and Mary Frances Lynch, M.D., took over the babies’ care in Texas Health Fort Worth’s NICU. Like with any set of identical twins, telling them apart can be tricky and, if mistaken, dangerous in the hospital setting. To help keep their identities straight, Dr. Barber and Dr. Lynch chose a favored color for each girl, purple for JamieLynn and green for AmieLynn, and used Sharpies to mark each baby’s color on one of their nails.

After a month, the girls were transferred to the NICU at Cook Children’s Medical Center where they remain today, still under the care of Dr. Barber and Dr. Lynch who practice at both Texas Health Fort Worth and Cook Children’s. The girls’ color codes followed them there, too, and are used as an additional layer of safety when identifying the babies for medication administration, feedings and individual care needs. They even inspired the purple and green crayon costumes the girls sported for Halloween.

Home Away From Home

In the NICU room, which has been their babies’ home since November 2022, Finley and Arciniega attend to their infants like many other parents of twins — together. It takes two to pick them up, especially considering how they must navigate the tubes and wires that monitor the babies’ vitals and deliver nutritional support. Scripted signs handmade by the NICU nurses hang on the wall, making their private NICU room look a little more like a sweetly appointed home nursery.

The girls lay face-to-face on their sides, carefully and frequently repositioned from one end of their shared crib to the other in order to give equal time on each side. Although currently the smaller of the two, JamieLynn is wide-eyed and alert. Her gaze fixes on and follows those that enter the room. She’s feisty and makes sure everyone knows when she is unhappy. Sister, AmieLynn, is more reserved. She’s often the calmer and more chill of the two.

Together, the beloved girls evoke the attention of their parents who make sure there are enough cuddles and kisses to go around, especially from their protective dad. He’s already planning ahead for the days when young men come calling for any one of his three daughters.

“Every window will have a rose bush underneath,” Finley said with a laugh, but only half kidding.

Their days in the NICU are filled with feedings, naps, diaper changes, baths and a number of therapies to help with mobility, strength and eating. The girls respond especially well to music therapy and love it when Grandma sings to them during her visits. Their siblings, brother Isaiah, 15, Aaliyah and James, visit regularly, too. James loves to entertain them, and the girls respond with delight.

Their face-to-face positioning makes feedings and diaper changes a challenge, but nurses have developed creative workarounds to accomplish both. Most of the time they can be bottle-fed one at a time by a single caregiver, with AmieLynn often waiting patiently until sister is satisfied. When patience runs out, feeding is a two-person job.

The older they get, the more they move their limbs. It’s not uncommon for one to unintentionally punch and sometimes anger the other. The girls wear mittens to protect each other from scratches.

All the while doctors monitor their progress, study their anatomy and plan for the enormous task of separation. 

Journey to Separation

The timing of conjoined twin division varies from case to case and primarily depends on how complicated the anatomy is. In the girls’ case, their anatomy and growth support a surgery date sooner rather than later.

While the girls are thriving in the NICU, they are not growing at the same rate, partly because they share some blood supply.

“One is stealing groceries from the other, basically,” Dr. Barber said.

AmieLynn is beginning to develop scoliosis. Feedings are becoming more and more challenging with their size, mobility and face-to-face proximity. While separate, their hearts are exceedingly close together and grow ever closer as the girls age.

“They're pretty much at their maximal, I like to say, baby stretchability,” Dr. Iglesias said. “So their skin is pretty stretchy. Their abdominal walls are stretchy. We've got the benefits of using that. By separating early, they're not going to be as used to the loss of having essentially part of you that is different, so hopefully, that transition will be better. There are not very many more benefits to waiting longer versus doing it now.” 

At nearly 4-months-old, the time is right.

It’s taken months of planning and collaboration. Countless hours have been spent building a comprehensive medical team, studying scans of the girls, building models of their anatomy, mapping out potential surgical solutions, identifying the what-ifs, troubleshooting potential problems, inventorying equipment needed to accomplish the surgery, preparing the operating room (OR) and rehearsing the carefully choreographed surgical production. Dr. Barber estimates there have been at least 100 medical professionals, from physicians to nurses to therapists and other clinical specialists, intimately involved in the girls’ care and surgical planning.

“I think the teamwork is a great point to bring up because it's everything,” Dr. Iglesias said. “It takes a huge team to get all of this working as smoothly as you can make it, given the unknowns that we'll have. Having everybody open and honest talking to each other regardless of their position, that's the definition of teamwork.”

The surgery comes with great risk and a number of unknowns. Because they must dissect the liver, an extremely vascular organ, bleeding is a concern. A significant risk of infection also exists, for which the twins will be monitored weeks into recovery. Doctors are unsure of how the babies’ hearts will respond to their new anatomic position as the girls lay on their backs for the first time in their lives. Then there are questions about how to best close the abdominal wall, many of which can not be fully answered until separation is accomplished. The girls may require additional surgeries to complete closure and reconstruction.

“In order to prepare for this, it's a lot of practice, practice, practice and more practice, trying to really think of every possible scenario so that we're not surprised by anything,” Dr. Barber said. “There's always going to be unexpected things, but if you're prepared for the worst possibilities and the most unlikely outcomes, then you can hopefully not get too caught off guard.”

For their part, mom and dad pray, leaning on the same faith in God that carried them through when their older children faced medical crises.

Separation Day

Monday, Jan. 23, 2023. JamieLynn and AmieLynn are ready for their big day. Thanks to their NICU nurse, they’re sporting fresh mani-pedis in their signature purple and green to help identify them in the OR.

Before the sun rises, family and members of the medical team gather in the girls’ NICU room. It’s calm and quiet as mom and dad steal a few final pre-surgery kisses from their babies. Grandma sings softly. Others pray. The girls are awake, content and comfortable. Just before 7:30 a.m., they begin their journey to the OR.

Inside the OR is a sea of medical professionals: three anesthesiologists, four pediatric surgeons, two plastic surgeons and about a dozen other clinical professionals. They are separated into two teams, one for each girl. Those in purple scrub hats belong to JamieLynn’s squad, while Team AmieLynn dons the green. Everyone will work together until the babies are separated, then each team will focus solely on their assigned baby.

“The reason that's important is because you need focus,” Dr. Gbulie said. “You want to minimize room for errors and the risk of confusion. So little things like color-coding everyone and everything minimizes the risk of giving the wrong medication on either side. It's truly a community effort that involves a multi-specialty team.”

The first few hours involve inserting central lines for delivering anesthesia and placing breathing tubes. Then, sedation begins. The process is slow and methodical.

“When we're talking about taking care of conjoined twins compared to taking care of just a single baby, one of the biggest questions is what is shared, and there does seem to be some shared circulation between the girls,” said Chandra Reynolds, M.D., the lead Cook Children’s anesthesiologist on the surgical team. “What is the response going to be for baby B when we give baby A certain medication? It’s a very slow and stepwise approach until we better understand what happens to one when the other receives medication. The key thing is to give one baby a certain amount of medication, watch and wait for a while to see how things are going and, based on that response, we can give her sister a certain amount as well.”

Once the girls are safely asleep, the surgeons begin marking incision lines. At 12:28 p.m., the separation officially begins. Guided by plastic surgeons, they are careful to make cuts that give the girls’ abdomens the best chance of closure.

First, surgeons open the abdominal wall and dissect the lower part of the sternum and the liver. A little under two hours in, the family receives word that the girls’ shared liver is separated. The private waiting area where the family anxiously awaits news of progress erupts with cheers. Finley and Arciniega embrace.

Surgeons painstakingly work layer-by-intricate-layer until they reach the backside of the abdominal wall where they complete the dissection.

The update everyone’s been waiting for comes at 3 p.m. JamieLynn and AmieLynn are officially separated and on their backs. Tears and shouts of praise flow from family and friends in the room. Their relief is palpable.

“I want to tell you that all of the people in there taking care of them cheered even louder than this,” said the nurse delivering the news, followed by laughter from the family.

There is still a long way to go.

“Once the babies are finally physically separated, then we have to initially look for other additional anomalies and see if there is anything else going on,” Dr. Iglesias said. “We transfer one baby to the other bed where one surgeon will follow and an additional surgeon will pick up with the other and continue to do the evaluation.”

Once each baby is ready for closure, their assigned pediatric surgeons, Dr. Iglesias for JamieLynn and Marty Knott, D.O, for AmieLynn, begin closing the chest and abdomen. Plastic surgeons Dr. Gbulie and Eric Hubli, M.D., Cook Children’s Surgeon in Chief and medical director of craniofacial and cleft surgery, assist with skin closure.

By 6 p.m., the surgery is complete. This time Dr. Iglesias, Dr. Gbulie and Dr. Knott deliver the news to the family.

“We did it,” Finley said in response. “I don’t know what I did, but we did it.”

To this Dr. Iglesias replies, “You trusted us. That’s what you did.”

All the while, neonatologists Dr. Barber and Dr. Lynch stand by for the girls’ post-surgery return to the NICU.

One by one, the sisters exit the OR on their way back to their familiar home away from home in the NICU. For the first time in their lives, they lay on their backs, each in their own crib. The family gets a momentary glimpse from afar as the girls are wheeled past the waiting room, and cheer them on as they pass. About an hour later, mom and dad are able to join the girls in the NICU.

The first look at their twins in separate beds brings a wave of emotion. For the first time, they must divide their attention between the two. They start with JamieLynn. Arciniega places her pinky finger in her baby’s hand.

“It’s OK, Mommy’s here,” she whispers.

Then to AmieLynn. Finley gushes about her strength and how proud he is of his quiet fighter.

It’s a monumental moment, but none of the physicians are ready to say “mission accomplished.”

“The challenges the girls may face after surgery are very difficult to fully prepare for,” Dr. Lynch explained. “We do still have some unknowns as far as how their shared vasculature and their shared anatomy and positioning over these last three months will affect them. As Dr. Barber alluded to earlier, we have to prepare for many different scenarios. The things that will worry us and that we’ll be the most focused on in the first few days are going to be breathing support and pain control. As you can imagine, this is an incredibly big surgery and pain control will be at the top of our list.” 

They’ll be watching for signs of infection, too.

“The soft tissue usually swells over the first two to three days,” Dr. Gbulie said. “If you get through those two to three days, you're usually OK. That being said, we are going to be going through potentially some bowel and definitely the liver, so there is a relatively higher risk of wound infection and that usually shows up at about five to 10 days.”

Road to Recovery

Recovery is best described as slow.

“I'm sure mom and dad are going to think we're moving in slow motion,” Dr. Iglesias said. “The first steps are going to be healing of the very large incision that is required to separate them. We have to wait for their gut to start to work before we start allowing nutrition to move through their intestines. Some of these things may require staged procedures so the family's ready that the abdominal closure may take more than one operation. We're hopeful it won’t, but that's a possibility.”

They’ll need extensive rehabilitation, too, which will include nutritionists, physical therapists, occupational therapists, speech therapists and more.

Doctors say they’re optimistic but will continue to hold their collective breath until they are waving goodbye to the girls as they leave Cook Children’s for their first ride home.

“I'm very hopeful that they're going to have a good recovery and lead healthy lives in the future,” Dr. Iglesias said. “They're going to have a bit of a ramp up from the recovery, but I think they're going to be able to get there eventually, and very close to normal if not completely normal.”

Until that chapter of this story begins, JamieLynn’s sassy spirit and AmieLynn’s sweet smile remain on full display as their NICU team continues to care for their daily medical, physical and emotional needs. This time, together, but separate.

Cook Children’s is a not-for-profit organization. Donations to Cook Children’s Health Foundation allow us to care for our families when and how they need us. Give today to support patient families like Jamie and Amie. Go here. To donate items at the Medical Center for Jamie and Amie, email AandJ@cookchildrens.org.

Story by Jean Yaeger. Video by Tom Riehm.

Babies and toddlers treated for viral respiratory infections at certain Cook Children’s locations can get their breathing checked at a special clinic that provides free follow-up visits. 

The clinic serves children ages 2 months to 2 years old who were previously admitted to these Cook Children’s facilities: Medical Center, Emergency Department (ED) or Urgent Care centers. What’s the benefit? For up to a week after these patients go home, their caregivers can bring them to be seen by therapists who specialize in caring for the lungs. 

No appointment is necessary at the Cook Children’s Respiratory Outpatient Clinic. But patients must have a referral from a provider at the Medical Center, ED or Urgent Care centers.   

The clinic is designed to give guidance and reassurance to parents whose little ones are continuing to recover from severe bronchiolitis. If a child has trouble breathing or other complications within seven days of being discharged, the experts at the clinic can do an evaluation. 

Janie Galindo found out about the clinic at the Cook Children’s Urgent Care center where her twins, Dallas and Dionne, tested positive for the respiratory syncytial virus (RSV) in October. Thanks to a referral from their Urgent Care provider, Janie had access to the clinic when her babies got sicker overnight. As soon as the clinic opened the next morning, they were there.   

Just as their mom suspected, Dallas’s and Dionne’s symptoms had gotten worse. A respiratory therapist met them at their vehicle and took them inside for evaluation. In their case, the clinic checkup ended with admission to the hospital.   

Janie is grateful for this resource. And she urges other parents to take advantage of the clinic, which Cook Children’s has offered every year since 2019 during peak season for respiratory illnesses. The clinic saw 119 patients from September through December 2022.

A surge in RSV and flu cases has hit hard in North Texas and nationwide in recent months, contributing to long wait times in health care settings. But the convenience of the Respiratory Outpatient Clinic at Cook Children’s can allow families to avoid returning to the crowded ED or Urgent Care locations where their child was recently treated. 

Families come to the clinic seeking peace of mind. Many children are doing OK and can go back home. Others might need additional treatment as Dallas and Dionne did. 

“It was so helpful,” Janie said. “If your babies aren’t better, just to ease your nerves, just take them in. It doesn’t hurt.” 

The clinic, located at the Medical Center in Fort Worth, is open through March. Hours are from 11 am-7 pm daily. Here’s how it works: 

• Get a referral and instructions when your child is discharged from Cook Children’s Medical Center, ED or Urgent Care with a bronchiolitis/RSV diagnosis.  You can come to the clinic as often as twice a day over the next week. 
• Park in the designated area, call the clinic when you arrive, and wait in your vehicle.
• In the meantime, registration personnel verifies that your referral is on record.     
• A respiratory therapist from the ED walks you to the clinic. The therapist checks your child for labored breathing, low oxygen, dehydration and other concerns. The therapist also determines if your child needs further medical attention.  
• There’s no charge, and insurance isn’t required. 

Cathy Carroll, respiratory director at Cook Children’s, said the clinic is structured to serve children with RSV or bronchiolitis who are otherwise healthy after they leave the Medical Center, ED or Urgent Care. If concerns arise while their children recover at home, parents can bring them to the clinic for a quick outpatient visit. “It’s very helpful, reassuring and a great experience for parents,” she said.

Carroll said the clinic is staffed by respiratory therapists who reinforce the educational tools that were provided when the patients were discharged earlier. The therapists take the opportunity to explain signs of low oxygen -- teaching parents to look for fast or shallow breaths, flared nostrils and bluish lips. It’s a model that aims to prevent unnecessary return trips to the ED or Urgent Care. 

The clinic was there when Dallas and Dionne needed help to fight RSV. This is their story. 

Two Too Sick  

Dionne and Dallas were born 15 weeks early, in August 2021. They each weighed less than 2 pounds, and their lungs weren’t fully developed. Dallas was intubated to help him breathe while in the neonatal intensive care unit (NICU). After several months in the NICU, the preemies were strong enough to join their parents and three older siblings at home in Fort Worth. 

The U.S. Centers for Disease Control and Prevention puts children like Dionne and Dallas in a category for higher risk from RSV, due to their impaired lungs at birth. Other higher-risk groups include infants younger than 6 months old, and children with heart disease or weakened immune systems. 

One day in October, Dallas started running a fever, coughing and throwing up. Dionne soon came down with similar symptoms. The 14-month-old siblings were too sleepy to play or eat. Dionne, who is normally feisty, wanted to be held constantly. Dallas, who is normally cuddly, wanted to be left alone. Then he started breathing rapidly. 

“I don’t think this is a cold,” Janie thought at the time. She took both twins to Cook Children’s Urgent Care, where they were tested for flu, COVID-19 and RSV. The RSV tests came back positive, but their vital signs weren’t alarming. 

Urgent Care staff gave Janie a referral to the Respiratory Outpatient Clinic and encouraged her to take the twins for a follow-up visit if their illness changed for the worse anytime in the next week. Back at home, Janie grew concerned when the babies had more trouble keeping food down. And she thought Dallas’s lips began to look gray.  

“They were really groggy. They weren’t crying because they didn’t have energy. They were just blah. Dallas had a really bad cough. Dionne wasn’t doing good at coughing it out.” Janie wanted a medical professional’s opinion. 

So she took the twins to the clinic’s designated parking area when it opened at 11 am. Within the hour, therapists were evaluating their condition. Dallas and Dionne then were admitted to the Medical Center, receiving oxygen and IV fluids for dehydration. A high-flow oxygen device was used on Dallas because his oxygen level kept dropping when he slept, Janie said. 

The twins perked up quickly. They wanted to eat and play with toys in their hospital room. But their airflows still needed monitoring, and they needed rest. Dionne stayed in the hospital for six days; Dallas for nine.  

Janie said she appreciates that because of the referral from Urgent Care, the clinic already had the background on Dionne’s and Dallas’s diagnoses. That made it easier and faster to get checked out by respiratory experts the next day without having to go back to Urgent Care. “It was nice to already know what was going on. We were just following up on that.”   

More info on RSV 

Most of the time, an RSV infection causes a mild illness like a cold. But it can also lead to bronchiolitis or pneumonia in young children. Early symptoms are runny nose, decrease in appetite and cough. Get medical help right away for more serious symptoms:

• Fast, shallow breathing, indicated by the belly moving up and down quickly and the area around the ribs sinking in. 
• Extreme fussiness, can’t be comforted.   
• Sleepiness, won’t wake up for feedings. 
• Poor appetite and fewer wet diapers.  
• Blue color to the lips, tongue or fingernails. 

Help prevent the spread of RSV by washing your hands often, avoiding close contact with sick people, covering your coughs and sneezes, and staying home when you’re sick. 

Santa Claus stopped by to visit our tiniest patients in the Neonatal Intensive Care Unit to spread Christmas cheer. The babies were dressed in festive outfits to celebrate their first Christmas.

Finding infant formula on store shelves can still be tricky if you’re shopping for specialized types made for premature infants or babies with digestive complications.

Nutritional experts at Cook Children’s say some patient families are struggling even though formula availability generally has improved in recent months. The 2022 shortages have been blamed on a manufacturing recall and supply chain disruptions.

Brand options tend to be limited for preemies, who require formulas with higher calcium, phosphorous and protein for their bone and brain development. Likewise, infants who undergo surgery on their stomach or intestines might need certain easy-to-digest formulas.  

We spoke with three registered dietitians – from the Cook Children’s Neonatal Intensive Care Unit (NICU), the N.E.S.T. Clinic, and the Gastrointestinal Clinic – about tips and support for parents when the formula their baby takes is out of stock.

Their advice? Consider switching to another appropriate brand. Use the imported formulas that received approval from the U.S. Food and Drug Administration. Ask your pediatrician for samples. Don’t dilute formula or make your own version. And don’t give up.  

“I still see grocery stores with formula shelves that look about half empty or less,” said Hayley Spinks, a clinical dietitian in the NICU. “If you’re looking for a specific formula, it doesn’t really matter if the shortage is getting better overall. If you can’t find the formula that your baby needs, it’s really a big deal.”

One resource the dietitians share is a substitution list they created to help families know which brands fall in categories for particular needs. The substitutions list includes standard formulas, premature formulas, reduced lactose formulas and more. Go here to view the formula substitution chart.

The shortage continues to cause challenges and frustration, but dietitians are working to help parents find solutions. Here are their viewpoints.

In the NICU

Dietitians in the NICU monitor growth of the smallest babies, who sometimes need fortifiers added to their feeding regimen. When a preemie product runs out of stock, Spinks said, they turn to alternatives with the right nutritional components that the infant can tolerate. Signs of formula intolerance may include diarrhea, vomiting and belly bloating.

Before patients are discharged, Spinks and her colleague in the NICU like to ask the parents whether they’ve been able to find the formula they need. “Some moms are telling me that they’ve looked and they can’t find the formula that their baby is on,” she said. Others tell her they’ve enlisted relatives and friends to help search the stores.

Spinks makes a habit of checking the formula aisle when she’s shopping. She also belongs to formula finder groups on social media. “I’m always trying to keep my eye on the situation of what we can expect,” she said.

She encourages parents to have confidence in the safety of formulas that have been imported since May to relieve the shortage in the United States. But she cautioned that the measurements might differ (milliliters versus fluid ounces). Always follow the recipe on the can.

In the N.E.S.T. Clinic

The Cook Children's N.E.S.T. Developmental Follow-up Center (cookchildrens.org) provides support, interventions and care coordination for NICU babies as they transition home.

 “A majority of our patients require specialized formula either to meet their increased nutrient needs from prematurity or to improve their tolerance and absorption,” said registered dietitian Kayla Harrell.

Harrell said the shortage has forced some patients to change formula multiple times, incurring the risk of tummy distress, allergic reactions and other symptoms of intolerance. She has seen some improvement in availability. But parents tell her stories of driving up to two hours to track down formula or shipping it from out of state.    

For children with medically complex dietary situations, Harrell said, the formula hunt can be difficult and heartbreaking.

“You are not alone,” she said. “We are always here to help find the best solution for your precious child.”

In the GI Clinic

Gastrointestinal conditions can include bleeding, inflammatory bowel disease, chronic liver disease, swallowing dysfunction and nutrition absorption disorders. Some patients require formula fed through gastrostomy tubes called G-buttons.

Chelsea Barrow, a registered dietitian, said many children with GI problems have significant allergies, growth failure or reflux that causes them to rely on highly specialized formulas delivered from medical supply companies. Some of these formulas have gone in and out of stock, causing shipments to be delayed or partially fulfilled, Barrow said.

“Families are telling us they are driving around everywhere to find formulas,” she said. “They’re unable to find formula on the shelves or online. There’s limited access to grocery stores and pharmacies in their small rural towns. Families are asking if anyone has formula to spare or looking to social media for options.”

Barrow said it’s important to communicate with your health provider regarding brand substitutions. Not all formulas are interchangeable for individual patients, and mixing instructions can vary between brands. She urges patience as the dietitians navigate the inconsistent formula availability by adjusting orders, communicating with medical supply companies, fielding phone calls and continuing to see a full clinic load.

“There is indeed a light at the end of the tunnel with the return of many specialized formulas,” she said. “We are all working very hard and long hours to ensure families have something safe to feed their child.”

RELATED: Two Cook Children’s pediatricians shared their guidance on the infant formula shortage. Click here to watch videos in English and Spanish. 

The moms created custom jewelry at no cost, as a part of the program. They chose their own colors and components to create a piece at the Color Bar.

“Today's event focused on mothers and NICU moms who may be first-time moms and may be celebrating their first Mothers Day while in the hospital,” said Megan Hodges-Cook, Community Program Coordinator at Cook Children's. “We've invited those NICU moms to make something special just for them. I consider it a jackpot day because it's like hitting the jackpot.”

It's the first in-person Kendra Scott event at Cook Children's since before the pandemic. Kendra Cares visits pediatric hospitals across the country.

“We're here to spread a little more love and joy,” said Rachael Stagner, Kendra Scott Event Manager.

At the Neonatal Intensive Care Unit (NICU), patients dressed up and posed with their moms to celebrate their first Mother's Day!

Other patients and their moms celebrated with Mother's Day arts and crafts at the Atrium inside the Cook Children's Medical Center.

For the second year in a row, Randall Grubbs, M.D., neonatologist, wore a jolly red suit, white beard and proper PPE to spread holiday cheer to the babies, families and staff in our Neonatal Intensive Care Unit (NICU). 

Parker arrived at Cook Children’s Neonatal Intensive Care Unit (NICU) on June 29 for treatment of chronic lung disease and heart defects after being born two-and-a-half months early and weighing 1 pound 10 ounces. A complication with umbilical cord blood flow contributed to his premature birth and development issues.

Since then, Cook Children’s NICU has been home for Parker and his mom, Misty Kent of Brownwood, who stays with him each day and sleeps at the nearby Ronald McDonald House at night. His dad makes the two-and-a-half-hour drive from their family’s home to see him on weekends. But Parker’s grandparents and siblings—two sisters and two brothers, whose ages range from 14 to 21—have seen him only once when his condition worsened to the point that physicians called the family in.

“They got to come up and see him for two hours, but they didn’t get to touch him. He was so little then,” Kent says, glancing at Parker, who now weighs 10 pounds. “It has been a journey, to say the least.”

But a newly installed camera system in the NICU may help ease some of the stress for Parker’s family and others like them—especially with restricted visitation in the pandemic—by giving them a chance to lay eyes on their babies whenever they want. The system, created by AngelEye Health, went live last week, allowing families 24-hour-a-day access to their babies via individual room cameras, says Sheralyn Hartline, RN, and NICU director at Cook Children’s.

Funded by private donors in the community, AngelEye cameras—a total of 106 in the NICU—are set over patients’ beds and turned off only if patients are out of bed or if care is being performed, she says. One access link is given to the NICU patient’s mom, who then can share with other family and friends, Hartline says.

The AngelEye system will benefit the parents and families alike, she says.

“This will allow our parents to go home, get a nice rest and still have the comfort of looking at their baby from home,” she says, adding many of them live out-of-town and face long travel distances. “It’ll allow grandparents and siblings to see the baby, too, because many people haven’t been able to meet the newest family member due to COVID restrictions.”

COVID restrictions limit families to two visitors during an entire NICU stay, Hartline says. An average NICU stay lasts about 20 days, but some patients like Parker remain for months, she says.

“We’re hoping the cameras will help take the place for some of what’s been missing for quite a while now,” Hartline says. “It will allow for some family moments we haven’t been able to have over the past year and a half.”

As soon as the cameras were turned on, it made a difference for Parker’s family, Kent says.

“Our family is over the moon. This morning, as soon as it went live, I sent a link to Parker’s dad and grandma, and they were both on it within two minutes,” she says. “And, of course, grandma cried because she was so excited to be able to see him.”

His siblings also planned seeing him on camera later in the day, she says.

It is unclear how much longer Parker—who needs a tracheostomy tube to breathe and uses a gastrostomy-button for feeding—will remain in the NICU.

“We’re still watching his heart pretty closely,” says Kaitlin Tarver, RN, who works in the NICU.

His heart and lungs might continue to develop on their own in the next couple of weeks, she says, or he may need surgery to repair two holes in his heart before he goes home. In the meantime, they’re placing him on the floor to play on his belly, sitting him up with a support pillow, putting him in a swing or just getting him out of bed to look at the sunshine, Tarver says.

Kent understands the challenges her son faces in the coming weeks.

“He has been here a long time, but we’ve overcome huge obstacles in these six months. We’ll be here for a while longer, but that’s what we need to do to get where we need to be,” she says. “Cook Children’s is one of the biggest blessings we’ve ever had in our lives. If he wasn’t here, he would not be alive.”

And while her son is in NICU, she sees AngelEye cameras as an asset in case she wants to check on him in the middle of the night or if she needed to go home for a school function for one of her children.

 “I think people who aren’t in the NICU or who have never had to face this situation might not understand the gravity of it and how this will help people going through it,” Kent says of having room cameras available for families. “If you’ve never been in this situation, it’s hard to grasp. But I can speak to it because I have other children and have never had to deal with this until now. It’s a life-changing event—like your entire life changes.

“So, if you cannot be here for whatever reason, it may give you peace of mind that your child is OK—you can see it with your own eyes,” she says. “It’s a very, very big deal.”

Kaitlyn Smith was born to Bill and Jennifer Smith at Harris Southwest on Jan.18, 1996. After months of a perfectly healthy pregnancy, the couple learned Kaitlyn was arriving early. When she was born, she was transported to Cook Children’s by Teddy Bear Transport, and her parents learned the severity of their daughter’s condition.

“When we got to see her, the doctors let us know her condition was critical. They didn’t offer us much hope, but as a first-time mom, I knew we had to try something. I was pleased they were willing to do what they could,” Jennifer recalls.

The first indication something was wrong with Kaitlyn was when the doctors noticed she was unable to pull in air through her nose, they later diagnosed her with CHARGE Syndrome. After more tests, the doctors informed the couple Kaitlyn had three holes in her heart and they would need to perform heart surgery.

Kaitlyn was alive 19 days before she ultimately succumbed to complications with her heart surgery. Throughout her time in the hospital, the family met a young nurse named Candace Alphin. Alphin cared for Kaitlyn during her shifts, and when she died, Alphin was there for the family.

“Kaitlyn needed multiple surgeries. Unfortunately, she was one that we couldn't fix, and I’m a fixer, “Alphin said. That was hard for me. As a newer nurse, it was hard to realize we couldn't make everybody what we wanted them to be.”

The Smith family understood their daughter couldn’t be “fixed” and their faith got them through the trying moments. They believed if the doctors could learn anything from their daughter, then everything they endured was worth it.

“Candace helped prepare us for what the doctors were going to want to do. She explained everything thoroughly and made sure we understood what was taking place as Kaitlyn’s conditions worsened,” Jennifer said.

Just over a year after losing their daughter, the Smith family welcomed another baby girl. Honoring the nurse who took such good care of Kaitlyn, they named her Candace.

The couple said agreeing to name their daughter after Alphin didn’t come with any hesitation.

“I asked Jennifer what she thought about naming her after Candace because of the connection we felt with her, and she agreed that it would be a nice way to tie everything together,” Bill said.

As their daughter grew up, Bill and Jennifer consistently reminded Candace where her name came from and shared stories about their stay at Cook Children’s. Candace studied nursing, got married, and became Candace Lapointe. In a full-circle moment, after graduating from nursing school, Lapointe began her career at Cook Children’s. Lapointe was hopeful she would be able to connect with Alphin and share the news.

Once accepting the job, Lapointe learned Alphin still worked at Cook Children’s and was excited to share the news with her in person.

Twenty-three years later, Alphin describes the reunion as a moment that felt 'just right.’ Alphin says the moment was amazing, and she was speechless.

“I came around the corner, and I didn't have any expectations of what she would look like. As soon as I saw her, I just recognized her. She looks so much like her parents and what I imagined Kaitlyn would look like,” Alphin explained.

Lapointe says although she never had a chance to meet her sister, Kaitlyn’s memory and Alphin’s support for Kaitlyn and her family during a difficult time is what pushed her to go to nursing school. As for coming to work at Cook Children’s, she said there was never a second thought about where she’d want to begin her career.

“I’ve always wanted to work for Cook Children’s. My parents remind me how much all the nurses and doctors supported them, and I want to do the same for other families,” Lapointe shared.

Alphin believes Lapointe will touch lives through her career. Lapointe is currently a licensed vocational nurse (LVN) and hopes to become a registered nurse and work in the NICU that took exceptional care of her family.

“I feel like I'm the one that's been 100% blessed by being a part of their lives, not the other way around, which is the way I'm certain that they'll try to tell it,” Alphin said. “It was amazing to walk up to a woman and know she has her name because of something I did.”

Everyone is optimistic that post COVID-19, they can meet in person to reminisce on the last 25 years and hope this story continues for many years to come.

“I want them to realize how special they are and although they may think I transformed their life, they changed my whole career,” Alphin explained. “I would have never been able to share the things that I've shared with other families, nor would I have been able to be as strong as I am."

“We love Candace Alphin very much. She has made an amazing impact and she will forever be with our family,” Jennifer said.

Disclaimer:

This story occurred before Cook Children’s enacted its boundaries policy. The policy prohibits staff from having ongoing relationships with families and patients past direct care.

Stitch-a-Wish, the volunteer sewing, knitting and crocheting group for Cook Children's, generously provided the most fragile babies with original designs, such as a pumpkin, candy corn and Mr. Incredible. 

This verification means Cook Children’s has the best possible system in place for surgery in children. From our Level IV Neonatal Intensive Care Unit, Level II Trauma Center, state of the art equipment and surgery rooms to advanced training in pediatric subspecialties, Cook Children’s has invested everything it takes to make its medical center in downtown Fort Worth, Texas the preeminent place for pediatric surgery.

“This recognition means families can be assured their children are in the best possible hands when they turn to Cook Children’s for surgical care,” said Eric Hubli, M.D., FACS, medical director of Children’s Surgery at Cook Children’s. “We are proud of the incredible surgical staff who work tirelessly to make Cook Children’s the best possible place to heal, and of our leadership team who continuously invests in us because they know every child’s life is sacred.”

To put this recognition in perspective, there are more than 200 children’s hospitals in the United States. Cook Children’s is one of an elite group of 22 that holds the distinction of being a Level I Children’s Surgery Center.

“Kids are not small adults,” said Dr. Hubli. “They have unique diseases and medical issues that can only be treated by specially-trained professionals.”

Cook Children’s has certified physicians and nurses in pediatric surgery and anesthesia available 24 hours a day, seven days a week. In addition, Cook Children’s Teddy Bear Transport team is dedicated to getting the most medically fragile children and neonates, often in need of surgery, to our award-winning medical center quickly and safely. All of this is part of the essential criteria that was observed and evaluated by the American College of Surgeons, leading to the verification as a Level I Children’s Surgery Center.

To read Cook Children's press release on the Level I Children’s Surgery Center verification, click here. 

Amy was born with hypoplastic right ventricle, severe tricuspid valve stenosis and transposition of the great arteries and had a shunt (Blalock-Taussig (BT) placed at a little over a year old. At the age of 3, her family took her to Birmingham, Ala. for the Fontan procedure. The Fontan is the last of a series of three surgeries to rebuild the heart and redirect the way the blood flows.

The fact that Amy had to travel for the Fontan shows how far the Cook Children’s Heart Center program has grown over the past three decades. This was before Vincent Tam, M.D., took over as medical director of Cardiothoracic Surgery. Today, he diagnoses and treats patients with some of the most difficult heart and cardiovascular defects.

Over the past 30 years, James "Hud: Allender, M.D., Susan Hess, M.D. and now Scott Pilgrim, M.D., all served as Amy’s cardiologist.

“I finally graduated to Dr. Pilgrim when he began working at Cook Children’s since he specializes in adult congenital heart disease,” Amy said. “I had the conversation with him about a safe way I could become a mother. He suggested IVF (in vitro fertilization) with a surrogate would be a safe option. Since I have lived a very healthy and normal life as a cardiac kid, I thought this would be a safe option to keep my good health intact. I didn’t want to put myself or my child in danger.”

Dr. Pilgrim believes one of the more rewarding aspects of his job as the medical director of the Adult Congenital Heart Disease Program at Cook Children’s Medical Center is making sure that adult survivors of congenital heart disease have an opportunity to realize their desire to start and raise a family.

“While pregnancy in this population is certainly not without challenges, a safe and healthy pregnancy and delivery is entirely possible for most women with congenital heart disease with appropriate oversight,” Dr. Pilgrim said. “Pre-pregnancy risk assessment and management of high risk pregnancies due to maternal congenital heart disease has become an increasingly important aspect of our program. Understanding that individuals with congenital heart disease have an increased risk of having children with congenital heart disease underscores the importance of fetal screening for these high risk mothers”.

Amy’s sister-in-law, Amanda, agreed to become the surrogate. Early in her pregnancy, doctors found that Rusty and Amy Suson’s baby girl would also face a heart defect. A fetal echocardiogram performed at Cook Children’s found something wrong with the baby’s pulmonary artery. Dr. Tam met with the family and moved forward to a 39-week induction.

As soon as Madilyn was born, she went straight to the NICU at Cook Children’s.

Amy was relieved to find that Dr. Pilgrim was on call that day to care for her daughter. Dr. Pilgrim checked on Madilyn, then ordered and read her first echocardiogram. He then made the diagnosis of pulmonary atresia with a ventricular septal defect (hole in the wall of the heart). “It was on that day that I asked him if he would be willing to take Madilyn on as a patient too and he agreed,” Amy said.

Madilyn had her first open heart surgery at 3 days old and will have another one likely in April.

“Eventually, Madilyn and I will have mother-daughter joint cardiac checkups,” Amy said. “As a patient of Cook Children’s and part of their cardiac family, I knew Madilyn would be in good hands. The team in the Cardiac ICU and step down did an amazing job. I know that Madilyn is getting the best possible care.”

In an interview with Oprah Winfrey, the couple revealed they had nine miscarriages before choosing surrogacy.

After the long-awaited arrival of their newborn, the couple shared photos of them holding their baby on social media. The photos were taken in the hospital room and showed Union in a hospital gown and mom and dad holding their baby skin-to-skin.

Once the photos were published, the couple began to receive backlash on social media.

“For me, the most hurtful thing was once we had our baby and everyone started talking about, ‘Why is she in the bed holding the baby? Why she got a gown on? Why she acting like she just had a baby?’” Wade said in the interview.

“Once again people are uneducated on the process and we decided to go skin-to-skin as soon as our baby came out.”

The Neonatal Intensive Care Unit staff at Cook Children’s strongly encourages skin-to-skin care, also known as kangaroo care, because of the strong benefits for parents and their baby.

Benefits for the baby:

• Keep baby’s body warm-more stable temperature.
• Keep baby’s heart and breathing regular.
• Better weight gain for baby.
• Baby spends more time in deep sleep which supports brain development.
• Baby spends more time being quiet when awake and less time crying.
• Baby has a better chance of being able to breastfeed.

Benefits for the parents:

• Mom makes more breast milk.
• Reduces parents stress.
• Feel closer to baby and learn their likes and dislikes.
• Builds parents confidence as baby’s mother or father becoming more in-tune to baby’s needs; bonding.

“As a therapist in the NICU, the most rewarding part of my work is re-uniting babies and parents through kangaroo care,” said Betsy O’Hara, an occupational therapist in Cook Children’s NICU. “It is so important that these babies and parents begin to form a strong bond that will support their relationships for a lifetime. A transformation happens as the baby responds to his/her parent and the parent finally ‘feels’ like the baby’s mom or dad. It’s magical!”

In the NICU environment at Cook Children’s, therapists emphasize that kangaroo care or “encircled holding” (wrapping your arms around your sick or premature baby even if he/she cannot be held) helps parents feel like a parent to their baby by offering this special care that only parents can provide.

Studies show kangaroo care helps babies who were born prematurely not only to support development while in the NICU, but also cognitive development especially related to behavior and self-control across the first 10 years of life.

Kangaroo Care has also been found to foster stronger maternal attachment in the post-partum period. Receiving Kangaroo care as a premature infant supports better sleep patterns and stress responses in the growing and developing child

Before kangaroo care, the conventional neonatal care model had the infant removed from the mother and let the nurses assume all care of the baby. Kangaroo care represents a shift in neonatal care to a family-centered care model that incorporates both parents into the care of their infant.

“Unlike breastfeeding, which is also so important to the care of the baby, kangaroo care allows for both mothers and fathers to be involved, “O’Hara said. “This care provided by the parents has lifelong benefits for both the baby and the parents. Mom or dad’s chest is the best place for the baby to grow while in the NICU setting and can continue once the family goes home.”

Brayden was born premature at 27 weeks, weighed less than 3 pounds and couldn’t breathe on his own. Right after birth, he was immediately taken to Cook Children’s Neonatal Intensive Care Unit (NICU).

It took eight days before Whitney could hold Brayden for the first time and another five days before his dad, David, held him.

Once Whitney was finally able to hold Brayden, the NICU staff recommended kangaroo, or skin-to-skin, care. Kangaroo care means holding your baby, who is wearing only a diaper, against your bare chest. The baby snuggles on your chest covered with a blanket, just like a kangaroo’s pouch.

“We were told the best thing we, as parents, could do was kangaroo care,” Whitney said. “Holding Brayden skin-to-skin proved to be beneficial. Even on his worst days if he was skin-to-skin with one of us he was calmer, his heart rate maintained better and he required less oxygen. Holding Brayden was the only bonding time we felt like we had. It's hard to bond through glass. It was beneficial for us too. It reduced our anxiety and helped us acclimate to taking care of Brayden.”

Brayden was at Cook Children’s for 160 days and only during 18 of those days was he off the ventilator. Brayden returned home with a tracheostomy and on a home ventilator. Even with these complications, Whitney said she was prepared to care for her son on her own, without the NICU staff, because of her experience with kangaroo care.

“We were so comfortable holding him because we had spent eight hours a day ‘kangerooing’ in the NICU,” she said.

The NICU staff at Cook Children’s encourages skin-to-skin care because of the strong benefits for mothers, fathers and babies, whether the baby was born without complication at term, those born prematurely or who are ill at or after birth.

Benefits for the baby:

• Keep baby’s body warm-more stable temperature.
• Keep baby’s heart and breathing regular.
• Better weight gain for baby.
• Baby spends more time in deep sleep which supports brain development.
• Baby spends more time being quiet when awake and less time crying.
• Baby has a better chance of being able to breastfeed.

Benefits for the parents:

• Mom makes more breast milk.
• Reduces parents stress.
• Feel closer to baby and learn their likes and dislikes.
• Builds parents confidence as baby’s mother or father becoming more in-tune to baby’s needs; bonding.

“As a therapist in the NICU, the most rewarding part of my work is re-uniting babies and parents through kangaroo care,” said Betsy O’Hara, an occupational therapist in Cook Children’s NICU. “It is so important that these babies and parents begin to form a strong bond that will support their relationships for a lifetime. A transformation happens as the baby responds to his/her parent and the parent finally ‘feels’ like the baby’s mom or dad. It’s magical!”

In the NICU environment at Cook Children’s, therapists emphasize that kangaroo care or “encircled holding” (wrapping your arms around your sick or premature baby even if he/she cannot be held) helps parents feel like a parent to their baby by offering this special care that only parents can provide.

Studies show kangaroo care helps babies who were born prematurely not only to support development while in the NICU, but also cognitive development especially related to behavior and self-control across the first 10 years of life.

Kangaroo Care has also been found to foster stronger maternal attachment in the post-partum period. Receiving Kangaroo care as a premature infant supports better sleep patterns and stress responses in the growing and developing child

Before kangaroo care, the conventional neonatal care model had the infant removed from the mother and let the nurses assume all care of the baby. Kangaroo care represents a shift in neonatal care to a family-centered care model that incorporates both parents into the care of their infant.

“Unlike breastfeeding, which is also so important to the care of the baby, kangaroo care allows for both mothers and fathers to be involved, “O’Hara said. “This care provided by the parents has lifelong benefits for both the baby and the parents. Mom or dad’s chest is the best place for the baby to grow while in the NICU setting and can continue once the family goes home.”

But spend some time in one of those rooms and you will see a big part of the child life specialist’s job is to help patients through tests and procedures, as well as coping with any life changes they may face. Even though NICU patients are tiny, child life specialists still play a vital role in not only providing support and stimulation for the child, but for the whole family.

“A lot of our parents need support during this time,” said Lauren Bridge, one of two child life specialists in the NICU. “In a way, it's a loss for them because they didn't have the pregnancy they expected. If they delivered early, they may have never had some of the experiences they anticipated.”

With the young patients, Bridge says she tries to focus on infant development and milestones. She and the other child life specialist, Lisa Pool, are always looking for ways to foster development, which could mean putting a mobile over the infant’s bed, making sure the lights are turned down or even just talking to them.

The other huge role they play is working with siblings. Often, parents aren’t sure whether or not they should bring their other children into the NICU. Bridge encourages NICU parents to include siblings in the baby’s care, though she says regressive behavior is common, especially among preschool age kids. This can mean wetting the bed even though they are potty trained, becoming clingier or refusing to sleep in their own bed. Child life specialists are there to help families navigate this stressful time and help siblings understand what is happening to their little brother or sister.

Ultimately, Bridge says she hopes she can help make NICU families’ time at Cook Children’s a little better.

“The best part of my job is seeing families become increasingly comfortable in the NICU and being an integrated part of their child’s care.”

On Feb. 2, 2016, Ashleigh and her husband David cried tears too, but this time it was waiting for their little boy to get through heart surgery.

It's amazing how far they all have come. 

When she was 20 weeks pregnant, Ashleigh Wilford went with David, her husband, for what was supposed to be a routine sonogram.

But during the visit, things didn’t go as planned or even hoped. The sonogram detected a possible heart condition. The concerned couple called Lisa Roten, M.D., a pediatric cardiologist at Cook Children’s Heart Center, to schedule a fetal echo cardiogram. Dr. Roten and her Fetal Echo Program team confirmed the initial diagnosis of a transposition of the great arteries.

Transposition of the great arteries is a rare heart defect in which the baby’s two main arteries leaving the heart are transposed. Because of this, he wouldn’t be able to properly oxygenate his own blood.

Since she found out about her baby’s diagnosis early in her pregnancy, Ashleigh was closely monitored and cared for by the Heart Center staff at Cook Children’s before her son was born.

Now, a plan could be put in place to prepare for the birth of their little boy – Graham.

“Throughout the pregnancy, they were preparing for him, which was a big burden off of us,” Ashleigh said.

Before the birth, however, both admit that there was no way to be ready for what was to come.

“I don’t think we really knew what to expect. We just thought ‘he’s going to be born, they’re going to fix it, and he’s going to be fine,’” David said.

After carrying Graham full term, the day finally came for Ashleigh to give birth to a 7 pounds, 9 ounce boy.

“I’ve wanted to be a dad for a long time. When I saw him for the first time, you’re just taken away by that moment because you see that new life,” David said.

However, their first few moments with Graham were fleeting. Within minutes, he was whisked off to the Neo-natal Intensive Care Unit at Cook Children’s.

“We had about five minutes with him. Talk about having a moment as a dad. David went straight from the delivery room to Cook Children’s and had to be strong for Graham and for all of us,” Ashleigh said.

In the first few days of Graham’s life, things seemed to be going fairly well. “Everyone kept saying ‘he looks better than expected after everything he'd gone through,’” David said. At 6 days old, Graham was ready for surgery with Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s.

However, on the morning of his surgery, something unexpected happened. But this time it was a welcome surprise. Dr. Tam and his team told David and Ashleigh that they had a very important role that day, a role that ended up being an emotional, beautiful moment during such a scary time.

“One thing that we didn’t know we had the opportunity to do, but that the staff here was very adamant about, was us holding him before surgery,” Ashleigh said. “Until that point, holding him was too dangerous, due to the amount of lines that were helping keep Graham stable. They made sure that we had a good hour each. That was invaluable.”

Although Graham will not remember that moment like his parents will, he responded in a way that amazed everyone.

“Because of the medicine, you could tell he just wasn’t feeling very good. He was clenching himself in pain,” David said. “But when we would hold him, his numbers would level out. You could tell that he felt us.”

But then Graham was taken away from them, and the fear settled in.

“They gave us hourly updates,” David said. “Then they called at one point and said ‘everything is still fine, but we did another echo and saw something we want to go back in and fix.’ So they had to put him back on bypass.”

The entire surgery lasted about nine hours. But as hard as that day was for them, Ashleigh and David agreed that it was even more difficult to see Graham after the surgery.

“When we went back in after surgery, there was a piece of mesh over his chest, but we could see his heart pumping,” Ashleigh said.

“He was pale and cold… it was like he wasn’t alive,” David said. “Seeing a little 6 day old baby look like that… it was tough.”

However, the staff surrounding David and Ashleigh constantly made them feel reassured and comforted.

“It was the worst day of our lives,” Ashleigh said. “But even while experiencing the worst day of your life, it was comforting to see the CVICU nursing staff and the physicians so under control. They’re not panicked. They’re just working. So seeing them take care of him took away those initial gut feelings of ‘this is bad.’ Seeing how confident they were in treating him was a huge relief.”

Ashleigh is an employee at Cook Children’s. As a physician liaison, she spends her days informing doctors and health care providers throughout Texas about the specialties, treatment programs and physicians at Cook Children’s. Even before Graham's birth, she had promoted the fetal echo program at Cook Children's.

But now she speaks from first-hand knowledge the kind of care a patient can receive where she works.

“I can talk about the program and I’m able to explain it to people in a completely different way now,” Ashleigh said. “It has made me a better employee. I approach my job with a compassion that I don’t think I could have had until I was a patient family member.”

Graham made such rapid progress, however, that Ashleigh and David were not patients for long. Graham was at Cook Children’s just under three weeks before he was able to go home.

Two years after his surgery, Graham sees Scott Pilgrim, M.D., at Alliance Urgent Care and Pediatric Specialties every 6 months, which is near the Wilford’s home.

Graham is doing fantastic. We were recently told we could space our appointments out to every six months! And because of all the education we’ve received, David and I know what to look for and whether or not to call if we are concerned before then."

While their boy is still so young, Graham has already made his parents incredibly proud. His strength pushes them every day, amazing even them.

“I was told there is something about these kids that spend time in the NICU, they’re just fighters,” Ashleigh said. “It’s true. You can’t really explain it, but we can already see it.”

Written by Elizabeth Sparks

But in the days after her birth, enthusiasm turned into fear as baby Ella began to show signs that something wasn’t right.

“She would get jittery. She would scream and she was constantly hungry,” said Carol.

Doctors at the Tucson hospital where Ella was born quickly realized that the little girl with a full head of hair had dangerously low blood sugar, also known as hypoglycemia. Ella couldn’t go home and that big Christmas celebration, along with everything else in her life, now seemed in doubt.

Ella’s caregivers tried several different treatments and when nothing worked, they began to suspect Ella had a rare disease called hyperinsulinism (HI). Hyperinsulinism occurs in about 1 in 50,000 babies. If uncontrolled, it can cause seizures and permanent brain damage.

“The doctors in Tucson did a great job diagnosing Ella’s hyperinsulinism, which was quite severe. They called us knowing about our work with the 18F DOPA PET scan and transferred her here,” said Paul Thornton, M.D., medical director of Cook Children’s Hyperinsulinism Center, one of the top such centers in the world.

Cook Children’s is one of only two institutions in the country to offer an HI program. It’s also one of the only places using the new investigational drug 18F DOPA. When combined with a PET-CT scan, the drug gives doctors a way to treat and even cure patients with few to no side effects.

The Vallecalle family received the call in late November that it was time for Ella to go to Texas. They would be traveling with Cook Children’s Teddy Bear Transport team.

“I was so nervous about leaving my son and also about what we were going to find out about Ella’s condition,” said Carol. “Then all of the sudden, I see these people in blue jumpsuits. There’s this beautiful Texan woman with her big, thick accent and she’s like ‘How y’all doing?’ and I just knew we were going to be fine.”

Carol rode with Ella on the plane to Texas and when they arrived at Cook Children’s, Dr. Thornton and his team got right to work. Using the 18F DOPA drug and the PET-CT scan, they were able to pinpoint the exact location in the pancreas that was causing Ella’s low blood sugar. They were also fairly certain that she had a form of HI known as focal disease, meaning there’s was a chance she could be cured.

“About half of the babies born with HI who are resistant to medical therapy have focal disease which we can treat and cure. The other half has diffuse disease which means they will have persistent hypoglycemia throughout their lifetime,” said Dr. Thornton.

One week after she arrived at Cook Children's, John Uffman, M.D. performed surgery on Ella. Using results from the PET-CT scan, he removed a small portion of the pancreas where a lesion was triggering her HI. She recovered quickly and days later underwent a 16-hour fast. Without any food for that extended period of time, Ella was able to maintain a healthy blood sugar level and her body was able to make ketones, molecules that should be produced during periods of low food intake.

Ella was officially cured.

“I never saw this day coming,” said Carol. “She’s going to have a normal life. She’s going to be able to travel and fall in love and do all of things that she wants to do. It’s a blessing.”

Dr. Thornton is also thrilled about the good news.

“It’s a really big deal for a baby like Ella to be cured because this disease is very serious. The new 18F DOPA drug and PET scan have really made a difference in how we are able to treat these HI patients. In the past, we might have cured a patient but we would have had to remove much more of the pancreas causing almost certain diabetes after surgery.”

Not only are doctors able to offer a cure without the threat of diabetes, they’re also able to send children home much faster than before. Within two weeks, Ella was able to leave Cook Children’s HI free. Before 18F DOPA and the PET scan, Dr. Thornton says most children would be in the hospital for 40 to 50 days.

“I’m just so excited to be home for Christmas,” says Carol. “When we left Arizona, we were fully expecting to be in Texas for a month or more. My son was worried that Santa wouldn’t find us.”

Santa will know exactly where to find the Vallecalle family. For the first time in her life, Ella went home Dec. 15. They will spend Christmas with their family.

More about Cook Children's Hyperinsulinism Center

One of only two such programs in the nation Cook Children's Hyperinsulinism Center uses a specialized team approach to treat this rare disease. Hyperinsulinism affects many areas of the body, so to truly treat the disease, each child is seen by top physicians, nurses, researchers and specialists in the field. These medical professionals have spent additional years of intense study and have dedicated their practice to focusing on hyperinsulinism so that your child has access to the medical care that treats all the symptoms. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.

Critically Ill Babies Arrive at Cook Children's in Wake of Hurricane Harvey

We were on hand as our Teddy Bear Transport Team brought critically ill babies from Driscoll Children's Hospital in Corpus Christi, Texas, to our Cook Children's Neonatal Intensive Care Unit. Click here to see our Transport team in action. 

A Call To Faith: Surviving Hurricane Harvey

Lily Faith was born at 23 weeks, 5 days and weighed 1 pound, 5 ounces. With Hurricane Harvey on its way, Lily was one of the fragile babies transferred to Cook Children's. We talked to Lily Faith's mom and learned this family's amazing story. Click to read. 

'I Don't Think I've Ever Been Tested More as a Nurse'

While our Teddy Bear Transport Team took babies away from the hurricane and to safety, we found stories of brave Cook Children's employees who were making their way into the storm to help. Candace Wilson saw plenty of tough situations as a Pediatric Intensive Care Unit nurse, but nothing compared to the havoc she witnessed while trying to evacuate a nursing home from the rising flood waters of Hurricane Harvey. Click to read Candace's story.

The Rescuers: Cook Children's Nurse, Dispatcher Help Hurricane Victims

We will never forget meeting Collin Main and Trent Palmer. We learned about the two Cook Children's employees after seeing a picture of Collin on a helicopter, taken by CBS National News. With their medical training and their boat, they knew they had the skills to help. Read their remarkable story of rescue by clicking here.

Along with our coverage on Checkupnewsroom.com, media from across the country covered our stories. Click the links below to revisit them:

•  Huge hurricane rips into Lone Star State: Hospitals evacuate most at-risk (Boston Herald)
• A Nurse on Rescuing Critically Ill Babies From Hurricane Harvey (New York Magazine)
• 'It's a Miracle': Some of Harvey's First Evacuees Were Newborns, Flown To Fort Worth (KERA)

Santa Claus made time in his busy schedule to say hello and perhaps listen to some whispered wishes.

See the full story here. 

"I would hear that song 'I'll be home for Christmas' in my head, and I'm like, 'I'm not going to be home,'" said mother, Carol Vallecalle.

It was a tough notion for Vallecalle to accept, but not as tough, she says, as what her 6-week-old daughter Ella has been through.

See the full story here.

Never in a million years did she dream that he would not be able to leave the hospital with her after he was born.

As an adult oncologist in Abilene, Dr. Amechi is accustomed to the ups and downs that go along with medicine. But she wasn’t prepared at her twentieth week of pregnancy when she learned that the amniotic fluid that was supposed to be surrounding her unborn son was missing.

“You never really expect to be in that situation,” said Dr. Amechi. “I just thought I was pregnant, I arranged my maternity leave and I was ready to have my baby.”

When Dr. Amechi’s son, Samuel, was born, he immediately began suffering from respiratory issues and needed to be intubated. On top of that, his kidneys were not able to fully develop due to the lack of amniotic fluid, leaving him in need of dialysis. He was admitted to the Neonatal Intensive Care Unit (NICU) at the hospital where Dr. Amechi gave birth. For two months, Dr. Amechi spent day after day by Samuel’s side. The hospital was three hours away from their home in West Texas, and with a steady round of complications, the Amechi family had little hope of Samuel being discharged anytime soon.

“When I realized we weren’t going to get out of the NICU before September, I started bawling,” said Dr. Amechi. “That’s when my nurse said that’s it, let’s look for other options.”

After talking with the medical staff at the hospital, Dr. Amechi and her family decided to transfer Samuel to the NICU at Cook Children’s Medical Center. While it wasn’t home, it was a little closer to home. The Amechi family now only had to drive two hours to Fort Worth instead of the three hours they’d grown accustom to. And for the first time, they could spend the night next to Samuel. Unlike many other NICUs in the U.S., Cook Children’s NICU has private rooms with couches that pull out into a bed. This means families don’t have to leave their child’s side if they don’t want to.

“Cook Children’s has a way of arranging things to make life a little easier for families, even small things like parking. It was nice to be able park and not worry about finding a spot or having to pay for the garage,” said Dr. Amechi.

She says there was also a common goal among the NICU staff at Cook Children’s to get her son home, something she didn’t necessarily feel was the case before the transfer.

“We have a diverse and caring group of specialized people who are taking care of these very sick infants,” said Jonathan Nedrelow, M.D., medical director of the NICU at Cook Children’s. “From our nursing staff, to pharmacy, respiratory therapists, physicians and advanced practice nurses, we are all focused on doing what is best for the patient and their family.”

After three months at Cook Children’s, Samuel was finally deemed healthy enough to go home for the very first time. He was discharged in early September and is enjoying life with his two big sisters.

“Being able to leave the hospital with my son was a blessing,” said Dr. Amechi. “I remember when I was first told that I couldn’t take him home and I felt like the floor was going to fall from under me. So even though I was scared, I couldn’t wait to take him home.”

Stories like Dr. Amechi’s are not uncommon. In fact, Cook Children’s sees more than 1,000 babies admitted to the NICU each year. But often, when parents learn their newborn is in need of specialized care, they don’t realize they have a choice as to where that care is facilitated.

“Parents should know that they have a say when it comes to the care of their child,” said Dr. Nedrelow. “They should also know that there are different levels of care available.”

The NICU at Cook Children’s has been designated as a Level IV NICU by the state of Texas, meaning it provides the highest standard of neonatal care. Dr. Nedrelow says parents interested in transferring to Cook Children’s should contact their insurance company first. Because every company is different, having written approval from your insurance company before the transfer is the best way to ensure the care will be covered by your policy.

“If you’re considering transferring your baby to another hospital, be sure to talk to your physician,” said Dr. Nedrelow. “Ultimately, it’s your decision on where your newborn is treated, but your physician makes the referral and remains part of the treatment process so it’s important to discuss the process with him or her.”

About Cook Children's Neonatal Intensive Care Unit

If you would like to schedule an appointment for a NICU tour, refer a patient or speak to our staff, please call our offices at 855-687-6428. You can also find more information on our website. 

A phone call at 11:30 a.m. Thursday from Driscoll’s hospital chief to the head of Cook Children’s Hospital in Fort Worth kicked off a frantic, 17-hour race to get the smallest and sickest patients to safety before the massive, Category 4 hurricane slammed into the Lone Star State, Cook Children’s Transport Director Debbie Boudreaux told the Herald yesterday.

Read the full story here.

Debbie Boudreaux, director of the transportation team and a neonatal nurse at Cook Children’s, sprang into action, scrambling to get planes to transport the infants 400 miles north to Fort Worth. (With one exception, their parents would have to drive separately.)

Read the entire story here. 

KERA

Read how Cook Children's Teddy Bear Transport Team answered the call for help and moved the babies out of harm's way.

They feared the worst when they saw Driscoll Children’s Hospital in Corpus Christi, Texas, calling on Thursday, Aug. 24. Miguel and Leanna were halfway between the one-hour drive from their home in Alice, Texas, to Driscoll Children’s to check on their daughter, Lily Faith, when they heard the call.

Leanna was told the medical team at Driscoll felt it best to transport their daughter to Cook Children’s Medical Center in Fort Worth, to get Lily Faith away from the wake of Hurricane Harvey.

Lily Faith was born at 23 weeks, 5 days on March 12, 2017. She weighed 1 pound, 5 ounces at birth. Because of her fragile condition and multiple health issues, she could not afford any loss of electricity at the hospital.

“When they said they were evacuating certain babies, I immediately started crying,” Vidal said. “She’s our baby girl and it’s difficult already being a NICU parent, walking out of the NICU every single day without your child in fear they’ll call you at any time to tell you something happened with her getting sick or not doing well. And now they were about to send her nearly eight hours away. It felt like someone taking the other half of your heart from you.”

Because of the staff and equipment required to take care of the babies transported back to Fort Worth, most parents weren’t allowed to travel with their children. Even if there was a chance to fly with her daughter, Vidal arrived at Driscoll without any money or belongings.

“So we stayed behind,” Vidal said. “I looked at my baby girl and all I could see was love and that fighting spirit in her. I just told myself, ‘She’s a little warrior princess already and now she’s an adventurer. She’s going to be OK.’ We kissed her forehead and I placed my daughter’s life in the hands of these miracle workers. My little star lit up the sky that night and arrived safely thanks to these amazing hospitals and their teams. We are beyond thankful our baby was taken to Cook Children’s. It’s such an amazing hospital with a team of such kind and beautiful people.”

Lily Faith was born nearly four months premature. Leanna’s water broke on Valentine’s Day at 20 weeks most likely due to infection. Leanna held on for nearly three weeks with a broken water bag, not knowing when or what day her daughter would be born.

“Every day I was losing amniotic fluid and every day doctors would tell me there was no hope, that my baby would die,” Vidal said.

When Lily Faith was born, parents heard their daughter cry. But that first sign of hope, soon gave way to the reality of what Lily would face in the upcoming months.

Lily has gone through so much since her birth:

• Surgery to close an extra passageway in the heart at just 1 week old
• Numerous blood transfusions
• A meningitis scare that required a spinal tap
• Eye disease caused by abnormal vessel growth
• Serratia infections
• Chronic lung disease
• Pulmonary hypertension

On July 13 (Leanna’s birthday), Lily became sick with a urinary tract infection and a lung infection that caused her lungs to collapse. She struggled to breathe on her own and required help multiple times. She pulled through and just recently received a tracheotomy to help her breathe and a tube to be placed in her stomach for feeding.

Lily Faith has proven tough as nails time and time again. Her parents credit the medical team at Driscoll for their daughter’s life. Parents were on their way to Driscoll to hear what was next for their daughter when the hurricane warnings began.

“We never gave up because our hearts told us otherwise ... and I'm so glad we didn't because now we have a little girl with the most beautiful eyes. She's just beautiful and perfect in every way,” Vidal said.

Since arriving at Cook Children’s, the parents no longer look at their phone as something to fear, but as the lifeline of their baby. Vidal calls to check on Lily and get updates over the phone on her daughter’s progress.

"Everyone at Cook Children's has been so great," Vidal said. "We have family in Fort Worth and they are sending us updates from the NICU and pictures of Lily. I've never seen her smile as much as she has since she's been at Cook Children's."

Vidal said the weather “did get ugly” around the surrounding areas. Signs were knocked down, buildings and gas stations destroyed, leaving devasation behind. But now, Vidal has a new sense of hope.

“It’s something you never expect to happen, but you just never know what storms life will throw your way next. This entire journey changes your perspective,” Vidal said.

Vidal let many things go for her daughter. Before her water broke, she had just been hired and chosen as a graduate teaching assistant at Texas A&M University Kingsville, accepted into the MA program and a teaching program as well.

And even with everything that’s happened, Vidal says she wouldn’t change a thing.

“I just wanted our daughter safe and to live. It was all that mattered. In the blink of an eye your life could change ... I found myself losing everything I had and now her life was hanging by a thread the moment my water broke. I did everything I could to try to keep her in as long as God allowed me to and by a miracle I now have my daughter alive,” Vidal said. “I hope her story can inspire other families who have babies in the NICU and are going through a tough ordeal. Lily is proof that miracles exist.”

All 10 babies arrived from the NICU at Driscoll Children’s Hospital in Corpus Christi, Texas, through a transportation effort that involved four planes from three different hospitals – Cook Children’s Teddy Bear Transport, Driscoll Children’s and two aircraft from Children’s Health in Dallas.

The babies were transported back-and-forth throughout the night. It took about 18 hours from the time of the initial phone call from Driscoll to when the last babies arrived at Cook Children’s at 6:30 a.m. Friday.

Once the parents arrive they will be in a private room with their baby. Level IV is the highest ranking a NICU can receive, meeting stringent requirements, especially in the areas of advanced medicine and quality of care.

“We are so honored and privileged that Driscoll Children’s trusted us to care for their precious patients. This was an act of remarkable teamwork between Cook Children’s, Children’s Health and Driscoll Children’s Hospital, all in an effort to care for these vulnerable patients and get them out of harm’s way of the hurricane,” said Nancy Cychol, Chief of Hospital Services at Cook Children’s. “These are critically ill babies. The Transport teams continued the excellent care they were receiving in Corpus Christi and now are settled in our Neonatal Intensive Care Unit.”

Because of the complex nature of the patients and the equipment and staff needed in the planes, parents could not travel with their babies and had to arrange their own transportation.

“Because of the extraordinary nature of the hurricane and the transport teams working together, these babies arrived in a dramatic way to our NICU,” said Sheralyn Hartline, RN, director of the NICU at Cook Children’s. “But now that they are here, our NICU staff is very much in their comfort zone of taking care of these babies. This is normal for our team. Our physicians, nurses and everyone who works in the NICU are all prepared and trained for occasions exactly like this one. Every day, they are treating the sickest children with the most difficult and complex diagnoses.”

About Cook Children's NICU

Neonatology is an in-hospital subspecialty of pediatrics that focuses solely on the care and treatment of critically ill newborns and babies that are born prematurely. Our neonatologists and Level IV Newborn Intensive Care Unit (NICU) are ranked among the best in the nation for care that combines the most advanced treatments with heartfelt compassion. Click here to learn more.

From the beginning, it was clear that my body didn’t like being pregnant. My husband, Shawn, and I worked on getting pregnant for a little over a year and were finally successful after seeing a fertility specialist. I can honestly say that I didn’t really have one day during my pregnancy where I could just enjoy being pregnant. Whether it was being really nauseous, increased problems with my asthma or dealing with high blood pressure.

This new chapter of our lives began on March 13 when I called the doctor with an exceptionally high blood pressure reading. I’d been battling high blood pressure since week six of my pregnancy but it had been controlled with medication. I remember thinking to myself before I called the doctor that morning that I was probably just overreacting. Two hours later, I was in a helicopter being taken from Harris Southwest to Harris downtown. The whole feeling was completely surreal. I didn’t really feel that bad so why were people acting like I was so sick?

I was told that I was being transported to Harris downtown so we could be closer to Cook Children’s in case I needed to deliver. Deliver?? I was only 26 weeks; there was no way I could deliver yet. I wasn’t ready. She wasn’t ready. But, less than 48 hours later, at 8:33 p.m. on Friday, March 14, Avery Leigh Wooley came into this world via a C-section, weighing 1 pound, 5 ounces. The doctors had diagnosed me with preeclampsia and decided it was just too dangerous for me and her to stay pregnant any longer.

Being in the operating room for the C-section was another surreal experience. Shawn just kept telling me to “stay Avery strong!” That has now become our battle cry. We’ve even printed up bracelets that say “I am Avery strong” for friends and family to wear.

We are on day 14 of being in the NICU. Overall, she has done really well. She is experiencing all the normal things that a premature baby at 26 weeks would but nothing out of the ordinary. You never know what news could be lurking around the corner so we’ve really focused on taking it one day at a time. We celebrate the good news, try not to focus too much on her setbacks and try not to think too far in advance. This is definitely a marathon, not a sprint. They say to plan on her being her until her due date, which was June 20.

The care that we’ve received here in the NICU has been incredible. There is nowhere else, except in my belly, that I would rather Avery be right now. All her nurses and doctors show incredible empathy and do a great job of comforting me on a daily basis. It’s not just a job for these people, it’s a calling. They do it because they love it. They’ve taught me so many new terms and do a great job at explaining things in plain English.

The amount of guilt I have for not being able to carry Avery to term is overwhelming. I feel like I failed at my first act of motherhood. I will spend the rest of my life trying to make it up to her. For right now, I am trying to do that by being here with her as long and often as I can and giving her my breast milk to make her grow big and strong, so she can be Avery strong!

Avery's Journey Continued:

• Avery's Journey - Part 2
• Avery's Journey - Part 3
• Avery's Journey - Part 4
• Avery's Journey - Part 5
• Avery's Journey - Part 6
• Avery's Journey - Part 7
• Avery Goes Home! - Part 8
• Thankful to be Home - Part 9
• Avery turns 1 - Part 10
• Independence Day- Part 11
• An Autism Spectrum Diagnosis - Part 12
• NICU Parents Suffering from Post-Traumatic Stress Disorder - Part 13

His mom, Crystal, will be the first to tell you her little boy is just "a really cool kid."

See the video and full story here.

Click here to read the full story.

No, these parents didn’t go out on the town for an intimate night together. Instead, they walked downstairs to a quiet room, tucked inside Cook Children’s Medical Center.

At the end of the movie, they will return to reality and the continuous beeping of monitors in their child’s hospital room.

“We wanted to do something that would give parents a sense of normalcy,” said Kristi Rico, Family Programs Specialist at Cook Children’s. “We have a lot of families who are here for months. Often, they don’t want to leave their child, so we created ‘Parent Date Night’ as a way to help them relax and reconnect without having to leave the hospital.”

Parent Date Night isn’t just dinner and a movie. Developed in the summer of 2016, it’s an evening meticulously planned by Rico and the Nutrition and Food Services team at Cook Children’s. First, Rico comes up with a theme and then hospital chefs develop a menu around it.

“We’ve made steak and eggs to pair with Breakfast at Tiffany’s and chicken piccata with angel hair for Roman Holiday,” said JoAnn Williams, Executive Chef/Senior Manager of Food and Nutrition Services at Cook Children’s.

Each meal begins with a salad and ends with a dessert, like tiramisu or cheesecake. To the surprise of many, all of the food is made in-house with parents in mind.

“We try to make it really elegant because these parents have missed so many meals and so much time together,” said Williams. “We want it to be something they will remember.”

Some of the first Parent Date Night events were attended by Stephanie and Reggie Campbell. The couple spent four months in the Neonatal Intensive Care Unit (NICU) last year with their newly adopted son, Owens. He was just 4 days old when they arrived after traveling all the way from their home in Lancaster, South Carolina.

“Being in the NICU is really stressful, so knowing that you could get out of the hospital room and escape the beeps and noises for a little bit helped,” said Stephanie. “It also helped to be able to meet other parents going through similar things and know that if you were needed, you were just downstairs.”

“It’s important for parents to be able to meet and talk to one another,” said Rico. “They’re all here because they have a child who is not well. We want them to be able to share their experiences, if they choose.”

For the Campbell family, having the opportunity to connect with other parents has had a long lasting impact. While they are now back home in South Carolina with their happy 10-month-old son, they still keep up with the friends they made at Cook Children’s.

“Some families don’t want to break away from their children, but that’s unfortunate because you really need to,” said Stephanie. “Being in the hospital will wear you down if you don’t step away every now and then.”

In the absence of state-led standards, DSHS was tasked with developing criteria for designating levels of neonatal and maternal care. This includes specifying the minimum requirements for each level, one through four. Any NICU in Texas that receives Medicaid reimbursements must undergo this designation process by September 2018 in order to continue collecting Medicaid funds. Cook Children’s NICU was one of the first NICUs in the state to be reviewed.

“While all NICUs help babies who need extra care, Level IV NICUs care for the most critical and vulnerable infants,” said Jonathan Nedrelow, M.D., neonatologist and medical director of the NICU at Cook Children’s Medical Center. “This designation reinforces the fact that Cook Children’s is among the best care centers in Texas for medically-fragile babies.”

• Comprehensive care for infants born at all gestational ages and birth weights with critical illnesses.
• Surgical repair for complex congenital or acquired conditions.
• A full range of pediatric subspecialties and surgical specialists.
• Access to high-risk infant follow-up care through the NEST program once babies are discharged.
• Ability to transport critically-ill babies via aircraft.
• Outreach education to lower-level facilities.
• Single rooms so parents can comfortably stay with their babies.

“Cook Children’s NICU is the only Level IV NICU in Tarrant County,” said Sheralyn Hartline, director of the NICU at Cook Children’s Medical Center. “This recognition is significant because it means families of critically ill babies don’t have to travel far from home to receive the best care available. The physicians and nurses at Cook Children’s NICU provide exceptional care for the some of the sickest babies in Texas and across the United States.”

Find the requirements for a Neonatal Designation Level IV, according to Texas Administrative Code, here. For more information on House Bill 15, please visit the Texas Health and Human Services website.

Learn More About Cook Children's NICU
No one ever wants to think about their newborn being critically ill. But it's good to be as prepared as possible, so if you do have to make such choices, we'll help you be well-informed. Start by asking your doctor about what type of treatment your baby may need. Then ask which NICU has the best equipment and staff to provide that care. You may want to research and learn about the differences between each one. For example, only Cook Children's NICU offers all single rooms, specially designed so that babies can receive the highest level of care and parents can comfortably stay with their babies as much as they like. Your OB/GYN or pediatrician may also be good sources of NICU information.