Ella Grace Hurlbut, who was born prematurely at 27 weeks and who passed away at just 50 days old, has been the catalyst for bringing joy out of sorrow – most recently at Texas Children’s Hospital The Woodlands. Little Ella was the first neonatal intensive care unit baby that nurse Christina Snell cared for who passed away.
“I had a really hard time with it, and I didn’t know what to do with the pain that was having,” Snell said. “So, I decided I would do something good with it.”
That “something good” has culminated in the opening of a bereavement room called the Garden Room at The Woodland’s NICU. Designed by Snell and funded by her parents, Steve and Tammy Barr, the room is a non-sterile, peaceful environment where families have the chance to spend extra time saying goodbye to their child. The room also can be used by families who are getting used to caring for their MICU baby’s needs before going home.
Similar to the Butterfly Room at Main Campus’s NICU, the Garden Room features a crib, couch, two gliders, a chest full of clothes to dress their little ones in and a Caring Cradle. Donated by the Hurlbut family, the cradle cools a baby’s body after passing, therefore prolonging the amount of time a family can spend with their baby.
“Christina helped us make molds of Ella’s hands and feet, and to this day, those are my most treasured possessions,” Katie Hurlbut said. “I knew it wasn’t a coincidence when we found out she was the one leading the development of the bereavement room in The Woodlands.”
In addition to the Caring Cradle, the Hurlbut family also donated stuffed bears, clothes and linens to the Garden Room. Two artists, Alicia Kowalki “Los Queridos” and Genie Mack, provided beautiful pieces for the room’s walls.
“We are extremely thankful for the time and effort of those who contributed to this special space,” said Susan Romero, assistant clinical director of the NICU in The Woodlands. “It will give many families a great sense of peace.”
February 25, 2019
When Nicole Tenney took her daughter Aubree home from the hospital in August of 2017, the last thing on her mind was how often she would talk to her newborn and how she would make connections with her through speech.
All the new mom could think about was whether she was going to be able to make it through the day without having to call one of the many clinicians she and her daughter had gotten to know during their 136-day stay in the Neonatal Intensive Care Unit at Texas Children’s Hospital’s Medical Center Campus.
“Aubree was born at 24 weeks gestation and overcame several challenges while at Texas Children’s,” Nicole said. “But she still had a long way to go, and I was willing to do anything to help keep her moving forward.”
So, when Aubree’s physicians, nurses and therapists with the SOAR Program, also known as the High-Risk Neonatal Follow Up Clinic, at Texas Children’s Hospital The Woodlands suggested that Nicole also participate in the hospital’s upWORDS Program, she jumped at the opportunity.
Developed in association with the LENA Research Foundation and generously supported by Kohl’s Care, Episcopal Health Foundation, Ed Rachel and the Powell Foundation, upWORDS gives parents the knowledge of how to improve the quantity and quality of language spoken with their child and educates them on the long-term impact language can have on their child’s success in life. The program includes group classes where parents learn to use the LENA System™ to monitor their home language environment and are taught simple techniques to increase interactive talk with their child.
To measure a participant’s home language environment, the LENA System™ uses a small recorder that fits inside a vest worn by the child. The recorder measures the amount of words a family speaks to their child and how much their child responds in return. The recording is then translated into data that the parents can use to see how much they are talking to their child and identify opportunities to increase the level of spoken interaction they have with their baby.
Texas Children’s via its Section of Public Health and Primary Care launched the upWORDS program in June 2016 as a pilot program at Texas Children’s Hospital West Campus in partnership with the Section of Public Health and Primary Care and Speech Therapy department at West Campus. Since then, 502 families have participated in the program, which is now being offered at 10 locations across the Greater Houston Area.
Late last year, Texas Children’s extended the program to NICU parents via two sets of classes at Texas Children’s Hospital The Woodlands. The classes are supported by the SOAR Program and several of the therapy teams in The Woodlands. About dozen family members – including Nicole and Aubree – attended the classes, graduating from the program on February 14.
“The biggest thing I learned was to give Aubree a chance to respond to me however she could,” Nicole said. “This and many of the other tips I learned really helped. Aubree’s development in speech increased by seven months during the time we were in upWORDS.”
Maura Dugan, manager of the Section of Public Health and Child Abuse Pediatrics, said some parents in the NICU classes increased the number of words spoken to their children by 25,000, and that 84 percent of upWORDS participants who graduated from upWORDS classes last year reported they spoke more to their children, and 79 percent reported an increase in the number of conversational turns or instances of back and forth verbal exchanges between them and their children.
Dugan said the NICU classes in particular have been a huge success as the majority of the participants are dealing with a lot of issues and greatly needed the support of experts as well as other parents who are going through similar things.
Led by upWORDS Health Educator Jennifer Howell and Listening and Spoken Language Therapist Allison Haggerty, the NICU classes not only teach parents and caregivers the importance of early talk and turn taking, but how to implement talking tips into their everyday routine like singing, pausing and chatting while out and about with their baby.
“With the help of staff and each other, parents work through some of the challenges they face in everyday life,” Dugan said. “And, each week they get to watch their children interact and achieve various milestones.”
Dr. Candice Allen, medical director of the SOAR Program, has helped get the upWORDS NICU class started and said they are a great addition to the services her team already provides families who are transitioning from the NICU to home.
“The more support we can give these parents and babies the better,” she said. “We want them to go on to lead healthy and productive lives, and language is a big part of that.”
To learn more about or register for the upWORDS program at Texas Children’s, click here.
February 4, 2019
When Blessing Quartey was born, she was only 24 weeks old and weighed just 1.8 pounds.
To help boost her growth, Blessing’s mother, Eva Nehikare, agreed to enter her daughter into an ongoing study at Texas Children’s Pavilion for Women focused on the benefits of an exclusive human milk-based diet in extremely low-birth-weight babies. Five months later, Eva is thankful she did.
“Shortly after she got into the study, you could see her becoming more muscular and full,” Eva said. “When you look at her now, you would never know she is a preemie.”
Today, Blessing weighs 8 pounds. She is steadily gaining weight and growing, and was discharged from the hospital just before the holidays.
Dr. Amy Hair, neonatologist and director of the neonatal nutrition program at Texas Children’s Hospital, is leading the study Blessing is in and said the infant’s outcome isn’t uncommon.
“We’ve known for a while that a human milk-based diet is best for low-birth-weight babies,” Hair said, noting that Texas Children’s was the first pediatric hospital to adopt an exclusive human milk-based diet in the neonatal intensive care unit (NICU) in 2009. “Now, we have a study and outcomes to back us up.”
Hair recently published some of the study’s outcomes in the BMJ, one of the world’s oldest and most highly revered peer-reviewed medical journals.
Specifically, the study looked at the benefits of an exclusive human milk-based diet in 51 premature infants. It compared post-discharge growth, obesity and metabolic outcomes of appropriate for gestational age (AGA) premature infants versus small for gestational age (SGA) premature infants who were fed an exclusive human milk-based diet in the NICU.
The first to look at long-term post-discharge growth of this population, the study found that at 2-years-old SGA premature infants who received an exclusive human milk-based diet showed greater catch-up growth without increased obesity or elevated insulin resistance compared with AGA premature infants. These findings suggest an exclusive human milk-based diet in the NICU could lead to favorable metabolic outcomes in SGA children.
“Historically, we have overfed premature babies with either formula or cow-based fortifier, which has led to a higher risk of heart disease and metabolic problems as young adults,” Hair said. “This study proves that feeding with human milk and human milk fortifier, low-birth-weight babies grow in a healthier manner. The study also challenges the current belief that SGA babies will never catch up to their counterparts. We are seeing that they are.”
Hair said the next paper to come out about the study will focus on participants’ neurodevelopment. She added that she and her partners have seen positive results and that the families involved are extremely pleased and more than willing to participate and come in for follow-up visits.
“I am so thankful for all of the care my daughter and I received at the Pavilion for Women,” Eva said. “The opportunity for us to be a part of this was an honor.”
December 18, 2018
Santa Claus made his way to Texas Children’s Newborn Center last week to spread some holiday cheer – but he wasn’t the only one dressed up in red. Babies in the NICU at Texas Children’s Hospital Pavilion for Women and West Tower were dressed in their own tiny Santa hats and booties.
Vincent Michael Garza, born on December 6, was dressed in a green and white striped holiday-themed onsie when Santa walked in bellowing a spirited Ho, Ho, Ho! The days old infant gave Santa a quick newborn smile and then went peacefully back to sleep.
“I love this,” said Santa Claus, who has a personal connection to Texas Children’s – his own grandson spent over 100 days in the NICU when he was born. “It makes my day.”
Vincent’s mother, Norma Garza, said Santa’s visit meant so much to her, giving her a sense of joy, relief and normalcy during what was a longer stay at the hospital than expected.
“Everyone here has been so great,” she said. “Having Santa come by made it even better.”
Vincent and Norma got an equally as good surprise later that day – clearance from Vincent’s doctor to go home! The infant was discharged on December 12, just in time to spend the holidays at home with his family.
Stephanie Jones, a Texas Children’s employee, delivered her son, Levi, on October 8. He has been in the NICU at the Pavilion for Women ever since and might not be discharged by the end of the month. So, having Santa personally visit the infant was super special.
“Being here in general is hard,” Jones said. “A surprise visit like this helps bring peace of mind and a little bit of normalcy to our day.”
The visit from Santa was hosted by the hospital’s Newborn Center Family Advisory Committee and First Memories Texas, a volunteer group that helps families with babies in the NICU and CVICU at Texas Children’s to make memories and tell their children’s stories through photography.
December 3, 2018
The 19th Annual Reba Michels Hill Memorial Grand Rounds were held recently. Awards were given to Neonatology non-physicians who have made a significant contribution to advancing the quality to which Dr. Hill was dedicated: compassionate commitment to education, patient care, research and family.
Dr. Gautham Suresh, chief of service, Neonatology, presents Reba Michels Hill awards to Myrthala Miranda-Guzman, senior administrative assistant, Neonatology Department; Joseph Hagan, research statistician, Neonatology Department; and Sharon Wojtow, advanced respiratory care practitioner, Respiratory Care Department.
November 19, 2018
The neonatal intensive care unit (NICU) at Texas Children’s Pavilion for Women celebrated babies this past week in recognition of Prematurity Awareness Month. Infants on the unit received superhero capes, created by FirstMemories Texas, an all-volunteer organization dedicated to teaching families whose infants are in the NICU and CVICU at Texas Children’s Hospital how to celebrate, honor and tell their children’s stories through photography and album making.
One family got three capes – one for each of their triplet sons, Barrett, Calvin and Jacob. The brothers were born on November 1 at 34 weeks gestation and have been in the NICU ever since. All three babies are healthy but need some extra attention and care before going home.
Dara Miller, the boys’ mother, said the care she and her boys have received at the Pavilion for Women has been incredible and that everyone they have encountered has been professional, compassionate and kind.
“We have had complete confidence in everyone who has taken care of us,” Miller said. “Everyone has always kept us informed and made us feel like we are in the best possible hands.”
The day her boys received their black and yellow batman capes was icing on the cake and ended up sparking a milestone moment. Until that day, she had never held her boys together, only separately. Joined by her husband, Mason, and 2-year-old daughter, June, Miller held her babies donned in capes big enough to cover almost their entire body and grinned widely.
“In that moment, we all came together as a family,” she said. “Until then, something felt incomplete.”
Kellie Kainer, assistant clinical director of nursing for the NICU, said comments like Miller’s and special events like the one with the capes bring smiles to her and her staff as well. Knowing that patients and their families are comfortable with the care they receive is huge.
“Everyone in the NICU has a passion for what they do,” she said. “We truly love caring for some of Texas Children’s most fragile patients.”
Texas Children’s Hospital, together with Texas Children’s Pavilion for Women, house the nation’s largest level IV NICU, the highest level of care available for premature and critically-ill newborns. Babies born prematurely require round-the-clock care and often need access to highly specialized services to have the most optimal outcomes. Complications from premature birth (before 37 weeks gestation) are the #1 cause of death of babies in the United States and 1 in 10 babies in the U.S. are born too soon.
October 16, 2018
Golfers wore their baddest pants, played their best golf and raised more than $500,000 for Texas Children’s Newborn Center at the Clubs of Kingwood last week. The Bad Pants Open, an annual golf tournament now in its 21st year, has raised more than $6.5 million in the past two decades to support continued innovation and excellence in the research, treatment and care of critically ill and premature infants as well as helping to fund support services for families with babies in the hospital’s neonatal intensive care unit (NICU).
Presented by RBC Wealth Management/Capital Markets and chaired by Rob Cooksey, vice president of Texas Aromatics, golfers enjoyed breakfast provided by Chick-Fil-A, a long drive exhibition by Dan Boever and lunch on the course provided by Beck’s Prime. Players also enjoyed complimentary pre-golf stretching provided by Reach Stretch Studios and live on-site broadcasting by ESPN 97.5 Houston, the tournament’s media partner.
The event featured a post-play awards ceremony and dinner catered by Swift Events, where players were awarded plates painted by Texas Children’s patients for both the best golf scores and baddest pants. Monique Landor, a NICU nurse at Texas Children’s Pavilion for Women, was presented with the NICU Nurse of the Year award, a special recognition awarded at each tournament.
More than 2,500 critically-ill and premature infants receive essential care in Texas Children’s NICU each year, many of whom are born at nearby Houston-area hospitals. Texas Children’s is the nation’s largest NICU and one of only two Level IV NICUs in the greater Houston area. The next Bad Pants Open golf tournament is scheduled for Wednesday, October 2, 2019. More information is available at www.badpantsopen.com.