Watch the newest “I am Texas Children’s” video featuring employee Dana Gonzales in West Campus – Diabetes/Endocrine Care Center. “As a pediatric nurse, I love taking care of children and providing support to their families. There’s always room to grow and learn new things at Texas Children’s.” Check out her video, and find out how you and your coworkers can be featured in the “I Am Texas Children’s” section on Connect.
By Shelly Lopez-Gray
August is National Breastfeeding Awareness Month, and every time I go online, I’ve seen pictures of different celebrities breastfeeding their babies. The last one I saw was of Olivia Wilde, perfectly perched in what looks like a diner’s booth, her dress flowing around her, breastfeeding her naked 4-month old baby. The picture is really, really lovely, but I never had one of those moments.
The first time I breastfed my NICU baby, I was so nervous. He was so little, and he was covered with all these wires and tubes and I was afraid I’d hurt him. But I knew that he needed me and I really felt like my breast milk was the medicine he needed to get better. I was so thankful that he was such a great breastfeeder for such a little guy! As a registered nurse and lactation consultant, I know breast milk alters to meet your baby’s needs. I genuinely believe that I helped him get better faster by breastfeeding him.
When I went back to work, breastfeeding became more of a challenge. There were times I couldn’t wait to give it up. Because Texas Children’s Pavilion for Women offers designated spaces for employees to pump, it was never hard finding a place to pump once I came back to work. But it took so much effort to clean the parts, store the milk and make the bottles. It was so much easier to just put him to my breast! But I kept breastfeeding and pumping because I loved being able to do something that would give my baby the very best start.
My baby is almost a year old now. He is no longer breastfeeding, but I miss it, and if I could still do it, I would. Although I know I never looked like Olivia Wilde perched in that chair, I loved having him so close to me. I loved feeling every breath he took. I loved feeling the weight of his little baby body next to me, and I loved the way he fell asleep in that breast milk coma after I nursed him.
Breastfeeding is beautiful and selfless, and it’s a gift that only a mother can give to her baby. It’s not always the easiest thing to do, it’s not always the most convenient, but it’s one of the most important things you can do for you baby.
If you know in advance that you are going to have a NICU baby, or if you are surprised with one after delivery, the most important thing you can do is pump as soon as possible after delivery to help establish your milk supply. If you are considering whether or not to breastfeed your baby, know it’s not as glamorous as it might look in some pictures. But every ounce of effort is worth it when you hold your baby close and share a moment with him that can only be had between mother and her baby.
On the 12th floor of West Tower, in an eight-bed rehabilitation unit, the rehab team including therapists, nurses, neuropsychologists, child life specialists and physicians, are helping children relearn how to do those things that we all take for granted; walk, talk, stand, eat, bathe and play. It’s the daily tasks that they once knew well but after being impacted by a disease or accident, these children must relearn the basics. Just two years after opening its doors, the unit has seen 262 patients many who, with intensive rehabilitation, progressed from little or no functional independence to actively participating in their lives outside of the hospital walls.
Watch a short video explaining why we opened the unit in May of 2012
Now, the unit is celebrating a major milestone after receiving the highest level of accreditation from the Commission on Accreditation of Rehabilitation Facilities (CARF). It is the only pediatric inpatient rehabilitation facility in the state of Texas and one of only 31 worldwide with this level of accreditation. CARF international is an independent, nonprofit accreditor of health and human services.
“We built this unit with the understanding that we wanted to be leaders in the pediatric rehabilitation community and we wanted to lead in the nation,” said Dr. Christian Niedzweicki, medical director of inpatient rehabilitation. “We wanted to be a center of national prominence and CARF is the gold standard.”
The CARF accreditation means the rehab program has demonstrated significant conformance with at least 1,500 standards signifying quality care for children with multiple disabilities in the inpatient rehab setting. The CARF accreditation survey team who conducted the survey interviewed physicians, nurses, therapists, patients and patient families as well as system-wide organizational representatives to determine the level of care and service that was being provided.. Accreditation is predicated at least in part on how well the rehab program addresses the individual needs of the patients and families. Texas Children’s inpatient rehabilitation team creates an individualized and family centered plan of care for each patient based on their needs and levels of disability and ability. The rehab team sets daily, weekly and discharge goals unique to each child and their levels of progress. The child’s every activity from waking up in the morning and brushing their teeth, eating breakfast, attending therapy sessions, school, playing and each step until bedtime is dedicated to their recovery.
“Our team is passionate and dedicated to helping each child and their family achieve the best possible outcome,” said Shelley Ellison, director of physical medicine and rehabilitation. The team members, including the patients and their families, work collaboratively to achieve the identified goals throughout the day and night through hands-on intervention as well as ongoing progressive education to patients, families and others.
The program’s newest recognition is just the beginning of an on-going process of continuous performance and quality improvement. Niedzwecki said most programs don’t attempt accreditation until they’ve been open for at least five years. The Texas Children’s Hospital rehab unit submitted their letter of intent to be surveyed for accreditation at just 18 months. The rehab team works collaboratively to embrace the culture of ongoing improvement while striving to be the best in the country.
“We will continue to constantly reassess the input from our patients and their families to continue improvement,” said Niedzwecki. “This accreditation means we are doing what is right for the patient and are now recognized by an international accrediting organization that helps us become a leader in the field.”
Niedzwecki and Ellison both emphasize the commitment of the entire IRU team and numerous others across the organization that made this major accomplishment a possibility.
Riki Graves was already fighting a battle when she found out, at 20-weeks pregnant, that her unborn daughter, whom her and her husband, Chris, planned to name Juliana, had a complex heart condition, with the full and final diagnosis listed as, unbalanced AV canal with severe bivetnricular dysfunction, small arotic arch, severe right AV valve regurgitation, parachute left sided AV valve with regurgitation in heart failure. Juliana would likely need several heart surgeries, and even with the surgeries might not survive.
Riki describes how she felt when she received the devastating diagnosis, “Hearing those words sent a panic through me that, even now, is hard to describe. After the initial diagnosis, my doctor referred us to the Texas Children’s Fetal Center.”
Riki’s journey actually began at 8-weeks pregnant, when she was diagnosed with breast cancer. Riki made the painful choice to pause treatment while still pregnant, fully understanding that it may make her own battle more difficult.
“It was an extremely difficult and highly personal decision. In the end I wanted to provide my daughter with the strongest pregnancy and healthiest beginning to life possible. During that time there was a lot of things out of my control, but with my treatment, I was able to take the reigns, make a decision to provide for my baby,” said Riki.
When Riki presented at the Fetal Center, it appeared that her unborn daughter would likely require three heart surgeries – the Norwood, Glen and Fontan. But, as the pregnancy neared the end it became unclear what surgeries could be expected when Juliana was born.
Christie Moran was the Fetal Center coordinator who cared for the Riki. She developed a special bond with the family, “Mrs. Graves pregnancy was further complicated by the fact she had been diagnosed with breast cancer during this pregnancy. Either diagnosis during pregnancy can be challenging to manage but the combination made Riki’s case very unique. I felt very privileged to help guide them through this pregnancy, to provide information, to give support and to offer hope.”
Riki’s team of doctors at the Fetal Center continued to monitor her pregnancy very closely. Dr. Wesley Lee, co-director Dr. Nancy Ayres, director or non-invasive imaging and fetal cardiology at the Fetal Center, were among the multi-disciplinary team that cared for Riki during her pregnancy.
Juliana was born on April 9, 2014 and, it was determined that her heart was too structurally abnormal and weak to undergo surgery. Juliana was placed on the transplant list on April 21. On April 26, at 17 days old, she received her new heart.
Dr. Jeffrey Heinle, associate chief of Congenital Heart Surgery led the transplant surgery. Juliana’s transplant surgery was a success, and she is recovering smoothly. Since the transplant, Dr. Aamir Jeewa, pediatric cardiologist, has been following Juliana and working with the Graves to provide them with continuous, ongoing care. The Graves family is relocating from Corpus Christie to Houston to be closer to Texas Children’s, and Riki is currently undergoing treatment for her cancer at M.D. Anderson, staying positive and hopeful for the future.
Riki reflects on her time at Texas Children’s, “We made it with the help of the staff of Texas Children’s Hospital. From my maternal-fetal doctor Dr. Ramirez, who was beyond supportive, to our fetal cardiology nurse coordinator Christie Moran, who helped us get settled in Houston, to all of the doctors, fellows and nurses that helped us get through, we can’t thank them enough. They were there for Juliana and my family during the entire process.”
To read more about the Graves, please visit the Today Show or ABC News websites.
A lot happened in 1954. Social Security as we know it was signed into law by President Eisenhower, the first mass vaccination of children against polio began and the first organ transplants were done. The first electronic color television came on the market, Elvis Presley cut his first commercial record kicking off his incredible music career, I Love Lucy began airing around the nation, the song White Christmas was first heard and Texas Children’s Hospital admitted our first patient, opening doors to decades of caring for children and women in the community and around the globe.
Six decades is a long time to be around and Texas Children’s young patients think so too. Connect asked the patients what exactly they thought of the age 60. Watch this short video to hear their answers.
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It was off to camp for several members of Texas Children’s pediatric neurology team and their patients. They made the trek to Camp For All, a beautiful, barrier-free recreational facility in Burton that helps children with special needs experience the thrill of camping and nature, just like normal kids their age.
Each summer, Camp For All hosts Camp Spike ‘n’ Wave, a weeklong camping expedition for children and teens with epileptic seizures. They build new friendships, unleash their independent, adventurous spirit, and focus less on their disability.
“We don’t want their medical condition to completely define who they are,” said Dr. Gary Clark, the camp’s lead physician and chief of Neurology and developmental neuroscience at Texas Children’s. “Wheelchair bound or not, every child can accomplish just about anything they set their minds to.”
Unlike traditional camps, Camp For All has no barriers. The entire 100,000 square foot facility – including cabins, bathrooms, showers, and sidewalks – are completely wheelchair accessible. The sidewalks are wide enough to accommodate side-by-side wheelchairs. And, every child is able to participate in all activities, regardless of the severity of their disability. If a wheelchair bound child wants to canoe, the child is placed in a sling and lowered into the canoe with a crane so they can explore nature on the water, just like their able-bodied peers.
“I will never forget how one of our wheelchair bound patients got to go on the big swing, which is essentially a big zipline,” said Sterling Myers, a camp volunteer and pediatric neurology nurse at Texas Children’s. “It made me smile to see the campers cheer each other on at every activity and boost each other’s self-esteem.”
More than 120 children with epilepsy participated in adrenaline-pumping activities like rockwall climbing, zip lining, horseback riding, rope courses, archery, biking, fishing, canoeing, swimming, karaoke, and arts and crafts.
“It was great to see their fearlessness,” said Dr. Shannon Dicarlo, a pediatric neurology physician and former fellow at Texas Children’s. “They didn’t let their epilepsy get in the way of going about their lives, making friends, and having fun.”
Behind the scenes, our Texas Children’s medical team made sure the kids received superior care away from home. Every child at camp required medication for their seizures. Texas Children’s pharmacists filled and labeled prescriptions onsite according to the patients’ electronic medicine administration record generated at the hospital.
“When you think about it, we operated a mobile hospital right here at the campground,” said Clark. “It’s all about meeting our children’s needs.”
Camp Spike “n” Wave provides unique training opportunities for fellows to observe how their clinical decisions can impact their patients. It’s not every day that physicians see patients have seizures or struggle to swallow a fistful of pills. When these happen, highly trained camp counselors, along with Texas Children’s physicians and nurses, spring into action.
“This year, we trained a 6-year-old how to swallow pills,” said Dr. Geetanjali Rathore, a pediatric neurology fellow at Texas Children’s. “He shed a few tears the first time, but by the end of the week, he became a champ at swallowing pills.”
Camps, like Camp Spike ‘n’ Wave, wouldn’t be possible without the diligent efforts of Texas Children’s own, Dr. Robert Zeller, chief of the Blue Bird Circle Clinic, who collaborated tirelessly with other physicians and organizations to create Camp For All in 1993.
“I had a patient with epilepsy who couldn’t go to camp because camps wouldn’t accept children with this condition,” said Zeller. “This prompted me to develop a camp for disabled children who can discover life without barriers. It’s my way of giving back to my patients.”
By Dr. Binal Kancherla
All parents run across sleep dilemmas with their child at some point. If it doesn’t happen at 5 days, 5 months old or at 5 years old, it will happen! When my two sons – now ages 5 and 3 – were younger, I would place them in their crib while they were drowsy so they could learn to self-soothe. This method, along with establishing bedtime routines early on, seemed to work well for my family…most of the time!
Recently, I came across an interesting study in Pediatrics, titled, “Infant Sleep Machines and Hazardous Sound Pressure Levels.” While sleep-inducing white noise machines can be a miracle product for exhausted parents, this study may have left many families worrying about whether sleep machines increase a baby’s risk of hearing loss.
The study proposes that during the early development of a baby, their auditory pathways are sensitive and require the appropriate auditory input. Appropriate input means sounds, such as human speech, that are regular in the baby’s environment and usually produced with an irregular frequency. White-noise machines expose babies to a noise of a very consistent frequency over long periods of time. According to the study, in the long-term this disrupts the normal processing of frequency in the brain therefore affecting the child’s ability to hear and process sound intensity.
Researchers tested the maximum noise levels in 14 infant sleep machines at three distances. All but one exceeded the current recommended noise limit for infants in hospital nurseries, even at the farthest distance.
I think the study raises some concerns, but it doesn’t provide specific evidence that these machines lead to hearing problems. Although white noise machines may be successful in lulling a baby to sleep, I believe it is important for parents to establish proper sleep patterns. This can be done by starting a bedtime routine early in infancy, placing the baby in his or her crib while drowsy but not fully asleep, and not allowing the infant to fall asleep while taking a bottle or nursing.
For those new parents out there who opt to use the white-noise method, it’s probably a good idea to position the machine farther away from your baby’s crib, more than the 6 ½ feet tested in the study. Other tips include keeping the volume set on low and only operating the machine for a short duration of time.
Ultimately, each family and each baby is different, but one thing is always true – sleep is necessary to function, to live, for both parent and child. So, find something that works for your family and consult your pediatrician with any specific concerns.