Cook Children’s staff dedicated to neonatal emergencies
by Diana De Leon, reporter

    Whether for a minor or life-threatening illness, no parents are ever prepared to see their newborn in the Neonatal Intensive Care Unit, (NICU).

   The NICU is dedicated to taking care of sick and premature newborn babies, and technology available today is saving lives that could not be saved 10 or 15 years ago.

   “You could never prepare yourself for it,” Kendall Bilbow, a TCC student and mother of Jylian, said, “It was surreal.”

   Jylian was born a full-term baby with breathing and skeletal problems. A recessed jaw that was blocking her airway caused Jylian’s breathing problems t. This problem was addressed with the insertion of a tube into her throat, which would make it easier for her to breathe. Called intubation, the process was done to Jylian when she was only a few hours old.

   ‘It was like a bad dream,” Bilbow said.

   While most babies are born with a soft spot on the tops of their heads, Jylian was born with her soft spot closed, a condition called craniosynostosis.

   This is a rare condition in which the five thin curved bony plates in the skull that meet along lines called sutures fuse prematurely.

   A baby’s brain and skull double in size in the first six months of life and again by age 2. After the age of 2, the sutures begin to close so that the bony plates of the skull can fuse.

   A prayer chain was started by the Bilbow family’s church, and friends and family crowded into the visiting rooms at the hospital.

   “We could definitely feel it, because I think it got us through,” Bilbow said.

   Transferred to Cook Children’s in Fort Worth shortly after birth, Jylian would enter one of the most technologically advanced hospitals in the country.

   Cook Children’s Medical Center (Cook’s) is a children’s hospice. The center does not deliver babies, but it does care for sick and premature babies from all over North Texas.

   A system called regionalization determines where sick and premature babies go for specialized care.

   Jylian’s breathing problem was addressed first and she would undergo a tracheostomy, an operation that cut skin over the windpipe to create an airway, when she was one month of age.

   While in the hospital, Jylian lived inside an incubator or isolette, as it is sometimes called. The incubator is a plastic see-through box that can regulate the temperature within itself to help keep a baby warm.

   The baby was put in an isolette with tubes running into her body.

   “It was hard to see,” Bilbow said.

   Jylian had a neonatologist, a doctor with special training and education who works only with sick or premature babies, and other specialized people caring for her.

   The NICU team includes registered nurses, pediatric specialists, respiratory and physical therapists, social workers, chaplains and case managers.

   Many new parents with babies in the NICU are overwhelmed with emotion and questions.

   Although parents may do everything right, something can still go wrong.

   “You could never prepare yourself for it,” Bilbow said.

   Cook’s recognizes the needs of the parents.

   “We have our own social worker dedicated just to the NICU,” Barbara Greer, director of the NICU at Cook’s, said.

   Emotional stress that comes with a baby’s hospitalization is addressed through NICU support groups and hospital prayer groups.

   Bilbow expressed gratitude that strangers as well as friends and family were praying for her baby.

   “We empower our nurses,” Greer said, “they work well with the families.”

   Jylian spent her first two months at Cook’s, with her parents and Bilbow’s mother taking home-care training for a month before baby Jylian went home.

   “I don’t know what I would do without her,” Bilbow said about her mother.

   Every patient’s room at Cook’s has a sofa so that one parent can always be with their child.

   “We lived at Cook’s,” Bilbow said. “I appreciate everything they have done.”

   Training the Bilbows to care of Jylian was necessary because of the tracheostomy.

   Jylian was also given an apnea monitor when she went home. Apnea is the temporary cessation of breathing, and infants with a tracheostomy often require home monitoring.

   The equipment monitors respirations and heart rate. When breathing or heart rate drops below a predetermined rate, an alarm goes off.

   The Bilbows were trained in the use of the apnea monitor and CPR before taking Jylian home.

   Developmentally, Jylian has no brain damage and has the potential to lead a normal life.

   Surgery to correct the craniosynostosis is scheduled for September and will be done at the Cranial Facial Institute in Dallas.

   Most pregnancies are normal and result in a healthy baby, but unexpected problems do occur.

   “It is very rare that there is a prenatal diagnosis, where the sonogram shows that the baby is going to have a bad heart or other problems,” Greer said.

   Out of four million babies born annually in the United States, 10 percent require neonatal intervention, according to the Pediatrics medical group.

   The national average length of stay for babies admitted to the NICU is 15 days, with some like Jylian staying longer.

   “A majority of people did not have a clue that something was wrong,” Greer said.

   Cook Children’s Medical Center resulted when the former Cook Children’s Hospital and the Fort Worth Children’s hospital merged in 1985.

   The current building resembles a castle. Cook’s treats only children up to 14 years of age. The NICU occupies half of the second floor.

   “As far as the NICU, we have the latest equipment,” Greer said “We can pretty much take care of anything.”
Bilbow agrees.

   “I have no complaints about Jylian’s care,” she said.