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The Medically Complex Premature Infant in Primary Care
Original Article
The Medically Complex Premature Infant in Primary Care Michelle M. Kelly, RN, MSN, CRNP
ABSTRACT The survival rate of the smallest and youngest of premature infants has continued to improve as medical technology has progressed. The current edge of viability is represented by infants born at 23 to 25 weeks’ gestation. Neonatal survival of infants at 23 weeks’ gestation ranges from 11% to 30%. Survival to hospital discharge for infants ranging from 23 to 26 weeks’ gestation is about 70%; 30% to 50% of these infants have moderate to severe disability. Nurse practitioners and physicians will be meeting these young infants in primary care offices after they have been discharged from the neonatal intensive care unit. This article is Part III in a series addressing issues related to the premature infant. This installment focuses on medically complex premature infants and their health issues after discharge. Part I addressed issues common to all premature infants. Part II looked at the healthy premature infant and their management in primary care. J Pediatr Health Care. (2006) 20, 367-373.
Michelle M. Kelly is Pediatric and Neonatal Nurse Practitioner, AI duPont Hospital for Children, Main Line Hospitals, Pa. Reprint requests: Michelle M. Kelly, RN, MSN, CRNP, 750 Champlain Dr, King of Prussia, PA 19406; e-mail: [email protected]. 0891-5245/$32.00 Copyright © 2006 by the National Association of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2006.01.003
Journal of Pediatric Health Care
www.jpedhc.org
Survival for the smallest and youngest of premature infants has continued to improve with technology and medical advances. The 1997-1998 Proposed Guidelines on Hospital Discharge of the High Risk Neonate by the American Academy of Pediatrics (AAP) Committee on Fetus and Newborn (1998) suggested that discharge of premature infants be based on a sustained pattern of growth rather than a specific discharge weight. Infant readiness was further determined to include temperature homeostasis, oral feeding, and mature cardiorespiratory function. The home environment, access to home care, and family acceptance were identified as other areas of readiness that needed to be explored prior to discharge (AAP, 1998). This lead to the discharge of very small infants, some with complex medical care, who may be monitored by specialists and neonatal follow-up clinics but who also present in the primary care provider’s office. Infants at 23 to 25 weeks’ gestation currently are considered at the edge of viability. Many prenatal centers in the United States offer routine resuscitation of infants at 23 weeks’ gestation (Hoekstra, Ferrara, Couser, Payne, & Connett, 2004). Two large studies cited by the AAP 2002-2003 Committee on Fetus and Newborn (2003) estimate neonatal survival at 11% to 30% at 23 weeks’ gestation, 26% to 52% at 24 weeks’ gestation, and 54% to 76% at 25 weeks’ gestation. These rates do not represent postnatal survival. In 2004 Hoekstra and colleagues published survival to discharge rates of 73% for infants at 23 to 26 weeks’ gestation. Moderate to severe disability, which may require prolonged hospitalization or medical care, complicates the survival of 30% to 50% of these infants (AAP, 2003). Infants born at less than 28 weeks’ gestation or less than 1000 g have an November/December 2006
367
Conditions associated with extremely premature infants that alter their primary care include bronchopulmonary dysplasia, retinopathy of prematurity, neurodevelopmental delays, and feeding difficulties.
average neonatal intensive care unit (NICU) stay of 100 days (Perlman, 2002). Conditions associated with extremely premature infants that alter their primary care include bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), neurodevelopmental delays, and feeding difficulties. NEURODEVELOPMENTAL ISSUES Neurodevelopmental morbidities impact the quality of life of premature infants and their families. Medical conditions of prematurity—BPD, intraventricular hemorrhage, ROP, sepsis, feeding difficulties, auditory deficits, and anemia—all have the potential to negatively effect an infant’s neurodevelopment. BPD is the most important clinical condition, in the absence of brain injury, to be associated with neurobehavioral problems in very low birth weight infants (Perlman, 2002). Positive predictors for neurologic outcomes are female sex, cesarean section delivery, normal brain ultrasound findings, and the absence of BPD (Hoekstra et al., 2004). Cognitive and behavioral problems occur similarly with or without neuroimaging abnormalities (Perlman). Thirty percent of infants born at less than 1000 g who have normal head ultrasounds at discharge have cerebral palsy or other severe developmental delay at follow-up (Salhab, Perlman, Silver, & Broyles, 2004). Subnormal head growth at 8 months corrected age also is a strong predictor of poor cognitive function, poor aca368 Volume 20 • Number 6
demic achievement, and behavioral issues at 8 to 9 years of age (Salhab et al.). Hoekstra and colleagues (2004) found a discrepancy between early follow-up evaluations and later performance in infants born 23 to 26 weeks’ gestation, suggesting that these infants are at risk for having social and educational problems later in life. Initial screening with these infants was encouraging; however, assessments later in childhood showed persistence of delays. Of former very low birth weight infants assessed in adolescence, 30% to 50 % will display subnormal academic achievement, 20% to 30% will have attention deficit hyperactive disorder, and 25% to 30% will have psychiatric disorders (Perlman, 2002). Postdischarge social and environmental conditions significantly influence cognitive outcome (Perlman). Health care providers should stress the importance of an involved family in the infant’s care and future development. Family support can be effective regardless of the composition of the family. A supportive and involved family system is crucial to the medically
complex premature infant whose needs may be overwhelming to the caregiver when faced alone. Primary health care providers should encourage families to seek out and participate in available early intervention services and programs through the Individuals with Disabilities Education Act (IDEA), part C. Half of infants with abnormal hearing screens are NICU graduates (Marshall, 2003). Former low birth weight children make up 19% of all children with hearing loss (Davis, Sweeney, Turnage-Carrier, Graves & Rector, 2004). Risk factors for sensory neural hearing loss include a birth weight of less than 1500 g, mechanical ventilation for more than 5 days, hyperbilirubin approaching exchange level, Apgar scores of 0 to 4 at 1 minute and 0 to 6 at 5 minutes, bacterial meningitis, and administration of ototoxic medications while in NICU (Davis et al.; Ritchie, 2002). Congenital diaphragmatic hernia, persistent pulmonary hypertension, and extracorporeal membrane oxygenation all are strong predictors for sensory neural hearing loss (Davis et al.). Identification of hearing deficits and appropriate referral is important in maximizing the infant’s language development. Most intensive care nurseries provide a neonatal follow-up program that may include members of various health specialties, with the combined purpose of facilitating referral to appropriate resources and providing medical follow-up and developmental assessment. Infants determined to be at risk are monitored at regular intervals.
Primary health care providers should encourage families to seek out and participate in available early intervention services and programs through the Individuals with Disabilities Education Act (IDEA), part C. Journal of Pediatric Health Care
RETINOPATHY OF PREMATURITY ROP is a failure of the retinal vessels to grow and develop normally (Early Treatment for Retinopathy of Prematurity Cooperative Group [ETROP], 2005). Untreated, this condition can progress to visual impairment and blindness (ETROP). ROP results in blindness in an estimated 500 infants in the United States, and significant retinal scars occur in approximately 4500 infants per year who are born weighing less than 1500 g (Anderson, Benitz, & Madan, 2004). ROP develops in two phases. Phase I includes the interruption of normal vasculogenesis as a result of the relative hyperoxic extrauterine life, resulting in vascular injury and retinal avascularity (Anderson et al.). Phase II includes abnormal neovascularization in response to the relative hypoxia from the increased demands of the developing retina (Anderson et al.). Vision loss occurs as this recovery phase causes an overgrowth of new vessels in the retina and vitreous cavity (Anderson et al.). Fundal examinations should be performed by an ophthalmologist with expertise in premature infants and their retinal conditions (AAP, 2001). The examinations should classify retinal changes based on the International Classification of Retinopathy of Prematurity (AAP, 2001). Timing of examinations after hospital discharge is based on initial examination findings and gestational age (AAP, 2001). Infants weighing less than 1500 g at birth or who are born at less than 28 weeks’ gestational age and infants weighing between 1500 to 2000 g with a complex medical course should have at least two fundal examinations (AAP, 2001). The first examination should occur between 4 to 6 weeks of chronologic age or between 31 to 33 weeks’ postmenstrual age (AAP, 2001). Follow-up examinations should occur at 1- to 3-week interJournal of Pediatric Health Care
vals, depending on findings, until normal vascularization is complete (AAP, 2001). Treatment consisting of retinal cryotherapy or laser ablation should occur within 72 hours of diagnosis of threshold 1 ROP to avoid retinal detachment (AAP, 2001). With or without ROP, premature infants are at increased risk of vision impairment and should be evaluated by a pediatric ophthalmologist at 6 months and then yearly (Marshall, 2003; Verma, Sridhar, & Spitzer, 2003). RESPIRATORY CONDITIONS AND SUPPORT AFTER DISCHARGE Norway, Rosan, and Porter (1967) described neonatal lung injury and the associated radiographic findings as BPD. This condition and its treatment have undergone some changes during the past 40 years. Antenatal glucocorticoid therapy, advances in mechanical ventilation, and surfactant treatments have decreased the incidence of this severe lung disease (Jobe & Bancalari, 2001). Current working definitions of BPD focus on oxygen use. In infants born at less than 32 weeks’ gestation, BPD is defined as the need for supplemental oxygen at 28 days of life; in infants born at 32 or more weeks’ gestation, it is defined as a supplemental oxygen requirement at 36 weeks’ corrected age (American Thoracic Society, 2003). Surfactant deficiency, pneumonia, sepsis, meconium aspiration, pulmonary hypoplasia, persistent pulmonary hypertension, congenital heart defects, and other congenital anomalies predispose the infant to development of BPD (American Thoracic Society). It has been shown that an inflammatory response develops in these infants that may contribute to further respiratory complications (American Thoracic Society). The National Institute of Child Health and Human Development, the National Heart Lung and Blood Institute, and the Office of Rare
Diseases collaborated to review BPD and make recommendations for future research (Jobe & Bancalari, 2001). The groups encouraged the use of the term BPD rather than chronic lung disease because it differentiates the term from the multiple chronic lung diseases of childhood and adulthood (Jobe & Bancalari). The American Thoracic Society (2003) supports this terminology but cautions that the BPD of today is different than that originally described. The “new” BPD is a picture of uniformly arrested development of alveolar tissue rather than severe cellular proliferation and fibrosis of the past (American Thoracic Society). The American Thoracic Society describes a condition composed of various chronic lung diseases of prematurity, including BPD, which develops into what they define as chronic lung disease of infancy. BPD increases the child’s susceptibility to respiratory infections and bronchospastic conditions. It is a predictor for poor weight gain, developmental delays, and increased use of medical services after initial NICU discharge (Smith et al., 2004). When further challenged by upper or lower respiratory tract symptoms, infants with BPD experience decreased lung volumes, causing ventilation/perfusion mismatches (Halbower & McGrath, 2004). Smith and colleagues (2004) studied 1597 infants at less than 33 weeks’ gestational age from 1995-1999; 15% were diagnosed with BPD. Of the infants with BPD, 49% were readmitted to the hospital during the first year of life, compared with 23% of infants without BPD (Smith et al., 2004). The numbers of admissions, lengths of stay, and consequently the health care costs incurred were statistically different between the two groups (Smith et al., 2004). Using the same study population, Smith and colleagues (2005) further studied the incidence of BPD. They found that while there has been no statistically significant November/December 2006 369
reduction in BPD rates during their study period, there was a significant decline in severe BPD (Smith et al., 2005). The greatest reduction was seen in infants at less than 29 weeks’ gestation at birth, a reduction from 26% to 8% (Smith et al., 2005). Smith and colleagues are hopeful that this reduction in severe BPD will translate to a reduction in nonasthmatic chronic respiratory disease and therefore a reduction in overall health care costs. Home oxygen therapy has proven benefits for increased growth, decreased airway resistance, increased compliance, and decreased sudden infant death syndrome (SIDS) in patients with BPD (Ellsbury, Acarregui, McGuinness, Eastman & Klein, 2004). Its use is supported by the AAP and the American Thoracic Society (American Thoracic Society, 2003; Ellsbury et al., 2004). Supplemental oxygen, aimed at avoiding hypoxemia, reverses pulmonary vasoconstriction, decreases pulmonary airway resistance, improves right ventricular function, and improves oxygen delivery (Kotecha & Allen, 2002). Goals of oxygen therapy, as put forth by the American Thoracic Society, are to promote growth of the child and therefore the developing lungs, to provide adequate exercise tolerance, and to decrease pulmonary hypertension and right ventricular work load. Infants will show improved growth rates with supplemental oxygen, while decreased growth is common in hypoxemic states (Kotecha & Allen). For infants receiving oxygen at home, 100% oxygen is delivered at low flow rates via nasal cannula to maintain the target oxygen saturation (American Thoracic Society, 2003). Cardiopulmonary monitors and pulse oximetry are recommended to allow caregivers to adjust flows accordingly (American Thoracic Society). Differing activity levels and illness may require the adjustment of flow to maintain the desired oxygen saturation. Ox370 Volume 20 • Number 6
ygen desaturation can occur during sleep and feeding, and infants discharged from the NICU who are receiving supplemental oxygen should be monitored appropriately during these periods (Kotecha & Allen, 2002). Controversy surrounding appropriate target oxygen saturation stems from concerns over the relationship between high oxygen concentrations and the development of ROP in premature infants (American Thoracic Society, 2003; Kotecha & Allen, 2002). Ellsbury and colleagues (2004) surveyed neonatologists in 2000 and found that the majority of neonatologists recommended target oxygen saturation levels lower than those supported by existing research and literature. The target oxygen saturation range until normal vascularization is complete, while the risk of ROP is high is 89% to 94% (American Thoracic Society; Kotecha & Allen). The American Thoracic Society advocates maintaining oxygen saturation of greater than 95% for infants beyond the age of oxygen-induced retinopathy. Diuretic therapy has been shown to improve pulmonary function, decrease airway resistance, increase pulmonary compliance, and increase airway conductance (American Thoracic Society, 2003). Three commonly used diuretics are chlorothiazide, which inhibits sodium and chloride reabsorption in the distal tubule; furosemide, which inhibits sodium and chloride reabsorption in the ascending loop of Henle; and spirolactone, which decreases sodium reabsorption and potassium excretion (American Thoracic Society). Electrolytes should be monitored routinely in infants receiving chronic diuretic therapy (American Thoracic Society). Sodium chloride and potassium chloride supplements are used to correct electrolyte deficiencies incurred with diuretic therapy. Inhaled bronchodilators are used to acutely improve lung function and decrease airway resis-
tance in infants whose bronchospasm is interfering with ventilation (American Thoracic Society, 2003). Metered dose inhalers used with spacers are advocated to avoid the potential paradoxical deterioration that can be seen with nebulization of bronchodilators (American Thoracic Society). Corticosteroids can be used to decrease the need for bronchodilators and reduce the chronic asthma-like symptoms associated with BPD. Corticosteroids also should be administered by metered dose inhalers with spacers when feasible (American Thoracic Society). Growth delay, hypertension, osteoporosis, adrenal suppression, cataracts, and oral candidiasis all are potential adverse reactions of corticosteroid use (American Thoracic Society). The infant with BPD requires careful and frequent medical assessment. A neonatologist may be involved in management of oxygen or diuretic therapy in the months after discharge. The complex patient with BPD may require the input of a pediatric pulmonologist as well. FEEDING INFANTS WITH COMPLEX HEALTH PROBLEMS Comorbities of prematurity may make attainment of adequate weight gain more challenging than just getting the child to consume more calories. Infants who fail to demonstrate catch-up growth during the first 2 years are unlikely to achieve it later in childhood (Thureen & Hay, 2005). Current research questions whether this finding is a result of permanent programming or inadequate nutrition early in life (Thureen & Hay). Fluid restriction (manifested as the inability to consume) or restriction enforced as a result of underlying disease states often is the limiting factor for infant growth. One equation for estimating proposed caloric need is listed in the Figure. Serial measurement of head circumference, weight, length, and Journal of Pediatric Health Care
FIGURE. Formula for estimated caloric need to catch-up growth (adapted from the American Thoracic Society, 2003). Estimated caloric need for catch-up growth = (Recommended dietary allowance for CA {kcal/kg} × ideal weight for height) Actual weight
interval growth are crucial for identifying children who are failing to attain appropriate growth. Special attention to coordination of oral feeding, oxygen supplementation to meet increased oxygen consumption from increased metabolic rates, and fluid restriction to avoid pulmonary edema is required when developing a nutritional plan for an infant with BPD (American Thoracic So-
a physiologic condition present in all preterm infants to some degree. Frequent GER episodes may produce esophageal mucosa injury, leading to esophagitis with dysmotility, poor feeding, irritability, and crying (Jadcherla, 2002). Jadcherla described these infants as “scrawny screamers” and describes a cycle of symptoms that can lead to failure to thrive. Surgical intervention may be considered in
Comorbities of prematurity may make attainment of adequate weight gain more challenging than just getting the child to consume more calories. ciety, 2003). BPD increases energy expenditure by as much as 25% over the infant’s basal needs (Thureen & Hay, 2005). For infants with BPD, growth delay is directly related to severity and duration of disease symptoms (Thureen & Hay). Added protein intake, rather than increased lipid or carbohydrate intake, is needed for optimal growth in infants with respiratory disease (Thureen & Hay). In infants with BPD, caloric density of formula may be concentrated to 30 calories per ounce or greater. Input from a nutritionist familiar with the needs of premature infants with complex medical needs is critical to making good recommendations for children and families. Gastroesophageal reflux (GER), described in Part II of this series, is Journal of Pediatric Health Care
medically complex infants for whom routine therapies have failed and further complications of GER are expected (Jadcherla). These infants, particularly those with an inability to protect their airway, may benefit from fundoplication and gastrostomy tube placement (Jadcherla). Ambalavanan and Whyte (2003), while reviewing evidence-based neonatal practice, conclude that respiratory problems attributed to GER may not be caused by GER, and therefore medical treatment of GER may not affect these symptoms. To this extent, treating premature infants with medications may not improve the infant’s respiratory symptoms. Short bowel syndrome is a condition characterized by inadequate functional bowel with resultant
malabsorption and fluid and electrolyte losses (Thureen & Hay, 2005). It often is a sequela of necrotizing enterocolitis, gastroschisis, Hirschprung’s disease, intestinal atresias, or midgut volvulus (Thureen & Hay). Prognosis is dependant largely on the section and amount of intestine remaining. Generally, infants with jejunal resection do better than those with resection of the ileum, and preservation of the ileocecal valve is beneficial (Thureen & Hay). Depending on the severity of the bowel disease, tolerance of enteral feedings in these infants can be a complex process. Elemental formulas designed for infants with feeding intolerance may be used. Infants may be discharged from the NICU with orders for a combination of oral and gavage feedings if tolerance has been obtained but full nipple feeding has not been obtained. Congenital anomalies of the mouth, esophagus, and those associated with hypotonia will predispose the infant to feeding difficulties. Infants with trisomy 21 may be admitted to the NICU from birth or be transferred to the NICU after failing to feed adequately in the nursery. Infants with trisomy 21 may be discharged from the NICU with orders for a combination of oral and gavage feedings. In some instances, the preterm infant may meet discharge criteria in all other parameters except for attainment of oral enteral feedings. The impetus to discharge infants prior to attainment of full oral feedings is reuniting the family in the home environment and suspected cost savings through decreased hospital length of stay. For the short term, the parents may be taught to place a nasogastric feeding tube to administer gavage feedings to the baby. A 2003 Cochrane Review of gavage feedings of premature infants after discharge from the hospital identified limited research regarding cost reduction. However, the few studies November/December 2006 371
Development of a “shadow chart” or patient binder maintained by the family is very helpful in coordination of services.
reviewed appear to support the cost savings (Collins, Makrides, & McPhee, 2004). A recent published study of 52 infants discharged home from a level III NICU with orders for gavage feedings described cost savings findings through decreased length of hospital stays (10 to 12 days shorter) and good parent satisfaction ratings (Strum, 2005). The study group included discharged infants more than 32 weeks’ postconceptual age, with established weight gain of 10 to 20 g per day, with gavage feedings comprising less than 50% of the infant’s intake (Strum). Hospital readmissions did occur in the study group; however, these admissions were not believed to be related to the gavage feedings (i.e., admissions for elective surgery and respiratory illness) (Strum). In more severely affected infants, a gastrostomy tube with or without fundoplication may be surgically placed. Overnight continuous feedings may provide a means of obtaining increased calories while allowing the infant to feed by mouth during the day (American Thoracic Society, 2003). Specialists in gastroenterology and the nutrition in premature infants can and should provide guidance for maximizing the nutritional intake of these at-risk infants. RECOMMENDATIONS Development of a “shadow chart” or patient binder maintained by the family is very helpful in coordination of services. Items to include would be contact names and numbers of medical providers and therapists, a current medication list with doses and times, a procedure 372 Volume 20 • Number 6
list with dates and diagnosis, a recent growth chart, a list of immunizations, and any other information pertinent to the individual child’s condition. For some children, this is a detailed and hefty compilation of information. This information can be brought by the family to specialist visits to facilitate smooth transfer of information. Primary health care providers should review the information with the family regularly to ensure accuracy and understanding of the information. Discharging the medically complex, albeit stable, infant to the home environment is a tremendous benefit to the infant’s development and to the parent-infant dyad (Kotecha & Allen, 2002). The home environment must be adjusted as needed to provide a safe environment. The primary care nurse practitioner and physician are important members of this child’s health care team. Specialists in neonatology, pulmonology, gastroenterology, pediatric surgery, developmental, and other disciplines may participate in the child’s care. Each specialist provides important subspecialty insight into the child’s medical issues. However, the primary health care provider must help with coordination of these services and provide a holistic view into the child’s care.
REFERENCES Ambalavanan, N., & Whyte, R. K. (2003). The mismatch between evidence and practice: Common therapies in search of evidence. Clinics in Perinatology 30, 305-331. American Academy of Pediatrics Committee on Fetus and Newborn. (2003).
Perinatal care at the threshold of viability. Pediatrics, 110, 1024-1027. American Academy of Pediatrics. (2001). Policy statement: Screening examination of premature infants for retinopathy of prematurity: Section on ophthalmology. Pediatrics, 108, 809-811. American Academy of Pediatrics Committee on Fetus and Newborn. (1998). Hospital discharge of the high-risk neonate: Proposed guidelines: Pediatrics, 102, 411-417. American Thoracic Society. (2003). Statement on the care of the child with chronic lung disease of infancy and childhood. American Journal of Respiratory and Critical Care Medicine, 168, 356-396. Anderson, C. G., Benitz, W. E., & Madan, A. (2004). Retinopathy of prematurity and pulse oximetry: A national survey of recent practices. Journal of Perinatology, 24, 164-168. Collins, C. T., Makrides, M., & McPhee, A. J. (2004). Early discharge with home support of gavage feedings for stable preterm infants who have not established full oral feeds. The Cochrane Database of Systematic Reviews. Davis, D. W., Sweeney, J. K., Turnage-Carrier, C. S., Graves, C. D., & Rector, L. (2004). Early intervention beyond the newborn period. In C. Kenner & J. M. McGrath (Eds.), Developmental care of newborns and infants: A guide for health professionals (pp. 373-410). St. Louis: Mosby. Early Treatment for Retinopathy of Prematurity Cooperative Group.(2005). The incidence and course of retinopathy of prematurity: Findings from the Early Treatment for Retinopathy of Prematurity Study. Pediatrics, 116. Retrieved August 1, 2005, from http://www.pediartics.org/cgi/content/full/116/1/15 Ellsbury, D. L., Acarregui, M. J., McGuinness, G. A., Eastman, D. L., & Klein, J. M. (2004). Controversy surrounding the use of home oxygen for premature infants with bronchopulmonary dysplasia. Journal of Perinatology 24, 36-40. Halbower, A. C., & McGrath, S. A. (2004). Home oxygen therapy: The jury is still in session. Journal of Perinatology, 24, 59-61. Hoekstra, R. E., Ferrara, T. B., Couser, R. J., Payne, N. R., & Connett, J. E. (2004). Survival and long-term outcome of extremely premature infants born at 23-26 weeks gestational age at a tertiary center. Pediatrics 113, e1-e6. Jadcherla, S. R. (2002). Recent advances in neonatal gastroenterology: Gastroesophageal reflux in the neonate. Clinics in Perinatology, 29. Retrieved January 27, 2005, from www.mdconsult.com Jobe, A. H., & Bancalari, E. (2001). Bronchopulmonary dysplasia. American
Journal of Pediatric Health Care
Journal of Respiratory and Critical Care Medicine, 163, 1723-1729. Kotecha, S., & Allen, J. (2002). Oxygen therapy for infants with chronic lung disease. Archives of Disease in Childhood Fetal and Neonatal Edition, 87, F11-F14. Marshall, D. D. (2003). Review article: Primary care follow-up of the neonatal intensive care unit graduate. Clinics in Family Practice, 5. Retrieved January 27, 2005, from www.mdconsult.com Norway, W. H., Rosan, R. C., & Porter, D. Y. (1967). Pulmonary disease following respiratory therapy of hyaline-membrane disease: Bronchopulmonary dysplasia. New England Journal of Medicine 276, 357-368. Perlman, J. M. (2002). Cognitive and behavioral deficits in premature graduates of intensive care. Clinics in Perinatology,
29. Retrieved January 27, 2005, from www.mdconsult.com Ritchie, S. K. (2002). Primary care of the premature infant discharged from the neonatal intensive care unit. American Journal of Maternal Child Nursing 27, 76-84. Salhab, W. A., Perlman, J. M., Silver, L., & Broyles, R. S. (2004). Necrotizing enterocolitis and neurodevelopmental outcome in extremely low birth weight infants ⬍1000 g. Journal of Perinatology, 24, 534-540. Smith, V. C., Zupancic, J. A. F., McCormick, M. C., Croen, L. A., Greene, J., & Escobar, G. J., et al. (2004). Rehospitalization in the first year of life among infants with bronchopulmonary dysplasia. Journal of Pediatrics, 144, 799-803. Smith, V. C., Zupancic, J. A. F., McCormick, M. C., Croen, L. A., Greene, J., & Esco-
bar, G. J., et al. (2005). Trends in severe bronchopulmonary dysplasia rates between 1994 and 2002. Journal of Pediatrics, 146, 469-473. Strum, L. D. (2005). Implementation and evaluation of a home gavage program for preterm infants. Neonatal Network, 24, 21-25. Thureen, P. J., & Hay, W. W. (2005). Conditions requiring special nutritional management. In R. C. Tsang, R. Uauy, B. Koletzko, & S. H. Zlotikin. Nutrition of the preterm infant: Scientific basis and practical guidelines (2nd ed., pp. 383412). Cincinnati: Digital Education Publishing, Inc. Verma, R. P., Sridhar, S., & Spitzer, A. R. (2003). Continuing care of NICU graduates. Clinical Pediatrics 42, 299-315.
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November/December 2006 373
The Medically Complex Premature Infant in Primary Care Michelle M. Kelly, RN, MSN, CRNP
ABSTRACT The survival rate of the smallest and youngest of premature infants has continued to improve as medical technology has progressed. The current edge of viability is represented by infants born at 23 to 25 weeks’ gestation. Neonatal survival of infants at 23 weeks’ gestation ranges from 11% to 30%. Survival to hospital discharge for infants ranging from 23 to 26 weeks’ gestation is about 70%; 30% to 50% of these infants have moderate to severe disability. Nurse practitioners and physicians will be meeting these young infants in primary care offices after they have been discharged from the neonatal intensive care unit. This article is Part III in a series addressing issues related to the premature infant. This installment focuses on medically complex premature infants and their health issues after discharge. Part I addressed issues common to all premature infants. Part II looked at the healthy premature infant and their management in primary care. J Pediatr Health Care. (2006) 20, 367-373.
Michelle M. Kelly is Pediatric and Neonatal Nurse Practitioner, AI duPont Hospital for Children, Main Line Hospitals, Pa. Reprint requests: Michelle M. Kelly, RN, MSN, CRNP, 750 Champlain Dr, King of Prussia, PA 19406; e-mail: [email protected]. 0891-5245/$32.00 Copyright © 2006 by the National Association of Pediatric Nurse Practitioners. doi:10.1016/j.pedhc.2006.01.003
Journal of Pediatric Health Care
www.jpedhc.org
Survival for the smallest and youngest of premature infants has continued to improve with technology and medical advances. The 1997-1998 Proposed Guidelines on Hospital Discharge of the High Risk Neonate by the American Academy of Pediatrics (AAP) Committee on Fetus and Newborn (1998) suggested that discharge of premature infants be based on a sustained pattern of growth rather than a specific discharge weight. Infant readiness was further determined to include temperature homeostasis, oral feeding, and mature cardiorespiratory function. The home environment, access to home care, and family acceptance were identified as other areas of readiness that needed to be explored prior to discharge (AAP, 1998). This lead to the discharge of very small infants, some with complex medical care, who may be monitored by specialists and neonatal follow-up clinics but who also present in the primary care provider’s office. Infants at 23 to 25 weeks’ gestation currently are considered at the edge of viability. Many prenatal centers in the United States offer routine resuscitation of infants at 23 weeks’ gestation (Hoekstra, Ferrara, Couser, Payne, & Connett, 2004). Two large studies cited by the AAP 2002-2003 Committee on Fetus and Newborn (2003) estimate neonatal survival at 11% to 30% at 23 weeks’ gestation, 26% to 52% at 24 weeks’ gestation, and 54% to 76% at 25 weeks’ gestation. These rates do not represent postnatal survival. In 2004 Hoekstra and colleagues published survival to discharge rates of 73% for infants at 23 to 26 weeks’ gestation. Moderate to severe disability, which may require prolonged hospitalization or medical care, complicates the survival of 30% to 50% of these infants (AAP, 2003). Infants born at less than 28 weeks’ gestation or less than 1000 g have an November/December 2006
367
Conditions associated with extremely premature infants that alter their primary care include bronchopulmonary dysplasia, retinopathy of prematurity, neurodevelopmental delays, and feeding difficulties.
average neonatal intensive care unit (NICU) stay of 100 days (Perlman, 2002). Conditions associated with extremely premature infants that alter their primary care include bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), neurodevelopmental delays, and feeding difficulties. NEURODEVELOPMENTAL ISSUES Neurodevelopmental morbidities impact the quality of life of premature infants and their families. Medical conditions of prematurity—BPD, intraventricular hemorrhage, ROP, sepsis, feeding difficulties, auditory deficits, and anemia—all have the potential to negatively effect an infant’s neurodevelopment. BPD is the most important clinical condition, in the absence of brain injury, to be associated with neurobehavioral problems in very low birth weight infants (Perlman, 2002). Positive predictors for neurologic outcomes are female sex, cesarean section delivery, normal brain ultrasound findings, and the absence of BPD (Hoekstra et al., 2004). Cognitive and behavioral problems occur similarly with or without neuroimaging abnormalities (Perlman). Thirty percent of infants born at less than 1000 g who have normal head ultrasounds at discharge have cerebral palsy or other severe developmental delay at follow-up (Salhab, Perlman, Silver, & Broyles, 2004). Subnormal head growth at 8 months corrected age also is a strong predictor of poor cognitive function, poor aca368 Volume 20 • Number 6
demic achievement, and behavioral issues at 8 to 9 years of age (Salhab et al.). Hoekstra and colleagues (2004) found a discrepancy between early follow-up evaluations and later performance in infants born 23 to 26 weeks’ gestation, suggesting that these infants are at risk for having social and educational problems later in life. Initial screening with these infants was encouraging; however, assessments later in childhood showed persistence of delays. Of former very low birth weight infants assessed in adolescence, 30% to 50 % will display subnormal academic achievement, 20% to 30% will have attention deficit hyperactive disorder, and 25% to 30% will have psychiatric disorders (Perlman, 2002). Postdischarge social and environmental conditions significantly influence cognitive outcome (Perlman). Health care providers should stress the importance of an involved family in the infant’s care and future development. Family support can be effective regardless of the composition of the family. A supportive and involved family system is crucial to the medically
complex premature infant whose needs may be overwhelming to the caregiver when faced alone. Primary health care providers should encourage families to seek out and participate in available early intervention services and programs through the Individuals with Disabilities Education Act (IDEA), part C. Half of infants with abnormal hearing screens are NICU graduates (Marshall, 2003). Former low birth weight children make up 19% of all children with hearing loss (Davis, Sweeney, Turnage-Carrier, Graves & Rector, 2004). Risk factors for sensory neural hearing loss include a birth weight of less than 1500 g, mechanical ventilation for more than 5 days, hyperbilirubin approaching exchange level, Apgar scores of 0 to 4 at 1 minute and 0 to 6 at 5 minutes, bacterial meningitis, and administration of ototoxic medications while in NICU (Davis et al.; Ritchie, 2002). Congenital diaphragmatic hernia, persistent pulmonary hypertension, and extracorporeal membrane oxygenation all are strong predictors for sensory neural hearing loss (Davis et al.). Identification of hearing deficits and appropriate referral is important in maximizing the infant’s language development. Most intensive care nurseries provide a neonatal follow-up program that may include members of various health specialties, with the combined purpose of facilitating referral to appropriate resources and providing medical follow-up and developmental assessment. Infants determined to be at risk are monitored at regular intervals.
Primary health care providers should encourage families to seek out and participate in available early intervention services and programs through the Individuals with Disabilities Education Act (IDEA), part C. Journal of Pediatric Health Care
RETINOPATHY OF PREMATURITY ROP is a failure of the retinal vessels to grow and develop normally (Early Treatment for Retinopathy of Prematurity Cooperative Group [ETROP], 2005). Untreated, this condition can progress to visual impairment and blindness (ETROP). ROP results in blindness in an estimated 500 infants in the United States, and significant retinal scars occur in approximately 4500 infants per year who are born weighing less than 1500 g (Anderson, Benitz, & Madan, 2004). ROP develops in two phases. Phase I includes the interruption of normal vasculogenesis as a result of the relative hyperoxic extrauterine life, resulting in vascular injury and retinal avascularity (Anderson et al.). Phase II includes abnormal neovascularization in response to the relative hypoxia from the increased demands of the developing retina (Anderson et al.). Vision loss occurs as this recovery phase causes an overgrowth of new vessels in the retina and vitreous cavity (Anderson et al.). Fundal examinations should be performed by an ophthalmologist with expertise in premature infants and their retinal conditions (AAP, 2001). The examinations should classify retinal changes based on the International Classification of Retinopathy of Prematurity (AAP, 2001). Timing of examinations after hospital discharge is based on initial examination findings and gestational age (AAP, 2001). Infants weighing less than 1500 g at birth or who are born at less than 28 weeks’ gestational age and infants weighing between 1500 to 2000 g with a complex medical course should have at least two fundal examinations (AAP, 2001). The first examination should occur between 4 to 6 weeks of chronologic age or between 31 to 33 weeks’ postmenstrual age (AAP, 2001). Follow-up examinations should occur at 1- to 3-week interJournal of Pediatric Health Care
vals, depending on findings, until normal vascularization is complete (AAP, 2001). Treatment consisting of retinal cryotherapy or laser ablation should occur within 72 hours of diagnosis of threshold 1 ROP to avoid retinal detachment (AAP, 2001). With or without ROP, premature infants are at increased risk of vision impairment and should be evaluated by a pediatric ophthalmologist at 6 months and then yearly (Marshall, 2003; Verma, Sridhar, & Spitzer, 2003). RESPIRATORY CONDITIONS AND SUPPORT AFTER DISCHARGE Norway, Rosan, and Porter (1967) described neonatal lung injury and the associated radiographic findings as BPD. This condition and its treatment have undergone some changes during the past 40 years. Antenatal glucocorticoid therapy, advances in mechanical ventilation, and surfactant treatments have decreased the incidence of this severe lung disease (Jobe & Bancalari, 2001). Current working definitions of BPD focus on oxygen use. In infants born at less than 32 weeks’ gestation, BPD is defined as the need for supplemental oxygen at 28 days of life; in infants born at 32 or more weeks’ gestation, it is defined as a supplemental oxygen requirement at 36 weeks’ corrected age (American Thoracic Society, 2003). Surfactant deficiency, pneumonia, sepsis, meconium aspiration, pulmonary hypoplasia, persistent pulmonary hypertension, congenital heart defects, and other congenital anomalies predispose the infant to development of BPD (American Thoracic Society). It has been shown that an inflammatory response develops in these infants that may contribute to further respiratory complications (American Thoracic Society). The National Institute of Child Health and Human Development, the National Heart Lung and Blood Institute, and the Office of Rare
Diseases collaborated to review BPD and make recommendations for future research (Jobe & Bancalari, 2001). The groups encouraged the use of the term BPD rather than chronic lung disease because it differentiates the term from the multiple chronic lung diseases of childhood and adulthood (Jobe & Bancalari). The American Thoracic Society (2003) supports this terminology but cautions that the BPD of today is different than that originally described. The “new” BPD is a picture of uniformly arrested development of alveolar tissue rather than severe cellular proliferation and fibrosis of the past (American Thoracic Society). The American Thoracic Society describes a condition composed of various chronic lung diseases of prematurity, including BPD, which develops into what they define as chronic lung disease of infancy. BPD increases the child’s susceptibility to respiratory infections and bronchospastic conditions. It is a predictor for poor weight gain, developmental delays, and increased use of medical services after initial NICU discharge (Smith et al., 2004). When further challenged by upper or lower respiratory tract symptoms, infants with BPD experience decreased lung volumes, causing ventilation/perfusion mismatches (Halbower & McGrath, 2004). Smith and colleagues (2004) studied 1597 infants at less than 33 weeks’ gestational age from 1995-1999; 15% were diagnosed with BPD. Of the infants with BPD, 49% were readmitted to the hospital during the first year of life, compared with 23% of infants without BPD (Smith et al., 2004). The numbers of admissions, lengths of stay, and consequently the health care costs incurred were statistically different between the two groups (Smith et al., 2004). Using the same study population, Smith and colleagues (2005) further studied the incidence of BPD. They found that while there has been no statistically significant November/December 2006 369
reduction in BPD rates during their study period, there was a significant decline in severe BPD (Smith et al., 2005). The greatest reduction was seen in infants at less than 29 weeks’ gestation at birth, a reduction from 26% to 8% (Smith et al., 2005). Smith and colleagues are hopeful that this reduction in severe BPD will translate to a reduction in nonasthmatic chronic respiratory disease and therefore a reduction in overall health care costs. Home oxygen therapy has proven benefits for increased growth, decreased airway resistance, increased compliance, and decreased sudden infant death syndrome (SIDS) in patients with BPD (Ellsbury, Acarregui, McGuinness, Eastman & Klein, 2004). Its use is supported by the AAP and the American Thoracic Society (American Thoracic Society, 2003; Ellsbury et al., 2004). Supplemental oxygen, aimed at avoiding hypoxemia, reverses pulmonary vasoconstriction, decreases pulmonary airway resistance, improves right ventricular function, and improves oxygen delivery (Kotecha & Allen, 2002). Goals of oxygen therapy, as put forth by the American Thoracic Society, are to promote growth of the child and therefore the developing lungs, to provide adequate exercise tolerance, and to decrease pulmonary hypertension and right ventricular work load. Infants will show improved growth rates with supplemental oxygen, while decreased growth is common in hypoxemic states (Kotecha & Allen). For infants receiving oxygen at home, 100% oxygen is delivered at low flow rates via nasal cannula to maintain the target oxygen saturation (American Thoracic Society, 2003). Cardiopulmonary monitors and pulse oximetry are recommended to allow caregivers to adjust flows accordingly (American Thoracic Society). Differing activity levels and illness may require the adjustment of flow to maintain the desired oxygen saturation. Ox370 Volume 20 • Number 6
ygen desaturation can occur during sleep and feeding, and infants discharged from the NICU who are receiving supplemental oxygen should be monitored appropriately during these periods (Kotecha & Allen, 2002). Controversy surrounding appropriate target oxygen saturation stems from concerns over the relationship between high oxygen concentrations and the development of ROP in premature infants (American Thoracic Society, 2003; Kotecha & Allen, 2002). Ellsbury and colleagues (2004) surveyed neonatologists in 2000 and found that the majority of neonatologists recommended target oxygen saturation levels lower than those supported by existing research and literature. The target oxygen saturation range until normal vascularization is complete, while the risk of ROP is high is 89% to 94% (American Thoracic Society; Kotecha & Allen). The American Thoracic Society advocates maintaining oxygen saturation of greater than 95% for infants beyond the age of oxygen-induced retinopathy. Diuretic therapy has been shown to improve pulmonary function, decrease airway resistance, increase pulmonary compliance, and increase airway conductance (American Thoracic Society, 2003). Three commonly used diuretics are chlorothiazide, which inhibits sodium and chloride reabsorption in the distal tubule; furosemide, which inhibits sodium and chloride reabsorption in the ascending loop of Henle; and spirolactone, which decreases sodium reabsorption and potassium excretion (American Thoracic Society). Electrolytes should be monitored routinely in infants receiving chronic diuretic therapy (American Thoracic Society). Sodium chloride and potassium chloride supplements are used to correct electrolyte deficiencies incurred with diuretic therapy. Inhaled bronchodilators are used to acutely improve lung function and decrease airway resis-
tance in infants whose bronchospasm is interfering with ventilation (American Thoracic Society, 2003). Metered dose inhalers used with spacers are advocated to avoid the potential paradoxical deterioration that can be seen with nebulization of bronchodilators (American Thoracic Society). Corticosteroids can be used to decrease the need for bronchodilators and reduce the chronic asthma-like symptoms associated with BPD. Corticosteroids also should be administered by metered dose inhalers with spacers when feasible (American Thoracic Society). Growth delay, hypertension, osteoporosis, adrenal suppression, cataracts, and oral candidiasis all are potential adverse reactions of corticosteroid use (American Thoracic Society). The infant with BPD requires careful and frequent medical assessment. A neonatologist may be involved in management of oxygen or diuretic therapy in the months after discharge. The complex patient with BPD may require the input of a pediatric pulmonologist as well. FEEDING INFANTS WITH COMPLEX HEALTH PROBLEMS Comorbities of prematurity may make attainment of adequate weight gain more challenging than just getting the child to consume more calories. Infants who fail to demonstrate catch-up growth during the first 2 years are unlikely to achieve it later in childhood (Thureen & Hay, 2005). Current research questions whether this finding is a result of permanent programming or inadequate nutrition early in life (Thureen & Hay). Fluid restriction (manifested as the inability to consume) or restriction enforced as a result of underlying disease states often is the limiting factor for infant growth. One equation for estimating proposed caloric need is listed in the Figure. Serial measurement of head circumference, weight, length, and Journal of Pediatric Health Care
FIGURE. Formula for estimated caloric need to catch-up growth (adapted from the American Thoracic Society, 2003). Estimated caloric need for catch-up growth = (Recommended dietary allowance for CA {kcal/kg} × ideal weight for height) Actual weight
interval growth are crucial for identifying children who are failing to attain appropriate growth. Special attention to coordination of oral feeding, oxygen supplementation to meet increased oxygen consumption from increased metabolic rates, and fluid restriction to avoid pulmonary edema is required when developing a nutritional plan for an infant with BPD (American Thoracic So-
a physiologic condition present in all preterm infants to some degree. Frequent GER episodes may produce esophageal mucosa injury, leading to esophagitis with dysmotility, poor feeding, irritability, and crying (Jadcherla, 2002). Jadcherla described these infants as “scrawny screamers” and describes a cycle of symptoms that can lead to failure to thrive. Surgical intervention may be considered in
Comorbities of prematurity may make attainment of adequate weight gain more challenging than just getting the child to consume more calories. ciety, 2003). BPD increases energy expenditure by as much as 25% over the infant’s basal needs (Thureen & Hay, 2005). For infants with BPD, growth delay is directly related to severity and duration of disease symptoms (Thureen & Hay). Added protein intake, rather than increased lipid or carbohydrate intake, is needed for optimal growth in infants with respiratory disease (Thureen & Hay). In infants with BPD, caloric density of formula may be concentrated to 30 calories per ounce or greater. Input from a nutritionist familiar with the needs of premature infants with complex medical needs is critical to making good recommendations for children and families. Gastroesophageal reflux (GER), described in Part II of this series, is Journal of Pediatric Health Care
medically complex infants for whom routine therapies have failed and further complications of GER are expected (Jadcherla). These infants, particularly those with an inability to protect their airway, may benefit from fundoplication and gastrostomy tube placement (Jadcherla). Ambalavanan and Whyte (2003), while reviewing evidence-based neonatal practice, conclude that respiratory problems attributed to GER may not be caused by GER, and therefore medical treatment of GER may not affect these symptoms. To this extent, treating premature infants with medications may not improve the infant’s respiratory symptoms. Short bowel syndrome is a condition characterized by inadequate functional bowel with resultant
malabsorption and fluid and electrolyte losses (Thureen & Hay, 2005). It often is a sequela of necrotizing enterocolitis, gastroschisis, Hirschprung’s disease, intestinal atresias, or midgut volvulus (Thureen & Hay). Prognosis is dependant largely on the section and amount of intestine remaining. Generally, infants with jejunal resection do better than those with resection of the ileum, and preservation of the ileocecal valve is beneficial (Thureen & Hay). Depending on the severity of the bowel disease, tolerance of enteral feedings in these infants can be a complex process. Elemental formulas designed for infants with feeding intolerance may be used. Infants may be discharged from the NICU with orders for a combination of oral and gavage feedings if tolerance has been obtained but full nipple feeding has not been obtained. Congenital anomalies of the mouth, esophagus, and those associated with hypotonia will predispose the infant to feeding difficulties. Infants with trisomy 21 may be admitted to the NICU from birth or be transferred to the NICU after failing to feed adequately in the nursery. Infants with trisomy 21 may be discharged from the NICU with orders for a combination of oral and gavage feedings. In some instances, the preterm infant may meet discharge criteria in all other parameters except for attainment of oral enteral feedings. The impetus to discharge infants prior to attainment of full oral feedings is reuniting the family in the home environment and suspected cost savings through decreased hospital length of stay. For the short term, the parents may be taught to place a nasogastric feeding tube to administer gavage feedings to the baby. A 2003 Cochrane Review of gavage feedings of premature infants after discharge from the hospital identified limited research regarding cost reduction. However, the few studies November/December 2006 371
Development of a “shadow chart” or patient binder maintained by the family is very helpful in coordination of services.
reviewed appear to support the cost savings (Collins, Makrides, & McPhee, 2004). A recent published study of 52 infants discharged home from a level III NICU with orders for gavage feedings described cost savings findings through decreased length of hospital stays (10 to 12 days shorter) and good parent satisfaction ratings (Strum, 2005). The study group included discharged infants more than 32 weeks’ postconceptual age, with established weight gain of 10 to 20 g per day, with gavage feedings comprising less than 50% of the infant’s intake (Strum). Hospital readmissions did occur in the study group; however, these admissions were not believed to be related to the gavage feedings (i.e., admissions for elective surgery and respiratory illness) (Strum). In more severely affected infants, a gastrostomy tube with or without fundoplication may be surgically placed. Overnight continuous feedings may provide a means of obtaining increased calories while allowing the infant to feed by mouth during the day (American Thoracic Society, 2003). Specialists in gastroenterology and the nutrition in premature infants can and should provide guidance for maximizing the nutritional intake of these at-risk infants. RECOMMENDATIONS Development of a “shadow chart” or patient binder maintained by the family is very helpful in coordination of services. Items to include would be contact names and numbers of medical providers and therapists, a current medication list with doses and times, a procedure 372 Volume 20 • Number 6
list with dates and diagnosis, a recent growth chart, a list of immunizations, and any other information pertinent to the individual child’s condition. For some children, this is a detailed and hefty compilation of information. This information can be brought by the family to specialist visits to facilitate smooth transfer of information. Primary health care providers should review the information with the family regularly to ensure accuracy and understanding of the information. Discharging the medically complex, albeit stable, infant to the home environment is a tremendous benefit to the infant’s development and to the parent-infant dyad (Kotecha & Allen, 2002). The home environment must be adjusted as needed to provide a safe environment. The primary care nurse practitioner and physician are important members of this child’s health care team. Specialists in neonatology, pulmonology, gastroenterology, pediatric surgery, developmental, and other disciplines may participate in the child’s care. Each specialist provides important subspecialty insight into the child’s medical issues. However, the primary health care provider must help with coordination of these services and provide a holistic view into the child’s care.
REFERENCES Ambalavanan, N., & Whyte, R. K. (2003). The mismatch between evidence and practice: Common therapies in search of evidence. Clinics in Perinatology 30, 305-331. American Academy of Pediatrics Committee on Fetus and Newborn. (2003).
Perinatal care at the threshold of viability. Pediatrics, 110, 1024-1027. American Academy of Pediatrics. (2001). Policy statement: Screening examination of premature infants for retinopathy of prematurity: Section on ophthalmology. Pediatrics, 108, 809-811. American Academy of Pediatrics Committee on Fetus and Newborn. (1998). Hospital discharge of the high-risk neonate: Proposed guidelines: Pediatrics, 102, 411-417. American Thoracic Society. (2003). Statement on the care of the child with chronic lung disease of infancy and childhood. American Journal of Respiratory and Critical Care Medicine, 168, 356-396. Anderson, C. G., Benitz, W. E., & Madan, A. (2004). Retinopathy of prematurity and pulse oximetry: A national survey of recent practices. Journal of Perinatology, 24, 164-168. Collins, C. T., Makrides, M., & McPhee, A. J. (2004). Early discharge with home support of gavage feedings for stable preterm infants who have not established full oral feeds. The Cochrane Database of Systematic Reviews. Davis, D. W., Sweeney, J. K., Turnage-Carrier, C. S., Graves, C. D., & Rector, L. (2004). Early intervention beyond the newborn period. In C. Kenner & J. M. McGrath (Eds.), Developmental care of newborns and infants: A guide for health professionals (pp. 373-410). St. Louis: Mosby. Early Treatment for Retinopathy of Prematurity Cooperative Group.(2005). The incidence and course of retinopathy of prematurity: Findings from the Early Treatment for Retinopathy of Prematurity Study. Pediatrics, 116. Retrieved August 1, 2005, from http://www.pediartics.org/cgi/content/full/116/1/15 Ellsbury, D. L., Acarregui, M. J., McGuinness, G. A., Eastman, D. L., & Klein, J. M. (2004). Controversy surrounding the use of home oxygen for premature infants with bronchopulmonary dysplasia. Journal of Perinatology 24, 36-40. Halbower, A. C., & McGrath, S. A. (2004). Home oxygen therapy: The jury is still in session. Journal of Perinatology, 24, 59-61. Hoekstra, R. E., Ferrara, T. B., Couser, R. J., Payne, N. R., & Connett, J. E. (2004). Survival and long-term outcome of extremely premature infants born at 23-26 weeks gestational age at a tertiary center. Pediatrics 113, e1-e6. Jadcherla, S. R. (2002). Recent advances in neonatal gastroenterology: Gastroesophageal reflux in the neonate. Clinics in Perinatology, 29. Retrieved January 27, 2005, from www.mdconsult.com Jobe, A. H., & Bancalari, E. (2001). Bronchopulmonary dysplasia. American
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Journal of Respiratory and Critical Care Medicine, 163, 1723-1729. Kotecha, S., & Allen, J. (2002). Oxygen therapy for infants with chronic lung disease. Archives of Disease in Childhood Fetal and Neonatal Edition, 87, F11-F14. Marshall, D. D. (2003). Review article: Primary care follow-up of the neonatal intensive care unit graduate. Clinics in Family Practice, 5. Retrieved January 27, 2005, from www.mdconsult.com Norway, W. H., Rosan, R. C., & Porter, D. Y. (1967). Pulmonary disease following respiratory therapy of hyaline-membrane disease: Bronchopulmonary dysplasia. New England Journal of Medicine 276, 357-368. Perlman, J. M. (2002). Cognitive and behavioral deficits in premature graduates of intensive care. Clinics in Perinatology,
29. Retrieved January 27, 2005, from www.mdconsult.com Ritchie, S. K. (2002). Primary care of the premature infant discharged from the neonatal intensive care unit. American Journal of Maternal Child Nursing 27, 76-84. Salhab, W. A., Perlman, J. M., Silver, L., & Broyles, R. S. (2004). Necrotizing enterocolitis and neurodevelopmental outcome in extremely low birth weight infants ⬍1000 g. Journal of Perinatology, 24, 534-540. Smith, V. C., Zupancic, J. A. F., McCormick, M. C., Croen, L. A., Greene, J., & Escobar, G. J., et al. (2004). Rehospitalization in the first year of life among infants with bronchopulmonary dysplasia. Journal of Pediatrics, 144, 799-803. Smith, V. C., Zupancic, J. A. F., McCormick, M. C., Croen, L. A., Greene, J., & Esco-
bar, G. J., et al. (2005). Trends in severe bronchopulmonary dysplasia rates between 1994 and 2002. Journal of Pediatrics, 146, 469-473. Strum, L. D. (2005). Implementation and evaluation of a home gavage program for preterm infants. Neonatal Network, 24, 21-25. Thureen, P. J., & Hay, W. W. (2005). Conditions requiring special nutritional management. In R. C. Tsang, R. Uauy, B. Koletzko, & S. H. Zlotikin. Nutrition of the preterm infant: Scientific basis and practical guidelines (2nd ed., pp. 383412). Cincinnati: Digital Education Publishing, Inc. Verma, R. P., Sridhar, S., & Spitzer, A. R. (2003). Continuing care of NICU graduates. Clinical Pediatrics 42, 299-315.
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