Download After Discharge Where Do We Go From Here

Stephanie M. Blake DNP, NNP-BC
Wanda Bradshaw MSN, NNP-BC, PNP
Duke University School of Nursing
This presentation will present the learner with
A broad understanding of complex medical and social
issues r/t the post NICU patient
Information r/t the need for well-child care in addition
to meeting post NICU patient needs
Grades are assigned by comparing the 2014 preterm
birth rate in a state or locality to the March of Dimes
goal of 8.1 percent by 2020
Uses 100 cities in the United States with the greatest
number of births
Preterm birth rate for the United States
9.6%
Grade C
Preterm birth rate for North Carolina
Durham 9.9% Grade C
Raleigh 8.9% Grade B
March of Dimes, 2015
Vermont 7.9, New Hampshire 8.2, Massachusetts 8.6, Rhode Island 8.6, Connecticut
9.2, New Jersey 9.6, Delaware 9.3, Maryland 10.1, DC 9.6
Alaska: 8.5 Hawaii: 10 Puerto Rico: 11.8
Number of U.S. births 2014: 3,988,076
Birth rate: 12.5 per 1,000 population
Percent born low birthweight: 8.0%
Percent born preterm: 9.6%
Percent unmarried: 40.2%
Number of births 2015: 3,978,497
declined less than 1% from 2014 to 2015
Number of U.S. infant deaths: 23,440
Deaths per 100,000 live births: 596.1
Leading causes of infant deaths
Congenital malformations and deformations
Chromosomal abnormalities
Disorders related to short gestation and low
birthweight: not elsewhere classified
* Sudden infant death syndrome
CDC Vital Statistics, 2015
Parents need help preparing for their infants discharge
to home
Discharge planning begins on admission and continues
beyond discharge
Identify medical, psychosocial, environmental and
financial readiness of parents/caregivers to take a
medically fragile infant home
Parent pre-discharge plan checklist completion
Referrals: Special Infant Care Clinic (SICC), Transitions
Program
Discharged home with a mix of complex problems
(chronic lung disease, pulmonary hypertension,
adrenal insufficiency, gastrointestinal reflux,
retinopathy of prematurity, and neurodevelopmental
issues)
Multiple medications
Complicated feeding regimens
Need for special equipment
Limited insurance coverage for home nursing care
Many clinicians lack the training and experience in
caring for these complex infants
Lack of continuity in primary care clinic settings
(residents rotating)
Delayed or ineffective care
Frequent emergency room visits (clinician unfamiliar
with neonatal issues)
Frequent re-hospitalizations to PICU
Poor/fragmented communication with subspecialty
clinicians
Medical issue needs
Nutritional needs
Developmental care needs
Transitional care needs
Incidence of BPD can be as high as 70%
Lower gestational age, and extremely
low birth weight infants at greatest risk.
Outcome:
High mortality with severe BPD
(trach/home vent)
Obstructive/reactive airway disease
long term
At risk for pulmonary hypertension (30%)
Difficulty with feeding, growth and development
Occurs in approximately 30% of infants with BPD
At risk: Extremely low birth weight (ELBW), SGA, BPD,
infection, airway anomalies
Acute management with nitric oxide, O2
Long-term management: treat BPD with pulmonary
vasodilators (Sildenifil, Bosentan), maintain good
nutrition and growth
Outcome:
Mortality as high as 40% in pre-term infants
Majority of cases will resolve within 1 year with good
nutrition, growth and lung function
Failure to produce cortisol due to immature
hypothalamic-pituitary axis (HPA)
Treat with hydrocortisone/Solucortef (for home)
Stress doses for illnesses, surgical procedures
Outcome:
HPA axis functional within 1-4 months
Continue stress dosing for 1 year
Incidence of GER requiring home meds approximately
25% of ELBW infants
At risk: ELBW, BPD, history of NEC
May require fundoplication, medications, formula
modifications to maintain good nutrition and growth
Typically worsens after discharge
peak 4 months, resolution by 6-9 months
ROP occurs when abnormal blood vessels grow and
spread throughout the retina. They can leak, scarring
the retina and pulling it out of position.
Retinal detachment is the main cause of visual
impairment and blindness in ROP.
~90 % of infants with ROP will not need tx
~1,100–1,500 infants annually develop ROP
that is severe enough to require treatment.
~ 400–600 infants each year in the US become
legally blind from ROP.
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Resting caloric expenditure
Intermittent activity
Occasional cold stress
Specific dynamic action
Fecal loss of calories
Growth allowance
50
15
10
8
12
25
120
Adequate calories for growth while hospitalized 120
kcal/kg/d (160 ml/kg/d 24 calorie)
Post discharge caloric needs to gain 15 g/kg/d
Once birth weight (BW) regained, the growth of
preterm infants is targeted to the following goals
* Weight: 15 to 18 g/kg per day
* Length : 1 cm/week
* Head circumference: 0.5 - 0.7 cm/week
Most low BW infants have weights that are below the 10th
percentile at the time of discharge
• Important to plot growth consistently
Up to 36 weeks gestation: Olsen and Bertino charts
are the best growth charts to assess appropriate for
gestational age (AGA), small for gestational age (SGA),
or large for gestational age (LGA)
Between 36 to 50 weeks corrected age: Fenton chart is
the best growth chart to assess longitudinal growth in
preterm infants over this period
After four to eight weeks post-term: World Health
Organization (WHO) growth charts for normal children
can be used
Curves used to track growth of preterm
infants are not ideal
Growth parameters include the infant's weight, length, and
head circumference
Corrections for gestational age should be made for weight
through 24 months of age, for length through 40 months of
age, and for head circumference through 18 months of age
Slow head growth is associated with developmental delay
Want lean body mass (steady weight gain and length)
Achieving appropriate catch up growth by 6-9 months is the
goal
Breast milk is recommended (AAP, WHO, March of Dimes)
Breast milk contains inadequate Kcals and protein for
steady growth in preterm infants
Breast milk contains inadequate calcium and phosphorous
necessary for bone development as well as inadequate
vitamin D and sodium for preterm infants
Breast milk requires fortification
Fortifiers include HMF, HPCL, liquid protein, powdered
formula
Infant also may require iron and vitamin D supplementation
Commercially available enriched formulas compared
with standard formulas are calorically denser (75
kcal/100 mL versus 67 kcal/100 mL) w/ a higher
content of protein, calcium, phosphorus, zinc, and
vitamins A, E, and D
 feeding volume
May not be option in fluid limited conditions (CHF, BPD)
Carbohydrate sources
Rice cereal (100 cals/oz)
SolCarb powder (3.7 cal/gm) (Solace)
Maltodextrin
Karo syrup (4 cal/mL)
Powdered milk (27 cals/tbsp)
FAT SOURCES
MCT oil (7.6 cals/mL)
Coconut/palm kernel oils
Microlipid (4.5 cal/mL)
50% fat emulsion, is made with safflower oil (Nestle)
Vegetable oil (9 cal/mL)
COMBINED SOURCES
Duocal (42 cals/tbsp)
CHO/fat high calorie, protein-free supplement (Nutricia North America)
SHS International (subsidiary of Nutricia)
Special diets for metabolic problems: cow milk allergy, metabolic disorders,
pediatric epilepsy, Crohn’s, hepatic and renal issues.
51% CHO 49% fat (MCT and LCT)
Human milk fortifier (HMF) (Abbott) 2 cals/pkt
Breast milk only
30 ml + 1 packet HMF = 22 calories per ounce
CHO, PRO, minerals, vitamins
Hydrolyzed protein concentrated liquid
(HPCL) (Abbot) 7 cals/pkt
Breast milk only
30 ml + 1 packet HPCL = 29 calories per ounce
CHO, PRO, minerals, vitamins
Liquid protein (Abbott) (4 cals/6 ml)
Water and hydrolyzed casein
Breast milk or formula
100% human donor milk product
24, 26, or 28 cal/oz
Fortified (essential minerals), pasteurized
Screened:
Donor: HIV 1 & 2, HTLV I & II, HBV, HCV, syphilis
Milk: amphetamine, methamphetamine, opiates,
benzodiazepine, cocaine, marijuana (THC), nicotine,
oxycodone, oxymorphone and principle metabolites
100 ml bottles
$$$$$
Less incidence of
necrotizing enterocolitis
late onset sepsis
Better neurodevelopmental outcomes
Less expensive than formula
Less likely to develop “metabolic syndrome”
Aggressive fortification of breastmilk
Supplement with transitional formulas (mix to 22 to 27
kcal/oz)
Provide higher calorie transitional formula (up to 30
kcal/oz)
Maximize feeding efficiency
Minimize impact of medical issues (BPD, GER, etc.)
G-Tube: for non-oral or partial oral feeders
Home NG: for partial oral feeders
Adjust feeding volumes regularly
Require frequent weight checks
No reason for failure to thrive
Continue to work on oral skills
Continue to adjust volume of feeds for the 1st six
months
Catch up growth: On Mondays increase q3h bolus
feeds by 5 ml/feed and 2 ml/hr for continuous night
feeds
Growth maintenance: Every other Monday increase
q3h bolus feeds by 5 ml/feed and 2 ml/hr for
continuous night feeds
Remove tube once stable growth has been established
and can take medications orally
Remove G-Tube after 1 month of non-use
Behavioral problems
Poor academic achievements
Poor social development in childhood
ELBW
Motor
Language
Cognitive
Behavioral and emotional
NICU environment developmental risk factor secondary to
multiple painful, distressful and uncomfortable stimuli
Studies have shown parents feel alienated due to
being separated from their infants; feeling a sense of
depression, powerlessness and despair.
Parents experience high levels of stress and often lack
the knowledge of how to parent and interact with
their infant.
Promotion of parental participation will help parents
prepare for taking home a medically complex infant.
Promote kangaroo care
Individual developmental plans
Parents considered a part of the care team and not visitors
Vision
Strabismus (cross eyed) higher in severe ROP
Refractive error: not an eye disease or eye health
problem; it's a problem with how the eye focuses light
Myopia (nearsightedness) occurs 20% in preterm
infants; 70% in infants with ROP, astigmatism (blurred
vision) 50% of infants
Hearing
ELBW infants: ↑ risk of late onset hearing loss
Recheck hearing ~1 yo or sooner if not sound responsive
Autism Spectrum Disorder
Complex disorders of brain development
Sensory processing disorder
Characterized, in varying degrees, by difficulties in
social interaction, verbal and nonverbal
communication and repetitive behaviors
Risk increases 2 fold if born preterm (10-25% of cases)
Cerebral palsy (CP)
One of the most common disorders of childhood
Periventricular white brain matter injury
~500,000 children in the United States have CP
Occurrence
Preterm infants (40% cases); Term infants (60% cases)
The more premature the greater the risk
Outcome: affects muscle tone, movement, motor skills
Most common: spastic diplegia
Start toe-walking, progress to non-ambulatory
Can evolve over period of 2 years
Seizures, speech, communication problems, and
intellectual disabilities are common
Provide medical follow-up during the “transitional”
period between hospitalization and care by general
primary care provider (PCP)
Chronic medical problem stability provided
Decrease unnecessary emergency room visits
Growth and nutrition established
Decrease length of stay
Improve medical and developmental outcomes
Parents more comfortable and confident in ability to
care for infant
SICC MD/NP familiar with infants medical issues
manage care
Available by pager 24/7 to parents
Avoid need for multiple subspecialty visits
Only SICC/PCP visits in the first few months
Clinic availability 5 days a week
Provide comprehensive care and improve
communication with primary care providers and
subspecialists
Less than or equal to 26 weeks
gestation (ELGAN)
Less than or equal to 1000 gm birth
weight (ELBW)
Technology dependence resultant
from, but not limited to:
Chronic lung disease
Surgical necrotizing enterocolitis
ECMO for severe respiratory
failure
Congenital diaphragmatic hernia
with PPHN
Congenital heart disease
Hypoxic Ischemic
Encephalopathy
Severe IVH, PVL, and/or neonatal
stroke
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Tracheostomy
Home ventilator
Supplemental oxygen
Gastrostomy, gastrojejunostomy, or NG tube
Ostomy
VP shunt
Prescribed monitor (apnea, pulse
oximeter)
Conditions requiring treatment
with multiple medications:
Chronic lung disease
GERD
Seizures
Endocrine disorders
Complex congenital heart
disease (discharged from
Duke ICN)
Coordinated care for complex infants
Receive education about complex medical issues and
treatment strategies
Continue to provide well child care
Transition of care into general primary care when
medically stable
William Malcolm, MD
Associate Professor of Pediatrics
Director, Intermediate Level Nurseries
Department of Pediatrics/Neonatology
Duke University Medical Center