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OBJECTIVES
▪Identify, understand and manage the ongoing medical needs of the NICU graduate PRIMARY CARE OF Recognize the key role of the PCP in providing optimal continuity of treatment by: coordinating transition of care from the NICU THE PRETERM providing direct medical care and facilitating ongoing care of the infant by INFANT subspecialists collaborating with other health professionals in the management of chronic health problems Jillian Waterbury, DNP, RN, MSN, CPNP ▪Review of common screening tests/tools used in the NICU graduate population ▪Growth and development challenges and concerns ▪Pharmacotherapy in the NICU graduate
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PRETERM INFANTS
Worldwide, over 15 million Preterm birth (PTB) is defined as Many PTB infants will have a babies are born preterm each being born before 37 week’s host of medical, social and year, which may represent over gestation developmental challenges 10% of all births "The flower that blooms in adversity is the most rare and beautiful of all." ~The Emperor (Mulan) INTRODUCTION
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Born 37 weeks or earlier 1 in 8 children are born preterm 6% born under 28 weeks
Preterm children are at greater risk for excess hospitalizations, 1/8 births or 450,000/year outpatient visits, and societal costs after NICU discharge INTRODUCTION FACTS Cost is more than $26 billion nationwide Improved delivery of care and health promotion from the community setting, particularly from the patient-centered medical home, may result Average NICU stay in Texas ~ $250,000-500,000 in improved growth, health, and development, with accompanying reduction of post-NICU discharge costs and encounters Infants will remain in the NICU until physiologic stability ~36-37 weeks and/or 2000g Health care delivery for NICU graduates is often fragmented with little guidance medical management beyond tertiary care follow up Average # of outpatient visits in the first year = 20
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HIGHEST NUMBER OF PRETERM BIRTHS PER YEAR India: 3,519,100 Bangladesh: 424,100 China: 1,172,300 Philippines: 348,900 Nigeria: 773,600 Democratic Republic of the Pakistan: 748,100 Congo: 341,400 Indonesia: 675,700 Brazil: 279,300 USA: 517,400
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PREMATURITY IN THE US
IN THE UNITED STATES (US) ADVANCEMENTS IN TEXAS RECEIVED A GRADE "D" LOCALLY OVER 10,000 BABIES MOST OF MY PATIENTS ARE OVER 500,000 PTB ARE BORN TECHNOLOGY ALLOW FROM THE MARCH OF DIMES ARE BORN YEARLY IN THE SPANISH SPEAKING, FROM A EACH YEAR GREATER CHANCES OF FOR A PRETERM BIRTH RATE LOCAL URBAN HOSPITAL, LOW SOCIOECONOMIC LEVEL SURVIVING A PRETERM BIRTH OVER 10.4%, RANKING ONE WITH AT LEAST SEVEN OF AND WITH MULTIPLE BARRIERS HOWEVER THIS IMPOSES AN OF THE STATES WITH THE WHOM ARE PREMATURE. TO CARE INCREASED BURDEN ON THE HIGHER PRETERM BIRTH RATES. HEALTHCARE SYSTEM AND FAMILIES
US STATISTICS
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LOCAL IMPACT
Local pediatricians or pediatric Advanced Practice Providers (APPs) must manage
various aspects of the ex-premature infant including family support, nutritional Discharge Planning Need routine health supervision in assistance, well-child care including anticipatory guidance not to mention acute a primary medical home illnesses (Ritchie, 2002) TRANSITION FROM HOSPITAL Pediatric primary care offers an opportunity to inspire positive parenting behaviors and the ideal development of PTB TO HOME
Should provide first line care that Many PCPs report their practices optimizes growth and are not designed to optimally development manage the spectrum of care needs of children with medical APPs caring for preterm infants post neonatal intensive care (NICU) stay, in a complexity primary care setting, can more readily detect those at risk (Sullivan et al, 2011)
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ROLE OF THE PRIMARY CARE PROVIDER THRIVE CLINIC
•Currently follow more than 1200 infants with high social needs and a spectrum of medical problems and needs. •Growing number of patients due to increased survivability and increased referral base (CMC NICU, Clements/University ICU, TDH, CMC CVICU, Able to Understand of Co Manage Dual Role Knowledge of other NICUs off-campus), including over 300 new patients per year. Communicate morbidities Chronic Conditions •Education and training by APP staff include PNP primary care students, NNP students, FNP students and PA students; assist in training of medical students, pediatric residents, and neonatal-perinatal fellows. •APP projects include a student “expectation sheet” to ensure that APP students get similar exposure during their time in THRIVE; development of a 40-year manual of take home points for management of the NICU/premature infants in primary care; and the ongoing collection of Recognition of Acute Developmental DME Social/Psychological data to document the things that mothers do to protect their baby as a way Illness Surveillance to better understand culturally sensitive care •Research: key role in achieving highest 2 yo follow-up rates for primary care patients involved in multiple studies for the NIH/NICHD Neonatal Research Network (100% for 6 out of 8 last years; among 18 participating sites across US, ranked #1 for 7 of last 8 years) •Multidisciplinary team in THRIVE includes clinical dietitian, developmental specialist, child psychology, social work, research staff and dedicated Transition of Care pediatrician/Medical Director
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NICU Course HYPOTHYROIDISM Neonatal Screening
Immunization Record Definition: Can result from defects in thyroid development, thyroid hormone production (primary hypothyroidism), pituitary secretion (secondary hypothyroidism), thyroid hormone Current Medications actions
Vital Signs Primary-marked elevation of TSH and low free T4 FIRST VISIT Secondary or central-low normal or low TSH and low free T4 Medical Problems Dosing: •Past •Present 0-6 months-8-10 mcg/kg/dose or 25 mcg
Growth and Development 6-12 months-6-8 mcg/kg/dose or 25-50 mcg 1-5 years-5-6 mcg/kg/dose or 75-100 mcg Social Issues 6-12 years-4-5 mcg/kg/dose or 100-125 mcg Anticipatory Guidance >12 years-2-3 mcg/kg/dose or 150 mcg or greater
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WIDE WRISTS/FRONTAL TREATMENT Calcium Carbonate 500mg/5ml (1,250mg/5ml) BOSSING oral suspension Given daily, BID, TID or every 4 hours No clear definition PO/NGT/GT 15 mg/kg Also called osteopenia of prematurity, metabolic bone disease of prematurity or rickets of prematurity 30 mg/kg 60 mg/kg The names have their own characteristics: (Each 5 ml contains 1,250 of calcium carbonate and 500 mg of Metabolic bone = laboratory findings elemental calcium) Rickets = radiological Potassium Phosphate (3mmol/ml) oral solution So what does this mean? Dosing has not been established under 4 years of age (consult RD) Presence of or radiological rickets or fractures that determines the clinical symptomatology (3 mmol of potassium phosphate supplies 4.4 mEq of potassium) High alkaline phosphatase >200 are concerning and may require clinical intervention
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EYE ROP “You’ll miss the best things if you keep Biphasic disease consisting of initial vessel growth cessation and loss your eyes shut. followed by a second phase of proliferation Sometimes the Normal vascularization is suppressed after premature birth, higher questions are levels of oxygen than in utero complicated and the Abnormal vascular shunting and neovascularization may occur as the answers are simple.” retina reacts to subsequent hypoxia Pathological process may stop and spontaneously regress without ~ Dr. Seuss treatment or leave to progressive retinal traction and detachment, resulting in vision loss in severe cases
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ROP ROP MEDICAL MANAGEMENT
Leading cause of Vascular endothelial growth factor preventable childhood (VEGF) is one of the major blindness angiogenic factors responsible for ROP Affects ~14,000- 16,000 premature Avastin (Bevacizumab) is a VEGF infants in the US inhibitor that has been used off label after laser photocoagulation 1,100 -1,500 will develop severe ROP Early reports show effective in and 400-600 will be suppressing neovascularization but blind concerns for systemic safety and late onset ocular complications
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Definition-postnatal failure of ductal closure resulting in a patient ductus arteriosus (PDA) Incidence-present in 30% of premature infants Factors determine postnatal DA closure Risk Factors CARDIOVASCULAR PDA ▪Prematurity ▪Genetics "Listen with your heart, you ▪RDS will understand." ▪Asphyxia ~Grandmother Willow (Pocahontas) ▪High altitude ▪Fluid administration
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PDA Almost always detected due to routine monitoring
Murmur ▪ Often heard over pericardium ▪ Machine like ▪ Widened pulse pressure Defined as systolic/diastolic blood pressure above ▪ May lead to CHF th Tachypnea >95 percentile for gestational age HYPERTENSION Tachycardia Hepatomegaly Treatment ▪ Indomethicin ▪ Linked to NEC Should be measured Ligation Appropriate-sized On three separate Attempt to minimize ▪ Open thoracotomy Infant is calm cuff occasions stress, pain and discomfort ▪ VAT-video assisted thoracotomy
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RESPIRATORY Calcium channel blocker “It's no use going back to yesterday, because I was a HYPERTENSION different person MANAGEMENT ACE inhibitor then”. ~Alice in Wonderland B-blocking agents
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BPD ▪Respiratory insufficiency: need for supplemental oxygen, CPAP or HNFC ▪Pulmonary edema: increased microvascular pressure causes fluid filtration into the perivascular interstitium ▪Tachypnea Definition: Incidence: Pathophysiology: Risk Factors: PRESENTATION ▪Increased work of breathing Oxygen for at least 28 30% of infants with ELBW with an arrest in Prematurity ▪Variability days after birth birthweight <1,000 g lung development with Sepsis Oxygen requirement 20% of infants with fewer and larger alveoli ▪ Mild-managed by medications, on room air and decreased Prolonged mechanical continuing past 36 birthweight <1,500 g ventilation ▪ Moderate-oxygen requirement up to 30% weeks’ PMA pulmonary microvascular development PDA CXR with haziness due to ▪ Severe-oxygen requirement >30%, ventilator/CPAP dependent pulmonary Oxygen or pulmonary hypertension edema/atelectasis Genetic factor Poor nutrition
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Loop diuretics are the most potent of the available diuretics and work by blocking the Na+ -K+ -2Cl- transporter in the ascending loop of Henle, inhibiting MANAGEMENT reabsorption of these ions
Thiazide diuretics are sulfonamide derivatives which ▪ Mechanical ventilation (severe BPD) differ in their duration of action and work by inhibiting ▪ Oxygen Na+ -Cl- transport in the distal convoluted tubule ▪ Nitric oxide TYPES OF ▪ Medications Metolazone has a mechanism of action similar to the ▪ Diuretics thiazides and acts in both the proximal and distal ▪ Corticosteroids DIURETICS convoluted tubule ▪ Inhaled bronchodilators ▪ Inhaled steroids ▪ Vitamin A Spironolactone is the most widely used potassium- sparing diuretic in pediatrics
• inhibitor of the action of aldosterone • takes ~3days before a maximal effect • is not considered a potent diuretic by itself
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DIURETICS IN BPD DIURETIC DOSING
▪Diuretics are used for a wide variety of conditions in infancy including Medication Age Route Dose Frequency bronchopulmonary dysplasia (BPD) Furosemide Neonates PO 1-4 mg/kg/dose 1-2 times daily ▪BPD is often associated with underlying pulmonary edema and clinical Children PO/IV/IM 1-2 mg/kg/dose Q 6-12 hours improvement has been documented with diuretic use Bumetanide <6 months PO/IV/IM Dose not established ▪Diuretics also play a major role in the management of congestive heart >6 months PO/IV/IM 0.015 mg/kg/dose QD or QOD failure (CHF) HTCZ <6 months PO 2-3.3 mg/kg/dose BID ▪Other indications may include hypertension due to the presence of cardiac or >6 months PO 2 mg/kg/day BID renal dysfunction Chlorthiazide <6 months PO 20-40 mg/kg/day BID >6 months PO 20 mg/kg/day BID ▪Hypertension in children is often resistant to therapy Metolazone Children PO 0.2-0.4 mg/kg/day Q 12-24 hours
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Potent anti-inflammatory agents ▪The early corticosteroids trials designed to prevent BPD used a “standard” initial dose of 0.5 mg/kg Clear rationale for the use of an anti-inflammatory to treat BPD dexamethasone that was then slowly tapered over 42 days (referred to as the 42-day treatment)
More than 50% of infants at risk for BPD have inflamed lungs ▪More recent trials have used lower initial doses of 0.2 mg/kg or 0.15 mg/kg or 0.1 mg/kg dexamethasone with weaning schedules over 7 to 10 days and with apparently Oxygen exposure, and mechanical ventilation contribute to STEROID good acute effects on lung function CORTICOSTEROIDS inflammatory response DOSING ▪In the US, betamethasone is not available, but it has been used and dosed similarly to dexamethasone elsewhere in Multiple pro-inflammatory mediators and inflammatory cells are in airway the world ▪These two synthetic corticosteroids are 25 times more potent Corticosteroids decrease edema as part of the anti-inflammatory effect, which may contribute to improved gas exchange and lung than hydrocortisone, but they are not equivalent mechanics ▪Prednisolone also has been used, but not evaluated in randomized trials In VLBW infants, corticosteroid treatments will increase blood pressure and treat adrenal insufficiency
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BRONCHODILATORS INHALED BRONCHODILATORS
▪Bronchodilators relieve asthma symptoms by Inhaled albuterol is a first-line relaxing the muscle bands that tighten around the airways treatment of acute asthma ▪This action rapidly opens the airways, letting more air come in and out of the lungs exacerbations ▪As a result, breathing improves Albuterol is recommended for exacerbations in children 6 to 12 years • 2 puffs every 4 to 6 hours as needed for bronchospasm ▪Bronchodilators also help clear mucus from the lungs • In some patients, 1 puff every 4 hours may be enough • FDA-approved labeling recommends to not exceed 12 puffs/day • For acute asthma exacerbations, the National Asthma Education and Prevention Program (NAEPP) Expert Panel ▪As the airways open, the mucus moves more freely recommends 4 to 8 puffs every 20 minutes for 3 doses, then 4 to 8 puffs every 1 to 4 hours as needed and can be coughed out more easily • The Global Initiative for Asthma (GINA) guidelines recommend up to 4 to 10 puffs administered with a spacer every 20 minutes for the first hour for mild to moderate exacerbations. After the first hour, the dose required may vary from 4 to 10 puffs every 3 to 4 hours up to 6 to 10 puffs every 1 to 2 hours, or more often
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BRONCHODILATORS BRONCHIOLITIS
Short Acting-beta agonist Long Acting-beta 2 agonist ▪Bronchiolitis is a common lung infection in young children and infants ▪Albuterol (Proventil® HFA, Ventolin® ▪Pulmicort ▪It causes inflammation and congestion in the small airways (bronchioles) of the HFA, ProAir®HFA, Accuneb®) ▪Budesonide lung ▪ 1.25 mg ▪ 2.5 mg ▪Salmetrol ▪Bronchiolitis is almost always caused by a virus ▪ 5 mg ▪Formoterol ▪Typically, the peak time for bronchiolitis is during the winter months ▪Levalbuterol (Xoponex® HFA, Xoponex® nebulizer solution) ▪Combo ▪ salmeterol and fluticasone (Advair®) ▪ 0.31 mg ▪ formoterol and mometasone (Dulera®) ▪ 0.63 mg No Nebs! ▪ formoterol and budesonide (Symbicort®)
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SYNAGIS SYNAGIS REPORTING MAP
Synagis (palivizumab) is proven and One of the qualifying: medically necessary to prevent serious respiratory syncytial virus disease (RSV) in ▪Prematurity Infants high risk infants and young children when ▪ born before 29 weeks, 0 day’s gestations who are < 12 ALL of the following are met: months of age at the start of RSV ▪Administered during RSV season as defined by ▪CHD Centers for Disease and Prevention (CDC) surveillance reports ▪CLD (http://www.cdc.gov/surveillance/nrevss/rsv/) ▪Congenital abnormalities of the airway or AND neuromuscular disease ▪Monthly doses of Synagis does not exceed 15 ▪Immunocompromised children younger than 24 mg/kg per dose months of age AND ▪Cystic fibrosis (CF) with other qualifying indications ▪Monthly dose of Synagis does not exceed 5 doses per single RSV “season”
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FTT Outdated term Actually it means growth rate less than what should be achieved Should be called Extrauterine Growth Restriction (EUGR) Imbalance between energy intake and energy requirements Risk Factors ELBW IUGR GASTROINTESTINAL BPD NEC Chromosome abnormality “If you are what you eat Inborn error of metabolism then you might as well eat something good”. Consult RD ~Ratatouille
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NEC Inflammatory disease of the intestine 1/1,000 live births Higher in preterm infants, up to 10 % Pathophysiology not completely understood but likely multifactorial Immaturity of immune system Ischemia Hypoxia of intestine Feeding regimes Will present with abdominal distention, intestinal ileus, high gastric residuals, bloody stools, pneumastosis, thrombocytopenia, acidosis….Mom’s gestalt
Surgical Intervention
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Most babies spit at least once daily in the first few months GER V. GERD of life Gastroesophageal reflux (GER) Half of all parents report once per day during first 3 occurs when stomach contents rise into months of life the esophagus independent of regurgitation or vomiting ▪ Minor condition that affects most people Peak prevalence at 4 months of age at one time or another INCIDENCE Gastroesophageal reflux disease (GERD) is a more serious and 67% of those reporting regurgitation state rapid decline by 6 months of age persistent form of GER, irritating the esophagus Reflux medications are the most commonly prescribed with • If left untreated, it can result in serious 25% of NICU infants being discharged on home on health complications antireflux meds
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PATHOPHYSIOLOGY MANAGEMENT ▪Swallowing triggers antegrade esophageal peristalsis and lower esophageal ▪Small frequent feeds sphincter (LES) relaxation ▪Speed of peristalsis is slower in preterm infants ▪Positioning ▪Left side lying has been shown to reduce postprandial reflux episodes and ▪Incomplete or asynchoonous waves are more common in preterm infants right side lying improves gastric emptying ▪LES requires good tone ▪Thickening ▪Infants ingest more volume per kg of weight ▪Non milk-based protein ▪Gastric emptying is inversely related to age ▪Gastric emptying is faster with human milk v formula ▪Thickening delays gastric emptying
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MEDICAL MANAGEMENT PPI
Adverse Affect Comment Acid Reducers (Zantac, Nexium) Dosage (histamine-2 receptor blockers and proton 1-4 mg/kg/day BID C Diff Overgrowth due to low pump inhibitors) Recommend starting at 2 mg/kg/day pH ▪Decrease gastric acidity Allow 3-7 days to see full Pneumonia Altered pH, allows for effectiveness opportunistic infection ▪Theoretically decrease discomfort ▪Supplied Fractures Reduced calcium ▪Acid blockade has been associated with absorption increased late-onset sepsis and NEC ▪15mg/ml OR 75 mg/5 ml ▪75 mg/tab Rebound Exacerbated symptoms ▪Cimetidine use with VLBW infants has been when DC’d ▪150 mg/tab associated with increased death or IVH Iron Deficiency Anemia Reduced iron ▪300 mg/tab ▪Infants with apnea and bradycardia on absorption metoclopramide was associated with Cardiac Events Decreased effectiveness increased bradycardia of cardiac medications
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PPI DOSING ORAL AVERSION
Sensory based Development can be subtle Can occur at anytime May manifest in several ways Aversion to new feeding method Resistance to specific foods Change in texture or consistency
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•Meningitis •Viral •OM Infection CONSTIPATION •UTI
•Migraine Common concern •IVH Treatment CNS •Seizure Confused with dyschezia ▪Tummy time At least 10 minutes of straining and •Abuse ▪Juice/water •Corneal Abrasion crying in infant under 6 months of Trauma •Hair Tourniquet COLIC age with successful passage of stool ▪ ½ to 1 ounce of water daily prn ▪MiraLAX •GER/GERD Rule of 7s •Constipation ¼, ½ to 1 cap daily prn Acute •Rectal fissure GI/GU •Incarcerated Hernia Often has not clear etiology ▪Stool softener
•Milk Allergy Colace •CNS Diet may contribute •Hydrocephalus Pedialax Chronic •Tethered cord Concentrated formula Dysphagia
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QUESTION INGUINAL HERNIAS AND HYDROCELE
Which is the MOST A. Concentrate calories of Abdominal contents protrude through appropriate approach to EBM/Formula inguinal ring help an infant with poor B. Change size of nipple to Occur in 4% of all newborns and up weight gain? improve flow to 30% of preterm infants In boys, failure of the processus C. Consult to ST/VSS vaginalis to obliterate during D. Increase diuretic dose testicular descent E. Initiate oxygen therapy Diagnosed on history of presentation Present with intermittent swelling in the groin, scrotum or labia that can be reduced into the abdominal cavity
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ABDOMINAL HERNIA NEURO
Congenital defect of abdominal wall "The things that make me Common, more so in premature infants different are the things that make me ME." Closure is dependent on the size of the opening itself, not the proboscis of skin ~Piglet Incidence is higher in African Americans (Winnie the Pooh) Most will close spontaneously If persists, may consult surgery between age 2-5 Sooner if large protrusion
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Occurs in approximately 35-40% of infants born < 35 week’s gestation IVH
Usually within first 6 hours of life Grade I Hemorrhage confined to the germinal matrix Symptoms range from silent to cataclysmic Grade II IVH Is a hemorrhage within the germinal matrix Etiology not completely understood and intraventricular regions Grade III Germinal matrix lies below ventricular lining which is site of neuronal and glial proliferation (very cellular and gives rise to Ventricular dilation fragile vasculature) Grade IV
Poor coagulation Ventricular enlargement with parenchymal Added stressors include Changes in pressure involvement extending beyond the germinal matrix
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Neonatal encephalopathy in term infants who have ▪Evidence of severe acidosis or need for resuscitation Types ▪Direct evidence of abnormal neurobehavioral state such as seizures, changes in consciousness, tone, posture or reflexes ▪Imaging Spastic Risk factors ▪Maternal hypertension, shock, arrest, anaphylaxis, seizure ▪Uterine rupture, placental abruption, infarction, placenta HIE previa Dyskinetic CP ▪Umbilical cord prolapse, abnormal vessels, tight nuchal cord ▪NRFS, meconium, prolonged labor, forceps Ataxic ▪Fetal hemorrhage, hemolytic disease, infant arrythmia, twin to twin transfusion 0.5-1/1,000 live births Mixed
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Ophthalmology SOCIAL/EMOTIONAL
Audio "You're braver than you believe, and stronger than you seem, NEURO and smarter than you think." Developmental survey Winnie the Pooh (Pooh's Most MANAGEMENT Grand Adventure) • Bayley • Psychology • PPCD • Autism referral
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Although there have been many advances in medical care of PTB, there still are threats to maternal Financial and infant health in the United States Poor literacy limitations
Parents who experience the birth of a premature undergo extreme stress while their infant is in the neonatal intensive care (NICU). Lack of Transportation support difficulties Caring for preterm babies can be an overwhelming experience for parents, therefore an adequate SOCIAL and constructive education using evidenced-based strategies is imperative to empower them and increase their confidence as well as their ability to bond and attach to their baby CONCERNS Substance Mental illness abuse
BONDING AND ATTACHMENT Status
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CONCLUSION The willingness to change the current practice, consider increased referrals both appear to be related to increased Premature infants require varying degrees of awareness, improved knowledge base and broader scope newborn intensive care and have a wide range of of practice, which highlights the importance of incorporating physical and developmental outcomes evidence-based education into clinical practice. Subsequent ambulatory care for these infants is often complex INTERVENTION The transition from neonatal intensive care unit (NICU) to home can be stressful for families Early interventions for poor bonding and attachment Infants born prematurely often have unpredictable disorders impact the infant's developmental outcomes such as emotional responses, intelligence and overall well-being behavior and present with cues that are vague and unclear to caregivers The pediatric nurse practitioner (PNP) responsible for primary care has a unique opportunity to influence the lives of these special babies and their families
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