Peninsula Regional Medical Center Neonatal Intensive Care Unit Staff. Dear New Parents,

Transcription

1 Parent Handbook

2 2009

3 Dear New Parents, Congratulations on the birth of your baby! Peninsula Regional Medical Center offers you this handbook to assist you during your baby s hospitalization in the Neonatal Intensive Care Unit (NICU). The arrival of a baby can be both exciting and stressful. The events surrounding your infant s birth have made it necessary for him/her to be admitted to our NICU. The unit is located on the 4th floor of the east tower of the Medical Center. It is a 10-bed unit where babies born prematurely or who are ill receive special and intensive care. The NICU team is here to assist you during your newborn s hospital stay. Our team of health care professionals will take excellent care of your baby and help you as parents to care for and bond with your child. We encourage you to ask questions regarding your baby s care and to participate in his/her care as much as you would like. You are an important part of our team. Communication between the health care team and the family is important. We care for our patients and their families with respect, compassion and exceptional care. On behalf of our entire team, we wish your family a very healthy and happy future. Best Wishes, Peninsula Regional Medical Center Neonatal Intensive Care Unit Staff 1

4 Mission: Through a partnership of physicians, leadership, staff and community, we will provide improved quality of life for all neonates by providing safe, evidence-based care. Vision: We will provide compassionate, family-centered care supported by current evidence-based practice and multi-disciplinary teamwork. The Arrival Little fingers curl up tight to make a tiny fist, As fairy lips purse out as if to make a gentle kiss... Eyes, wide as a kitten s, and little button nose, You look like someone s angel down to your pudgy toes... Although you are so wrinkled and your face is still so pale, And the only song you seem to know sounds like shrilling wail, When you are here before me, finally, I feel complete. I ve waited so long, sweetheart... at last, we finally meet. Source: Andrea B 2

5 A Preemie s Bill of Rights by Read McCarty, The Wee Make a Difference Foundation I deserve... your recognition that I may be completing many months of my physical and neurological development outside the protection of my mother s womb. Even as you give me the life sustaining care I so badly need, as much as possible I deserve to have the boundaries, quiet, warmth, gentle stimulation, dim lighting and fetal positioning I would have in my mother s womb. I deserve... to be understood and treated as the individual I am. I deserve to have my language of cures and signals understood by you, my caregiver. My grimaces, hand stretches, frowns and hiccups are as meaningful as any words, but delivered in the only language I know. I deserve... periods of uninterrupted quiet so I can use my energy to grow and not hopelessly trying to overcome excess light, noise and over stimulation. I deserve... the warmth, tenderness and comfort of being held by my parents as soon as my medical condition allows. I deserve... the positive energy of love... your kind thoughts and words as you care for me.. my father s soft touch... my mother s gentle words. I deserve these things because in your heart you know their worth even though their absolute clinical value will never be proven. I deserve... your understanding that what is normal and routine for you, as my caregiver, is abnormal and frightening for my mom and dad. So please answer kindly no matter how many times they ask the same question. They deserve your support and the support of other families as they go through the roller coaster experience of the NICU. I deserve... your recognition that my parents are an integral part of my caregiving team and should be allowed and encouraged to the best of their ability to help care for me during my stay in your hospital. I deserve... your understanding that part of your job is to help my family and me bond as we learn to trust each other as they prepare to bring me home. I deserve... continuity of care from the NICU to my home... from my neonatologist to my primary care giver... so together my family and I can reach our full potential. You deserve my thanks and recognition. I am here because of YOU! The Wee Make a Difference Foundation was formed by Read McCarty, founder and retired CEO of Children s Medical Ventures, Inc., The foundation is dedicated to making the practice of developmentally supportive, family centered care the standard of care in the SCN. 3

6 Family Care Time 1. Our NICU parents are essential members of the health care team. We encourage parents to be with their babies as much as possible, however rounds are held in the unit every day from 9:30-11:00 a.m. Shift change for our nursing staff is 6:30-8:00 a.m. and 6:30-8:00 p.m. We request that parents and families do not stop by or call the unit during these times. We appreciate you allowing staff this uninterrupted time to discuss the plan of care for your baby and ensure privacy during report. 2. Because of the limited space in the NICU, only two people can be at the baby s bedside at one time, including the parent. Parents should keep their numbered ID bands with them when visiting their baby. 3. Grandparents may come and see the baby without the parents, as decided on the visitation sheet filled out by the parents. Grandparents may be requested to show identification to the baby s nurse. 4. Before entering the NICU, we ask that all family and friends wash their hands. Please do not enter the NICU if you are ill. For the protection of all the babies in the NICU, anyone with a fever, cough or cold symptoms may be asked to wait in the main lobby. 5. Please turn off cell phones before entering the NICU. No incoming or outgoing calls, or text messaging, is permitted, as it interferes with monitoring equipment. 6. No children other than brothers and sisters of the baby may enter the NICU. To protect the health of all the newborns, there are very specific requirements siblings must meet before they can be at the baby s bedside. Often during the flu season, siblings are not allowed to visit in the NICU. 7. There may be times that we have to limit family time based on your baby s condition and the condition of the other babies in the unit. 4

7 Contents NICU Telephone Numbers Page 6 Parking at the Medical Center Baby Photos Birth Certificates Social Security Number Affidavit of Parentage Newborn Screening Test (NBSR) Women, Infant & Children Program (WIC) NICU Team Members Educational Classes/Support Services Pain Management Explanation of Equipment Feedings & Developmental Care Discharge Goal Discharge Planning (Vaccinations/Immunizations; Medications; Home Health; Home Monitoring for Apnea and/or Bradycardia; Car Seat Information) When to Call the Doctor

8 NICU Telephone Numbers While you are a patient in the Medical Center, you may reach the NICU by dialing extension After you are discharged you may call the NICU direct line by dialing or You may call anytime, 24 hours a day. To protect you and your baby s privacy, medical information will only be given to parents. When you call the NICU, your identity will be verified before any information is given. Parking at the Medical Center From business Route 13, turn right onto East Vine Street and proceed past the Emergency/Trauma Center Ambulance Entrance. Shortly after East Vine curves to the right, look ahead and to your right and you will see parking Garage B. Follow the signs to Garage B parking. Parking is free in Garage B. You may park in any of the spots not designated for physicians. Peninsula Regional also offers free valet parking at the Frank B. Hanna Outpatient Center entrance, the Richard A. Henson Cancer Institute entrance, the Guerrieri Heart & Vascular Institute entrance and the Volunteer Services entrance adjacent to Parking Garage B, Monday through Friday from 7:00 a.m. until 2:00 p.m. There are two stork parking spots available for parents in the Labor & Delivery entrance parking lot facing the Exxon on Vine Street. Baby Photos Photos of infants in the NICU will be taken when he or she is stable. The purchase of these photos is optional; however it is mandatory that all babies have a photo for identification security reasons. Birthprint is a complete self service photo kiosk. A catalog of photo options and price lists are available. As part of your stay, we have provided you one complimentary record of birth print (includes four photos of your baby and your baby s birth info) at no cost to you. If there are any questions regarding pictures, you may call The website for photos is Personal camera equipment is allowed in the NICU, but please only photograph your baby for reasons of privacy. Video photography equipment is not permitted in the NICU. Birth Certificate Mothers must fill out a birth certificate worksheet before they are discharged to go home. It usually takes three months to get the registration of birth card in the mail. Along with this card comes information about how to obtain a certified birth certificate. If you have any questions about your child s birth certificate, you can write or call: DIVISION OF HEALTH RECORDS 6550 Reisterstown Road Baltimore, MD or or 6

9 Social Security Number A social security number will be issued from the information given on the birth certificate worksheet. It takes approximately two months to receive your child s social security card by mail. If you have any questions, call Please note that the 900 number that is assigned to your baby by the hospital is not the social security number. It is a hospital number for identification purposes only. Affidavit of Parentage If you have a child while living in the state of Maryland, and you are not married to the other parent, now is the time to take the first step towards protecting your child s future. The Affidavit of Parentage is a form that identifies the legal father of the baby. At the time you complete your child s birth certificate worksheet you must complete the Affidavit of Parentage in order for the father of your baby to be named on the birth certificate. During your hospital stay a brochure and video are available to further explain this important information. Newborn Screening Test (NBSR) During your baby s hospitalization, you will be asked to sign consent for the NBSR test. This is a test for six different disorders, which may cause later health problems and mental retardation. If detected early these disorders may be corrected by diet. The test is done on blood drawn from your baby s heel. The state of Maryland recommends that two NBSR s be done, the first sample taken at two days of life and the second sample drawn on the tenth day of life. If your baby is discharged before the second NBSR is completed you will be given a lab request form with instructions to return to the Frank B. Hanna Outpatient Center to have this test repeated. If your baby is hospitalized for eight days or longer the second NBSR will be done while your child is in the hospital. For some of our smaller infants four NBSR s may be required. Women, Infant & Children (WIC) Program WIC is a statewide program that supplies women and children (less than five years of age) food and formula if they are unable to afford these supplies. If you would like to know if you might qualify, ask the Perinatal Care Coordinator. Call the WIC office at to make an appointment as soon as you get home with your infant. When you go to your WIC appointment, remember to take proof of where you live, such as mail addressed to you, and a picture ID. You will also need proof of income such as a W-2 form, a month s worth of paycheck stubs, an income tax return, or a current medical assistance card. You will also need your child s footprint sheet or crib card and your WIC folder, if you are currently on the WIC program. NOTE: Your WIC appointment should be scheduled after your baby has been discharged from the hospital, as your baby must be present with you at your WIC appointment. If you would like more information about the WIC program you may log on to then select Women, Infants and Children Program. 7

10 NICU Team Members The Physician/ Neonatologist: A neonatologist is a physician who specializes in the development, care, and medical conditions of the newborn. He or she will direct the baby s plan of care and examine your baby at least once daily. Ophthalmologist: A physician who is trained to identify, and if appropriate, treat eye disorders. Clinical Manager: A registered nurse who oversees and coordinates care in the NICU. NICU Nurse: A registered nurse who has special training to take care of sick and premature babies in the NICU. Respiratory Therapists: Respiratory therapists provide supportive care for babies requiring respiratory care and support. The respiratory care practitioner collaborates with the neonatologist to provide optimum respiratory care. Perinatal Care Coordinator/Social Worker: The PCC is a social worker who will work with you and your family during the time your baby is in the hospital and will assist with the discharge of your child, especially if your baby has any special needs after discharge. The PCCs can also provide you with information about community resources, insurance, and transportation. Lactation Consultant: A lactation consultant provides support, education and hands on help to parents who are breastfeeding. Lactation consultants receive specialized training and carry an international board certification. Speech Therapist: A health care professional who assesses babies ability to swallow and helps babies learn to nipple feed. Occupational/Physical Therapist: A health care professional who focuses on fine motor development and makes splints for babies who need them. She works with babies to foster appropriate positioning, range of motion, and developmental skills that may be delayed in prematurity or prolonged hospitalization. Laboratory Technicians: Lab technicians are trained in drawing blood samples for diagnostic tests. Dietician: Nutritionist who has training and expertise in planning nutrition for premature sick babies. Pastoral Care: Hospital chaplains are available 24 hours a day. Please contact your baby s nurse if Pastoral Care is needed or you may call extension Financial Services: For information regarding financial services at Peninsula Regional Medical Center, please call

11 Educational Classes/Support Services The following classes/services are offered at Peninsula Regional Medical Center: CPR Review Class This class is strongly recommended for all parents with a child in the NICU. This class will provide an important overview of what to do if your baby suddenly stopped breathing or his/her heart stopped beating. Classes are provided each week and are taught by NICU staff. Parents are invited to bring in any regular caretaker of the infant to be a part of this training. Because the class size is limited you will need to tell the NICU when you would like to attend a class. Please note - Peninsula Regional Medical Center also offers the American Heart Association CPR for Family and Friends course. For more information on this community class please call Breastfeeding Class This class is highly recommended for all breastfeeding mothers and fathers. It is offered monthly and can be attended as soon as the infant is in the NICU. The earlier this class is attended, the more information the parents will have related to breastfeeding, pumping and storage of breast milk. To attend these classes please call Ask for breastfeeding handbook also for information on pumping and storing or breast milk. MotherWell Classes Exercises designed especially for the expectant or newly delivered mother. Please call or PRMC (7762). Grandparenting Classes Have things changed since your parents or in-laws had children? Chances are they have. Your parents and/or in-laws may want to enroll in the grandparenting class to find out the latest news on infant care, safety tips and parenting skills. For more information about the Grandparents Class please call Pain Management in the NICU The pain management goal that we all share for your baby is to keep him/her as comfortable as possible throughout the NICU stay. The most frequent way we do this is by providing simple comfort measures. This includes speaking to him/her in a calm/soothing voice, meeting basic care needs such as diaper changes, feedings and position changes. We may also decrease the lighting and noise around your baby and hold, swaddle or rock your child. You are encouraged to provide these comfort measures, too. Sometimes it will be necessary to perform tests or procedures on your baby which may be painful. Whenever possible we will try to plan ahead for these events and, if indicated, get an order from your baby s doctor to give him/her pain medication ahead of time to help ease the discomfort of the procedure. 9

12 At anytime during the NICU stay if you have questions about your baby s pain management, please talk with his/her nurse and/or doctor. Together we will work to keep your child comfortable. Explanation of Equipment Bililights (phototherapy) a mode of treatment for jaundice (hyperbilirubinemia) in which the infant is placed under special fluorescent lights that break down the structure of bilirubin so it can be easily transported to the liver. Cardio Respiratory Monitor - a monitor used to count the baby s heart rate and respiratory rate. Continuous positive airway pressure (CPAP) - a method of delivering oxygen that forces a constant flow of air into the lungs through a narrow tube placed into the nostrils. Endotracheal Tube a tube placed into the windpipe to provide oxygen. Oxygen is received from the ventilator. Incubator - a means to provide a heated environment to provide warmth which allows the baby to grow. Infusion Pump - a device used to deliver and measure intravenous fluids and medication. Nasal Cannula - a method of delivering oxygen. A thin flexible tube is encircled around the baby s face into the nostrils, which is connected to an oxygen source. A flow meter regulates the amount of oxygen that is delivered. Naso Gastric Tube - a narrow feeding tube passed through the nostril into the stomach. It is used to provide nourishment or to remove air or fluid from the stomach. Oro Gastric Tube - a narrow feeding tube passed through the mouth into the stomach. It is used to provide nourishment or to remove air or fluid from the stomach. Oxyhood - a method to provide humidified oxygen through a hood that is placed over the newborn s head. The amount of oxygen is measured and recorded hourly by the nurse. Room air is 21%. Oxygen is measured in percentages ranging from 21%-100%. Peripheral Intravenous Catheter - a small tube supplying nutrition through a needle inserted into a surface vein of a baby s arm, leg, or scalp. This also provides access to give medications. Pulse Oximeter - a noninvasive monitor used to measure the baby s oxygen level. The normal range is 93%-100%, which may vary according to your baby s condition. Radiant Warmer - an open bed with a heat source that allows the NICU team immediate access to newborns and sick preemies while maintaining a warm air temperature. Respirator (ventilator) - a machine that provides breathing assistance by supplying and regulating a flow of air, oxygen, and air pressure that goes through the endotracheal tube into a baby s lungs. 10

13 Suction Catheter -a narrow flexible suction tube used to suction your baby s mouth, nose and bronchial tube. Umbilical Catheter - [There are two types: an umbilical arterial catheter (UAC) or an umbilical venous catheter (UVC)] - a narrow flexible tube inserted through an umbilical vessel in the baby s navel. When the catheter is placed in an artery, it can be used to draw blood samples, provide nutrition and to measure the arterial blood pressure. When the catheter is placed in a vein, it is used to provide nutrition and to give medications. Feedings Bottle Feeding Premature babies do not have the ability to coordinate sucking, swallowing, and breathing at the same time until usually about 34 weeks gestation. Some babies are able to do this earlier, others later. Until this time, they will not be able to take a bottle and will be fed through a tube. Most premature babies will go home on special formula that has more calories or specific nutrients. Breastfeeding Fully breastfeeding a baby who has been in the NICU can be challenging. But most babies, even those born very prematurely or with certain birth defects such as Down syndrome or cleft lip and palate, can learn to breastfeed. Before your baby goes home, try to spend as many hours (6 or more) a day or two with your baby to help ensure you can breastfeed successfully at home. Refer to newborn handbook given to you at discharge from the mother/baby unit for pumping and storing breast milk and breastfeeding problems. Developmental Care Kangeroo Care Skin-to-skin contact, referred to as kangaroo care, has advantages for both you and your baby. It promotes bonding and increases a nursing mother s breast milk supply. Ask your nurse if kangaroo care is appropriate for your baby. You may need to wait until your baby is stable before attempting this kind of care. Signs of Stress Your baby may let you know when he experiencing some signs of stress. These are signs to look for: crying, hiccups, jerky or failing movements, startling easily, yawning, avoiding eye contact, changes in breathing, heart rate or oxygenation. The smaller and more ill your baby, the more sensitive he/she is to stimulation. Nurses will try to cluster your baby s care to allow longer periods of uninterrupted sleep. Babies prefer a firm, steady touch rather than soft strokes. 11

14 Baby s Discharge Goals Below is a list of goals that must be met prior to going home. Use this as a checklist to keep track of your baby s progress. The more goals met, the closer the baby is to being discharged. Discharge Goal Goal Met Pediatrician Identified: It is the parents responsibility to decide on a pediatrician who will follow the care of your baby once discharged. Check with the Perinatal Care Coordinator if you need help selecting a pediatrician. No respirator or ventilator support required. Your baby may still require some oxygen usually by a nasal cannula. Ideally, your baby will be on room air by discharge. On full feeds: IV fluids have been stopped and baby receives all calories by breast milk or formula. Nippling all feedings: Baby is able to breastfeed or bottle feed every two to four hours. Steady weight gain: Baby shows a steady weight gain pattern of ½ to 1 ounce a day (15-30 grams) No longer requires antibiotics to fight infections. No apnea (baby forgets to breath) or bradycardia (drop in heart rate) within the past 5 days. Baby sleeps in a bassinet/crib: Baby sleeps in an open bassinet/crib with no temperature regulation problems. Parents attend CPR class: Check schedule in NICU nurses station for class times. Car Seat brought to NICU prior to discharge: Every baby born at less than 37 weeks of age will need to have a car seat test which will determine if your baby can safely ride in a car seat. This test takes approximately one hour to perform. Special Discharge Teaching: If your baby requires special instructions, the nurses will need to spend time teaching you this information and evaluating your understanding of information provided. 12

15 Discharge Planning Start early, as soon as your baby s condition allows, to take an active role in your baby s care. Feed, bathe, diaper and dress your baby. These simple acts will help prepare you to have the skills you need to be able take care of your baby at home. Don t be afraid to ask your nurse for help or advice. The following topics will be discussed with you prior to your baby s discharge from the hospital: Vaccinations /Immunizations You are required to give informed consent for your baby to receive immunizations. If your baby is vaccinated prior to discharge, it will be recorded in the black immunization book given to you at time of discharge. This book will help you keep track of your infant s vaccinations. Medications If your infant will be going home on any medications which he/she was receiving in the NICU, the nurse will review and teach dosages and administration teaching to you prior to your baby s discharge. It is important to be involved in your baby s care and start administering these medications while your child is still hospitalized. This will help you be more comfortable and safely administer these medications at home. Home Health Home health referrals are ordered based on your baby s medical history and medical needs. The neonatologist will review your baby s history with your baby s pediatrician and NICU nurse to decide whether home health visits are needed. The Perinatal Care Coordinator will arrange for home visits along with any other referrals, as ordered. Home Monitoring for Apnea and/or Bradycardia Apnea is when your baby forgets to breathe. Premature babies commonly have this problem. When apnea occurs, the baby can also have a sudden drop in his heart rate, which is called bradycardia. Some babies will learn to correct this problem themselves by breathing and increasing their heart rate. Others will need to be stimulated to breathe. Most premature babies will outgrow apnea/bradycardia as they get older. Our NICU routinely uses medications to decrease the frequency with which apnea occurs. Even after this medication is stopped, your baby will be watched closely for any episodes of apnea or bradycardia. If the baby continues to have episodes, your baby s discharge will be delayed. Most babies will resolve this problem prior to discharge. However, some babies may need to go home with a monitor. These cardio-pulmonary monitors will alarm when apnea or bradycardia occurs. The monitor company will train you and another caregiver on the use and care of the monitor before the baby leaves the hospital. 13

16 Car Seat Safety More infants and young children are seriously injured or die due to car accidents than from any other cause. The danger lies in the improper or inconsistent use of child car seats. Therefore, the law in Maryland requires the following: Effective June 30, 2008, Maryland law requires children to be in a car seat or booster seat until their 8 th birthday, unless they weigh more than 65 pounds or are 4'9" or taller. The law further states that the car seat must fit the child by age, height and weight, and the child must be secured in the seat and vehicle according to the instructions of the vehicle and car seat manufacturers. Infants should ride rear-facing from birth to 20 pounds and one year of age. Additional information may be obtained at A car seat recall list may also be found on this website. Obtaining a Car Seat If you cannot afford to buy a car seat, you must make arrangements well in advance of your child s discharge from the hospital to rent (subject to funding available). Contact Project KISS Loaner Programs in the area where you live at SEAT (7328). Maryland Department of Health and Mental Hygiene 201 West Preston Street Baltimore, Maryland NOTE: If you would like to have your car seat placement in your vehicle checked by the State Police, call your local State Police Barracks to schedule an appointment. This service is provided free of charge. Respiratory Syncytial Virus (RSV) RSV is a common virus that affects virtually all children before the age of two. Most babies only get a slight cold from RSV. For some babies, especially premature babies, it can be more serious. Babies who were born prematurely, or have problems, may benefit from medication that helps prevent a severe RSV infection. This medication is called Synagis. It is given in monthly flu shots, usually from fall through spring. Ask your babies doctor if your baby should receive this medication. SIDS Even if your baby slept on his or her tummy in the NICU, at home he or she needs to sleep on its back. Always have a firm, tight fitting mattress in crib or bassinette, and do not lay the baby on a soft blanket, pillow or pad. Tummy time is important for the baby s muscle development when he or she is awake and you can watch him or her closely. 14

17 When to Call the Doctor Call your health care provider if your baby exhibits any of the following possible danger signs: Has difficulty breathing or a change in breathing pattern. Has a blue tint around the nose, lips or the skin (cyanosis)-this IS AN EMERGENCY! Is paler than usual Refuses to eat Is more irritable than usual Is less active than usual (lethargic) Vomits (not spit-up or reflux) Has diarrhea for more than a day or has a change in bowel habits Has a fever higher than 100 F or more Has one or more apnea (a periodic interruption in breathing) episodes, or as instructed by your doctor Just doesn t seem right No stool for 48 hours and less than 6 wet diapers a day Remember, you know your baby the best. If you think something is wrong with your baby, get him checked out right away! Never Shake Your Baby Taking care of a fussy baby, or a baby who cries and cannot be consoled, is very, very stressful. Sometimes, usually out of frustration, a caregiver will shake the baby forcefully in an attempt to make him stop crying. A baby should NEVER be shaken because his tiny, fragile brain may become damaged. If your baby will not stop crying, you can try the following: Check to make sure he is not hungry or have a dirty diaper. Check for signs of illness or pain, like a fever over degrees, swollen gums or an ear infection. Rock or walk with the baby, but if you feel stressed put him down right away. Sing or talk to the baby. Swaddle the tightly in a blanket. Turn on the stereo, TV, run the vacuum cleaner, or run water in the bathtub or sink for white noise. Hold baby close to your body and breathe calmly and slowly. Call a friend or relative to take care of the baby while you take a break. If nothing else works, put the baby in the crib, close the door and check on him in 10 minutes. 15

18 At first glance you were so small I hardly saw a baby at all, with tubes and wires a frightening sight but you were in for a big fight. Not even two pounds just skin and bones, your body so small with problems so big, but you fought hard and continued to grow. So many fears, so many tears, precious child you are home today, I love you dear, more than words can say. A miracle baby. Source: 16

19 Use this chart to track your baby s growth. G R Date Weight Length O W T H C H A R T Notes: 17

20 Important Names and Phone Numbers: Use this page to write down important names and telephone numbers you would like to keep handy. Obstetrician: Neonatologist: Pediatrician: Name of Person Telephone Number NICU Clinical Manager: Lactation Consultant: Perinatal Care Coordinator: Insurance Company: Clergy: Support Person: Other: Other: Other: Other: Other: Other: Other: 18

21 Weight Conversion Chart Directions: To find your baby s weight in pounds and ounces, first locate on the chart his/her weight in grams. The number at the top of the column will give you pounds. The number to the left side of the column will give you ounces. P O U N D S O U N C E S Birth Date: Birth Weight: Length: 19

22 EDUC-059 (11-09)