University of Colorado Hospital s. Neonatal Intensive Care Unit

Transcription

1 University of Colorado Hospital s Neonatal Intensive Care Unit 1

2 2

3 Dear Parents, Welcome to the University of Colorado Hospital s Neonatal Intensive Care Unit (NICU). We are part of the Colorado Institute for Maternal & Fetal Health. Congratulations on the birth of your baby! The birth of an infant is a joyous time. Having a baby that needs special care can be frightening and overwhelming. We have prepared this packet to help guide you through the journey ahead. Our Level III NICU is the largest in Denver. We care for about 600 premature or sick babies every year. We are proud of the care we give. We help our little patients have results that are above national averages. In our state-of-the-art NICU, our patients have access to the latest research and technology. Our specially trained doctors, registered nurses, neonatal nurse practitioners, and other health care professionals are dedicated to helping your baby and family throughout this hospitalization. Your baby s health is truly a team effort. You are a very important member of that team. We look forward to working with you during your baby s stay. We encourage you to visit often. When you can t be here, please call and check on your baby. If you have questions or concerns about your baby s care, we are here to answer your questions. We also encourage you to be involved in daily rounds (around 9 a.m. and 9 p.m.) and nurse-to-nurse reports (7 a.m. and 7 p.m.). We hope to make what is often a frightening and anxious situation as reassuring and comfortable as possible for you and your family. This packet outlines some of the things you need to know when your baby first comes to the NICU. As you begin to learn more about the NICU, please see the ABCs of the NICU binder. This is found at your baby s bedside. This will give you more information about procedures and terms you may hear and the special things we do to help your baby. We ask that you take time in the next few days to look over this information. We encourage you to ask any questions. Sincerely, The UCH NICU Care Team Colorado Institute for Maternal & Fetal Health 3

4 NICU Family Participation Guidelines We developed these guidelines to partner with you to: Deliver the very best care possible for your baby Protect your baby and your family Help maintain a safe and calm environment for your baby General Guidelines Parents are welcome and encouraged to be with and care for their baby in the NICU. The unit is open to parents at all hours. Change of shift is from 7 a.m. to 7:30 a.m. and 7 p.m. to 7:30 p.m. The staff uses this time to pass on information regarding your baby s care. Parents are welcome to participate. It helps us a great deal if there are fewer phone calls and visitor traffic in the unit at this time. Also, as needed, the charge nurse or doctor may ask for additional precautions for the safety of our patients, visitors and staff (for example, during the winter cold or flu season). The NICU uses interpreter services, both over the phone and in person, for families that need to communicate with a language other than English. Please set all cell phones and pagers to vibrate, or turn them off while in the NICU, as they increase the noise level. Please do not bring food into the NICU. However, you may take drinks in a covered container into the patient rooms. Please be sure to throw away your empty cups. Other Visitors Visitors, other than brothers and sisters of the baby, must be 12 years or older to visit. This is to limit your baby s exposure to illness.»» Parents may choose four consistent people who may visit and receive information regarding their infant s condition even when the parents are not present. You must complete a visitor form and a medical release of information form for each of these people. These four visitors cannot bring other visitors with them. 4

5 We can only give information over the phone to parents. We will not give information over the phone to your four designated visitors. If you call and the nurse caring for your baby does not answer, please call back. The nurse may be caring for your baby, or another patient, and may be unable to do so safely while answering the phone. For your baby s safety, we request that no more than four people visit at one time. There is a waiting area available near the NICU. Please respect the privacy of others by remaining at your baby s bedside when visiting in the NICU. To protect your baby, visitors should not visit if they have cold-like symptoms, nausea, vomiting or recent exposure to a contagious disease. As per hospital policy, children under the age of 15 visiting any area of the hospital must be supervised by an adult at all times. Brothers and sisters In order to try to limit your baby s exposure to illness, we ask that a parent complete a Health Screening Questionnaire before each sibling visit. The sibling must pass the health screen in order to visit with the baby. An adult must supervise children at all times. Since children have short attention spans, we recommend limiting sibling visits to 15 to 20 minutes. We try to maintain a quiet environment in the NICU for your baby. We may ask your children to quiet down or leave the area if they become noisy or unruly. Identification We list each baby under the mother s last name during this hospital stay. Since we have a commitment to privacy, we issue parents an identification number (or code ). You must give this to us prior to receiving any information over the phone. For your baby s safety, do not share this code with anyone else. Only parents may call and receive information over the phone. Please inform family and friends that the NICU staff cannot give information to them about your baby. Please make sure that the NICU has your current phone number, address, and emergency phone numbers. Parents may call the unit directly at Hand washing Hand washing is the best way to prevent the spread of germs to your baby All visitors must wash their hands with soap and water before visiting the nursery. This includes rolling up the sleeves to the elbow and washing well around any jewelry. Arms and hands are to be dried thoroughly. Parents, and visitors, must use alcohol foam or gel every time they enter or exit the room, and before each contact with your baby.»» Please remember to wash your hands thoroughly with soap and water after changing your baby s diaper. 5

6 6

7 What s Your Role in Your Baby s Care? Although your baby began life in a different way than you probably had dreamed, there are so many things you, as parents, can do to help give your baby a healthy start. Our expert medical staff is here 24 hours a day, 7 days a week to provide the medical care your baby requires, and there are many ways you can be part of this: Spend as much time in the NICU as you can. We really want you to participate as much as possible in the care of your special baby. You can get to know your baby by watching his or her behavior. Parents and siblings are encouraged to visit any time during the day or night to be part your baby s care. Up to four designated visitors may also visit. Please know that we will only give you, the parents, any information about your baby s condition. There is a great deal of equipment around your baby, and you will sometimes hear alarms ringing. The nurse taking care of your baby will explain all of the equipment to you. Please do not touch or change any equipment. One of the most important ways you can take part in your baby s care is by connecting through touch. In the beginning, many parents are afraid to touch or hold their babies. Touching, feeding, talking to and caring for your baby starts to build a special bond while helping your baby to thrive. The NICU has two family rooms. Using a family room provides you the opportunity to spend the night and help care for your child. These rooms are available on a priority basis and can be booked for you, up to two days in one week. Please check with your baby s nurse for further information. Learn the routine. Your baby s nurses can help you find the best ways and times to interact with your baby. Each baby in the NICU will have care times every 3 to 4 hours. You are encouraged to help the NICU team with care during these times by taking the baby s temperature, changing diapers, bathing and feeding your baby. Hold your baby tight. Babies like to feel snug. It helps them feel safe. You ll notice the nurses position your baby in a snug nest in the bed. When caring for your baby, re-create this safe feeling by using your hands to hold the baby in a tucked position. Put one hand on the head or arms and one hand on the legs. Premature babies like firm touch more than gentle stroking. Sing a lullaby. Sleep is vital for your baby s development and well-being. It s the best way to help them become healthy. You are always welcome to be with your baby, but unless you are holding your baby skin-to-skin, it s best to leave your baby sleeping peacefully in the bed until the next care time. Leave a scent. At birth, babies can recognize their mother s smell. You can ask a nurse for a piece of cloth to wear on your skin for a few hours. You can then leave the cloth with your baby so he or she can smell you, even if you can t be there. Talk to your baby. Babies begin to hear when they are just 20 weeks along in development. When born, they know their mother by her voice. When your baby is active and alert, talking to him or her in a soft, calm voice can be very helpful. We invite you to grab a book from the NICU Book Nook and read to your baby as often as you would like. Document the time. You are welcome to take pictures of your baby to share with family and friends. You also may want to keep a disposable camera at your baby s bedside for staff to capture images when you are not able to be here. You also can bring pictures of your family into the NICU for your baby to look at. Build your confidence. By being actively involved in your baby s care, you will feel more confident about caring for your baby. We want you to parent your baby as often as you can. This may be harder for mothers who are still recovering themselves, or who have other children at home. We understand and would like to help you if we can. Please know that no question or concern is too small. We are here to support you as you learn to parent your special baby. 7

8 Kangaroo Care We know that you long to hold your baby, but he or she may be too unstable in the first few hours or days to be held. Remember that even if you cannot hold your baby yet, your voice and touch can be very comforting and reassuring. When premature or sick newborns need intensive care, the separation can interrupt bonding between parents and the baby. To help you and your baby bond, we encourage skin-to-skin contact, or what is called Kangaroo Care. Here s what you need to know: Hold your baby, dressed only in a diaper, in an upright position on your bare chest. This gives the most contact with your skin. Both moms and dads can hold their baby in Kangaroo Care. Wrap your shirt or a blanket around your baby to keep the heat between you. It s easiest if your shirt buttons in the front. We ll have a comfortable chair, footstool, pillows and curtains for privacy right at your baby s bedside. Parents say Kangaroo Care helps them feel closer to their baby and feel more relaxed about caring for them. Babies who are held in Kangaroo Care by their parents tend to: Gain weight faster Sleep longer Stay warmer Learn to breastfeed sooner You can do Kangaroo Care every time you visit (or less often) whatever works best for you and your baby. Although one hour of Kangaroo Care every day is recommended, how frequently and how long your baby can be held in Kangaroo Care will be decided by how your baby tolerates it. Most babies do very well and are most stable when being held skin-to-skin. Many breastfeeding mothers say they have a greater milk supply after Kangaroo Care. However, you do not have to be breastfeeding your baby to perform Kangaroo Care. 8

9 Providing Breast Milk Research shows that breast milk is very helpful. It can save the lives of infants who are ill or born prematurely. Mothers make milk specifically designed for their baby s own needs. Your milk is the very best source of nutrition for your baby. Compared to infants who are fed cow s milk formula, breastfed infants may: Have better brain development Experience fewer infections Go home from the hospital sooner Along with Kangaroo Care, providing milk is one thing only you can do for your baby. Lactation Specialists and nurses from the Colorado Institute of Maternal & Fetal Health will help you learn to pump and store breast milk to feed your baby now. They will also help you learn how to successfully breastfeed directly, when your baby is ready. Although providing milk is extremely important for the health of your baby, it can be very challenging. Your body may be healing from a difficult pregnancy and delivery, or you may have other needs that keep you from providing breast milk. In these cases, your baby s healthcare team recommends the use of heatprocessed (pasteurized), donor human milk to feed your baby. Donor milk offers many of the benefits of human milk for the baby. Please ask your baby s care team for more information. 9

10 Common Questions: What every NICU parent wants to know Q: When can my baby go home? A: We know you are eager to take your baby home. The doctors will know when your baby s condition is stable enough to go home. For babies on antibiotics for an infection, this may be when those are completed, if no other problems require treatment. For premature babies, it will depend on how early they were born and how serious their complications. Often, babies are sent home around the time they would have been born, if the pregnancy went to term. To be safe for discharge, your baby will need to: Be able to maintain their temperature in a crib or bassinette Eat all of their feedings at breast or with a bottle Be gaining weight If your baby needs oxygen, he or she must pass a challenge without oxygen for 45 minutes. There will also need to have been no episodes of apnea (a long pause in breathing), or bradycardia (slow heart rate) for five days. The As and Bs of the NICU A is for apnea. This is a medical term for a long pause in breathing. B if for bradycardia or brady. This a term for when a person s heart rate slows to lower than normal. It s common for preterm infants to sometimes briefly hold their breath and have a low heart rate. You may hear the medical team call these episodes As and Bs. Many times, babies will breathe again by themselves. Sometimes a baby might need prompting to take a breath or might be prescribed caffeine to prevent an episode. As the brain develops, these As and Bs will occur less frequently. Q: How can I get ready for my baby to come home? A: You might feel a little afraid about bringing your baby home. Know that we will help you learn how to confidently, competently and safely care for your baby. We encourage you to attend a discharge class one to two weeks before your baby is going home from the hospital. Ask your baby s nurse to schedule you for a class when your baby starts eating from breast or bottle regularly. You also will need to find a pediatrician or clinic to continue your baby s care. Ask one of our nurses or doctors for some names. Before your baby is ready to go home, we encourage you to stay with your baby in a rooming-in room. You will be expected to give all care for your baby, but will have the benefit of staff members to ask questions, as they arise. You will also need to bring a car seat for your baby a few days before going home. Q: What is all the equipment in my baby s room and what does it do? A: When you visit your baby in the NICU, all of the equipment you see and noises you hear can be overwhelming. Here are the three main pieces of equipment important to all NICU patients: 1. Cardio-respiratory monitor: All of our patients are placed on a continuous monitor so the nursing and medical staff can always see your baby s heart rate, breathing rate, and the amount of oxygen carried in the blood (oxygen saturation). Blood pressure may be shown as well. These monitors sometimes sound alarms to tell the nurses that one of the numbers is out of a set range. This may feel scary, especially if nurses and doctors don t come running when an alarm sounds. But know that our nurses can see your baby s vital signs even if they are with another patient. They are trained to know which alarms need attention right away. 10

11 2. Bed: When your baby is born, they will often be placed in a bed with heat coming from above to keep them warm. For small babies, the top of the bed can come down to make an incubator that gives controlled heat and humidity. It s important to keep the doors closed, to keep in the heat and humidity. Most babies weighing about 4 pounds or more can keep themselves warm without extra heat. When your baby reaches that milestone, he or she will be moved to a crib or bassinette. 3. Pumps: Pumps are often used to give fluids, medicines and feedings. They are on a pole or put on a shelf by your baby s bed. Please do not touch the equipment or turn off alarms. Ask your baby s nurse about any equipment. Q: Can I stay here with my baby? A: Absolutely. You are always welcome to stay at your baby s bedside. We will do our best to make it feel comfortable and private for you and your family. Also, there are two family rooms with a bed and bathroom available for parents wanting to stay the night near the NICU. There is also a Parent s Corner for storing and preparing food and relaxing. Rooming-in rooms in the NICU are open to families of stable infants who want to practice fully caring for their baby before going home. Q: Where can I learn more about my sick or preterm baby? A: We hope you ll read through the ABCs of the NICU binder at your baby s bedside. You will learn more about the NICU team and terms you might hear. We also have a library of books about how to parent babies who need intensive care. You can borrow these while visiting the NICU. If you would like to have them at home, please use your library or favorite bookstore. Newborn Intensive Care: What Every Parent Needs to Know, by Jeanette Zaichkin Preemies: The Essential Guide for Parents of Premature Babies, by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron Parenting Your Premature Baby and Child: The Emotional Journey, by Deborah L. Davis and Mara Tesler Stein The Premature Baby Book: Everything You Need to Know About Your Premature Baby from Birth to Age One, by William Sears, Robert Sears, James Sears, and Martha Sears The Preemie Parents Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home and Through the First Years, by Susan L. Madden The Preemie Primer: A Complete Guide for Parents of Premature Babies--from Birth through the Toddler Years and Beyond, by Jennifer Gunter, MD This Lovely Life: A Memoir of Premature Motherhood, by Vicki Forman You ll find lots of information on the internet, but don t believe everything you read. It s important to remember that your baby is an individual with a unique situation. Here are some websites you might find helpful: marchofdimes.com nicu-pedia.com/home kidshealth.org/parent/system/ill/nicu_caring.html 11

12 12

13 Common Procedures in the NICU Babies are admitted to the NICU for different reasons. Our medical team assesses the needs of each patient separately. However, there are some common tests and procedures that may happen to your baby. Newborn screen: All babies born in Colorado are screened for 35 different medical conditions before they leave the hospital. These conditions usually don t show any symptoms in newborns. If these conditions are not found and treated within the first days or weeks of life, they may cause severe lifelong illness, neurological damage resulting in severe mental and physical disability, or even death. Early diagnosis and treatment can result in normal growth and development. It can also prevent or reduce the severity of serious medical problems associated with these conditions. The newborn screening test is safe and simple. It is one of the most important things parents can do to protect their children s health. In the NICU, this testing is done when your baby is 2 days old and 14 days old. The test uses five drops of blood from the baby s heel. The blood is sent to the Colorado State Laboratory for testing. Most newborns will have a normal newborn screening test. If a newborn screening test is not normal, it means the baby needs additional testing. Gastric tube placement: If your baby was born before 34 weeks gestation, it s likely that he or she is not ready to take all feedings from the breast or a bottle. This is a developed skill that takes energy and practice. We want to make sure we give your baby proper nutrition while reserving the energy needed to develop the skills to eat. To do this, a long tube will be placed in your baby s mouth or nose. This tube ends in the baby s stomach and is used to feed your baby. It may also be used to remove air from the stomach. Intubation: Some babies are not able to breathe on their own. In this case, a small tube will be placed in your baby s mouth leading to the lungs. This tube is attached to a ventilator (a machine that helps your baby breathe). IV or central line placement: The medical team may need to place an IV, to give your baby medicines. This is a short tube placed in one of your baby s veins. The IV itself should not hurt and is taken out in a few days. If your baby needs medicines or fluids for more than a few days, a central line will be placed in your baby s umbilical cord, arm or leg. It is important to know that central lines can cause infections of the blood stream. Our team does everything possible to prevent infections, including: Following hand washing practice. Everyone who comes near your baby (even you!) should wash their hands with alcohol rub or soap and water. It is done before and after going into your baby s room. It is always OK to ask anyone, including nurses, doctors and other hospital employees, to wash their hands before touching your special baby. Cleaning the skin before placing the central line Sterile practices Taking out the line as soon as possible 13

14 How Can We Support You? We realize having your baby in the NICU is not what you had hoped for. It s very stressful. You are likely feeling scared and helpless. Women and men often respond differently to feelings of loss, grief and anxiety. How you respond can add to your anxiety. It s important to remember that you are not alone. There are many people to support you and your family. Tap into your personal support network. Don t be afraid to ask family, friends, neighbors, and others in your community for help. They can often help with meals, transportation, shopping, child care and emotional support. Spend time with people you trust, to share your feelings and concerns. Websites, such as Facebook, Carepages.com, or share.marchofdimes.com can help you update family and friends easily and connect you with other families during this challenging time. Ask for help. If basic needs such as food, housing and transportation are creating stress for you, please ask to speak with our social worker. We can help you find community resources. If you don t live in the Denver area, the Ronald McDonald House can offer low-cost lodging and free rides to the hospital. Talk about your concerns. You can talk with a chaplain at any time for your spiritual needs or just to talk. Or ask your nurse if you can talk with one of our NICU Parent Advocates. These volunteers have been in your shoes. They have had children in the NICU and know how you are feeling. Get help from a group. Love for Lily (loveforlily.org) is a nonprofit organization founded to honor a patient who was in our NICU. This meaningful group provides 14 support for families with babies in the NICU. They sponsor NICU Mom s Group meetings every other Friday (10am) and NICU Dinner Group meetings the second Thursday of every month (6pm) to bring families of NICU babies together. Meetings are held in the NICU conference room. Request a care conference. You will get a great deal of complex information in the NICU. At any time, you can request a care conference to meet with the team, ask questions, and voice your concerns or desires. Never be afraid to ask more questions. You may want to ask doctors or nurses to write something down so you can remember it later. You may want to ask about the plan for the day for your baby. Write it out. Many parents benefit from keeping a journal. Use it to write down your feelings, keep track of your baby s progress, write down questions and answers about your baby s care, or even draw. Take care of you. What your baby needs most is a happy, healthy parent. If you are having difficulty eating, sleeping, or think that you or your partner might be depressed, please tell your doctor or the staff. We can help.

15 15

16 Learn more about the University of Colorado Hospital NICU at the Colorado Institute for Maternal & Fetal Health maternalfetalinstitute.org/neonatology 16