Welcome to Neonatal Intensive Care Unit

Transcription

1 Welcome to Neonatal Intensive Care Unit Your baby has been admitted to the Neonatal Intensive Care Unit (Neonatal ICU), location 8 D 105. The unit looks after newborn babies who need special care. This booklet outlines everyday arrangements within the Neonatal ICU. More detailed information is available from the nurse who is looking after your baby. A Neonatal ICU isn t run in the same way as an ordinary care unit. A lot of special equipment is used, for example, to monitor and support the babies vital functions, such as pulse, breathing, blood pressure and temperature. The nurse who is looking after your baby operates the equipment and can tell you what it is all for. Because the equipment is very sensitive, it will give an alarm whenever anything changes. So please don t think that there is something wrong with your baby every time an alarm sounds. If you have any questions, feel free to ask the doctor or nurse who is taking care of your baby.

2 Staff At the Neonatal ICU, you will find (fellow) neonatologists, paediatricians, junior doctors and Neonatal ICU nurses, some of whom are trainees. The doctors and nurses are helped to care for your baby by a team that includes medical social workers, physiotherapists, pedagogical workers, pastoral staff, radiologists and laboratory technicians. The unit s day is divided into three shifts: a day shift, an evening shift and a night shift. So in any given 24-hour period, there are three teams of doctors and nurses on duty. On each shift there will be a nurse with general responsibility for your baby. This nurse is the person you will normally be dealing with. He/she will be able to tell you whether any of the care practitioners mentioned above will be involved in the treatment of your baby. Within the Neonatal ICU, one person is responsible for coordinating each baby s care. In the first few days after your baby arrives at the unit, your baby s care coordinator (one of the nurses) will arrange a meeting so that you can get to know one another and he/she can explain his/her role. You can also ask to talk to the doctor treating your baby or to another team member at any time. The nurse who is looking after your baby will arrange for you to see the person in question as soon as possible. On weekdays and during office hours, someone is always on duty at the reception in the corridor. The receptionist is the person you need to talk to about anything administrative, such as the name of your insurer and your insurance policy number. Please give the receptionist the necessary information as quickly as possible preferably on your first visit to the department so that it can be checked and entered onto the system. Medical social workers Whenever a baby has to spend a long time at the Neonatal ICU, the team treating the baby includes a medical social worker. Medical social workers work closely with the unit s doctors and nurses, and use their specialist experience to help parents deal with problems linked to their babies illness or treatment. You may be introduced to a medical social worker quite soon after your baby is moved to the Neonatal ICU, so that you can benefit from his/her specialist knowledge and experience with all the issues surrounding a prolonged stay. Further information is available from the nurse who is looking after your baby or from the Medical Social Work Team on (020)

3 Spiritual/Pastoral Care Service The VU University Medical Center is supported by several Catholic and Protestant priests and by an imam. Whatever your religion, if you wish to discuss spiritual or philosophical issues, pastoral support is always available through the hospital. Both you and your family and friends may make use of this support. If you would like a pastoral worker to visit you, please tell the nurse or the Pastoral Centre. In some cases, a pastoral carer may contact you of his/ her own accord. Where appropriate, a baby can be admitted to your faith at the Neonatal ICU. For further information, speak to the nurse that is looking after your baby or call the Spiritual/Pastoral Care Service on (020) Lockers While you are visiting the Neonatal ICU, you may leave your valuables in a locker. Please use the locker with the same number as your baby s incubator number. The lockers are coin-operated: you need to put in 0.50, which you get back afterwards. Please don t take your locker key home with you. Health insurance When you have a baby, you need to register him or her with your health insurer within sixty days. We advise you to do so as soon as possible, because there are often administrative delays. As soon as you have an insurance policy number for your son or daughter, please tell us, so that we can make the necessary financial arrangements with the insurer. Further information is given in the letter that you will receive from the Patient Administration Unit on the day that your baby is admitted. Getting answers to your questions At the Neonatal ICU, several nurses are on duty at all times of the day and night. By your baby s incubator, you will find an IC list, which tells you who is currently looking after your son or daughter. The nurse in question will do his/her best to keep you informed about how your baby is doing. You can also phone the nurse to ask questions, whenever you feel the need. The phone number to use is given at the end of this booklet. Information can be given only to parents/guardians, unless special arrangements have been made with you. 3

4 While your baby is at the Neonatal ICU, he or she will have a nursing record file. This file is used by the nurses. In it, they record the care your baby has received and the observations they have made. If you wish to, you may look at the file in the company of a nurse. Visiting arrangements At the Neonatal ICU, we believe that it is important for parents/guardians to be able to spend as much time as possible with their babies. When you want to see your baby, first you need to use the intercom at the entrance to identify yourself by giving your name and your baby s name. Once you have come through the main door, you will find yourself in an anteroom that acts as a lock between the unit and the outside world. In the anteroom, please take off any coat, watch, bracelets and rings that you may be wearing (although it is best not to leave valuables there). Then disinfect your hands with the alcohol rub and let them dry in the air. If you can t get your rings off, you will need to put on a pair of the gloves that are available by the entrance. These precautions are needed to minimize the risk of your baby acquiring an infection (see also the section of this booklet headed Infection risk ). Parents are welcome to visit at any time of the day or night, except when the doctors are making their rounds. Unfortunately, we cannot have visitors when the doctors are making their rounds, because the doctors need to be able to discuss cases without confidential information being overheard by people visiting other patients. The times when we cannot accept visitors are displayed on the notice board at the entrance to the unit. Other family and friends are welcome to visit between 11:00 and 13:00, and between 16:00 and 19:30, provided that they are accompanied by one of the baby s parents. Visits can be made at other times by prior arrangement again, provided that visitors are accompanied by a parent. Please do not bring more than two people at a time with you into the unit. Naturally, your baby s brothers and sisters can visit, but age restrictions do apply, as explained in the section headed Infection risk. Unfortunately, we cannot allow children other than brothers and sisters into the unit if they are under the age of twelve. More generally, undertwelves are not allowed to move around the hospital unsupervised. A free crèche for babies and young children is available between 8:00 and 16:00 in the outpatients clinic. For details, call (020) Please respect the privacy of other parents and babies: do not stop and 4

5 look into other incubators, and ask your guests not to do so either. While you are visiting, nursing care and treatment will continue as normal. From time to time, an urgent case may need extra space and attention, or we may need to set up and use X-ray equipment. If so, you might be asked to leave the unit for a while and wait in the specially provided seating area in the hall. On the ninth floor, you will find the VU Kids City, complete with large play area, sitting room, Ajax players home and much more besides. The VU Kids City is a place where sick children can play, relax and forget about their problems. Visiting brothers and sisters are also welcome, provided that they have a parent with them. Infection risk In hospitals, precautions always have to be taken to prevent infection. This is especially important at the Neonatal ICU, because the newborn babies we care for have less resistance to infection. For this reason, we do not normally allow brothers and sisters to visit if they are less than seven years old. Brothers and sisters aged between seven and twelve are allowed in, provided that they have already had chicken pox. In special circumstances, younger brothers and sisters may visit by prior arrangement. To arrange a visit, please talk to the nurse who is looking after your baby. If you are at all unsure about anything connected with an infectious illness, please call and talk to a doctor or nurse before visiting. It is also a good idea to talk to the staff before visiting if you have a temperature, a cold sore, flu, diarrhoea or anything similar. Illnesses such as these can be very dangerous for our young patients. When you arrive at the unit, any coat, watch, bracelets and rings that you may be wearing should be taken off in the anteroom (the room between the corridor and the Neonatal ICU itself). You then need to disinfect your hands with the alcohol rub and let them dry in the air. If you can t get your rings off, you will need to put on a pair of the gloves that are available by the entrance. Coats cannot be worn in the unit; please hang them in the anteroom. However, we would advise you not to leave valuables there. Because touching can lead to infection, it is best if only parents touch the baby. You should disinfect your hands using the alcohol rub immediately before and after each time that you touch your baby. You are also asked to disinfect your hands again as you leave the unit. 5

6 Parent participation Provided that your baby is well enough, we want you to be involved in caring for him or her as much as possible. Although as parents/ guardians you can visit at any time you like, you should bear in mind that it is important for your baby to get plenty of rest. It will not help him or her to be woken frequently between the times that he or she is scheduled to receive attention. The nurse can tell you what those times are, so that you can visit when you can help attend to your baby. Please make appropriate arrangements with the nurse. It can be nice for your baby to have something from home a small cuddly toy, music box or comfort blanket, perhaps in the incubator. However, for hygiene reasons, we do ask parent to take home and wash cuddly toys and comfort blankets once a week or when visibly dirty. If you give your baby a dummy, the nurse will sterilize it every day. In appropriate circumstances, the nurse who is looking after your baby may also suggest that you bring your son or daughter some clothes from home. If so, we advise you not to bring white clothes, which are easily mislaid amongst all the other white washing at the laundry. Another nice idea is to get a diary or notebook for your baby; in it, you can write down your own thoughts, and/or ask for contributions from other visitors or the nurse. Contact with your baby Your baby is in the Neonatal ICU because he or she needs extra care. This may be for a few days, a few weeks or longer. While your baby is at the unit, doctors and nurses will provide the care that he or she needs for his/her physical welfare. However, your baby also needs the special security and attention that only you can give. Physical contact between parents and baby is very important, both for the baby s growth and development, and for bonding. Motherly or fatherly feelings need time to develop through contact. Some parents find it difficult to touch their new babies in the unit, because they are scared to form an attachment. However, your baby really needs physical contact. If the baby is well enough and the nurse is happy with the idea, you can have your son or daughter on your lap or lay him/her on your chest. This will enable the baby to get used to mum and/or dad through direct skin contact. We are happy for parents to nurse their babies like this until 22:00. 6

7 Transfer to another hospital When your baby no longer needs our intensive care, he or she will be moved to a hospital closer to home or back to the hospital he or she came from. Because we have only a small number of IC incubators, we sometimes need to move a baby at very short notice to make room for another very ill baby to receive specialist care. If we think it is best to move your baby, the doctor will discuss the arrangements with you in advance. After leaving the unit, our paediatricians continue to keep an eye on some youngsters through the outpatients clinic. So you may be invited to see a paediatrician at the outpatients clinic shortly before your baby leaves the unit. If it isn t possible to make arrangements before the baby leaves us, we will write to you at home to make an appointment. Follow-up outpatient care All children who need intensive care continue to see our paediatricians from time to time as outpatients. National figures show that children who need intensive care when they are newborn are more likely than other children to have development problems later. Keeping an eye on their progress helps us to evaluate the intensive care provided soon after birth. In the Netherlands, the necessary check-ups take place in various government-designated and government-funded centres that have neonatal intensive care facilities. The system means that in the future we will be able to see how effective treatment has been. You may be given your first outpatient s appointment when your baby leaves the unit, or we may write to you at home about it later. If the proposed appointment is inconvenient, simply call us to change it the number to ring will be on the letter. If you cannot make an appointment perhaps because your baby is still in hospital please let us know. We would like to see you and your baby for these special check-ups about the time your son or daughter would have been born if birth had not been premature, and then about three, six, twelve and twenty-four months after that. Staying at the hospital We do not have facilities for parents to room in with their babies. However, if your baby s condition makes it appropriate, or if you are not up to travelling home, you can make use of the Ronald McDonald hostel facilities attached to the university. The hostel is next to the VU University Medical Center, at no. 627, Amstelveenseweg. As well as 7

8 putting up parents, the Ronald McDonald hostel can, for example, take brothers and sisters for the weekend. Rooms cost per night (April 2009). The nurse who is looking after your baby can find out whether a room is available. For more information, ask for the [Dutch-language] leaflet about the Ronald McDonald hostel or call (020) If the hostel is full, we will try to find you a room in the guest accommodation. Guests can make use of various facilities, including a kitchen and (for a small charge) washing, drying and ironing facilities. Details are provided in the [Dutch-language] leaflet Logeren in het Gastenverblijf. We do ask guests to pay a surety deposit at the start of their stay. Some health insurers will reimburse the cost of staying at the Ronald McDonald hostel. Food is available from the hospital s self-service restaurant in the central hall. Alternatively, you can use the staff restaurant, which is on the ground floor at location 0A. Payment is by means of a chipknip card (electronic wallet). Parking Paid parking is available at various places around the VU University Medical Center. If your baby needs to spend more than three days at the unit, you can buy a pass for the underground car park located beneath the outpatients clinic. Please ask the nurse who is looking after your baby for a pass application form early in your baby s stay. The completed form should be handed in at the reception desk by the Medical Center s main entrance, where the staff can also answer any questions you may have about the arrangements. Parents sitting room A special sitting room is provided for parents, between Towers C and D on the 8th floor. You will need a security code to open the door; the nurse can tell you what it is. The sitting room has a drinks machine, but smoking is not allowed there (or anywhere else in the hospital). The parents sitting room is not very big, so if you are with a group of people, please consider other parents and make use of the central hall by the main entrance. Public telephones are available on the ground floor in the central hall; you will need a phone card to use them. The use of mobile phones isn t allowed in most parts of the hospital because they can interfere with equipment. So please remember to switch your phone off before you enter the building. 8

9 The VU University Medical Center does have a number of mobile phone calling locations, however, which are identified by special signs. Your baby s medical records All the information about your baby that we record while he or she is at the unit is securely saved in electronic form or on paper. This enables us to look back at your baby s records if he or she ever needs our help again. The data may also be used for scientific research by one or more paediatricians attached to the unit. Finally, other people (outside paediatricians, midwives, gynaecologists) may refer to the data when assessing or looking for ways of improving the quality of midwifery care or neonatal care. If your baby s data are used in this way, no names will be included, so that the researchers cannot tell who the information relates to. In other words, your privacy, your baby s privacy and that of the paediatricians will be completely protected. For quality assessment purposes, data concerning your baby will also be passed on to the National Neonatology Registry, which forms part of the Dutch Perinatal Registry (along with the National Midwifery Registry). To prevent babies being counted twice, the data passed on to the registry does usually include names. If you do not want data concerning your baby to be used for scientific research, registration or quality assessment, please let us know. We will then make sure that the data we hold is used only to help us care for your son or daughter in the future, and not for any of the other purposes described. Scientific research Scientific research can often be carried out only with the help of patients. So you might be asked whether you are willing for your baby to be included in a study. We will never let your baby be included in a study without asking you and giving you the chance to ask questions before you make up your mind. A [Dutch-language] leaflet about the scientific research carried out at the centre is available from the doctor. This leaflet explains what taking part in a study is liable to involve. It is also possible that you and your baby will be invited to a lecture room where medical students are learning about neonatal care. By agreeing to come along, you will be helping us to advance medical science and to make sure that in the future other babies receive the best possible care. So we hope very much that you will agree, 9

10 but you can always say No. If you decide not to take part in a study or attend a lecture, it will not make any difference to the way the doctors behave towards you or to the treatment that your baby is given. Patient information point In the VU University Medical Center outpatients clinic there is an information point, where patients and visitors can get assistance or make suggestions. The information point staff will answer questions themselves whenever they can. Otherwise they will make enquiries on your behalf or tell you where you can find the information you need. Details of the various patients associations including leaflets, booklets etc published by the larger organizations are available from the information point. You can also raise any issues that you aren t happy with there. The patient information point is in the central hall of the outpatients clinic building and is open Monday to Friday, 9:00 to 16:30. You can also call the information point on (020) Rights and obligations Information is something that every patient (or parent) has a right to. The VU University Medical Center has produced a [Dutch-language] leaflet Rechten en plichten setting out what patients rights and obligations are in relation to privacy, use of personal data, access to medical records, professional confidentiality and making complaints. Copies are available from the unit and from the patient information point. Patients associations Numerous patients associations are active in the Netherlands. A patients association is a group that works on behalf of people who have a particular illness. There are also several organizations that represent patients in general. Patients associations are often a good source of information. They also bring together people with similar problems, enabling them to share experiences and support one another. Information about associations such as The Association of Parents of Children in Intensive Care is available from the patient information point and from the receptionist or nurse at the Neonatal ICU. 10

11 Finally If you have any questions, please feel free to ask the nurse who is looking after your baby or the nursing team leaders at the Neonatal ICU. A team leader is on duty every weekday between 7:30 and 16:30. The nursing team leaders room is next to the administrative reception desk in the corridor. Further information about what happens when a child is admitted to the Paediatric Unit is provided in the [Dutch-language] booklet Opname in de kinderkliniek. If you would like a copy, please ask the receptionist. Site address VU University Medical Center De Boelelaan HV Amsterdam Tel. (020) Postal address VU University Medical Center [insert baby s name and ward where he/she is being cared for] Postbus MB Amsterdam Unit phone numbers Neonatal ICU, location 8D105 General: (020) Unit 1 (8 D 109): (020) or Unit 2 (8 D 101): (020) or

12 888014E VU University Medical Center Juni