Your babies have arrived two or three months ahead of schedule. You probably feel shocked, overwhelmed and fearful. As a physician and the mother of preemie twins, I share practical hints and resources to help you through the weeks ahead.
Your tasks as the parents of preemie multiples are daunting. You hope for the best, while preparing for the worst. You must acknowledge and work through feelings of failure, and grieve for the loss of the uncomplicated pregnancy and delivery you wanted. Lastly, you must begin attaching to your babies, and learn how preemies and your parenting role for them are different from the term parenting experience for which you prepared. Gaining a VOICE can help you accomplish these goals: --Verbalizing & Venting, Orientation, Information & Interaction, Comfort and Counsel, and Exit (discharge) planning.
Verbalizing & venting:
It is important to express your feelings and fears to the NICU staff and to those close to you. Many strong feelings arise when babies arrive prematurely. These may include shock, denial, numbness, anxiety about your children's condition, guilt, self-blame, feelings of failure, and anger at God, yourselves or doctors. Many parents feel isolated, hopeless and helpless. Parents often regret missing out on the rest of the pregnancy, months they expected to have to finish preparing physically and emotionally for the new members of their family. It is often hard to believe that those tiny infants in isolettes, so different from the chubby-cheeked babies you dreamed about, are really yours. Your babies' caregivers understand that parents have conflicting emotions, and can help you sort out these feelings.
Parents of preemie twins tend to feel more stress than parents of NICU singletons. Mothers of NICU babies experience most stress in the first few weeks. Anxiety is usually greatest immediately after birth, at times when a baby's medical status is unstable, and when preparing for discharge. Fathers also have significant stress, and may feel lost amid the attention given to mother and babies. If you feel torn between supporting your spouse and interacting with your children, talk with the staff, who can help you determine which family members most need your presence at any given moment. Many fathers feel they must take on a problem-solving role, making decisions alone and "staying strong for the family." It is helpful for dads with preemie multiples to share their burden with others in their family or support network.
Orientation to NICU and to your children:
Neonatal intensive care is an unfamiliar, sometimes frightening place. It can help to get an official welcome and tour after you've been introduced to each of your babies. Find out as much as you can about the routine: handwashing procedures, visiting hours and visitor restrictions, when nurses change shifts, and when doctors make rounds. Ask if twins or even triplets might be co-bedded (sharing an isolette), and what the risks and benefits of this practice could be for your children. Learn how, and from whom, you'll get updates: in person, or by phone? From the doctor, or the nurse? Give the staff your cell phone and pager number, so they can always reach you if necessary.
The greatest source of stress in NICU is not the technical surroundings, but the alteration in your parenting role. You have become parents sooner than expected, with tiny, critically ill children. You were probably separated from your babies soon after delivery, traumatized by the need to entrust their care to strangers--even though they are highly skilled medical experts. Your babies' appearance may provoke anxiety. Small, wrinkled, surrounded by tubes and wires, and often on a ventilator, they may seem to be suffering. Preemies don't give much feedback for weeks or months, and can be disturbed by parents' early attempts to touch and talk. NICU staff can teach you the best times to interact with your children--usually when they're quiet and alert. You can learn to touch them gently, and when they are medically stable, you can hold them skin-to-skin (kangaroo care). Staff members will help you recognize the subtle signs that show that your children are happy you're there.
The technology of NICU is confusing. Ask for explanations of how ventilators, machines and monitors are helping your babies. Also request handouts that explain the medical jargon you'll be hearing. With time, you will learn to do more and more of your children's care, and gradually ease into your expected role as a parent.
With wildly fluctuating emotions, it can be very difficult to absorb all of the information you are given. Parents' need for information at the time of crisis is greatest, yet their ability to ask for, and understand, information is at its lowest. Most parents find that having nurses and doctors write down the most important points during daily updates helps them to comprehend and retain information better. Discussing each child separately helps you and the staff learn the unique features of each baby from the very beginning. Short pamphlets on specific topics can be quite helpful. Long books or chapters about prematurity or preemie multiples can be overwhelming right after birth. They are wonderful resources, but in the first few days and weeks it is easier to focus on the essential facts relevant for your babies. Periodic team meetings with doctors, nurses, social workers and/or clergy can be useful, especially when a child is in unstable condition; if critical decisions must be made; when many specialists are involved; and anytime you feel confused about what's happening with one or more of the children.
Parents are an important source of information themselves, especially in a teaching hospital where the attending doctors and residents change frequently. You have been there since before birth, know each baby's history intimately, and often remember important medical events in NICU that new caregivers haven't yet reviewed in the chart. Some parents find it helpful to attend daily rounds with the doctors, and they often contribute insightful observations. You are a partner in your children's care, and your input is needed from the start.
Controlling information flow to family, friends and coworkers is challenging. Most parents have very little energy to make dozens of daily phone calls to concerned acquaintances, and the excitement of multiples brings even more interested bystanders out of the woodwork. Parents devise different ways to cope with this dilemma. Some appoint a family spokesperson to get the word out, while others update voicemail, answering machine or website messages to share the latest details on the multiples. However you manage this, it's wise to reassure those close to you that you appreciate their concern. Their support will be indispensable in the months and years ahead. The media sometimes want to get into the act, too, especially with high-order multiples. Remember that it's entirely your decision how much to share your story with the outside world. Hospital public relations staff can protect your privacy, so don't be afraid to ask them to intervene if nosy reporters come knocking.
It is common to feel that you're a visitor and not a parent, and to envy the nurse's confidence in handling and caring for your children. However, your role as a parent is unique and irreplaceable. The more you can interact physically with your children and get involved in hands-on medical care and important decisions, the more comfortable you will feel in caring for your babies when they eventually arrive home.
Daily photos and updates will help the mom feel involved if she is at one hospital and one or more babies were transported to another. Gentle stroking is important in helping your babies get used to you. Even before you can hold them, you can sing and talk quietly, bring photos to put in the isolette, and provide tapes of your voices for nurses to play for your babies. Your multiples have heard mom's voice while in the womb, and that familiar sound reassures them after birth. Kangaroo skin-to-skin contact also helps babies thrive. It is important to try to spend approximately equal time with each child, or more time with a baby who is particularly ill. It's common to become more attached to one child than to others, but also is crucial for their long-term outcome for you to find positive, loveable aspects of each baby. To document their special relationship, get photos of the babies together, and also ask for matching mementos. Referring to each child by name and dressing them in ways that make them easy to tell apart helps you get to know your them as individuals, too.
Breastfeeding is something only a mother can offer. Lack of privacy, or a sense that you are inconveniencing the staff, might inhibit your commitment to nursing. Stress can make it difficult to establish a milk supply, and you are likely to become close friends with a breast pump for months. Many resources can help you learn to nurse from the breast as he or she grows stronger. Ask your hospital's lactation consultant and nurses, multiples clubs and organizations, and La Leche for tips on nursing a premature baby. If you don't breast feed, please know that your love and attention are just as crucial to give your baby the best start possible.
As you become comfortable, and as your babies grow, participating in daily care promotes better bonding. Diaper changes, checking vital signs, weighing the babies, giving tube feedings, bathing, choosing lotions or crib decorations give you regular input into your child's care. Your input is also important when deciding the timing of visits from grandparents or siblings, discussing changes in routine or isolette placement, and planning for discharge.
Most parents have high praise for the skill and compassion shown by their babies' medical team. However, personality conflicts and disagreements occasionally emerge between parents and NICU staff. It is reasonable to request that a nurse or doctor not be assigned to your child if you have experienced serious communication difficulties with that professional. Such situations are usually simply resolved after a brief discussion with the unit supervisor.
Community and counsel
Most parents rank their partner, their own parents, and health professionals as the greatest sources of support through the NICU parenting experience. Other resources also help. Many NICUs have a parent support group or classes for parents who have children currently in the unit. Other parents find that informal talks with fellow parents reduce their sense of isolation. Some hospitals have a formal parent-to-parent peer support system, in which trained veteran parents support new preemie parents through the roller-coaster months in NICU. An experienced parent is often a great source of practical suggestions and perspective.
Community groups that offer support for your special circumstances, such as single or teen parents, parents of multiples, or parents with disabled children, etc. can be helpful. Assistance from clergy or counselors can also be invaluable, since parents of multiples, especially preemies, are at greater risk for depression than parents of full-term singletons. Finding financial or practical assistance through community publicity aids many multiple-birth parents who are strapped for cash or sleep. Although you may not want to impose on others' generosity, multiple parents need every break they can get, especially with high-needs children.
Internet websites and support groups are helping a growing number of parents through their parenting challenges. Information from these sources may not always be up-to-date and accurate, so please review medical suggestions from these sites with your children's medical caregivers. Another caution needed in both Internet and in-person groups is that parents are sometimes very emotional, expressing strong opinions or feelings of anger or criticism that you can find hurtful. Good groups have a moderator who will ensure that respect for different parents' situations, feelings, decisions and values is maintained.
Exit (Discharge) planning
Parents usually feel a mixture of excitement and anxiety at the prospect of finally bringing their children home. They worry they won't be able to care for them as well as the NICU staff did. Ask a week or two before discharge about what medications and equipment will likely be needed at home. Gradually learning to manage medicines, oxygen, monitors, tube feedings, tracheostomies and other medical details decreases the unprepared feelings at home. Rooming-in for one or two nights before discharge, doing all of their children's care, also boosts parents' confidence. Be sure to plan for adequate home help in advance, since the usual twin juggling act becomes even more precarious when prematurity or special needs are involved. It is usually recommended that babies with similar health status come home together, since parents who bring one home one baby first sometimes show favoritism toward that child, to the detriment of their co-multiples.
A thorough pre-discharge conference with doctors, nurses, therapists and social workers to discuss your concerns will also prepare you for homecoming. Review your children's typical behavior and sleep/wake patterns, feeding instructions, expected weight gain, breathing problems, risks of illness or infection in public, and signs of illness that indicate a child needs prompt medical attention. Early followup with your babies' doctor within a week after discharge, and asking the NICU to forward a discharge summary of their NICU stay before that visit, will ensure a smooth transition between hospital and home.
Parenting a preemie
Raising a premature child is more work and less fun in the early months than raising a full-term infant. Parents initially focus on gathering practical resources to help them care for their child. Medical needs are not the only source of stress. In addition to coordinating medical care, parents of multiples often need cleaning services, dependable child care or counselors. Such resources are often vital for parents who may be juggling work demands and other family members' financial, physical and emotional needs on top of their multiples' care. About three months after discharge, most parents become less protective and concerned about medical issues, and interact more playfully with their children. Finally, by an average of five months after discharge, parents finally feel they and their preemies are truly a family. Bonding to premature twins or triplets may take a bit longer, but you will eventually fall in love with each baby's unique personality.
Mothers tend to be less involved in exploratory play with preemies than with full-term infants, and may feel overprotective. Maternal interactions with a preemie may not mirror the typical interactions of full-term parents till 12-18 months after discharge.
Fathers of preemies, in contrast, often participate more in their children's care during the first three months, with more positive interactions than fathers of term infants exhibit. They generally continue active involvement with their children during the first three years, and paternal attention correlates highly with preemies' later intellectual abilities.
Home health nurses, therapists or early intervention specialists may be involved in your children's care after they arrive home. These professionals coordinate services for children at risk for developmental delay. Many parents find these home visits anxiety-provoking or intrusive. The thought of strangers in your home focusing on your children's weaknesses or looking for new problems might be frightening. However, their assistance can improve your child's outcome, so it's wise to take advantage of what they can offer.
Down the road.
In early childhood, many preemie parents view their children as "special" because of their early start, yet somehow feel they are "normal--not typical preemies." The increased stimulation and attention derived from this attitude are good. However, excess worry about your children's susceptibility to infection or injury, the temptation to deny the existence of delays or health problems, and reluctance to set limits and discipline, present challenges for some preemie parents. Support helps many moms and dads avoid these parenting pitfalls.
Looking still further ahead . . . the prognosis for prematurely born children has never been brighter. I wish you the best of success with your unexpectedly early introduction to multiple parenting--the uniquely enriching, but nerve-wracking experience common to ALL parents of multiples, regardless of birth history!
Elizabeth A. Pector, M.D. is a board-certified family physician in Naperville, IL. Her letters and articles have been published in medical journals and lay publications. She is married, and is the mother of David, born in 1991, and twins Jared and Bryan, delivered in 1997 the day after Bryan's death from a cord accident. She has spoken on bereavement and special needs in multiples to local and national audiences, and remains interested in issues facing multiple-birth families including parent stress, prematurity, special needs, and cultural beliefs about multiple births. Visit her website at Spectrum Family Medicine for additional articles on multiples, preemies, and special needs parenting.