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NICU Support

Premature Birth: Coping Tips for Parents
by Elizabeth A. Pector, M.D.
Your baby has arrived two or three months ahead of schedule. You probably feel shocked, overwhelmed and fearful. As a physician and as the mother of a prematurely born child, I share some practical hints and resources to help you through the weeks ahead.

Your tasks as the parent of a preemie 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, delivery and parenting experience you wanted. Lastly, you must begin attaching to your preemie baby, and learn how preemies and your parenting role for them are different from the typical parenting experience for which you prepared. Gaining a VOICE can help you accomplish these goals: --Verbalizing & Venting, Orientation, Information & Interaction, Community (support), 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 child'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 member(s) of their family. It is often hard to believe that the small child in the isolette, so different from the chubby-cheeked baby you may have imagined, is really yours. Your baby's caregivers are aware that parents have conflicting emotions, and can help you sort out your feelings.

Mothers often feel great stress, especially in the first few weeks. Anxiety tends to be greatest immediately after birth, at times when the 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 baby. If you feel torn between supporting your spouse and interacting with your child, 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 to share the burden with others in your family or support network.

Orientation to NICU and to your baby:

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 your newborn child. 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. 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 a tiny, critically ill child. You were probably separated from your child soon after delivery, traumatized by the need to hand over your baby's care to strangers--even though they are highly skilled medical experts. Your baby's appearance may provoke anxiety. Small, wrinkled, surrounded by tubes and wires, and often on a ventilator, your baby 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). NICU staff members will help you recognize the subtle signs that show that your child is happy you're there.

The technology of NICU is confusing. Ask for explanations of how ventilators, machines and monitors are helping your baby. Also request handouts that explain the medical jargon you'll be hearing. With time, you will learn to do more and more of your child's care, and gradually regain your expected role as a parent.

Information:

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. Short pamphlets on specific topics also help. Long books about prematurity 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 that are relevant to your baby. Periodic team meetings with doctors, nurses, social workers and/or clergy can be useful, especially when your child is in unstable condition; if critical decisions must be made; if you have twins or more; when many specialists are involved; and anytime you feel confused about what's happening with your child.

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 your 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 child's care, and your input is needed from the very beginning.

Controlling information flow to your family, friends and coworkers is a challenge. Most parents have very little energy to make dozens of daily phone calls to concerned acquaintances. Parents have devised 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 their baby. 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.

Interaction:

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 child. However, your role as a parent is unique and irreplaceable. The more you can interact physically with your child and become involved in hands-on medical care and important decisions, the more comfortable you will feel in caring for your child when he or she eventually arrives home.

Daily photos and updates will help the mom feel involved if she is at one hospital and her baby was transported to another. Gentle stroking is important in helping your baby get used to you. Even before you can hold your child, you can sing and talk quietly to him or her, bring photos to put in the isolette, and provide tapes of your voices for nurses to play for your baby. Babies have heard their mother's voice while in the womb, and that sound is reassuring to them after birth. Kangaroo skin-to-skin contact also helps the baby thrive.

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 your baby from the breast as he or she grows stronger. Ask your hospital's lactation consultant, nurses, and La Leche for tips on nursing a premature baby. If you don't breastfeed, 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 baby grows, participating in daily care routines promotes better bonding. Diaper changes, checking vital signs, weighing the baby, 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 baby's 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. In applicable situations, groups that offer support to single or teen parents, mothers of twins, etc. can be helpful. Assistance from clergy or counselors can also be invaluable, since parents of preemies are at greater risk for depression.

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 child'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 child home. They worry they won't be able to care for the child as well as the NICU staff. 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 will prevent you from getting overwhelmed at home. Rooming-in for one or two nights before discharge, doing all of their child's care, also boosts parents' confidence.

A thorough pre-discharge conference with doctors, nurses, therapists and social workers to discuss your concerns will also prepare you for homecoming. Review your child'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 your child needs prompt medical attention. Early followup with your child's doctor within a week after discharge, and asking the NICU to forward a discharge summary of your baby's NICU stay before that visit, will ensure a smooth transition between hospital and home.

Parenting a preemie:

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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 may need home helpers, 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 preemie child's care. About three months after discharge, most parents become less protective and concerned about medical issues, and interact more playfully with their child(ren). Finally, by an average of five months after discharge, parents finally feel they and their preemie are truly a family.

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 child's care soon after he or she arrives home. These professionals coordinate services for children at risk for developmental delay. Many parents find these visits anxiety-provoking or intrusive. The thought of strangers in your home focusing on your child'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 . . .

Looking ahead to early childhood . . . many parents view their child as "special" because of their early start, yet somehow feel their child is "normal--not a typical preemie." The increased stimulation and attention derived from this attitude are good. However, excess worry about your child's vulnerability 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. Seeking support when needed 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 parenthood--the enriching, but often nerve-wracking, experience common to ALL parents, regardless of birth history!

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