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									                        PREMATURE BIRTH: COPING TIPS FOR PARENTS
                                  Elizabeth A. Pector, M.D.

                                                                          NOVEMBER, 2000

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

        MOST (Mothers of Supertwins),Inc.     PO Box 306 East Islip, NY 11730     631.859.1110
                                  Elizabeth A. Pector, M.D.

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

        MOST (Mothers of Supertwins),Inc.       PO Box 306 East Islip, NY 11730      631.859.1110
                                  Elizabeth A. Pector, M.D.

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

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

        MOST (Mothers of Supertwins),Inc.      PO Box 306 East Islip, NY 11730      631.859.1110
                                  Elizabeth A. Pector, M.D.

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 follow-up 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

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

        MOST (Mothers of Supertwins),Inc.       PO Box 306 East Islip, NY 11730      631.859.1110
                                  Elizabeth A. Pector, M.D.

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!

        MOST (Mothers of Supertwins),Inc.     PO Box 306 East Islip, NY 11730     631.859.1110
                                 Premature Multiples

Parent with premature multiples may experience a roller-coaster of intense and often
conflicting emotions. The joy felt when one baby is doing well, might be overshadowed
by the setbacks of another or the complications of yet another. The range of emotions felt
at one time can be overwhelming. Leaving the hospital without your babies seems so
unnatural and many parents say was the hardest thing they ever did. Parental stress may
isolate the parents from their babies, but while parents may feel there is little they can do
to cope, there are a number of things they can do to help. Here are a few tips to start:

Tips for Coping with a Premature Birth

   •   Think about how you as a have handled other crises situations.
   •   Seek ideas from others parents of preterm multiples that worked for them.
   •   Name the babies. (Some parents of extremely early preemies find it difficult to
       even name their babies, fearing they will die.)
   •   Understand that feeling stunned, frightened, and overwhelmed by the NICU is
       normal at first.
   •   Think about the good job you did during the pregnancy; mothers tend to feel very
       guilty that they couldn’t carry the babies longer.
   •   Take care of yourselves and each other physically by getting enough food and rest
       to keep up health and spirits. You will need it when the babies start coming home.
   •   Take care of your mental well-being through good communication and
       acknowledging you may have separate needs and may handle the situation
   •   Don’t be afraid to express emotions when needed: crying, screaming, getting
       angry, being afraid, etc.
   •   Engage in walking and other physical activities to work off anger and other
       emotions. Sometimes one or both parents’ need to remove themselves from the
       tension temporarily in order to “regroup.” Taking a break is okay as long as it is
       just temporary.
   •   Write letters to yourselves or to the babies. This is a good way of working through
   •   Talk to family members, friends, support groups, religious leaders, social workers
       and professional counselors if needed.
   •   Setup an online support system: Another option for support is a MOST CarePage.
       CarePages are private personalized web pages provided as a free service to
       families by MOST and PreemieCare that help families receive support from
       friends and family, allow invited visitors to send messages of encouragement,
       giving hope in the most difficult situations, update family and friends without
       repeated phone calls or emails, control the flow of information sharing news at a
       time that’s right for you. To learn more visit
   •   Always believe in miracles!

MOST (Mothers of Supertwins)        PO Box 306 East Islip, NY 11730         631.859.1110

Appearance of a Preemie at Birth

Medical advances in the treatment of preterm infants have dramatically improved the
survival of babies born as early as 24 weeks, some weighing as little as one pound.
Despite these miracles, the struggle of a very very premature baby isn’t easy and
frequently fraught with setbacks and complications.

A preemie’s appearance depends on his or her gestation of birth.


   •   24 weeks: about 1 lb-12 oz/12.5 inches
   •   28 weeks: about 2 lb-7 oz/15 inches
   •   32 weeks: about 3 lb-10 oz/16 inches
   •   34 weeks: about 4 lb-10 oz
   •   35 weeks: about 5 ½ pounds


   •   24 weeks: red and immature, with shiny transparent appearance which allows the
       blood vessels beneath to be seen easily
   •   28 weeks: less red and less transparent, veins can still be seen
   •   32 weeks: pale pink, thick, and may be peeling, only a few of the larger blood
       vessels may be seen
   •   NOTE: preterm babies may lack the dark complexion of their parents until close
       to term gestation


   •   24 weeks: have eyebrows and eyelashes
   •   28 weeks: thick vernix (cheese-like oily protective layer) covers the skin and
       long, thick lanugo (soft downy hair) is present
   •   32 weeks: vernix still covering skin but lanugo may be thinning

Eyes and Ears

   •   24 weeks: eyelids fused, earlobes flat and soft and can be folded easily
   •   28 weeks: eyelids open, earlobes are soft and easily folded but will spring back
   •   32 weeks: earlobes are soft but show some cartilage development and will spring
       back when folded

Hands and Feet

   •   24 weeks: no creases on soles
   •   28 weeks: nails are developed and the baby may have faint red marks that are the
       beginning of creases on soles

MOST (Mothers of Supertwins)      PO Box 306 East Islip, NY 11730         631.859.1110

   •   32 weeks: definite creases on soles near toes

Muscle Tone

   •   24 weeks: muscle tone not yet developed, so limited ability to bend arms and legs
   •   28 weeks: some fat and muscle tissue under the skin and can bend arms and legs a
       bit: movements will be jittery
   •   32 weeks: has developed some muscle tone and can keep arms and legs slightly
       bent at rest. Movements will be disorganized. Babies will start to coordinate
       sucking and swallowing, so feedings may begin.


   •   25-29 weeks: babies will be sleeping 80% of the time, remaining more or less in a
       drowsy and sleepy state. Babies will show little capacity to remain alert, and
       therefore have only rare social interactions. Babies will be able to hear parents’
       voice and remember it from the womb.

   •   30-34 weeks: babies show longer periods of alertness, up to 10 minutes or more,
       alternating between drowsiness and fussiness. Babies are able to show brief
       attention to a caregiver.

   •   35-37 weeks: generally considered “term” for higher-order multiples, but still
       have an immature nervous system and need to be handled gently to avoid over-

Parents expecting multiples often want to know if their multiples will even need to stay in
the NICU, and if so, for how long. They also want to know about the prognosis for babies
born prematurely. While each preemie faces different challenges, parents should know
that even babies born as early as 28 have a 90% chance of survival, so there is much
reason for hope. Many babies born before 37 weeks gestation may spend a day or two on
the Neonatal Intensive Care Unit (NICU) nursery or the transitional (sometimes called
step down) unit. Since almost all higher order multiple infants are born before this time
most spend at least some time in the NICU.

Time spent in the NICU depends on gestation at delivery, general health of the infant,
and any complications. Infants must be able to maintain body temperature, breathe on
their own, and in most cases feed from a bottle or breast. Though weight gain is
important, premature infants are not released from the NICU based on a set weight goal.
Below is a gestation-by-gestation breakdown:

   •   Week 20-24: this gestation is the borderline for viability. Many babies born at this
       gestation do not survive, and those that do often have significant medical or
       developmental problems long-term. The length of the hospital stay can be quite
       long ranging in months.

MOST (Mothers of Supertwins)       PO Box 306 East Islip, NY 11730        631.859.1110

   •  Week 25-27: at this gestation, the odds of survival are better, but the NICU stay
      will still be very long and the babies may face significant medical or
      developmental problems short-term and some long-term.
  • Week 28: (the magic number!) 90% of all babies born at 28 weeks will survive,
      although they will likely have some initial challenges soon after delivery and a
      chance of long-term problems associated with prematurity. The length of an
      NICU stay for this gestation can vary greatly, but parents should plan on babies
      being hospitalized for 6 or more weeks.
  • Week 29-32: this is the average gestation of quadruplets, but many triplets are
      also born at this time. The outcome for babies born at this gestation may depend
      on the prenatal care the mother received and any specific complications
      encountered in the NICU. The baby’s lungs, brain, circulatory system, intestinal
      system and eyes may be immature, so they may be in the NICU for 4-6 weeks.
  • Week 33-34: this is the average gestation for triplets, and babies born at this
      gestation would have fewer, if any, challenges at the time of delivery related to
      prematurity. Typically these babies do not have long-term problems, and would
      be expected to remain in the hospital for about 2 -3 weeks.
  • Week 35-36: this is the average gestation for twins, and babies born at this
      gestation experience few if any problems related to prematurity at the time of
      delivery. The babies would likely remain in the hospital for 7-10 days, and most
      babies born at this gestation do not have any long-term problems associated with
Questions to Ask About the NICU Environment:
  • Is the noise level in an intensive care unit over-stimulating? (NICU noise levels
      have been compared to a bus engine starting, so decreasing the noise and lighting
      levels in NICUs may improved neonatal outcomes.)
  • Does the NICU use Newborn Individualized Developmental Care and Assessment
      Programs (NIDCAP) to teach caregivers to work with the babies instead of
      against them by avoiding unintentional over-stimulation?
  • Are the NICU visiting hours adequate for parents with several babies in NICU?
      Will they extend their hours to meet the needs of multiple birth families?
  • Can the babies be situated near each other?
  • Is there a coordinator who can act as a liaison between you and the staff available
      so you can meet all doctors involved?
  • Does the NICU have a parent support person for families with multiples?
  • Do professionals treat the babies as a group, or as individuals?
  • Does the staff encourage you to participate in their infants’ care (i.e. baths, diaper
      changes, tube feedings)?
  • Does the hospital have a high-risk clinic to follow the babies’ progress after
      discharge? If not, will someone coordinate discharge needs and services?
  • Do you know your rights? For example, do you know what you are allowed to
      check and read (i.e. lab results, progress notes in chart)?
  • Are you provided a list of resources and encouraged to get information? Are
      books available? For example, can they provide you information about how to
      find preemie clothes, premature baby books, etc?
  • Does the staff support and encourage breastfeeding multiples? Are mothers
      offered breastfeeding instructions or just encouraged to use a breast pump? Are
      Certified Lactation Consultants available?

MOST (Mothers of Supertwins)       PO Box 306 East Islip, NY 11730       631.859.1110

   •   Will you be informed about what behavior to watch for in your preemies prior to
       discharge (i.e. baby may be more fussy, startle easily, etc.)?
   •   Is an infant CPR course available to you and your family members? (Since
       multiple birth families often rely on family members to help care for one or more
       babies on occasion, other family members may need CPR instruction.)
   •   Are discharged babies allowed back when you visit remaining hospitalized
   •   Is the staff supportive when you can’t return to visit hospitalized infants because
       you have no one available to care for the discharged babies or siblings?

   Rights of Parents While Babies are in the NICU:
   • Physicians should explain all procedures, test results and the treatment plan.
   • Physicians want the parents to know all the facts so they can make an informed
   • Parents have the right to ask questions and keep asking until they understand.
   • Physicians and nurses should explain medical conditions and treatments in terms
      that are understandable by the parents.
   • Parents should be encouraged to write everything down, questions and answers, to
      avoid misunderstandings later.
   • Unless the situation is an emergency, parents can ask for more time to make
      decisions if needed.
   • Parents should be encouraged to get involved with the health care process. Some
      parents may feel afraid and powerless; they still have the RIGHT to know all the
      facts about their children.

Sometimes parents can feel like an outsider in their babies’ lives since the nurses and
doctors are taking care of them. With so many babies to care for, how can parents be
more involved and keep track of what is happening since they cannot be at the hospital 24
hours a day? The first step parents can take is to get to know the people who are caring
for the babies. Talk with the Neonatologist, residents, and neonatal nurse practitioner on a
regular basis. Inquire about ways to contribute to each baby’s care. Based on the infant’s
medical condition, parents can participate by changing diapers, giving baths, learning
about procedures and medications, providing skin-to-skin care, helping with feedings,
holding the infants, and other tasks. Here are some additional suggestions

Parental Involvement in Care:
   • Trust your ability to parent by reminding yourself that the babies need their
      parents’ love and touch (something the staff cannot duplicate). Some premature
      babies appear to disapproves of or reject parenting since they are often fussier and
      have difficulty maintaining a steady gaze. This can be particularly distressing for
      a new mom, but don’t let this discourage you.
   • Use the “en face” position where your head is aligned with the baby’s as the baby
      lies in your arms. This increases the chances of interaction and makes it easier for

MOST (Mothers of Supertwins)       PO Box 306 East Islip, NY 11730         631.859.1110

       the baby to see you. Eye contact is important. The perfect distance from baby’s
       eyes is 8-12”.
   •   Look beyond the tubes and wires and get involved in the daily care. Parents can
       help with tube feedings, baths, diaper changes and holding during procedures if
       warranted. (Always check with staff first!).
   •   Ask the nurses when the babies have their most wakeful period and try to visit
       during those times.
   •   Touch your babies. Premature babies who are rocked, touched, fondled and
       cuddled daily may have fewer apnea spells, increased weight gain, fewer stools
       and are advanced in some areas of higher central nervous system functioning.
       (Just take care not to over-stimulate them.)
   •   Take the time to get to know each baby individually.
   •   Remember that rest is very important for preemies!
   •   When the babies are ready, consider dressing the babies in their own clothes or
       put headbands on the girls. This personalization is often an emotional transition
       for parents making the babies feel more like their own and less a part of the
       hospital. (A complete list of suggested layette items for triplets or more is
       included in this booklet.)
   •   Check hospital regulations about whether decorating isolettes with photos of
       parents and siblings and toys is permitted.
   •   Both mom and dad can make a tape of their voice reading a story or just talking
       softly to the babies to be played when they are not present.
   •   MOST’s NICU Notebook is a great place to record each baby’s milestones, as
       well as parents’ thoughts, fears and hopes.
   •   Ask about doing Skin-to-Skin Care (previously called Kangaroo Care.) This is the
       practice of holding a premature infant dressed only in a diaper and a hat between
       a mother’s bare breasts or father's chest, similar to a kangaroo carrying their
       young and promotes parent/infant bonding for premature babies. Skin-to-skin
       contact is a small way of empowering parents; through contact with their parents’
       skin, the babies are kept warm and can engage in close interaction with their
       parents. This activity has not been shown to have any physical risks to the preterm
       babies and can actually improve outcome as it increases oxygenation by
       improving breathing. Skin-to-skin care also contributes to better sleep, weight
       gain, temperature control, behavior management, breathing, and breastfeeding.
       The practice of skin-to-skin contact was first introduced to neonatal units to
       involve parents in the care of their preemies and to decrease some of the stress
       associated with neonatal intensive care. Parents who have participated in skin-to-
       skin care have expressed excitement and joy with the practice, and many feel like
       parents for the first time since their infant's birth.

Signs of Calming:

Researchers have observed that when a mother imitates her baby’s movements, she
moves slower than she normally would and looks at the baby for longer periods of time.
For preemies, vigorous approaches or over-stimulation may be counter-productive.
Mothers of preemies may find that their babies’ cues are less clear and harder to follow
than full-term babies, so mothers will need to observe very carefully for developing
patterns. Each baby has his or her own very subtle response to the sounds a mother or

MOST (Mothers of Supertwins)       PO Box 306 East Islip, NY 11730       631.859.1110

father make. For example, the baby may raise his or her eyebrows, curl toes, point a
finger, etc.

The following list contains just some of the signs of calming:
   • Relaxing of muscles
   • Cessation of crying
   • Eyes opening and trying to focus
   • Turning of head to gentle sound such as voice
   • Fingers relaxing
   • Less spitting up, hiccoughing, stools
   • Sucking motion with lips
   • Falling asleep (from feeling secure and comfortable, not as an escape from loud
       noise, etc)

MOST (Mothers of Supertwins)       PO Box 306 East Islip, NY 11730       631.859.1110

                                      Multiples in the NICU

Will my multiples need to stay in the NICU, and if so, for how long?

Many babies born before 37 weeks gestation may spend a day or two on the Neonatal Intensive Care
Unit (NICU) nursery or the transitional (sometimes called step down) unit. Since almost all higher order
multiple infants are born before this time most spend at least some time in the NICU.

Time spent in the NICU depends on gestation at delivery, general health of the infant, and any
complications. Infants must be able to maintain body temperature, breathe on their own, and in most
cases feed from a bottle or breast. Though weight gain is important, premature infants are not released
from the NICU based on a set weight goal. The MOST Birth Survey showed average NICU stays as

                                Average days in the NICU by Multiple Type and
                               Gestation      Triplets Quadruplets       Quintuplets
                                25 weeks       113.5         90.0            83.0
                                26 weeks        90.0         76.4            80.6
                                27 weeks        82.0         52.9            75.8
                                28 weeks        55.2         63.4            58.3
                                29 weeks        46.9         47.9            49.0
                                30 weeks        39.6         39.2            48.5
                                31 weeks        30.7         28.6            38.3
                                32 weeks        22.6         24.5            30.2
                                33 weeks        16.8         18.3            7.0
                                34 weeks        11.4          8.5            20.2
                                35 weeks         6.2          8.1
                                36 weeks         3.0          5.7            2.0
                                37 weeks         3.5          0.2
                               38 weeks          9.3

*Note: Hospital stays for infants born after 35 weeks may vary depending on the size and overall
health of the babies.

MOST (Mothers of Supertwins), Inc.         PO Box 306 East Islip, NY 11730                  631.859.1110


For more information on infant NICU stays, visit the MOST Supertwins Statistics page.

For information on premature infants, visit MOST's daughter organization

The doctors and nurses tell me how big my babies are in grams, but I’m more familiar with
pounds and ounces. Where can I find out how to convert grams to pounds and ounces?

MOST provides two resources to help parents of multiples in the NICU convert grams to pounds and
ounces. The first is an interactive weight calculator and the second is a conversion chart.


Try MOST's online weight calculator to perform
conversion calculations.

Print MOST's weight conversion chart and take it
with you to the hospital for reference there.

What are the most common complications my multiple birth infants will face?

Infant complications generally depend on the delivery gestation. If a mom delivers at 35 weeks, the
babies may just need a little time to feed and grow. However, if delivery occurs between 23- 28 weeks,
the babies would face significantly more challenges and spend many more days in the NICU.

Babies born prematurely frequently experience problems coordinating the sucking, swallowing, and
breathing process which may mean the infant requires a feeding tube. Other medical complications of
multiple births include jaundice, breathing problems requiring intubation or surfactant treatment for
lungs, and blood transfusions.

Although not as frequent, more serious complications such as intraventricular hemorrhage (IVH),
periventricular leukomalacia (PVL), necrotizing enterocolitis (NEC), retinopathy of prematurity (ROP),
and infection can occur especially if delivery is before 30 weeks.


For information about the medical terminology and tests related to infants in the NICU visit the NICU
Glossary online.

The NICU Notebook          is available
for purchase in the MOST Supertwins store.

MOST (Mothers of Supertwins), Inc.   PO Box 306 East Islip, NY 11730                        631.859.1110
MOST is also proud to offer Your Premature Baby by Frank Manginello, MD and
Theresa Foy DiGeronimo, M.Ed.

What do all these medical acronyms mean doctors use when referring to my multiples’
medical conditions and treatments?

The medical terminology can be overwhelming to new parents at first, but many parents find they learn
quickly in order to communicate with doctors and other health care professionals.

Many books and online sources provide detailed information for a large variety of medical conditions,
treatments, and terminology.


Visit       for more information.

For information about the medical terminology and tests related to infants in the NICU visit the NICU
Glossary online.

I feel like I am an outsider in my babies’ lives since the nurses and doctors are taking care of them. With so
many, how can I be more involved and keep track of what is happening since I am not at the hospital 24
hours a day?

First, get to know the people who are caring for your babies. Talk with the neonatologist, residents, and
neonatal nurse practitioner on a regular basis. Inquire about ways to contribute to each baby’s care.
Based on the infant’s medical condition, parents can participate by changing diapers, giving baths,
learning about procedures and medications, providing Kangaroo care, helping with feedings, holding
the infants, and other tasks.


See Dr. Beth Pector's VOICES in the NICU (Word Document)
The MOST Family Support Forums provide a place for famillies of
multiples to share tips on how to survive those challenging early days with triplets or more.

MOST also offers its Infant Multiples booklet with chapters containing in-depth information on coping with
multiple babies in the NICU.

Print MOST's weight conversion chart and
take it with you to the hospital for reference there.

Download a complimentary copy of the For Those Who Hold the Littlest Hands eBook

How do I deal with the insurance issues and hospital bills?

Medical bills are just another distraction for many new            parents of multiples. Remember, your
insurance plan’s customer service representatives and              employer's human resource departments

MOST (Mothers of Supertwins), Inc.      PO Box 306 East Islip, NY 11730                            631.859.1110
are there to help you. Their job includes answering questions about your benefits. MOST offers these

    •   Start by putting the multiples on the insurance policy as soon as possible.
    •   Request help from the hospital’s social worker or the NICU case manger.
    •   Stay clear and calm when making contact with billing offices and insurance companies.
    •   Become an educated healthcare consumer. Find out the latest recommendations on your issue
        from the appropriate national medical academy.
    •   Know the benefits available to you through your employer.
    •   Know how to appeal a decision from an insurance company.
    •   Don’t give up. If at first you don’t succeed ask to speak to someone of higher authority



The MOST website has a resource called Communicating with Insurance Companies available on this website that outlines these tips in greater

MCH Library resources on health insurance

Can parents of multiples participate in skin-to-skin (kangaroo) care?

Mothers and fathers of multiples should be encouraged to participate in skin-to-skin (kangaroo) care as
soon as medically possible for the infants in the NICU. Some parents eventually give skin-to-skin care
with more than one infant at a time. Skin-to-skin care helps a mother’s breast milk come in, and both
parents are strongly encourage to participate since this is often quite helpful in building a strong bond
with each of the babies before being discharged from the hospital.


The MOST Infant Multiples Booklet explains the benefits of skin-to-skin (kangaroo) care and
considerations to discuss with your health care team

What type of research is being done, and what statistics are available on multiple births?

Only a few organizations conduct research on multiple birth research each year, and the majority of
those focus on twins. Two of the more recognized research organizations include The Center for Study
of Multiple Birth - known internationally as a unique resource for research and information about the
causes, effects and problems of multi-fetal pregnancy, and the International Society for Twin Studies
which sponsors events, publishes a journal, and maintains membership information.


Visit The Center for Study of Multiple Birth

Visit International Society for Twin Studies            (a MOST
partner )

MOST (Mothers of Supertwins), Inc.    PO Box 306 East Islip, NY 11730                        631.859.1110
MOST posts summaries of recent medical research on multiples and premature infants on the MOST
Medical News page.

MOST also maintains a commitment to providing parents, multiples, researchers, as well as medical
and educational professionals current statistics and trends regarding multiple births. MOST currently
has several ongoing research studies.

The results from previous MOST studies are also available on our Supertwins Statistics page

How do I visit one or more multiple in the hospital once the one or more of the other babies
go home?

Having babies in the hospital and at home is probably one of the most difficult experiences a new
parent of multiples may face. Many parents expressed feelings of guilt during this time because they
frequently felt that when they were at the hospital they should really be at home helping, and when
they were home they felt guilty about the little one(s) still in the hospital. Many mothers feel as if they
should be at the hospital every day, but that isn’t always possible. Appropriate childcare for your
preemies at home may not be available on a daily basis. Mothers must also appreciate that they have
just had major abdominal surgery which requires time to recuperate and have newborns at home.
Visiting the baby(ies) in the hospital as often as possible is ideal, but be kind to yourself; you can only
be in one place at one time and remember, this situation is very temporary.


For more information, the MOST Infant Multiples Booklet offers information on handling the
demands of infants at home and in the hospital.

The MOST Breastfeeding Multiples
booklet also has information on this topic for mothers who are breastfeeding.

Both booklets are also sold as a combo Infant Multiples/Breastfeeding packet

How can I get through the grief to care for my other children should one or more of my
multiples die?

Parents who lose one or more, but not all, of their multiples, may feel that family members and friends,
as well as their medical professionals underestimate their intense feelings of grief. Though well-
intentioned, members of a parent’s support network often fail to realize that grief for the loss of one or
more multiple is just as intense as the grief experienced after any child’s death. Comments like “At
least you have one [two, three] left” or “Focus on the living. Your survivors need you, and you would
have had your hands full anyway” are not uncommon, but may be hurtful to parents.

In addition, the burden of caring for surviving children, often facing complex needs, may interfere or
even postpone the grieving process for these parents.

At first, some parents may avoid bonding to surviving multiples for fear of additional losses; however
other parents become hyper-attentive and possibly overprotective. “Compared with parents of intact
sets of twins, parents of sole surviving twins have a greater risk of depression 5 years after the birth”
(Pector & Smith-Levitin). Although each parent grieves        uniquely, some parents of multiples have

MOST (Mothers of Supertwins), Inc.     PO Box 306 East Islip, NY 11730                         631.859.1110
found the following helpful:

    •   Acknowledge each deceased child as an individual.
    •   Preserve memories through pictures and keepsakes.
    •   Request some private time with the deceased baby to say good-bye even if the viewing must be
        delayed due to medical complications in the mother.
    •   For infants lost after 20 weeks gestation, discuss funeral options with the hospital or health care
    •   Don’t hesitate to request that medical professionals take special care in protecting your family’s
        privacy during this time.


The above information was provided by Elizabeth Pector M.D., and Michelle Smith-Levitin, M.D.

Parents who experience a loss may want to visit Dr. Pector’s website

Bereavement resources: Multiplicity

Bereavement support: The Center for Loss in Multiple Births

Bereavement information and support: Multiple Births: Parent Education & Bereavement Support

MOST offers bereavement support to families of multiples who experience a loss. See our Memorial

MOST also provides an extensive list of other bereavement related links

MOST (Mothers of Supertwins), Inc.     PO Box 306 East Islip, NY 11730                         631.859.1110
                             MOST (Mothers of Supertwins)
                                      PO Box 306
                              East Islip, NY 11730-0306

               Weight Conversion Chart
               0     1      2      3      4      5      6      7      8      9
         0    0     454   907    1361   1814   2266   2722   3175   3629   4082
         1    28    482   936    1399   1843   2268   2750   3203   3657   4111
         2    57    510   964    1417   1871   2325   2778   3232   3695   4139
         3    85    539   992    1446   1899   2353   2807   3260   3714   4167
         4    113   567   1021   1474   1928   2381   2835   3289   3742   4196
         5    142   595   1049   1503   1956   2410   2863   3317   3770   4224

         6    170   624   1077   1531   1984   2438   2892   3345   3799   4252
         7    198   652   1106   1559   2013   2466   2920   3374   3827   4281
         8    227   680   1134   1568   2041   2495   2948   3402   3856   4309
         9    255   709   1162   1616   2070   2523   2977   3430   3884   4337
         10   283   737   1191   1644   2098   2551   3005   3459   3912   4366
         11   312   765   1219   1673   2126   2580   3033   3487   3941   4394
         12   340   794   1247   1701   2155   2608   3062   3515   3969   4423
         13   369   822   1276   1729   2183   2637   3090   3544   3997   4451
         14   397   850   1304   1758   2211   2665   3118   3572   4026   4479
         15   425   879   1332   1786   2240   2693   3147   3600   4054   4508

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 will give you pounds and
the number to the left side of the column will give you ounces.

                                                               Updated 8/31/07
                                   Additional NICU Information

                       Usually around 34 weeks gestation discharge planning will begin with babies
                       arriving home around the 35th week. The earlier the gestational age at birth, the
                       later the discharge gestational age may be as the babies have a greater chance of
                       significant complications. (Note: very premature babies or low birth weight
                       babies, 2.5 pounds or less, may not be well enough until after the 40th week

A premature baby is ready to be discharged when he or she has:

   •   A sucking ability that allows the baby to take in enough calories from breast milk or formula
       orally to continue to grow.
   •   A body weight of around 4-5 pounds, but most NICUs do not impose an absolute
       requirement, rather base readiness on when the babies are healthy and mature enough.
   •   Weight gain that is actual body mass (not water weight) and is from a slow steady increase,
       rather than ups and downs.
   •   Good temperature control.
   •   Medical problems that are resolved or stable enough that some procedures can be done at a
       later date.
   •   Parents who feel secure with their ability to care for the babies. (Volunteers should encourage
       parents to speak honestly with physicians and or social workers about any fears or
       reservations. Remember that first time parents will not be as comfortable with their parenting
       skills. The medical team will feel more comfortable letting infants go home if parents visit
       often and demonstrate willingness to learn caretaking techniques-babies may actually go
       home earlier!)
   •   All necessary equipment (oxygen, monitors) and parents have received adequate training
       (CPR for all caretakers)
   •   A home free of infection.

Phases of homecoming

   1. Honeymoon: parents are excited and able to accept anything even a lack of sleep, excessive
      crying, etc. Parents may be numb to responsibility. Commonly lasts 7-10 days.
   2. Realization of Exhaustion: new parents finally recognize their emotions. Fears of not being
      able to take care of infants as hospital staff did. Babies take more time and energy than
      expected. Parents (especially fathers) begin to feel frustrated, perhaps angry, at lack of
      personal freedom. Mother, home all day with babies, may feel isolated and trapped. Siblings
      are stressed as the attention the babies receive is still very intense.
   3. Acceptance: the family forms some type of schedule. Parents find
      out they are able to handle problems and accept themselves as
   4. Delayed Post Partum Depression: mother may have delayed
      depression, as a letdown after the tension of the hospitalization.
      She may feel weepy and have emotional swings. This may also be
      in response to anticipated fears, even if babies are healthy.
                                      Breastfeeding Multiples
Will I be able to breastfeed my new triplets, quadruplets, quintuplets, sextuplets?

MOST strongly encourages all mothers to consider providing breast milk for their babies and offers a
variety of support options to help you have a positive breastfeeding experience. Though not all
mothers of multiples breastfeed, a significant percentage mothers of higher order multiples do
successfully breastfeed their infants. Below are some statistics from the MOST Birth Survey on

                 Type of       Percent of mothers who             Average time some
                Multiples     provided some breast milk          breast milk provided
                   Twins                 69.2%                           14.0 weeks
                  Triplets               68.9%                           13.6 weeks
               Quadruplets               72.6%                           13.4 weeks
                Quintuplets              76.7%                           13.5 weeks
                Sextuplets               85.7%                           11.1 weeks


MOST offers the following resources on breastfeeding:

Breastfeeding Multiples booklet MOST's Infant Multiples Booklet also offers breastfeeding resources.
Both the combo package of both the Infant Multiples and Breastfeeding Booklets and SAVE!

For detailed information about breastfeeding, see the book The Womanly Art to Breastfeeding by
Judy Torgus, Gwen Gorsch available for purchase in the MOST Supertwins store.

MOST sells a large double nursing pillow designed for nursing more than one infant at a time in the
MOST Supertwins Store.

TwinsList also offers a list of FAQs on breastfeeding mutliples.

Read one mom's story about breastfeeding multiples.

Where should I begin when deciding if I want to breastfeed?

By speaking to other mothers who successfully nursed multiples, the more apt you are to learn how
to nurse your multiples and have a positive experience. Ask questions like, “What worked for them?”
“How did they manage with their other children?” “How did they manage when they had to leave the
   MOST (Mothers of Supertwins)      PO Box 306 East Islip, NY   11730                631.859.1110      1
Another good way to prepare to nurse multiples is to read many of the excellent resources
associated with nursing. Some circumstances exist where breastfeeding would not be recommended
or even possible and a new mom should not feel at all guilty if this is the case.

Breastfeeding multiples is great; you can breastfeed three or more infants providing great benefits,
but if you need to stop or cannot breastfeed at all, understand that as their mother, you still offer
important care for your new infants.

MOST's Breastfeeding Multiples booklet

Books on breastfeeding and breastfeeding supplies are available through the MOST Supertwins

MOST has several lactation consultants and many parent volunteers who are available to help
members with questions and concerns about providing breast milk for multiples.

MCH Library resources on breastfeeding

Most hospitals also have lactation consultants on staff who can help with questions or concerns.

Why should I nurse so many babies?

Breast milk is so important to a premature baby! Breastfeeding is also wonderful bonding
experience. Just because you have so many babies to breastfeed at once, why should they miss
such a wonderful experience?

Breastfeeding provide numerous health benefits for you AND the babies! Persevere if this is what
you want for your babies.


The Breastfeeding Multiples Booklet in the MOST Supertwins Store offers information about current
reseach on breastfeeding as well as the benefits of providing multiples and premature infants breast

How do I provide pumped breast milk if my babies are too small to breastfeed?

Pumping every 3 hours is ideal to build up your supply, but be kind to yourself appreciating you
have just had major abdominal surgery and need time to heal and grow strong yourself. Many
hospitals have pumps available, or you may want to rent or buy.

Even if you establish a good pumping system, try to make sure you have an opportunity to nurse
each of your babies at the breast prior to their discharge from the hospital so that you have the staff
resources for guidance and support. If your babies are micro-preemies, (under 2.9 pounds), or very
premature, your insurance may pay for the pump rental.


Products to assist mothers of multiples in the breastfeeding process are available in the MOST
Supertwins Store.

   MOST (Mothers of Supertwins)      PO Box 306 East Islip, NY   11730           631.859.1110           2
The Breastfeeding Multiples Booklet in the MOST Supertwins Store contains a whole chapter on
pumping for multiples.

Will I have enough milk to feed ALL of my babies?

One of the most amazing aspects of a mothers’ body is that milk production is a matter of supply
and demand. To help this along, treat your body as if you were still pregnant! Eating, drinking, and
sleeping are very important, and are very necessary to ensure a good milk supply. Putting the
babies to the breast often and holding infants skin-to-skin (kangaroo care) will also help increase
your milk supply.


For detailed information on breast milk supply and demand, see the book The Womanly Art to
Breastfeeding by Judy Torgus, Gwen Gorsch available for purchase in the MOST Supertwins store.

Will I be able to breastfeed two of my babies at once?

Yes, in time, with patience and love, and when your babies are strong enough to
both latch on (sometimes not until at or about when they are 10 lbs.) you will be
able to feed them at the same time. Double nursing is a great time saver.

Don’t get discouraged if it doesn’t work for you the first few times you attempt to nurse
simultaneously. The process takes time, and is a learned task. An extra set of hands to help you get
into position is helpful a well.


MOST sells a Large Double Nursing Pillow designed for double nursing in the MOST Supertwins

Will my babies be able to nurse if they are premature?

Most higher order multiples are born premature. If your babies are born before 32-34 weeks, they
may not be able to nurse at the breast right away. They may be gavage fed via a tiny tube inserted
in the nose or mouth that goes to their stomach. In this case, you can pump (express) your milk to
feed them.

Usually babies, if otherwise healthy, born after 34 weeks, and some born even earlier, can suck,
swallow and breathe at the same time and this is often the criteria for nursing at the breast. Each
baby is different and each nursing experience is different. Having a professional to turn to while you
are getting to know each baby’s nursing style is very important. Many hospitals have lactations
consultants to help you.


The MOST Breastfeeding Multiples booklet also offers in depth information on breastfeeding

Please Note:
MOST provides these FAQs for informational purposes and cautions visitors not to use the content below to make treatment decisions
without personally consulting a qualified health care provider. Reuse of this content without proper citation is a violation of copyright.
To obtain permission to use Supertwins 101 content contact MOST.

    MOST (Mothers of Supertwins)                  PO Box 306 East Islip, NY          11730                   631.859.1110                3

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