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If you have experienced a preterm premature rupture of membranes (PROM)
and expect your baby or babies to spend time in the neonatal intensive care
unit (NICU) or special baby care unit (SBCU) after delivery, this article is
for you. The members of the PROM list have created this "NICU orientation" article
to share some basic information we learned from our own experiences with PROM
preemies.
This article is intended to be a general overview of NICU issues and
terminology to help ease your transition from expectant parents to active participants
in your PROM preemie's care. This article is not intended as medical advice,
and we encourage you to talk with your health care practitioner and consult
the broad range of print and online resources available for more detailed information
about preemie and postpartum conditions (see the Resources section at
the end of this article for a starting point of websites and books to read).
We also invite you to join the PROM list
so that we can support you and share our NICU and PROM experiences. Also, if
you search through the PROM stories for deliveries
after 24 weeks, you will be able to read stories of other PROM parents' experiences
in the NICU.
The NICU is a new world with a new health care team, a new vocabulary, and new milestones
for your baby and your family. To help prepare you for the "NICU rollercoaster ride," we'll
start by repeating two pieces of advice from the "New to PROM" article:
"Be your baby's advocate with your OB/Health care provider" and "Follow
your instincts".
PROM can leave you feeling completely helpless. However, you may find empowerment
in the fact that you are your baby's advocate. Be as active as you can
in the decision-making process. If you are uncomfortable making requests or
asking for another opinion, remind yourself that you are doing this for your
baby, and that your baby's health is the most important thing.
- Keep asking questions if you don't understand something or don't
have all the information you need. Wait until you feel that you have all the
information you need before you make a decision. Unless your health care team
tells you that your health or safety are in immediate danger, don't make decisions
quickly or hastily.
- Don't worry that you are being a pest by asking the hospital staff
to monitor you closely.
- Insist on being seen any time you feel that something is not right,
even if you have left the hospital. If your health care practitioner will
not schedule an appointment, go to the emergency room.
- To the extent possible, keep a written log of what you are told, by whom,
and the date and time you received the information. A written log is also
useful for keeping track of your medications, fluid intake, bathroom visits,
and pad changes (if applicable), as well as the names of the members of your
health care team.
- Join the PROM list for support as you
advocate for your baby.
.
If something doesn't feel or sound right, ask for a clarification or an explanation.
Ask more than once. You are probably experiencing shock, a psychological and
physiological condition that makes it difficult for you to move, speak coherently,
and – most importantly – make decisions. Allow extra time for information to
sink in, and to act on what you are told. Remind your health care team that
you are experiencing shock and may need more time to process information. Don't
feel pressured to make any decision immediately, and don’t just "go along" with
what your health care team is recommending if you aren't completely sure whether
it's right for you and your family.
If you are uncertain about a procedure or diagnosis, wait before acting and
get another opinion. Find out what the range of options is. You are entitled
to get a second, third, or fourth opinion. Don't be shy about searching for
other doctors who specialize in pregnancy complications to consult about your
situation. University hospitals are often a good source for maternal/fetal
specialists with advanced training. If you feel a different course of action
is more appropriate for you, discuss with your health care team whether it is
possible to take the alternative course.
In the NICU, you and your baby will have a new set of caregivers from the practitioners
who cared for you during your pregnancy. Try to meet as many of these new caregivers
as you can before you deliver so you will know what to expect -- as well as
what is expected of you and your partner or spouse -- after your baby is born.
Your new health care team will consist of one or more of the practitioners
listed below.
Neonatologists evaluate and treat medical problems of newborns and premature
babies. Your neonatologist will head up your baby's NICU health care team.
Neonatologists assist with deliveries, provide care in the NICU, and occasionally
provide follow-up care in coordination with pediatricians after a baby is discharged
from the NICU. If you are at a teaching hospital, your baby might also have
one or more neonatology residents participating in his or her care.
Neonatal nurse practitioners are registered nurses with advanced training in
caring for newborns in the NICU and their families. The NNP works closely
with the neonatologist to manage the nursing care of NICU babies, and works
with families to be actively involved in their babies' care.
There will likely be several nurses caring for your baby from day to day, and
it may be helpful to keep track of their names in your written log, along with
any notes about them. If you and your family find one or two nurses that
you are especially comfortable with, you can ask the nurse or nurses to "follow"
your baby. This means that the nurse or nurses will be your baby's primary
nurse during her or his shift. This is nice because it can be difficult to get
consistent care with so many people taking care of your baby, even with the
neonatologist overseeing all the care. There are so many simple things that
can be done differently, and while both methods may be correct, you want your
baby's care to be consistent. Also, the primary nurse may be more "in tune"
to things going on with your baby that might not be noticed when there are several
caregivers.
NICU respiratory therapists treat and monitor breathing disorders common in
premature infants, especially PROM preemies. The NICU respiratory therapist
will adjust your baby's respiratory devices (see the Breathing Equipment
section) and administer any breathing treatments ordered by the neonatologist.
A NICU respiratory therapist may also attend your baby's birth.
If you intend to feed your baby breast milk, you will also have a lactation
consultant as part of your NICU health care team. A lactation consultant
educates and supports women in the fundamentals of breastfeeding. Your lactation
consultant will also provide you with information about breast pumps and proper
storage methods. When your baby is ready to breastfeed, your lactation consultant
can help you resolve any feeding issues your baby has in the NICU or after you
go home.
Physical therapists (PTs) and occupational therapists (OTs) provide help with
gross and fine motor skills in newborns and children. PTs and OTs help babies
stretch and increase their range of motion, which is especially important for
PROM preemies who may have tight muscles or contractures due to PROM. NICU
PTs and OTs also adjust babies' head positions to make sure their skulls grow
evenly, and assist with learning feeding skills. Preemies may also be referred
for PT or OT after discharge from the NICU to develop self-help skills, strength,
balance, coordination, or to improve sensory, physical, or perceptual dysfunction.
Most hospitals have a social worker and/or case manager to assist you with planning
for discharge, insurance issues, short-term counseling, and locating community
resources. The social worker or case manager can also help you arrange for hotel
or other short-term housing if the hospital is a long way from your home. Ask
your social worker or case manager about whether you qualify for government
funding to offset the costs of treatment and post-discharge care. For example,
in the United States, state disability insurance, Medicaid, Social Security,
Children's Special Healthcare Services and other programs provide financial
assistance such as reimbursing for mileage, meals and lodging for hospitalizations,
and prescription coverage and copays for specialists.
Although not strictly a member of your baby's NICU health care team, you will
need to find a pediatrician before your baby is discharged from the NICU. Ask
your neonatologist or your NICU nursing team for a referral to a pediatrician
with experience treating preemies.
Once you know that your baby will be spending time in the NICU, start preparing
for his or her delivery and NICU stay.
Find out what level of care your hospital's NICU offers. In the United States,
Level II NICUs can care for babies who weigh more than 1000g (2.2 pounds). Level
III, Level III+ , and Level IV NICUs care for smaller or more critically ill
babies. If your health care practitioner or neonatologist anticipates that
your baby may need more advanced NICU care than your hospital can provide, arrange
to be transferred to a hospital with a higher level of care prior to delivery,
if possible.
If possible, tour the NICU at your hospital before you deliver
so that you will know what to expect and see how small some of the babies are.
If you are not able to tour the NICU, try to find photos of babies taken while
they were in the NICU. Some PROM list members have photo albums of their babies'
NICU experiences and would be happy to share if you post a request to the PROM
list.
Meet with a neonatologist as soon as your baby reaches the point of viability
(depending on where you live, this is anywhere from 22 to 24 weeks) or when
you are admitted to the hospital, whichever is later. Jot down a list of questions
for the neonatologist in your written log. Depending on your baby's gestational
age at this initial meeting, your neonatologist and your health care practitioner
may recommend an immediate course of steroid injections (usually given
on two consecutive days) to boost your baby's lung development and reduce the
incidence of respiratory distress syndrome.
If your baby is less than 28 weeks gestation at the time of this first
meeting, expect that the neonatologist will give you the worst-case scenario
for your baby's survival and may discuss whether or under what circumstances
you would like a "do not resuscitate" (DNR) order applied to your baby. The
PROM list members who have experienced this initial "doom and gloom" talk encourage
you to keep in mind that while it is true that many of the tiniest babies do
die, the odds that your baby will be one of the many PROM preemies who survive
increase significantly each week.
Plan to meet with the neonatologist again at or around 28 weeks to reassess
your baby's condition and learn more about your baby's care after delivery.
If you have not yet received steroid injections, you may be given them around
this time. Some practitioners give a second round of steroids to women who received
them previously, but others will not because of the risk of infection and divided
opinions about effectiveness.
If your baby has been diagnosed with any specific conditions or disorders, arrange
for a consultation with a specialist in that field to learn more about what
you will need to do after your baby is born. Also, arrange for any prenatal
testing associated with your baby's condition before your deliver.
Obtain lactation information before delivery, if possible. The first breast
milk you pump will contain the colostrum, which provides important antibodies
for your baby, and you will need to know how to pump and store it. Also, initiating
pumping as early as possible (preferably within the first few hours after delivery)
may help with long-term milk production. The lactation consultant can also help
you arrange to rent a breast pump or advise you on which pump to purchase.
Use the Resources section of this article as a starting point to learn
as much as you can about the issues preemies and their families face. If
you are on hospital bedrest, your hospital may have books that they can lend
you, or you can order books online and have them delivered to the hospital.
Many of the books may also be available at your local library.
Sometimes after delivery your child might need blood transfusions. There might
be a possibility to bank blood from a family member in advance. If blood from
an anonymous donor is a concern for you, consult your health care team to find
out if it is possible for a family member to bank blood specifically for your
baby. The local Red Cross might also be able to provide more information.
If you have time, consider creating a plan that tells your health care team
how you would prefer your baby's delivery to be handled. The birth plan
doesn't have to be formal or even written, although jotting something down on
paper may help you organize your thoughts. Recognize that the fact that your
baby will be premature will mean that you will need to be flexible about your
birth plan. See Appendix A of this article for some ideas of what to
consider as you create your birth plan.
Prepare a contact list of any friends, family, and/or representatives from your
faith whom you would like to be present at the hospital or in the room with
you during the birth. Give your nurses a copy of the list in case you need to
delivery emergently or unexpectedly. Remember, it is okay to uninvite
people if you change your mind and decide you would like more privacy during
the birth.
If there is a religious or cultural ceremony that you would like to
have performed, arrange for someone to perform the ceremony. You should also
find out who is "qualified" to perform the ceremony if someone from your faith
or cultural background is not available.
The "NICU rollercoaster ride" refers both to your baby's progress in
the NICU, which many NICU parents experience as "two steps forward, one step
back," as well as to your own emotional state. Some preemies experience a "honeymoon
period" of two days to two weeks where things go fairly smoothly before
the rollercoaster ride begins. Some preemies continue to improve even after
the honeymoon period, although almost all babies will experience several setbacks
during their NICU stay.
Here is an overview of what you and your family might experience in the first
forty-eight hours after your PROM preemie is born.
- APGAR scoring. One minute after birth, your health care team will
determine whether your baby needs resuscitation by evaluating his or her activity,
pulse, grimace (reflex irritability), appearance (skin color), and respiration
(APGAR). An APGAR score of 7-10 is considered normal; a score of 4-7 usually
requires some resuscitative measures; and a score of 3 or less will require
immediate resuscitation. Your baby will have a second APGAR evaluation five
minutes after birth, and may have a third or fourth evaluation, depending
on the two previous scores.
- Ventilator. If your baby is having any difficulty breathing, he or
she will probably be placed on a ventilator immediately.
- Seeing your baby. In most cases, you will be given at least a quick
peek at your baby before he or she heads to the NICU. Plan to have someone
else in the room take a quick photo of your baby with you and your
partner or spouse before your baby is taken to the NICU. That person can also
take any other photos that are important to you, such as a photo of all of
your babies together if you are having multiples.
- Religious or cultural ceremonies. If there is a religious or cultural
ceremony that must be performed immediately after birth, such as a baptism
or blessing, it can be performed before your baby leaves for the NICU unless
other circumstances require your baby to be taken to the NICU immediately.
Make sure your health care team is aware that you are planning for this ceremony
to take place.
- Who goes where, and when. Soon after delivery, your baby will be
taken to the NICU and will likely be placed under a "radiant warmer" (a small
open bed with a light and warmer above the baby) so the neonatologist can
access the baby easily during the first hour or so. Afterwards, your baby
will be moved from the radiant warmer to an isolette. Your partner or spouse
will likely be allowed to accompany your baby to the NICU and can take photos
for you if you wish. You will remain in the delivery room to complete delivery.
Afterwards, you will probably be given a couple of hours to recover before
you are moved to the postpartum unit or other recovery area.
 It
may be several hours before you are allowed to visit your baby in the NICU for
the first time. Your baby will likely be in a room with several other babies,
unless your baby needs to be isolated because of an infection or other circumstance.
Before you are allowed into the NICU, you will be required to
wash your hands very thoroughly. Some NICUs will require you to wear special
clothing. When you see your baby for the first time in the NICU:
- Your baby will most likely be lying in an isolette, which is a bed
that is covered with plexiglass and has small doors that open to fit your
hands into. It is heated and humidified inside.
- Your baby may have an umbilical IV, arterial IV (inserted into his
or her wrist, ankle, or groin), or a central line (inserted in the
neck, chest or groin) to administer food and medications. Note that in some
instances, an IV will be inserted into a vein in the baby's head.
- Your baby may also be attached to a number of wires to monitor his
or her heart, temperature, oxygen saturation, and blood pressure.
- Your baby may also have a feeding tube in his or her nose (known
as a nasogastric or NG tube) or mouth (known as an orogastric or OG tube).
- You may also see a vibrator or massager in your baby's isolette,
which may be used under your baby's back or on your baby's chest to loosen
up secretions in his or her lungs.
Also, because most PROM preemies do not have fully developed lungs at birth,
your baby will likely be using one of these types of breathing equipment:
- A ventilator attaches to your baby's breathing tube and uses pressure
to either breathe for him or her completely, or assist him or her with breathing.
Babies on ventilators will have a normal, in-and-out rhythmic breathing pattern.
- A high frequency oscillating ventilator (HFOV or oscillator) is a
ventilator that is gentler on your baby's lungs. Babies on high-frequency
ventilators receive smaller quantities of air at lower pressures than a regular
ventilator. The air is administered in rapid pulses and your baby may appear
if he or she were getting a vibrating massage.
- A continuous positive airway pressure (CPAP) machine is a less invasive
way of helping babies breathe than a ventilator. Rather than forcing air into
a baby's lungs through a breathing tube, CPAP forces oxygen or room air through
the baby's nose using a special nasal cannula. The pressure from the CPAP
keeps the baby's lungs inflated after he or she exhales, but the baby initiates
each breath himself or herself.
- Babies who can breathe entirely on their own but require additional oxygen
may have a nasal cannula placed in his or her nostrils. The cannula
allows oxygen or room air to flow to the baby, without the pressure of the
CPAP. Alternatively, some babies who can breathe on their own use an oxygen
hood which is a clear plastic shell that encompasses the baby's head and
delivers oxygen without the pressure of CPAP.
- Your baby's oxygen saturation levels will be monitored to determine how
well he or she is processing the oxygen he or she inhales. If your baby's
oxygen saturation drops below 90%, the NICU staff will give your baby additional
oxygen. Oxygen saturation is monitored via a wire attached to your
baby's hand, wrist, foot, or toe and the sensor is usually rotated every 12
hours. The NICU staff can show you the monitor that displays the oxygen saturation
measurement, as well as how to use the other machines to check it for accuracy.
The next three sections contain an overview of what your baby, you, and your
family might experience the first week after your baby is born. For more comprehensive
information about what kinds of issues and considerations arise during and after
the first week, see the Resources section for books and websites about preemies.
During your baby's first week in the NICU, the neonatal health care team evaluates
and stabilizes your baby's condition, giving him or her the best chances for
survival. The NICU team may take some or all of the following measures to help
your baby during the first week.
- Some NICUs put babies on IV antibiotics immediately as a precautionary
measure until they receive results from bloodwork.
- Depending on your baby's gestational age, he or she may be tested
for various complications common in preemies. For example, your baby might
have a head ultrasound to check for intraventricular hemorrhage and blood
tests to check for infection and monitor bilirubin levels. Many hospitals
will also test preemies' eyes. Your baby will have several tests over the
course of his or her NICU stay.
- If your baby has severe jaundice or an infection, he or she may receive
a blood transfusion. Because transfusions are fairly common in the
NICU, your neonatologist may discuss the possibility of transfusion with you
during one of your pre-delivery meetings.
- Your baby may receive a dose or course of surfactant in the first
few hours after birth to help his or her lungs stay inflated and improve the
effectiveness of the breathing treatments.
- Your baby may receive medication to keep him or her sedated or immobile
while on the ventilator. In addition, your baby might be given an analgesic
(such as Fentanyl) for pain management.
Remember that each baby's experience is different. Some PROM preemies will have
none of these complications and will be discharged from the NICU relatively
quickly, while others will have complications in addition to those listed and
longer NICU stays.
- One of the most common complications for PROM preemies is pulmonary
hypoplasia (underdeveloped lungs). PROM preemies often have this condition
because the lack of amniotic fluid limits the opportunities for the baby's
lungs to expand fully, which is what stimulates lung development. If a baby
is born with hypoplastic lungs, it will be difficult or even impossible for
him or her to breathe normally.
- PROM preemies may also experience orthopedic complications caused
by not being able to move easily because of low amniotic fluid. For example,
PROM babies may be born with a club foot, dislocated hips, or other contractures
of limbs. Orthopedic complications are usually minor and correctable through
surgical or physical therapy after your baby is discharged from the NICU.
- Babies experience respiratory distress syndrome (RDS) when the air
sacs in the lungs collapse between breaths as a result of insufficient surfactant
in the lungs. Having to refill the air sacs with every breath means that the
baby's lungs must work much harder than if he or she was producing enough
surfactant naturally. RDS will improve with time, and is treated by administering
surfactant and using breathing equipment. The majority of preemies born at
26 weeks gestation and earlier will have RDS. Steroid injections have been
shown to reduce the incidence of RDS if given a minimum of 24 hours prior
to delivery.
- Apnea of prematurity is a pause in a preemie's breathing that lasts
more than 20 seconds. Apnea will also improve as the part of the brain that
regulates breathing has a chance to become more developed, usually within
about 2 to 4 weeks of the baby's due date. Apnea can be treated with caffeine
(IV or oral) or other medications, although mild cases may be treated simply
with stimulation instead of medication. Most NICUs will not discharge a baby
until several consecutive days without apneic episodes. A condition associated
with apnea is bradycardia, which is when a baby's heart rate drops
to less than 100 beats per minute (120 to 160 beats per minute is normal).
- Chronic lung disease (CLD) -- also known as bronchopulmonary dysplasia
(BPD)-- occurs when a baby's breathing equipment causes inflammation or
damage to a baby's lungs. CLD/BPD is diagnosed by chest xray and is treated by
slowly weaning the baby off respiratory machines, allowing the lungs to heal
over a period of a few weeks or more. Although the lung tissue is chronically
damaged, as the baby's lungs mature their total capacity can reach a point where
the damaged area is of minor importance.
- Patent ductus arteriosis (PDA) is a condition involving a blood vessel
close to the heart which is open in the womb but usually closes within the
first few days after birth. When the blood vessel does not close, it can strain
the baby's lungs and cause breathing problems. PDA is diagnosed by xray or
echocardiogram (ultrasound). PDA sometimes resolves without any medical intervention,
but can be treated with medication or surgery.
- Necrotizing enterocolitis (NEC) affects the baby's intestinal lining.
NEC is not common, but can be very serious and lead to apnea, and bradycardia,
and respiratory problems. A NEC diagnosis is confirmed with xray. Treatment
for NEC includes discontinuing oral feedings and administering antibiotics,
but very serious cases may require surgery.
- Reflux occurs after feeding, and causes food to come back up the
esophagus. Signs of reflux include frequent vomiting, aspiration pneumonia
(when food then gets inhaled into the lungs), apnea, bradycardia, and oxygen
desaturation. Reflux can be diagnosed by a pH probe, a baruim swallow, or
upper GI study. Although babies usually grow out of reflux, it can be treated
by adjusting the amounts, positions, frequency, or thickness of feeding. In
some cases, medications such as Reglan or Zantac can be helpful. Surgical
treatment for reflux is rare.
- Intraventricular hemorrhage (IVH or bleeding in the brain) is diagnosed
by a head ultrasound, usually within the first week after birth. IVH is fairly
common in preemies weighing less than 1000 grams at birth, but less common
in larger babies. This type of hemorrhage is classified by grades 1 through
4. Grades 1 or 2 IVH are considered mild and generally create little risk
or complications. Risks increase for Grades 3 and 4. Steroid injections prior
to delivery and receiving indomethacin immediately after delivery have been
shown to reduce the incidence of IVH.
- A baby's bilirubin levels generally rise after birth, then begin to gradually
decrease after 5 to 7 days. Jaundice occurs when bilirubin levels accumulate
in the liver faster than it can be broken down. Most preemies experience some
degree of jaundice and are usually treated for a few days or more with
"bili lights" or phototherapy. In severe cases of jaundice, the baby may require
a blood transfusion.
- Retinopathy of prematurity (ROP) occurs when changes in oxygen flow
or other factors can cause abnormal blood vessels to grow and damage the retina.
ROP is more common in preemies born before 28 weeks. About four to six weeks
after delivery, an opthamologist will examine your baby's eyes for ROP. In
about 90% of ROP cases, abnormal blood vessels will disappear without treatment
within a few months past the baby's due date. More advanced cases will usually
receive cryotherapy or laser therapy, or surgery.
Babies born prior to 34 weeks gestation have not yet developed the ability to
coordinate the reflexes to suck and swallow with breathing. For this reason,
babies born prior to 34 weeks may need one of these interventions to help with
feeding.
- Total parenteral nutrition (TPN) bypasses the digestive system and
goes directly into the baby's bloodstream through an IV or central line. TPN
is often used for babies born at less than 34 weeks gestation and some neonatologists
believe that introducing food to the esophagus too early will cause the baby
to develop reflux.
- Gavage feedings involve feeding your baby breast milk or formula
through a tube that goes from his mouth or nose into his or her stomach.
- Preemies frequently have trouble drinking from a nipple (breast or
bottle) at first. If your baby is having trouble nursing, ask the lactation
consultant whether a silicone nipple shield would help with nursing.
The lactation consultant will be able to instruct you on using the nipple
shield and where to find one.
You may not feel like taking photos of your baby during this first week in the
NICU, but the members of the PROM list encourage and recommend that you do so.
You do not have to look at the photos until you are ready, but at least you
will have them if you or your baby would like to see them later.
When you take photos, it is good idea to have some object next to your baby
to give a sense of scale. If possible, try to take as many of the photos as
possible without using a flash, as the flash causes disturbance to the babies
in the room. Ask the health care team before you use the flash. If you feel
that it would be too difficult for some people to see photos of your baby with
all the tubes and wires, consider having the photos printed in black and white,
taking some photos at a greater distance, or taking photos just of your baby's
hand or foot in your hand. Also, plan to take photos of your baby's health care
team to help your family remember them afterwards.
You may want to keep a disposable camera at your baby's bedside just in case
you leave yours at home, or if the nurses want to take photos while you are
away. If you and your partner or spouse feel uncomfortable taking the photos
yourselves, ask the NICU nurses to take the photos for you. Some NICUs have
digital cameras and will give you a disc of photos when you are discharged.
Expect to be feel physically and emotionally strained in the days and weeks
following your baby's birth, especially if you were on extended bedrest toward
the end of your pregnancy. As a preemie mom, you will probably find yourself
focusing entirely on your baby, and it is easy to forget to rest, eat, and stay
hydrated. Making a special effort to take care of yourself and get adequate
nourishment, sleep, and water or other liquids will help maintain your energy
so you can fully participate in your baby's care.
During your first week after the birth, depending on what country you live in
and how you delivered your baby, you may remain at the hospital for a few days
to a week or more. It may be emotionally difficult to spend your recovery in
the postpartum unit of the hospital, particularly if you have a roommate and
your hospital has a rooming-in policy. Consider requesting to spend your postpartum
recovery in the area of the hospital for women recovering from gynecological
surgeries instead.
If you are discharged from the hospital before your baby is ready to go home,
you may find it very hard to leave without him or her. Plan to bring a photo
of your baby, one of his or her blankets, or something special that belongs
to your baby when you are discharged so you don't have to leave empty-handed.
After you are discharged from the hospital, you will probably be returning
often to visit your baby in the NICU. You are unlikely to be allowed to sleep
in the NICU with your baby, however some NICUs have a room where you can stay
overnight in certain circumstances. Many hospitals all over the world have a
nearby Ronald McDonald house where parents of critically ill children
can stay for a nominal fee (US$5 to $25). If you know you or your partner or
spouse will need temporary housing after your baby is born, ask your case manager
or social worker to help arrange lodging for you.
- If you were on bedrest for several weeks before your delivered, you
may feel weak, dizzy, or nauseated when you first begin to move around again.
Drink lots of fluids and rest often to replenish your strength. Also,
take short walks, either within the hospital or
outside, as your strength and body permits. For example, one PROM preemie
mother would take the stairs up to the NICU at least once a day to help rebuild
her strength. Another PROM preemie mother pushed a wheelchair from her room
to the NICU which made it easier to walk, and allowed her to sit down and
wheel herself if she got tired. Walking will help you regain strength in your
muscles and will reduce the risk for a blood clot.
- Keep your feet elevated when sitting or lying down, to help prevent
or reduce painful swelling in your feet and ankles.
- Continue taking prenatal vitamins, as well as any medications or supplements
ordered by your health care practitioner.
- Schedule a postpartum followup appointment with the health care practitioner
who cared for you during your pregnancy six weeks after you delivered. Make
sure to contact your practitioner sooner if you do not feel that you are recovering
as you should.
- Ask your health care practitioner to give you a list of the warning signs
of infection, and alert your practitioner immediately if you experience
symptoms of infection.
- If you are planning to feed your baby breast milk, drink lots of water to
help increase milk supply and expect to pump every 2 to 3 hours. The
lactation consultant will help you if you have questions or experience problems,
and will tell you how to store the breast milk until your baby is ready to
use it. If you plan to pump long term, you may want to invest in a quality
electric pump. Some insurance companies will cover the cost of the pump if
your neonatologist writes a letter stating that it is a medical necessity.
Most NICUs have a breastfeeding or pumping room.
- You may experience postpartum depression as early as the first week
after your baby is born (a self-assessment and checklist of some of the symptoms
of postpartum depression is available at http://www.pndsa.co.za/ms-fc.htm).
If you believe that you are suffering from postpartum depression, talk with
your health care practitioner immediately regarding treatment options or referral
to a mental health care specialist.
- Many NICU and PROM parents also experience post-traumatic stress disorder
(PTSD) during or after their babies' NICU stay. PTSD is distinct from postpartum
depression and can involve flashbacks, nightmares, obsessive behavior, and
panic attacks. If you believe that you are suffering from PTSD, talk with
your health care practitioner immediately regarding treatment options or referral
to a mental health care specialist.
- If you had a multiple pregnancy and not all of your babies survived,
you will also be grieving for the baby or babies you lost. Your social worker
or case manager can refer you and your partner or spouse to perinatal loss
support groups and resources in your area. There are some resources for coping
with loss in multiple birth in the Resources section of this article,
as well as a list of grief resources in the "Preparing
for a Perinatal Loss" article on the PROM website.
- In addition to your NICU written log, try keeping a daily diary or
journal. Studies have shown that journaling is a strong coping mechanism and
helps reduce stress in NICU parents. You can journal in any way that makes
it easy for you to record your thoughts and feelings: writing in a book, typing
on your computer, or even sharing your thoughts online. In addition to helping
you working through your feelings about what is happening with your baby,
your journal may also be useful in identifying and managing any grief or sadness
you might feel about your pregnancy and birth experience.
Keep in mind that friends and family members often focus only on how you and
your baby are doing, and may not recognize that your partner or spouse is also
experiencing great stress, anxiety, and even depression. As a result, partners
may keep their feelings bottled up in an effort to "be strong." Encourage
your partner to take time out to do things that are relaxing and restorative,
especially if you were on bedrest and your partner has already spent weeks or
months caring for you, your home, and your family. In addition, take time during
this first week and beyond to listen to your partner's fears and concerns and
encourage your partner to find ways to express and manage those feelings.
Also, as discussed earlier, many NICU and PROM parents also experience post-traumatic
stress disorder (PTSD) during or after their babies' NICU stay. PTSD is
distinct from postpartum depression and can involve flashbacks, nightmares,
obsessive behavior, and panic attacks. If you believe that your partner is suffering
from PTSD, talk with your health care practitioner immediately regarding treatment
options or referral to a mental health care specialist.
You may find that your relationship with your partner or spouse becomes
strained or difficult if you have very different expectations about how much
time each of you will spend at the hospital, at home, at work, and with any
children you have at home. Set aside some time during this first week, and again
in subsequent weeks, to listen to how each other is feeling and empathize without
trying to convince the other about what the "right" amount of time and involvement
is.
If you have children at home, start preparing them to see their new brother
or sister. You can show them photos of your baby or other preemies (also, some
NICUs have preemie-sized dolls) so they become familiar with how tiny the babies
are and all the tubes and wires they will see in the NICU. Although it might
seem scary at first, it is generally less frightening to children to see their
sibling in person than the images of their sibling and the NICU they might create
in their imaginations. Your older children may want to bring drawings or other
decorations they have made for their new sibling's isolette or crib when they
visit.
Also, set aside some time during this first week to spend time with your other
children, especially if you have been away on hospital bedrest for an extended
period. Taking time to reconnect with your children will help you understand
their concerns and feelings, and will help alleviate any jealousy about the
new baby getting so much attention. Many of the PROM list members have reported
that their older children have a difficult time bonding with them after returning
from the hospital, or that their children show a strong preference for the other
parent or another caretaker. While this can be heartbreaking, be aware that
this is a transitional phase and your relationship will improve with time.
Keeping friends and family informed of your baby's status and progress
can be time-consuming and emotionally exhausting. Consider implementing a phone
tree system or creating a website or blog to share photos and post
updates. One free website you may find useful for creating an online journal
is www.caringbridge.org.
Also, some hospitals have their own blog site that patients can use to post
updates.
 You
and your partner or spouse may feel some detachment from your baby at first.
This is not unusual. Some parents find that postpartum depression, post-traumatic
stress disorder, or feelings of anxiety, guilt, shock, or anger impair their
ability to bond with their babies. Other parents are so afraid of losing their
babies that they intentionally distance themselves, either physically by avoiding
or minimizing time in the NICU, or symbolically by holding off naming their
babies or sharing the news of the babies' births.
Your NICU team can work with you to show you ways to connect with your baby
physically and emotionally by involving you in your baby's care and encouraging
you to participate in decisionmaking.
The members of the PROM list encourage you and your partner or spouse to bring
your baby's siblings to the NICU so they, too, can begin to bond with their
new brother or sister. Visiting the NICU will help your baby's siblings understand
and handle the NICU experience, by being able to be a part of caring for and
getting to know their new little sister or brother.
Grandparents and other family members should also be encouraged to visit and
bond with your baby.
Some PROM preemie parents have found that they were given more opportunities
to participate in their babies' care during certain shifts, often late evening
or very early morning. Talk with your NICU nurses about whether there are certain
time periods when your NICU is less busy and the nurses generally have more
time to answer questions about your baby's progress, and help with bathing and
kangaroo care.
You may be allowed to bring pictures, blankets, stuffed animals, or other
mementos for your baby. Items other than blankets or isolette covers may
not be allowed on top of the isolette, but you can tape decorations such as
family photos or spiritual pictures to the isolette. Ask your NICU nurses for
specific guidance on what can be placed in the isolette.
Make sure you label any blankets or clothing with your baby's name so
they don't get put in with the NICU's laundry.
Your NICU team will show you how to handle your baby sensitively, without overstimulating
him or her. For example, you will need to keep your voice soft and the lights
dim, and avoid excess noise. You can avoid overstimulation by introducing only
one stimulus at a time. For example, if you are touching your baby, you shouldn't
also stroke him or her or talk. When touching your baby, use firm, constant
pressure rather than feather-touching or lightly stroking.
Signs that your baby is becoming overstimulated include desaturation of oxygen
(ask your NICU nurses how to identify this on your baby's monitors), grimacing,
turning away, or a heart rate that is either too fast or too slow. Keep in mind
that sometimes your baby may need to be left alone.
In kangaroo care, the baby is placed on the parent's chest with the baby's ear
against the parent's heart. The baby wears only a diaper and cap so that the
baby's bare skin is touching the parent's bare skin. Talk with your NICU caregivers
about what their policy on kangaroo care is. Most hospitals will allow kangaroo
care even if babies are on a ventilator. "Rooing" is believed to enhance babies'
long-term development and can have a powerful impact on parents.
Kangaroo care was first used in hospitals with insufficient technical equipment
where no isolettes were available. After years of studying the positive effects
for both baby and parents, some well developed hospitals (such as the Uppsala
University hospital in Sweden, starting summer 2005) have been using kangaroo
care as the first and preferred care, rather than isolettes. Families are offered
a room of their own where one of the parents can carry the baby close to the
body all day and night with a special kangaroo blanket. Studies show that the
babies that are "rooed" this way need less medication and progress faster, and
that the parents bond with the baby much better.
People who are sick, have a fever, or have a rash, or have been exposed to certain
illnesses such as chicken pox, measles, mumps, meningitis, are unlikely to be
allowed into the NICU. Washing and disinfecting your hands as well as wearing
a hospital robe or gown before entering the restricted NICU area will most likely
be the standard procedure and the most powerful way to prevent infection.
In a perfect world, every baby in the NICU would survive. Unfortunately, it
is likely that during your NICU stay at least one family will experience a loss.
You may feel a range of emotions when you learn of another family's loss --
relief, anxiety, fear, sadness, guilt, jealousy, anger, or a combination of
all of these. Remember that each baby is different. Try not to compare
children or draw conclusions about your baby's outcome based on similarities
or differences in weight, gestational age, length of time in the NICU, or medical
condition.
Offer comfort to the bereaved family if you see them. Don't assume they
would rather you avoid them because your baby is still alive and theirs is not.
There is a good list of what to say (and what not to say) to families experiencing
perinatal loss at this website: http://www.babylosskit.com/what.html.
If you learn that your baby will not survive, you will find some resources
for preparing for your baby's loss here on the PROM website: Preparing
for a Perinatal Loss. In addition, the March
of Dimes website has some information for how
to prepare for the loss of a NICU baby.
Also, if you have not done so already, consider joining
the PROM list so that we can support you through this difficult time.
- Be your baby's advocate.
- Follow your instincts.
- Don't give up hope.
- We, the members of the PROM list are here to support you. (Click
here to join the PROM list)
March of Dimes Prematurity Website:
http://www.marchofdimes.com/prematurity/prematurity.asp
General preemie info:
http://www.pediatrics.wisc.edu/patientcare/preemies/
General information:
http://www.preemiecare.org/
General information:
http://www.spensershope.org/
Glossary of preemie terms:
http://www.preemieinfant.ca/links_glossary.cfm
Neonatology overview and resources:
http://www.neonatology.org/
Outcomes by gestational age:
http://www.geocities.com/Heartland/Acres/2077/table.html
Lung maturity general info:
http://www.wardelab.com/arc9.html
Lung maturity testing reliability:
http://parenting.ivillage.com/pregnancy/pthirdtri/0,,46lh,00.html
La Leche League/breastfeeding info:
http://www.lalecheleague.org/
Kangaroo care:
http://www.geocities.com/roopage/
Intraventricular hemorrhage:
http://www.emedicine.com/ped/topic2595.htm
Pediatric Adolescent Gastroesophageal Reflux Association
http://www.reflux.org/
Ronald McDonald Houses:
http://www.rmhc.com/rmhc/index/search_house.html
Synagis/RSV shot:
http://www.medimmune.com/products/synagis/index.asp
Baby Steps NICU journal:
http://www.perinatalweb.org/association/pub_preMatBabySteps.html
Maine Medical Center sample birthplan:
http://www.mmc.org/mmc_community/Birthplan.pdf
Storknet NICU support cubby:
http://www.storknet.com/cubbies/nicu/stories-christy.htm
Tips for new preemie parents:
http://members.aol.com/KBone91/tbone.html
Roles of NICU parents:
http://www.prematurity.org/roles.html
Helping parents survive:
http://www.prematurity.org/baby/rollercoaster-maroney.html
Inspirational preemie poems and stories:
http://www.kingfam.homestead.com/stories.html
Longterm effect of steroids:
http://www.nzherald.co.nz/index.cfm?ObjectID=10128177
Prematurely yours (preemie products):
http://www.prematurelyyours.com/
Handmade preemie dolls:
http://www.preemiedolls.com/
Preemie clothes:
http://home.comcast.net/~preemieclothes/
Preemie clothes:
http://www.preemiedonna.com/
Preemie clothes:
http://www.preemie.com/
Preemies
The Essential Guide for Parents of Premature Babies by Dana Wechsler Linden,
Emma Trenti Paroli, and Mia Wechsler Doron, M.D.
Parenting Your Premature Baby and Child: The Emotional Journey
by Deborah L. Davis, Mara Tesler Stein
What to Do When Your Baby Is Premature:
A Parent's Handbook for Coping with High-Risk Pregnancy and Caring for the Preterm
Infant by Joseph A. Garcia-Prats, Sharon Simmons Hornfischer
Caring for Your Premature Baby:
A Complete Resource for Parents by Alan H. Klein
Kangaroo Care:
The Best You Can Do to Help Your Preterm Infant by Susan Ludington-Hoe
The Preemie Parents' Companion:
The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home,
and Through the First Years by Susan L. Madden
Your Premature Baby and Child:
Helpful Answers and Advice for Parents by Dianne I. Maroney, Judy C. Bernbaum,
Jessie Groothuis, Amy E. Tracy
The Premature Baby Book : Everything You Need to Know About Your Premature
Baby from Birth to Age One
by William Sears
Living Miracles:
Stories of Hope from Parents of Premature Babies by Kimberly A. Powell (editor)
List of books for special needs children:
http://www.comeunity.com/dbooklist.html
Preemie Magazine
http://www.preemiemagazine.com/
Postpartum depression:
http://www.postpartum.net
Multiplicity: The Special Challenges of Parenting Twins & More Loss, Prematurity
and Special Needs: http://www.synspectrum.com/multiplicity.html
Here are some considerations for creating a birth plan when you are preparing
for a PROM preemie:
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Whether you prefer vaginal birth or c-section. Your decision may
be influenced by who will attend you for the birth, and whether you will
deliver naturally, at a set time, or emergently. |
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The type of pain relief you would like. For example, whether you
prefer sedatives, epidural, local anesthetic, no pain medication, or some
other option. If it is important to you to be awake and remember the
birth, request painkillers that will allow you to be alert and awake
during the birth. |
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Whether you would like to be holding, touching, or wearing something
special (for example, a rosary, a special scarf or piece of jewelry). |
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If you are having a c-section, when you would like the drape lowered
(before, during, or after delivery, or not at all). |
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Whether there are certain doctors or other staff that you do or do
not want attending you. Also, whether you would prefer not to be seen
by residents or students. |
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Whether you want specific music or lighting. |
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Who should be allowed in the room with you, and when. |
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If you have other children, whether or at what point you would
like them in the room with you, and/or what you would like their role to
be. |
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How you would like information conveyed to visitors who are not
being allowed into the room. |
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Whether to address your baby by name during and after delivery,
if you have already named your baby. |
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Who should catch your baby and/or cut the umbilical cord. |
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Whether you want your baby's gender announced, if you do not already
know. |
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Where you would like your baby placed after delivery. For example,
if you would like your baby placed on your chest, wrapped and held by a
family member, or in a bassinet. |
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Whether there are any religious services you would like to have performed,
when you would like them performed, who should be present, and what
mementos you would like to have from the service (photos, video, etc). |
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What mementos you would like to have of your baby's birth, including
photographs. |
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Whether you would like your partner or spouse to go with your baby
to the NICU, if possible. Also, if you would like your partner or spouse
to take photos there, and whether you want someone from your family to remain
with your baby at all times. |
Article by Jodi Donnelly, Mommy to Anthony PROM @ 16
weeks, born in 2004 @ 31.5 weeks, 41 days in NICU and now thriving
and Kay Squires, september 2005
Special thanks to Inkan, Jen, Jody, Lise, Sonya, Valerie, Beth and the members
of the PROM list
© 1998-2024 Inkan, The PROM Page
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Preparing
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