Working with Parents with Premature Infants
Dr. Dawn-Elise Snipes, PhD, LPC-MHSP, LMHC
Executive Director: AllCEUs.com
Podcast Host: Counselor Toolbox and Happiness Isnât Brain Surgery
Objectives
~ Review medical issues for preemies
~ Discuss life in the NICU
~ Explore the range of feelings in NICU families
~ Identify strategies to help bond with baby
~ Explore parenting under the microscope (in the NICU)
~ Identify methods for easing discharge anxieties
Health Problems That May Affect Preemies
~ Intraventricular hemorrhage (IVH). This is bleeding in the brain. It usually happens near the ventricles in the center of the brain. A ventricles is a space in the brain thatâs filled with fluid.
~ Patent ductus arteriosis (PDA). This is a heart problem that happens in the connection (called the ductus ateriosus) between two major blood vessels which can c ause breathing problems or heart failure.
~ Necrotizing enterocolitis (NEC). This is a problem with a babyâs intestines that can cause feeding problems, a swollen belly and diarrhea. It sometimes happens 2 to 3 weeks after a premature birth.
~ Retinopathy of prematurity (ROP). This is an abnormal growth of blood vessels in the eye. ROP can lead to vision loss.
~ Anemia. This is when a baby doesnât have enough healthy red blood cells to carry oxygen to the rest of the body.
Health Problems That May Affect Preemies
~ Jaundice. This is when a baby's eyes and skin look yellow. A baby has jaundice when his liver isn't fully developed or isn't working well.
~ Most preemies become jaundiced at some point and need to bask in the billi-lights (light therapy)
Health Problems That May Affect Preemies
~ Apnea caused by immaturity in the area of the brain that controls the drive to breathe (the brain doesn't “remember” to take a breath).
~ These breathing abnormalities may begin after 2 days of life and last for up to 2 to 3 months after the birth
~ The first line of treatment for apnea is simply stimulating the baby to help him or her remember to breathe. This can mean rubbing the baby's back or tapping the feet
~ May limit interaction time with baby (overstimulation)
~ Apnea of prematurity usually ends on its own with time.
~ Healthy infants who have had AOP usually do not go on to have more health or developmental problems than other babies.
~ AOP does not cause brain damage, and a healthy baby who is apnea free for a week will probably never have AOP again.
Health Problems That May Affect Preemies
~ Respiratory distress syndrome (RDS). This is a breathing problem because the baby doesnât have a surfactant that keeps small air sacs in the lungs from collapsing.
~ Bronchopulmonary dysplasia (BPD). This is a lung condition that can develop in premature babies as well as babies who have treatment with a breathing machine. Babies with BPD sometimes develop fluid in the lungs, scarring and lung damage.
~ Infections. Premature babies often have trouble fighting off germs because their immune systems are not fully formed. Infections that may affect a premature baby include pneumonia, a lung infection; sepsis, a blood infection; and meningitis, an infection in the fluid around the brain and spinal cord.
~ Other diagnoses can be found here: https://kidshealth.org/en/parents/nicu-diagnoses.html
NICU Life
Life in the NICU
~ The NICU is a wealth of sensory input.
~ Machines have unique operating noises and alarms that may frighten you or make you feel something is not right with your baby.
~ The NICU staff will explain what they mean.
~ As you spend more time in the NICU, you too will begin to distinguish among various alarm sounds.
~ Depending on the time of day, the unit may be a flurry of activity.
~ Many different health care providers involved in your babyâs care will introduce themselves to you. Donât worry about remembering their names or what they do. The staff understand that you are taking in a lot of new information.
LifeâŚ
~ Some hospitals will allow the mother to stay on the L&D floor as long as they have empty/spare rooms.
~ Parents report a range of reactions and emotions following their first moments in the NICU depending on whether:
~ You were expecting your infant to need NICU care after birth
~ Your babyâs condition
~ Your own condition
~ If you have had any past NICU experience.
Fear in the NICU
~ Fear is a normal reaction to the unknown.
~ Parents may also fear the possibility of serious illness, disability, or even death.
~ Peanuts can go south really quickly
~ They may come in and the child has an IV in their scalp
~ They may even begin to question their own abilities to take care of this ill or premature baby.
~ Anxieties about the cost of the NICU
~ Some parents also fear their friendsâ and relativesâ responses to the birth.
~ Mothers sometimes fear their partner will blame them for a complicated birth and fear the loss of the relationship.
Fear in the NICU
~ Often mothers feel that their mother or their partnerâs mother is judging them as responsible for the babyâs problems.
~ It helps to know that most pregnancy and birth complications are not anyoneâs âfaultâ and many NICU admissions are unforeseen.
Anger and Guilt in the NICU
~ Many parents feel angry at the hospital staff that their birth experience did not go as expected
~ They may be angry at:
~ Inability to control events in the NICU
~ âThey just donât know what theyâre doing.â
~ âThey refuse to tell me when I can take my son home.â
~ Family and friends (âThey just donât understand.â)
~ Your partner (âHow can she/he go to work and just forget about the baby?â).
~ Mothers may be angry at themselves
~ âWhy couldnât I carry this baby to term?â
~ âWhat did I do/not do to make this happen to my baby?â
Anger in the NICU
~ Anger at their baby
~ âWhy couldnât you have waited for just a few more weeks?â
~ Why wonât you breastfeed/Why must you be tube fed?
~ Anger at their higher power for allowing it to happen
~ Anger at the NICU for the disruptions in life
~ Parents express it in different ways.
~ Some are openly angry, demanding, and looking to blame others
~ Some want to retreat or run and keep their anger hidden inside.
~ It may be difficult to acknowledge any anger, especially if that anger is directed toward your baby or partner.
Anger in the NICU
~ To cope with anger
~ Begin by acknowledging it to yourself, your partner, and those around you.
~ Realize that anger is a normal, expected emotion common to most NICU parents.
~ Make a plan to address the problems you want to confront or things you want to try to change.
~ Dealing with your anger can give you more energy to care for yourself and your baby.
Loss and Grief in the NICU
~ Loss of vision of what childbirth would be
~ Loss of the full pregnancy/birth experience and missing feeling the baby
~ Loss of the ability to âparentâ from the beginning
~ Loss of confidence in self
~ Because of premature labor
~ When child wonât breastfeed
~ When child has a set-back
~ If child cannot be touched or held
~ Losses due to childâs disabilities
~ Loss of time with your family and other children
Kangaroo Care
Nurturing Love in the NICU
~ Baby clothes
~ Heart beat sounds
~ Pictures
~ Ask the nurse to send you pictures when she has time if you have to return to work
~ Journals and funny moments
~ Hold to increase bonding
~ Kangaroo care when possible
~ Read books and sing songs
~ Ask nursing staff to reserve bathing and other parental duties to you (schedule permitting)
~ Let staff know your schedule so baby can be ready and providers know when to stop in to see you.
Parenting in the NICU
~ Parents of preemies are often still reeling from the shock of the baby's arrival weeks or months before your due date.
~ Mom may never have fully adjusted to being pregnant, much less being a new parent.
~ Parents may feel distant from their baby in the busy, hectic newborn intensive care unit (NICU)
~ Encourage parents to give themselves permission to cry and feel overwhelmed.
~ Help them connect with other NICU parents. These parents share many of your feelings and struggles.
~ Ask NICU staff if there are graduate NICU parents with whom your client can connect for support.
Parenting in the NICU
~ Parents can connect with others who understand what they are going through at the March of Dimes website, Share Your Story.
~ This online community was created especially for families who have faced the frightening experience of having a baby born early or with a health condition.
~ Connect with baby
~ Kangaroo care (helps with bonding, nursing and stress)
~ Stories
~ Recordings of your voice/singing
Parenting in the NICU
~ Help parents establish a routine.
~ Find a way to balance work, home life and visiting the hospital.
~ Allow themselves to leave baby's side
~ It is important to have time for themselves, with each other and with any other children.
~ Take time to do things they enjoy, exercise and get good nutrition. NEST-S
~ Keep a good sleep routine
~ Donât spend all day in the darkness of the NICU or they may start having vitamin D deficiencies, circadian rhythm disruptions and increased depression
Parenting in the NICU
~ Things Parents can do
~ Explore their spiritual side and reflect and lean on their personal spiritual perspective.
~ Keep a journal which can strengthens hope and patience, by reminding them how far their baby has come.
~ Vent frustrations (appropriately) and hope for the best. When baby has a setback, parents may be plunged back into fear and anxiety.
~ Celebrate when they can. When baby makes progress, dare to experience the joy.
~ Accept the support of others, however clumsy it may seem. Let people know how they can best help.
~ Accept that everyone will react differently. Encourage partners and family members to share experiences and listen with empathy so that everyone can feel supported
Parenting in the NICU
~ It's natural to feel anxious and unsure about taking care of a tiny baby while hospitalized in the NICU.
~ Help parents feel more confident as a parent in the NICU:
~ If this is a first baby, remind them that all new parents feel anxious and unsure. Their feelings may be intensified because of the NICU.
~ Even if theyâre experienced parents, they may feel anxious and unsure. Parenting in the NICU is different and challenging. It's natural to feel like a beginner.
~ Remind them to be patient with themselves when they feel awkward or hesitant. Nobody expects parents to be comfortable with your baby right away.
~ If they are afraid to make mistakes or show their inexperience, they may find themselves backing away from baby. Encourage them to let the nurses give support and help them practice taking care of their baby.
Dads and the NICU
Helping Mom
~ Hereâs how you can help:
~ If she canât go to the NICU, tell her how your babyâs doing. Your partner may not be able to go to the NICU. She may feel tired, uncomfortable or sad to spend time in the NICU. Instead, show her pictures of your baby and tell her about your babyâs condition and medical care.
~ Help her provide breast milk for your baby.
~ Reassure her. Your partner may feel responsible for and guilty about your babyâs condition. If she feels severe guilt, encourage her to talk to a counselor or a support group.
Helping Mom
~ Hereâs how you can help:
~ Be patient. Your partnerâs fears, pain and tiredness may make her stressed. Changing hormones after pregnancy may make her emotional and moody. This sudden change may make it hard for your partner to cope with her feelings.
~ Encourage her to take care of herself. Your partner may not be getting enough rest or eating healthy foods. Bring in a healthy dinner or offer to stay with your baby so she can take some time for herself.
Moving to a Big Boy Bed!
Discharge from the NICU
~ Have a plan
~ Connect with Early Intervention to get set up for an assessment
~ Early intervention is a system of services that helps babies and toddlers with developmental delays or disabilities.
~ Assistive technology (devices a child might need)
~ Audiology or hearing services
~ Speech and language services
~ Counseling and training for a family
~ Medical services
~ Nursing services
~ Nutrition services
~ Occupational therapy
~ Physical therapy
~ Psychological services
Discharge from the NICU
~ Have a plan
~ Connect with a lactation consultant
~ Connect with the pediatrician
~ Discuss your fears with the medical staff
~ Possible Take-Home Equipment
~ Apnea monitor
~ Feeding tubes (gavage) and syringe
~ *Be aware of reflux issues
~ Oxygen
~ Try to get a transition room (24-hours with baby on the delivery floor with you)
Summary
~ There are a variety of challenges preemies face
~ Life in the NICU isnât easy for parents either
~ Normalize parentsâ reactions
~ Help them maintain adequate self-care
~ Encourage NICU-Work-Life balance
~ Be alert to signs of postpartum depression in both parents
~ Help the family develop a transition plan for discharge
When to Seek Counseling (Screening)
~ Parentsâ ability to cope with the situation is not improving and you feel stuck
~ They continue to find no joy in other parts of their life
~ They have trouble with your relationship with their partner or others close to them
~ They feel a parent support group isnât “quite enough”
~ They feel prolonged numbness or detachment
~ They continue to feel detached from their baby
~ They have trouble getting out of bed or starting your day
~ They feel unable to cope or manage other responsibilities
~ They think about harming themselves or others