Working with NICU babies and families entails a special, integrated approach. Read more in this post about 5 considerations every Early Intervention therapist should know when working with NICU graduates.

As a pediatric Occupational Therapist practicing in the neonatal intensive care unit (NICU), I have the advantage of over 20 years of experience in pediatrics and early intervention.

I form very close relationships with my NICU families, but I know that when I pass families with fragile babies on to Early Intervention therapy practitioners, their needs will continue to be met.

I also have the perspective from the family’s side since I had a NICU baby myself. 

I was very fortunate that my baby was only in the NICU for about a week after being born with meconium and in respiratory distress.

This was just enough to allow me to understand that terrified feeling parents have of bringing the first baby home, suddenly disconnected from all monitors, support and the watchful eye of skilled NICU nurses.

My experience provided me with the empathy to always remember the holistic approach to NICU families, often caring for the mom as much as the baby.

It definitely takes a special, more integrated approach when working with post NICU families.  

Below are 5 considerations to be mindful of the next time you receive a NICU graduate to your caseload:

1.Consider the needs of the entire family

Early intervention therapists are adept at taking a holistic, family-centered approach to treating young children, but families of NICU graduates may need a little extra support.

These families have been through a traumatic experience.

Simply having the baby separated from mom is traumatic, but having to worry about the newborn’s health adds an additional level of concern and stress.

Families are likely nervous about having another set of hands on their child.

They have spent weeks or months watching their fragile newborn receive medical procedural touch as opposed to the loving therapeutic touch babies should experience.

Families may be more apprehensive about therapy and it becomes incumbent upon the EI therapist to thoroughly explain how the baby is being touched and why the therapy is beneficial. 

It is also important to check in with mom and dad’s mental health.

How are they adjusting to having their baby at home.  Are they experiencing fear and anxiety, or even guilt?

There are a lot of emotions involved in having a baby in the NICU. 

Early Intervention therapists can help parents to process these feelings so they do not interfere with the care of the baby.

Early Intervention therapists should also be vigilant to postpartum depression because mothers with NICU babies are at an increased risk.

In a recent study in the American Journal of Perinatology, it was found that approximately 19.1% of mothers with babies in the NICU experience significant depressive symptoms verses 15% in the general population. 

If there are other children in the family, parents are likely feeling pulled in two different directions.

Many moms and dads have shared with me that they experience guilt leaving the other children at home while vising the baby and guilt associated with leaving the baby in the NICU to go home to their other children.

They are likely still trying to navigate this balancing act now that they have their baby at home and could use some support in keeping older children safely engaged and involved in the care of the baby, while meeting their particular needs.

2. Feeding the baby

In the NICU, we spend hours and hours practicing feeding.

I use the term practicing because feeding a NICU baby is a process, verses a means to an end. 

We experiment with different bottles, nipples, formulas, donor breastmilk, breastfeeding, breastfeeding with a nipple shield, without a nipple shield, positioning, time of day, duration of feed and the list goes on and on.

For a newborn to suck, swallow and breathe in a coordinated manner it requires the firing of several cranial nerves, cervical nerves, thoracic nerves and over thirty muscles of the face, head and neck and throat.

It is an involved process for a very tiny baby and can take months to perfect.

I always tell parents we are practicing so they are less likely to become discouraged when babies don’t take the full bottle.

They are able to become more invested in the process when they look at each feed as practice and part of an ongoing process.

The NICU is a very controlled environment for feeding. The lights are dim, we work on a schedule, parents have therapists, nurses and lactation consultants nearby for support.

Feeding is a different situation at home. Some considerations for the EI therapist could include:

• Supporting families to use the correct bottle, nipple and formula based on the baby’s constantly changing needs.

• Determining a feeding schedule so they can take advantage of some of the structure they had in the NICU.

• Support for baby and caregivers around positioning for feeding, sleep and playtime.

3. Positioning the baby

Therapists and nurses work very hard on positioning the baby in the NICU, careful to consider midline alignment, protection of joints, preservation of head shape and overall symmetry.

When babies go home, they may be in bouncy seats, swings, car seats, strollers and other containers that we do not have in the NICU.

It is important that the EI therapists evaluate the baby’s position in all of these devices. Safety should always be the first and most important consideration.

Often babies go home from the hospital, still smaller than a typical newborn and a lot of the baby products on the market are designed for full term babies.

Once safety is confirmed, therapists should make sure that babies are positioned in physiological flexion as much as possible to facilitate bringing hands to face and limbs toward midline.

Gel cushions or donuts can be used under the baby’s head in strollers or bouncy seats when baby is supervised to avoid plagiocephaly.

Baby should be allowed full range of motion of the neck in all devices to avoid torticollis. 

Every home environment will be different, so it is really helpful for EI therapists to fully evaluate all areas where babies spend time.

I always recommend wearing the baby as much as possible after the baby goes home.

I am a big fan of baby slings and vertical carriers. They are great for bonding, building baby’s sense of equilibrium, and vision development as well. 

4. Tummy Time

Tummy time is critical for early development. It helps strengthen the baby’s neck, shoulders and upper back muscles and eventually provides the foundation for rolling and crawling as babies start to pull their little knees up underneath them.

We start tummy time immediately in the NICU and give babies tummy time every single day when possible.

I encourage parents to continue tummy time at home, but at follow up clinics, parents often tell me that their baby hates tummy time so they don’t do it or they have a pet so they can’t do it.

EI therapists can continue to encourage tummy time and problem solve with parents to make tummy time easier for everyone.

Some alternatives that therapists can teach caregivers may include:

• Placing baby on the floor, such as supervised tummy time in crib, bed, changing table or sofa.

• Lying on the bed or sofa and place baby in tummy time on parent’s chest, encouraging baby to look up at parent’s face to build that neck strength.

• Baby can also lie in tummy time across parent’s lap. 

• Carrying upright in a baby carrier (once baby is large enough)

• Rolling up a small blanket and placing it under baby’s chest to create a slight incline.

5. Vision development

The NICU is great for many things, but not for the baby’s visual development.

Typically, there are dim lights and not a lot of interesting things for babies to look at.

When babies are born, they can best see about 8-10 inches from their face and they can see shades of grey.

Babies are not able to see all of the colors of the spectrum because the rods and cones in their eyes have not fully formed yet, but this develops significantly over the first few weeks and the baby needs visual stimulation for this to occur.

There is not a lot of visual stimulation inside an incubator.

When babies get home from the NICU and can finally process sunlight, objects of varying depths outside, moving items such as pets and other children, their vision has the potential to develop further.

The EI therapist can encourage vision development by encouraging caregivers to:

• have babies gaze up their faces as well as looking at other family members faces.

• place a mirror behind the car seat so the baby can gaze at their own face. 

• hang interesting mobiles and toys over cribs, strollers and car seats.

• to switch visual objects to something to keep baby interested.

• to allow baby to look out windows or go outside so they can perceive different depths, colors and brightness. 

Most importantly, there should be some continuity of care.

EI therapists OTs should find out the name of the NICU therapist and make a phone call for a quick consult if there are any questions.

NICU and EI therapists should work together to make the transition to home as easy as possible for the baby and they whole family.

These children may be still going to a lot of medical appointments, having a lot of services, and therapists coming into the home and when NICU and EI therapists work together, it can give these families the best start possible.

Thank you to our guest blogger, Aimee Ketchum, OTD, OTR/L, CNMI for sharing her insights and expertise in working with NICU babies and families. Aimee has a wealth of information that she shares on her website in addition to her parenting program STEM Starts Now that provides parents everywhere with the tools to give their babies the best start possible. Check out Aimee’s work here!

Want to learn more from Aimee?

Join The Therapy Village online membership for EI and preschool Occupational Therapists where I will be interviewing Dr. Aimee this month to ask all our burning questions and learn more about working with post NICU graduates.