Supporting Premature Infants and their Families

1. Supporting Premature Infants and their Families Transition from Hospital to Home Cindy Redd, M.Ed Ann Marie Elmore, P.T

2. What is a transition? • Passage: the act of passing from one state or place to the next • Conversion: an event that results in a transformation • Change from one place or state or subject or stage to another • Cause to convert or undergo a transition wordnet.princeton.edu

3. “Transitionsare Tricky” • Needs, priorities, concerns, strengths, resources etc. are changing • Strategies for support and intervention must be assessed and adjusted frequently • Stress and anxiety may increase due to change even when change is positive. • Beginning and end of transition can be unclear.

4. “Tricks” for Supporting Transitions • View transition as “bridge” from one place/state to the next. • Reflect and recognize progress and movement • Celebrate the baby steps of progress • Expect and support grief for what’s left behind

5. Supporting Transition from Hospital to Home • Needs of Premature Infants • Needs of Families • Services Needed

6. Needs of Premature Infants • Feeding • Sleep • Self-Regulation • Social Interactions • Motor Development • Infection Control

7. Feeding • Taking everything by mouth (full po feeds) is a newly acquired skill, two or three days, therefore feeding is not well established and can be stressful for parents

8. Common Feeding Concerns • Chokes • Wants to Eat all the Time • Takes a Long Time to Eat • Sucks Frantically • Frequently Spits Up

9. Chokes When Feeding • Difficulty coordinating suck, swallow, breathing. • Slow flow nipple • Side lying to feed • Assist baby with pacing and timing by tilting the bottle

10. Wants To Eat All The Time • Babies sucking to feed and to self-regulate

11. Common Sleep Concerns • Only sleeps if being held • Sleeps all day, stays awake during the night • Catnaps throughout the day • Does not sleep thought the night when it’s age appropriate.

12. Sleeps Only When Held • Holding provides the supports babies need to sleep • containment • incline • ventral support • warmth • Mother’s body is “home” to baby • Rhythms of breathing & heart beat familiar • Mother’s smell is comforting

13. Sleeps all Day, Awake at Night • It’s easier for premature baby to be awake when it is dark and quiet. • The “stress” of daytime activities can cause premature baby to “shut down.” • Strategies should support baby’s efforts to stay awake or asleep at the appropriate times.

14. Activities to Support Sleep • Place light and/or radio near the baby’s bassinet at night • Avoid social interactions and “invitation to play”

15. Activities to Support Alertness • Dark quiet environment is optimal environment for being awake/alert • Even dim natural light and buffered sounds can cause stress reaction. • Dim lights and close blinds, especially those in baby’s face • Minimize noise and social activity • Communicate “invitation to play” when baby wakes up during the day

16. Social Interaction & Self-Regulation Concerns • “My baby does no want to look at me” • Fussy • Maybe self-regulation or reflux related

17. Self-Regulation Concerns • Baby does not want to look at parents • Fussiness

18. Activities to Support Social Interaction • Decrease environmental stimulation • Read and respond to subtilities of infant cues

19. Activities to Decrease Irritability • Dispel myth – “baby just wants to be held” • Support infant’s effort to self-regulate • Suck • Hands together • Hands to mouth • Feet together • Give infant time to respond to support • Avoid constant repositioning • Vestibular Movement with containment

20. Activities to Decrease Irritability • Decrease stimulation • Understand how different environments and fatigue effects self-regulation

21. Motor • Premature infants have strong extensor muscles • If extension activities are encouraged then baby will develop extensor dominance • Encourage flexion

22. Extensor Dominance Influences • Hyper-extended Neck • Retracted Shoulders • Decreased Trunk/Pelvic Mobility • Frog Legged • Toe Walking

23. Activities to Prevent or Decrease Extensor Dominance Facilitate • Flexion • Trunk/Pelvic Mobility • Weight Shifting

24. Carrying • Shoulders Forward • Hips Tucked and Together

25. Awake Stomach Time • Activates Neck Flexors • Facilitates Shoulder Forward

26. Trunk &Pelvic Mobility • Hand to Feet Play • Pivoting on Stomach

27. Limit Leg Extension Activities • Lap Standing • Exersaucers • Johnny Jump Ups • Be sure heel cords are not tight

28. Plageocephaly • With “back to sleep” infants spend more time on their backs, in infant carriers, car seats & swings and much less awake/play tummy time • Prior to 2 months (corrected age), babies will turn their head to the side when lying on their back • 85% of newborns have right head preference

29. Baby’s heads are very moldable • Increase in abnormal head shapes

30. What To Do • Monitor head position • Alter sleep, carrying, and play positions • Head in midline in carriers, car seats, swings • Range of motion exercises- preferably active • Increase awake stomach time and sitting play

31. Torticollis • Head tilted to the side and rotated to the opposite side • Torticollis can be obvious or subtle • Head position can lead to flat head

32. Infection Control • Immature immune system • BPD and Cardiac conditions • RSV • Child care

33. Needs of Families • Emotional responses and support networks • Shift of trust from hospital to community providers • Compensatory Parenting

34. Emotional responses and support networks • Parent may “fall apart” after discharge even though baby is okay • Post-traumatic reactions to smells & sounds in the community that may trigger memory of NICU • FSN, March of Dimes, Hospital Reunions

35. Shift of trust from hospital to community • Neonatologist Pediatrician • NICU specialists EI/CSC providers • NICU nurse daily caregivers

36. Compensatory Parenting • Tend to try to compensate for perceived loss • Parenting should be based on developmental info & family values • Parenting should not be based on fear and guilt

37. Services Needed • Consultation & Anticipatory Guidance • Observation & Monitoring • Initial Home Visits • Coordination of Services

38. Consultation & Anticipatory Guidance • Relationship begins with parent/caregiver and evolves toward infant • Parent brings expertise from NICU experience • Routine assessment of “how things are going?” • Partners in problem solving not solutions • Prepare family for “what to expect next”

39. Observation & Monitoring • Looking for subtle qualitative differences not measurable delays • Should monitor over time since some differences may appear at various developmental stages. • Encourage families to stay enrolled in services at least until18 mos. when motor & language can be assessed.

40. Initial Home Visits • May need to be more frequent due to baby’s rapid growth & development • May take longer due to amount of concerns and mother’s need to “tell her story” • May be difficult to schedule due to other appointments, stress of having visitor and desire to “lay claim” on their baby.

41. Coordination of Services • Services may include medical, developmental, legal, social and support. • Important to be sensitive to # of service providers involved with family • Communication& collaboration between providers is critical and challenging