Successfully Navigating the Parent Landmines in the NICU

Successfully Navigating the Parent Landmines in the NICU

DEB DISCENZA, FOUNDER, PREEMIEWORLD, LLC & INSPIRE’S PREEMIE COMMUNITY

©2016 PREEMIEWORLD, LLC. ALL RIGHTS RESERVED.HTTPS://PREEMIE.INSPIRE.COM & WWW.PREEMIEWORLD.COM

http://preemie.inspire.com/

http://www.preemieworld.com/

Conflict of Interest Disclosure

DEB DISCENZA©2016 PREEMIEWORLD, LLC. ALL RIGHTS RESERVED.

WWW.PREEMIEWORLD.COM

This is to certify that Deb Discenza nor PreemieWorld, LLC do not have conflicts of interest that accompany this presentation.


AgendaS U C C E S S F U L LY N AV I G AT I N G PA R E N T L A N D M I N E S I N T H E N I C U

1

2

3

4

5

Introduction

Empowering the Families in the NICU

Supporting Families in the NICU & Home

Working Through Tough Times in the NICU

Q&A

❤️ NICU Nurses💉Parent Landmines

✔️Provide Tips & Key Points👶Preemie Parent Voices

Part One: Introduction

Love for NICU NursesW H Y Y O U M AT T E R T H E M O S T T O PA R E N T S

NICU Nurses are Angels

You love the babies

You are our connection to the NICU

You are the glue to the NICU

You are the person we remember the most after the NICU stay

What are Parent Landmines?S C E N A R I O S T H AT C R E AT E H I G H S T R E S S W I T H PA R E N T S

Parent Landmines

Intro to the NICU/Trauma

Parent Bonding Challenges

Breastfeeding & Pumping

Life Challenges Beyond NICU

Baby’s Health Declines

Baby is Dying/Dies

Inspire Preemie CommunityH T T P S : / / P R E E M I E . I N S P I R E . C O M

28,000 MEMBERS WORLDWIDE

I AM THE FOUNDEROF THE FORUM ANDTHE MODERATOR

IN THE NICU, AT HOME,IN SCHOOL, ADULTS, PREEMIEANGELS, PREEMIES WITH CP, PREEMIE HOPE, PREEMIE TIPS

PARENTS, GRANDPARENTS,ADULT PREEMIES,WOMEN INHIGH RISK PREGNANCIES, PARENTS OF ANGELS,PARENTS OF DISABLEDPREEMIES

https://preemie.inspire.com/

Survey Demographics: ResponsesH T T P S : / / P R E E M I E . I N S P I R E . C O M

• 182 Female• 26 Male

212

https://www.inspire.com/groups/preemie

Survey: Gestational Age at Birth

20%

31%

49%

MICRO-PREEMIEMODERATE TO LATE PRETERM

VERY PRETERM

102 RESPONDENTS41 RESPONDENTS

65 RESPONDENTS

*data & insights generated from (July 2016) survey of Inspire Preemie Community

Survey DemographicsH T T P S : / / W W W . I N S P I R E . C O M / G R O U P S / P R E E M I E

• Global: Responses from most continents• 60+ pages free text responses

https://www.inspire.com/groups/preemie

Part I: Empowering Parents in the NICUS U C C E S S F U L LY N AV I G AT I N G PA R E N T L A N D M I N E S I N T H E N I C U

NICU Intro

Bonding

Breastfeeding

• Entering the NICU for the first time.• Seeing the baby and medical equipment.

• Control over connecting with infant• Fear of medical equipment

• Pumping Breastmilk • Breastfeeding• Working with team members or not

Quick Share: How does your NICU welcome the parent for the first time?

Landmine #1: Welcoming the Parent

Entering the NICU for the First Time

Deb’s Take

• Middle of the night birth• No welcome packet• Wheeled to NICU post-

birth• Trauma and Back to

Room

1.• Next Day Wheeled to

NICU• At Bedside with Incubator• Had no idea what to do

2.• A nurse came over and

said hello and showed me a couple of things to do and then left.

• Alarms went off and I screamed out for the nurse.

3.

Survey: What made you feel the most welcome in the NICU?

31%

36%

33%

PUMPING ROOMRESOURCE ASSISTANCE

NICU NURSE

PROVIDED A BREAST PUMPING ROOM IN THE NICU

GIVEN RESOURCE ASSISTANCE SUCH AS FREE OR REDUCED

PARKING PASSES

GREETED BY NICU NURSE UPON ARRIVING AT BEDSIDE

The Top 3 Items Out of a List of 7 Items


NICU Families Speak: WelcomeS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

The nurses informed me that I had access to my

daughter 24/7 and to come anytime I felt wellenough. Not knowing anything about the NICUor what was to come, that made a world ofdifference in reminding me that I had an

importantrole as the parent. — MOTHER, VERY PRETERM INFANT

NICU Families Speak: WelcomeS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

We entered the room that had both babies andeach nurse had a sign up welcoming each

baby, by name, to the NICU. The sign said, “Happy Birthday” and was decorated in pink and white. Each nurse told us, “Congratulations on yourbeautiful twin daughters, do you have any questions?” We saw our babies for the first

time and fell in love. — MOTHER, MICRO-PREEMIE TWINS

Tips: Bonding for Parents, Baby, Nurses

Personalize “Your daughter” “Your Son” “I love the name!”I

Intro Introduce yourself and talk about what you are doing for their child.II

Reassurance All emotions are normal and the baby is in the best place.III

Parenting Show them what they can do right now to help their baby.IV

Patience Rollercoaster reminder but that parents are KEY.V

Key Points on Parent/Nurse BondS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Parent OwnershipPromoting that bond making the baby and the NICU less scary.

Parent/Nurse & NICU BondFeeling welcome, feeling useful. Part of the team, no degree needed.

CommunicationStarts a healthy dialogue between parent and professional.

Building TrustThis will be very helpful later on during the tougher discussions.

Quick Share: How does your NICU help parents bond with their infant? How do you give them a sense of control?

Landmine #2: Bonding & Control Over Infant

Trying to be a mother in the NICU

Deb’s Take

• Holding my daughter was

bittersweet.

1.• Doing Kangaroo Care

really changed my approach in the NICU. I could do something!

2.• Doing the first bath was

both scary and delightful I re-wrote the birth experience in my head.

3.

Survey: What helped you most in bonding with your baby in the NICU?

21%

20%

20%

20%

19%

TALKING GENTLY TO MY BABYHOLDING MY BABY

KANGAROO CARE

SIMPLY TOUCH MY BABY

READING SOFTLY TO MY BABY


Survey: How did Kangaroo Care Help You Best?

18%

18%

17%15%

15%

10%7%

VALUABLE MEMBER OF TEAMCOMFORTED ME

COMFORTED BABY

HELPED IN BABY CARE

EMPOWERED TO HELP BABY

INCREASED BREAST MILK


Tips: Parent/Infant Bond

Remind “The baby knows your voice and your smell.”1.

Love Notes! On days of no stimulation - Love Notes help greatly.2.

Kangaroo Care It has great benefits for Mom and baby. 3.

Key Points on Parent/Infant BondS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

ConnectionDirect connection or indirect connection - it all helpful.

Increased VisitationWhen parents have a connection they are more likely to visit and for longer.

BreastmilkWhen a Mother sees her importance in the NICU it can have a significant impact toward breastfeeding.

Reminders to ParentsReminding the parents that the baby knows smell/voice and is seeking them out for comfort is a part of the bonding.

Quick Share: How does your unit promote breastfeeding? How is the topic introduced?

How is there a NICU-wide unified message?

Landmine #2: Breastfeeding

Breastfeeding

Deb’s Take

• I started pumping on my

own in the postpartum unit less than 12 hours after birth.

1.• Proud of myself though no

one ever praised me except the postpartum nurse on Day 1.

2.• Latching was difficult and

support was not consistent. I gave up and kept pumping.

3.

Survey: Did you attempt breastfeeding (putting your baby to the breast)?

73%

27%

NO

YES


Survey: Who helped you the most with breast pumping and breastfeeding matters?

14%

14%

11%11%11%

10%

10%10%

8%

FRIEND NICU NURSE

LACTATION CONSULTANT

ANOTHER PREEMIE PARENT

NICU NUTRITIONIST

FAMILY MEMBER

POSTPARTUM NURSE

NEONATOLOGIST

POSTPARTUM DOCTOR


NICU Families Speak: PumpingS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

It was positive up to the point where I stoppedproducing milk. At that point some NICU

nurseswere making me feel guilty for not pumpingenough!

— MOTHER, MODERATE-LATE PRETERM INFANT


I had a postpartum nurse dump my colostrum, telling me that my micro twins couldn’t have it

anyway.— MOTHER, MICRO-PREEMIE TWINS


Our hospital had a wonderful pump room decorated

to look like a nursery. That made it seem more likepumping at home with a baby. That helped a lot. They had lights down and lamps. The room also

hadextra pump bottles and cleaning supplies for whenyou were done . . . every small touch helped. — MOTHER, MICRO-PREEMIE


I couldn’t get the hand expressing to work for the

colostrum and we brought down a drop in thesyringe, delighted that we got even a bit and

thenurse that was on looked aghast at how little

wewere bringing and looked like she was thinkingwhy did we bother with so little - it upset me

andmade me more worried about getting it.

— MOTHER, MICRO-PREEMIE


It was really stressful in low dependency, trying toestablish breastfeeding yet they insisted on tube feeding her every 3 hours and said I could breast-feed every 4 hours. Yet how would she be hungry?. . . the staff were nursery nurses and I felt there

wasa lot less understanding and too many differingopinions, voices, training, etc. and it wasn’t helpful.


Tips: Pumping & Breastfeeding

Milk = Medicine Her breastmilk is the ultimate medicine for her baby. 1.

Stress Every drop, every ounce, counts. Period.2.

The Drop-Off Regardless of amount, “Liquid gold!” or “You are doing awonderful thing.”

3.

Love Notes Baby talks to Mom . . . with praise and encouragement. Theteam can write there to Mom, too. Family and friends as well.

4.

Daily Check-Ins A check-in to see how milk production is going and if the the team can do anything to help. No judgement, problem-solving.

5.

Key Points on Breastfeeding/PumpingS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Positive IntroductionDirect, honest and positive introduction helps. Trying is key.

Unified Team MessageRegardless of amount, be positive about the fact that there is milk coming in right now. If you support it, make sure the unit is properly set up with a nice pumping room.

Daily Check-InsNo judgement - just asking how things are going and what the team can do to assist.

Praise, Praise, PraisePumping and breastfeeding a NICU infant is hard work. Always praise a parent who is trying.

Part II: Supporting Families NICU/HomeS U C C E S S F U L LY N AV I G AT I N G PA R E N T L A N D M I N E S I N T H E N I C U

Juggling

Competing

Discharge

• Emotions• Priorities

• Opinions in the NICU• Opinions of Family, Friends, Public

• Lockdown During Cold/Flu/RSV Season• Over-Protective Parent• Pediatrician/Doctor: Developmental Watch

Quick Share: How do you support families with siblings, jobs, longdistance commutes to the NICU? How do you encourage

a parent to visit when visitation starts waning?

Landmine #1: Juggling Priorities & Emotions

Juggling Life & Emotions

Deb’s Take

• Went back to work part-

time one week after birth. I used the latter part of the day to visit my daughter.

1.• Pumping breastmilk

throughout each day was hard and exhausting.

2.• Life happens - Hurricane

Isabel, Mother-in-law wanted daily phone calls with full updates. My emotions didn’t hit properly until later on.

3.

Survey: Which of the following priorities did you have to juggle while in the NICU? Select all that apply.

31%

27%15%

14%

12%2%0%HAD TO RETURN TO WORK

PUMPING BREASTMILK

HEALING FROM BIRTH

SIBLINGS AT HOME

OTHERNONE OF THE ABOVE


NICU Families Speak: Juggling EverythingS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Death of identical twin, extremely high risk of death

for my son. I was alone and a hundred miles from

home planning a funeral for one son and makinglife and death decisions for the other. Hospital

bills,insurance coverage, finding time to eat, do

laundry,pay bills, self-care, and sleep.

— MOTHER, MICRO-PREEMIE TWINS


My husband was trying to work and in the midstof losing his job because he was driving me back and forth [and] visiting the baby himself. [And

then] taking care of household chores and caring forourselves.

— MOTHER, VERY PRETERM INFANT


Recovering drug addict. I debated sharing this,but it is a huge aspect of my life and I hope themore people are honest about this issue, the

lessthe stigma will become.


Tips: Juggling Everything

Emotions Remind Parents: All emotions are normal for all people involved in this. 1.

Support Support groups can be a huge help to families on many levelsincluding priority challenges.

2.

Priorities Like breastfeeding, the guilt is always there. So “just try.” 3.

Stops Visiting Call with an update. “Is there anything we can do to help?” 4.

Love Notes When a parent looks forward to these notes, it will likely increase visitation. But breaks are necessary. 5.

Key Points on Juggling EverythingS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

VisitationJust a simple “Great to see you” is all is needed. Guilt will only create more distance.

Check-In on ObstaclesSee what obstacles are creating problems for visitation. See if the social worker can help or a local support group.

Support Groups are GoldA local support group can be useful on many fronts. Partnering with one is worth the time and effort.

Praise, Praise, PraiseRecognize the challenges and tell the parents they are doing great and just do the best that they can.

Quick Share: How do you advise parents when others do not understand this experience?How do you advise parents on RSV season and keeping smokers/ill people away?

Landmine #2: Juggling Opinions

Juggling Opinions

Deb’s Take

• It helped that my daughter

was coming home on medical equipment. RSV season had just started as well. I sent pics/emails.

1.• After that passed people

started to be less understanding about our ongoing concerns for developmental delays.

2.• People got really quiet

once the testing, the diagnoses and more came about. I definitely changed my address book due to this.

3.

NICU Families Speak: Juggling OpinionsS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Family and friends who never experienced a medically-fragile baby often disregarded

requestsfor hand washing as “first time parent” concerns.It was frustrating to try to explain to them that hand washing could mean life or death to our

son. — MOTHER, MICRO-PREEMIE

NICU Families Speak: Juggling OpinionsS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Family members did not understand and were very

difficult to deal with. NICU nurses provided a comfort barrier for me, the mother, and took theburden off of me.— MOTHER, MODERATE-LATE PRETERM INFANT

Tips: Juggling Opinions

Visitors If you encounter family and friends, start with thanking them for supporting the family requests.

1.

Opinions #1 The visitors may need to receive a blunt story of what happenswhen a baby gets sick due to germs.

2.

Opinions #2 Backing up families with visitors is so helpful. 3.

Opinions #3 Remind the frustrated parent(s) that they are not alone in thisand blaming the doctors is key. Maybe a letter can be created? 4.

Love Notes A “love note” directed at visitors is very helpful. “My immune systemis going to be weak for a while. Thank you for hand washing!” 5.

Key Points on OpinionsS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

VisitorsYou backing up the parents on hand-washing, illness, etc. is key. Blunt talk also helps. Blame the doctor helps, too.

Parents Need ValidationGiving visitors a positive view of the parents is helpful now and for at home. “They are smart, diligent parents who know their child’s health depends on them.”

Support GroupsSupport groups can help with supplies, understanding and more especially as that baby goes home.

Love Notes“Mom I really appreciate your hard work being my advocate” or “Mom is a crucial part of the NICU team.”

How do you prepare parents for discharge?Hand off to the community doctor?

Make sure developmental checks are happening?

Landmine #3: Discharge

Discharge

Deb’s Take

• I wanted to take every

team member home with me. I was THAT nervous!

1.• I found the pediatrician

nice but not as well-versed in preemies and developmental issues as I would have liked.

2.• I realized that the

pediatrician was more a generalist than a specialist. I was the expert of my child, the connecting point of information and requests.

3.

Survey: When your baby was discharged home, how prepared did you feel?

21%

48%

10%9%

4%8%RATHER UNCONFIDENT

VERY CONFIDENT

SOMEWHAT CONFIDENT

VERY UNCOMFORTABLE

EXTREMELY UNCOMFORTABLEOTHER


NICU Families Speak: DischargeS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Desperate to go home (after 3 months)! So yes,

confident. Confident that it would be so mucheasier to look after my baby away from the disempowering situation of the hospital.


NICU Families Speak: DischargeS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Nervous - first time parent of premature twins.

— MOTHER, MODERATE TO LATE PRETERM INFANT TWINS

Tips: Discharge & Parent Ideas

Nerves Its normal to feel that way. Just take it one step at a time.

1.

Concerns Trust your instinct. You know your child better than anyone.2.

Development Always educate parents on specialists and therapists. 3.

Support Always try to connect a parent to a support group before they head home if that isn’t already happening. That can really helpthem cope with anxieties and isolation.

4.

Part III: Tough Moments in the NICUS U C C E S S F U L LY N AV I G AT I N G PA R E N T L A N D M I N E S I N T H E N I C U

Declining Health

Death

• Emotions• Opinions

• Helping the Family• Team Effort

Quick Share: How does your NICU handle giving tough news to parents?How does your NICU support parents at this time?

How does your NICU maintain trust with parents during this time?

Landmine #1: When a Baby Declines in Health

Decline of Baby’s Health

Deb’s Take

• My daughter grew very

sick and I did not know about it until I arrived at the NICU. No touch. It was an infection.

1.• I wished I had known

earlier. I would have been there sooner and stayed later in order to be by my daughter’s side.

2.• If my daughter had died

before I got there, I would have missed a chance to say good bye.

3.

Survey: Did your baby have a point where he/she was declining and you believe was expected to die?

40%60%

NO

YES


NICU Families Speak: Baby DecliningS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

The baby got NEC when under 2 lbs in weight,three weeks old. The nurse told me when I

camein, saw my face and gave me an enormous

hug.I will always remember that hug - it is what Ineeded (the baby survived).— MOTHER, MICRO-PREEMIE


Calmly. The team was professional and told

me everything matter of factly.— MOTHER, MICRO-PREEMIE


The doctors always gave me worst case scenariosThis worked well with me. [The baby’s] nurse was the best. She sat with me and discussed

everything Ihad questions about. I so love the NICU staff.

— MOTHER, MODERATE-LATE PRETERM INFANT


The NICU team was supportive and

compassionate. They were also very

straightforward with the information provided. — MOTHER, MICRO-PREEMIE

Tips: Baby’s Decline

Trust From the top down, building trust is important and starts with the introduction to the NICU.

1.

Communication Regular updates continues trust.2.

Supportive Showing emotion is perfectly okay. The parent needs it. 3.

Map Steps Always frame medical plans in terms of steps being taken sothe parents know the full plan. This includes the positive and thenegative. Always update as things change. Always ask if thereare questions.

4.

Love Notes Communication from the baby, from the team. 5.

Key Points on Baby DecliningS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Honesty = TrustParents will trust you when you are honest about the situation. Otherwise “Dr. Google” will be consulted.

Directness Keeps TrustParents will pick up on someone trying to be indirect.

Willingness to Keep TryingParents whose NICUs were willing to think of other ideas, even going to another NICU, were grateful. This is about the baby.

Love NotesA piece of paper can go a long way to speak for the baby, the NICU and the parents.

Quick Share: What procedures are in place to support a family as a baby dies? After a baby dies? Who is involved

with the process ?

Landmine #2: When a Baby Dies

Death of a Baby

Deb’s Take

• My daughter did not die.

though we had some very close calls. I have talked with families where they fought the NICU to try and save their infant.

1.• Those same families had

horrible experiences as well as the aftermath with the team.

2.• I also see the side of the

NICU team, as they watch a baby suffer while the families try to continue care that won’t change.

3.

11 died during the NICU stay; 3 died after the NICU stay.

families on the survey whose babies died

14

NICU Families Speak: Baby DiesS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

They were amazing. All of the nurses were affected by her death. On the night of her deathone of the docs came straight to the ER to see if he could do something to revive her. When she codedhe stayed with us, hugged us, did everything hecould to comfort us. When she passed, the doctorhelped us with the service for our daughter andspoke beautiful words in the ceremony. Many

nursesand NICU staff came to the service . . . they arefamily to us [to] today. — MOTHER, MICRO-PREEMIE

NICU Families Speak: Baby DiesS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

We had to hold our baby for the last time inthe same uncomforting ugly room. The lighting was depressing and everything looked orange and even more sad in our photos. They had thenastiest smelling soap and lotion for the little bathwe gave the baby first. We would have loved tohave him smell like Johnson & Johnson’s just

once.They did their best taking some other pictures for

meafter he passed but they were so depressing I justthrew them away.


Tips: Baby’s Death

Emotion Seeing your emotions helps them cope.1.

Communication Be clear how things will happen as support is removed, time withbaby and hand off information on organizing an infant’s funeral.

2.

Supportive Having clergy there, social work there is key. Doctor, too! 3.

Family Time The family needs a quiet space to spend time with their infant. Ask a support group to fundraise to set it up, decorate it and provide information for social workers to hand out.

4.

Love Notes Sending a love note from the team would be so welcome. 5.

Key Points: When a Baby DiesS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Parent GriefThe parent’s grief is shaped by those last days, hours, minutes and what you say to them.

Having a PlanHaving a clear plan on how to handle things is key to helping a family focus on what is most important: their beloved infant.

Supportive TeamA team surrounding a family is helpful. So is expressing emotion. They want to know their baby meant something to you.

Love NotesCommunicating with a note to the family later on really makes a difference. The family will treasure it because it means their baby has not been forgotten.

Ending SummaryS U C C E S S F U L LY N AV I G AT I N G T H E PA R E N T L A N D M I N E S O F T H E N I C U

Trust, Day 1, Minute 1.Having a parent’s consistent trust i.e. key to all of the tough discussions that happen later. It could save time, and a life.

Mixed Message.I found that mixed messages were a constant in the surveys. This goes across every landmine. Consider doing an assessment of your NICU and make changes.

Respecting Parents.Regardless of background or education, these parents are the expert of their child. They knew him/her first.

NICU Nurses are Special.You have a unique position in the NICU. You see everything surrounding that baby. You are part of the family.

Contact InformationP L E A S E F E E L F R E E T O C O N TA C T M E

Deb Discenza, PreemieWorld

[email protected]

+1 703-678-3922

P.O. Box 10733Burke, Virginia 22009United States of America

mailto:[email protected]

Ask away!

Any questions?

DEB DISCENZA, FOUNDER PREEMIEWORLD, LLC & INSPIRE’S PREEMIE COMMUNITY

HTTPS://PREEMIE.INSPIRE.COM WWW.PREEMIEWORLD.COM

http://preemie.inspire.com/


Successfully Navigating the Parent Landmines in the NICU

Health & Medicine

Transcript of Successfully Navigating the Parent Landmines in the NICU