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Successfully Navigating the Parent Landmines in the NICU

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Deb Discenza of PreemieWorld and the Inspire Preemie Support Community, presents at the 9th Council of International Neonatal Nurses Conference (COINN), in August 2016.

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Successfully Navigating the Parent Landmines in the NICU

  1. 1. 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
  2. 2. 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.
  3. 3. Agenda S U C C E S S F U L L Y N A V I G A T I N G P A 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
  4. 4. ❤️ NICU Nurses 💉Parent Landmines ✔️Provide Tips & Key Points 👶Preemie Parent Voices Part One: Introduction
  5. 5. Love for NICU Nurses W H Y Y O U M A T T E R T H E M O S T T O P A 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
  6. 6. What are Parent Landmines? S C E N A R I O S T H A T C R E A T E H I G H S T R E S S W I T H P A 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
  7. 7. Inspire Preemie Community H 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 FOUNDER OF THE FORUM AND THE MODERATOR IN THE NICU, AT HOME, IN SCHOOL, ADULTS, PREEMIE ANGELS, PREEMIES WITH CP, PREEMIE HOPE, PREEMIE TIPS PARENTS, GRANDPARENTS, ADULT PREEMIES,WOMEN IN HIGH RISK PREGNANCIES, PARENTS OF ANGELS, PARENTS OF DISABLED PREEMIES
  8. 8. Survey Demographics: Responses H 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
  9. 9. Survey: Gestational Age at Birth 20 % 31 % 49 % MICRO-PREEMIE MODERATE TO LATE PRETERM VERY PRETERM 102 RESPONDENTS 41 RESPONDENTS 65 RESPONDENTS *data & insights generated from (July 2016) survey of Inspire Preemie Community
  10. 10. Survey Demographics H 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
  11. 11. Part I: Empowering Parents in the NICU S U C C E S S F U L L Y N A V I G A T I N G P A 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
  12. 12. Quick Share: How does your NICU welcome the parent for the first time? Landmine #1: Welcoming the Parent
  13. 13. 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.
  14. 14. Survey: What made you feel the most welcome in the NICU? 31 % 36 % 33 % PUMPING ROOM RESOURCE 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 *data & insights generated from (July 2016) survey of Inspire Preemie Community
  15. 15. NICU Families Speak: Welcome S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 well enough. Not knowing anything about the NICU or what was to come, that made a world of difference in reminding me that I had an important role as the parent. — MOTHER, VERY PRETERM INFANT
  16. 16. NICU Families Speak: Welcome S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 and each 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 your beautiful twin daughters, do you have any questions?” We saw our babies for the first time and fell in love. — MOTHER, MICRO-PREEMIE TWINS
  17. 17. 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
  18. 18. Key Points on Parent/Nurse Bond S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Parent Ownership Promoting that bond making the baby and the NICU less scary. Parent/Nurse & NICU Bond Feeling welcome, feeling useful. Part of the team, no degree needed. Communication Starts a healthy dialogue between parent and professional. Building Trust This will be very helpful later on during the tougher discussions.
  19. 19. 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
  20. 20. 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.
  21. 21. Survey: What helped you most in bonding with your baby in the NICU? 21 % 20 % 20 % 20 % 19 % TALKING GENTLY TO MY BABY HOLDING MY BABY KANGAROO CARE SIMPLY TOUCH MY BABY READING SOFTLY TO MY BABY *data & insights generated from (July 2016) survey of Inspire Preemie Community
  22. 22. Survey: How did Kangaroo Care Help You Best? 18 % 18 % 17 % 15 % 15 % 10 % 7% VALUABLE MEMBER OF TEAM COMFORTED ME COMFORTED BABY HELPED IN BABY CARE EMPOWERED TO HELP BABY INCREASED BREAST MILK *data & insights generated from (July 2016) survey of Inspire Preemie Community
  23. 23. 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.
  24. 24. Key Points on Parent/Infant Bond S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Connection Direct connection or indirect connection - it all helpful. Increased Visitation When parents have a connection they are more likely to visit and for longer. Breastmilk When a Mother sees her importance in the NICU it can have a significant impact toward breastfeeding. Reminders to Parents Reminding the parents that the baby knows smell/voice and is seeking them out for comfort is a part of the bonding.
  25. 25. Quick Share: How does your unit promote breastfeeding? How is the topic introduced? How is there a NICU-wide unified message? Landmine #2: Breastfeeding
  26. 26. 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.
  27. 27. Survey: Did you attempt breastfeeding (putting your baby to the breast)? 73 % 27 % NO YES *data & insights generated from (July 2016) survey of Inspire Preemie Community
  28. 28. 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 *data & insights generated from (July 2016) survey of Inspire Preemie Community
  29. 29. NICU Families Speak: Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 stopped producing milk. At that point some NICU nurses were making me feel guilty for not pumping enough! — MOTHER, MODERATE-LATE PRETERM INFANT
  30. 30. NICU Families Speak: Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U I had a postpartum nurse dump my colostrum, telling me that my micro twins couldn’t have it anyway. — MOTHER, MICRO-PREEMIE TWINS
  31. 31. NICU Families Speak: Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Our hospital had a wonderful pump room decorated to look like a nursery. That made it seem more like pumping at home with a baby. That helped a lot. They had lights down and lamps. The room also had extra pump bottles and cleaning supplies for when you were done . . . every small touch helped. — MOTHER, MICRO-PREEMIE
  32. 32. NICU Families Speak: Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U I couldn’t get the hand expressing to work for the colostrum and we brought down a drop in the syringe, delighted that we got even a bit and the nurse that was on looked aghast at how little we were bringing and looked like she was thinking why did we bother with so little - it upset me and made me more worried about getting it. — MOTHER, MICRO-PREEMIE
  33. 33. NICU Families Speak: Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U It was really stressful in low dependency, trying to establish 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 was a lot less understanding and too many differing opinions, voices, training, etc. and it wasn’t helpful. — MOTHER, MICRO-PREEMIE
  34. 34. 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 a wonderful thing.” 3. Love Notes Baby talks to Mom . . . with praise and encouragement. The team 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.
  35. 35. Key Points on Breastfeeding/Pumping S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Positive Introduction Direct, honest and positive introduction helps. Trying is key. Unified Team Message Regardless 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-Ins No judgement - just asking how things are going and what the team can do to assist. Praise, Praise, Praise Pumping and breastfeeding a NICU infant is hard work. Always praise a parent who is trying.
  36. 36. Part II: Supporting Families NICU/Home S U C C E S S F U L L Y N A V I G A T I N G P A 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
  37. 37. Quick Share: How do you support families with siblings, jobs, long distance commutes to the NICU? How do you encourage a parent to visit when visitation starts waning? Landmine #1: Juggling Priorities & Emotions
  38. 38. 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.
  39. 39. Survey: Which of the following priorities did you have to juggle while in the NICU? Select all that apply. 31 % 27 % 14 % 14 % 12 % 2%0%HAD TO RETURN TO WORK PUMPING BREASTMILK HEALING FROM BIRTH SIBLINGS AT HOME OTHER NONE OF THE ABOVE *data & insights generated from (July 2016) survey of Inspire Preemie Community
  40. 40. NICU Families Speak: Juggling Everything S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 making life 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
  41. 41. NICU Families Speak: Juggling Everything S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U My husband was trying to work and in the midst of 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 for ourselves. — MOTHER, VERY PRETERM INFANT
  42. 42. NICU Families Speak: Juggling Everything S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Recovering drug addict. I debated sharing this, but it is a huge aspect of my life and I hope the more people are honest about this issue, the less the stigma will become. — MOTHER, MICRO-PREEMIE
  43. 43. 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 levels including 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.
  44. 44. Key Points on Juggling Everything S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Visitation Just a simple “Great to see you” is all is needed. Guilt will only create more distance. Check-In on Obstacles See what obstacles are creating problems for visitation. See if the social worker can help or a local support group. Support Groups are Gold A local support group can be useful on many fronts. Partnering with one is worth the time and effort. Praise, Praise, Praise Recognize the challenges and tell the parents they are doing great and just do the best that they can.
  45. 45. 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
  46. 46. 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.
  47. 47. NICU Families Speak: Juggling Opinions S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 requests for 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
  48. 48. NICU Families Speak: Juggling Opinions S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 the burden off of me. — MOTHER, MODERATE-LATE PRETERM INFANT
  49. 49. 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 happens when 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 this and 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 system is going to be weak for a while. Thank you for hand washing!”5.
  50. 50. Key Points on Opinions S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Visitors You backing up the parents on hand-washing, illness, etc. is key. Blunt talk also helps. Blame the doctor helps, too. Parents Need Validation Giving 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 Groups Support 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.”
  51. 51. How do you prepare parents for discharge? Hand off to the community doctor? Make sure developmental checks are happening? Landmine #3: Discharge
  52. 52. 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.
  53. 53. 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 UNCOMFORTABLE OTHER *data & insights generated from (July 2016) survey of Inspire Preemie Community
  54. 54. NICU Families Speak: Discharge S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 much easier to look after my baby away from the disempowering situation of the hospital. — MOTHER, MICRO-PREEMIE
  55. 55. NICU Families Speak: Discharge S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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
  56. 56. 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 help them cope with anxieties and isolation. 4.
  57. 57. Part III: Tough Moments in the NICU S U C C E S S F U L L Y N A V I G A T I N G P A 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
  58. 58. 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
  59. 59. 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.
  60. 60. Survey: Did your baby have a point where he/she was declining and you believe was expected to die? 40 %60 % NO YES *data & insights generated from (July 2016) survey of Inspire Preemie Community
  61. 61. NICU Families Speak: Baby Declining S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 came in, saw my face and gave me an enormous hug. I will always remember that hug - it is what I needed (the baby survived). — MOTHER, MICRO-PREEMIE
  62. 62. NICU Families Speak: Baby Declining S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Calmly. The team was professional and told me everything matter of factly. — MOTHER, MICRO-PREEMIE
  63. 63. NICU Families Speak: Baby Declining S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U The doctors always gave me worst case scenarios This worked well with me. [The baby’s] nurse was the best. She sat with me and discussed everything I had questions about. I so love the NICU staff. — MOTHER, MODERATE-LATE PRETERM INFANT
  64. 64. NICU Families Speak: Baby Declining S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U The NICU team was supportive and compassionate. They were also very straightforward with the information provided. — MOTHER, MICRO-PREEMIE
  65. 65. 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 so the parents know the full plan. This includes the positive and the negative. Always update as things change. Always ask if there are questions. 4. Love Notes Communication from the baby, from the team.5.
  66. 66. Key Points on Baby Declining S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Honesty = Trust Parents will trust you when you are honest about the situation. Otherwise “Dr. Google” will be consulted. Directness Keeps Trust Parents will pick up on someone trying to be indirect. Willingness to Keep Trying Parents whose NICUs were willing to think of other ideas, even going to another NICU, were grateful. This is about the baby. Love Notes A piece of paper can go a long way to speak for the baby, the NICU and the parents.
  67. 67. 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
  68. 68. 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.
  69. 69. 11 died during the NICU stay; 3 died after the NICU stay. families on the survey whose babies died
  70. 70. NICU Families Speak: Baby Dies S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 death one of the docs came straight to the ER to see if he could do something to revive her. When she coded he stayed with us, hugged us, did everything he could to comfort us. When she passed, the doctor helped us with the service for our daughter and spoke beautiful words in the ceremony. Many nurses and NICU staff came to the service . . . they are family to us [to] today. — MOTHER, MICRO-PREEMIE
  71. 71. NICU Families Speak: Baby Dies S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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 in the same uncomforting ugly room. The lighting was depressing and everything looked orange and even more sad in our photos. They had the nastiest smelling soap and lotion for the little bath we gave the baby first. We would have loved to have him smell like Johnson & Johnson’s just once. They did their best taking some other pictures for me after he passed but they were so depressing I just threw them away. — MOTHER, MICRO-PREEMIE
  72. 72. Tips: Baby’s Death Emotion Seeing your emotions helps them cope.1. Communication Be clear how things will happen as support is removed, time with baby 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.
  73. 73. Key Points: When a Baby Dies S U C C E S S F U L L Y N A V I G A T I N G T H E P A R E N T L A N D M I N E S O F T H E N I C U Parent Grief The parent’s grief is shaped by those last days, hours, minutes and what you say to them. Having a Plan Having a clear plan on how to handle things is key to helping a family focus on what is most important: their beloved infant. Supportive Team A team surrounding a family is helpful. So is expressing emotion. They want to know their baby meant something to you. Love Notes Communicating 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.
  74. 74. Ending Summary S U C C E S S F U L L Y N A V I G A T I N G T H E P A 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.
  75. 75. Contact Information P L E A S E F E E L F R E E T O C O N T A C T M E Deb Discenza, PreemieWorld deb@preemieworld.com +1 703-678-3922 P.O. Box 10733 Burke, Virginia 22009 United States of America
  76. 76. Ask away! Any questions? DEB DISCENZA, FOUNDER PREEMIEWORLD, LLC & INSPIRE’S PREEMIE COMMUNITY HTTPS://PREEMIE.INSPIRE.COM WWW.PREEMIEWORLD.COM

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