NICU Nurses

September 16, 2011 at 11:48 pm | Posted in Grief, hospital, mourning, NICU, parents | 6 Comments
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This week I, along with 3 other mothers, spoke to group of NICU nurses.  The nurses have bereavement training.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital.   I listened to the other women recount their bittersweet experiences.  I spoke about mine.  This is the second time I have spoken to a group of NICU nurses.   I am very thankful that this group of people are able to be NICU nurses.  I never could do it.  I am so amazed by their skill and compassion.

The other women who spoke turned their grief into action.  One of the women and her husband started a grief group at their church.  Another women writes a blog.  The third woman started a group called Rock Goodbye Angel.   The purpose of the group is to “encourage families who have lost a baby to regain hope by caring for them during their time of grief so that they know they are not alone.”

I think that the 4 of us gave the nurses some helpful feedback.  A few suggestions came out of the discussion:

  1. Hospital staff (nurses, chaplains, etc.) perhaps do not need to bring up topics such as funeral arrangements and autopsies while the baby is still alive.  Parents of babies in the NICU are trying to focus on hope and survival.
  2. Inform everyone in the hospital when there has been a death so before they come into your hospital room they already know.  This way when the person who comes to empty the trash they will not ask how the baby is doing.  Our hospital puts a dove outside the door to indicate tha the baby has died.
  3. It would be great if there were separate entrances and exits for parents whose baby has died.  Waiting in the wheelchair after being discharged from the hospital all the mothers are in the same area.  It was excruciating leaving Jake in the hospital and waiting with happy new parents and their babies did not help.  On the flip side, when I left the hospital with the twins, I was waiting in the wheelchair for Evan to pick us up.  I was sitting next to a mother with empty arms.  I knew what that meant and my heart broke for her.
  4. Continuing bereavement training is helpful for caregivers, friends and family.

“Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not
grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured. These tears lead directly to introspection.”  Leon Wieseltier, The New Republic’s literary editor.  (sent to me by my sister-in-law Melanie – thank you!). 

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  1. I have attended a few of those NICU panels as well. I actually find them sort of healing. When my son died, I had one nurse in particular who did not handle the situation well. When I requested an autopsy, she went down the itemized form and hammered us with questions like, “Do you want his heart autopsied?” “Do you want his head autopsied?” Umm….we were parents holding our dead child. Of course we did not want our baby’s head cut open! So I ended up having the brain excluded from the autopsy, and I regret that I may have lost the opportunity for more of the answers that are so few and far between for us. I later learned that in my state it’s allowable for parents of deceased infants to request that certain body areas not be autopsied, but for a nurse to run down a list of body parts to cut open is absolutely horrifying. A simple, “Are there any exclusions you would like to include in your child’s autopsy?” would’ve sufficed. Other than that one nurse, I had spectacular nurses who seemed eager to do everything they could for us even after they had lost their patient. It is for those nurses that I am willing to attend such panels. I’ve never come across another NICU mommy that has done them though. Good to hear your perspective. Your suggestions were all very good ones–especially the one about separate exits for bereaved parents. I think that is essential.

  2. What a gift you are giving back to the community. I so admire the strength that you have created out of your grief. You are amazing.

  3. very proud of you for trying to make it a little easier on the next momma. hope it helped you in some way too.

  4. I am sure the nurses are better off for you sharing with them. You are a blessing to share through your pain.

  5. Lanie, I want to add my thanks for your having participated in the schooling for NICU nurses and, along with Susan B., I hope it was helpful to you, too.
    Love, Cornelia

  6. […] is the 3rd time I have been on the parent panel as part of this course.  The purpose of parents speaking is so […]


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