Bereavement Training

October 24, 2013 at 10:14 pm | Posted in Grief, Jake, NICU, Sawyer | 6 Comments
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quote - Dalai-Lama-quotes-be-kind

Today I, along with several other parents, spoke to a group of nurses as part of their bereavement training.  This is the second parent panel I have been a part of in the last few months and I have participated in several others over the years.  At times, I find talking about Jake and Sawyer cathartic.  I am always hopeful that sharing our story can somehow help others.  After each of these panels I have come away with lists of suggestions for nurses and tips for NICU parents.

There is a common theme in all the stories.  All bereaved parents want their child/children to be remembered.  There will not be the lifetime of memories that hopefully other children will have.  The stay in the hospital and every aspect of it is very often all the parents have.  The doctors and nurses are big parts of these memories.  The kindness and compassion of the medical professionals is so important.  I am thankful that bereavement training exists.

No matter how small the baby is or how long the baby lived, parents want their baby treated like every other baby.  They want to be treated like every other parent.  One mom said she just felt like she was in the middle of a really bad Lifetime movie.  We are all hoping that we can change the channel or wake up from the nightmare of outliving our child/children.  Unfortunately, this is our reality.  Thank you to all those who help us along our way.

Tips for NICU Parents

January 12, 2013 at 10:52 pm | Posted in Grief, hospital, NICU, normal?, silver lining | 12 Comments
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This past week I, along with 2 other mothers, spoke to a group of nurses as part of their bereavement training. The nurses all work at Northside, the hospital where we had all 4 of our children.

This is the 3rd time I have been on the parent panel as part of this course.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital and help the nurses to better understand the needs of the families.  I listened to the other women recount their bittersweet experiences. I spoke about mine.

Along with helping the nurses understand the parent’s perspective, we also spoke about ideas for families with babies in the NICU.  The other 2 mothers had several suggestions that Evan and I had not thought of while Jake was in the NICU.  No one knows ahead of time that they will be a NICU parent.  And, NICU parents do not usually have time to google suggestions for being a parent to a very premature baby.  However, I am going to share this list just in case you or someone you know finds themselves with a child in the NICU.

  1. Take pictures.  Use your phone, a disposable camera or whatever kind of camera is available to you.  I am so thankful that the nurses encouraged us to take pictures.
  2. Video tape.   If it is allowed make video tapes of your baby.  I wish Evan and I had video of Jake.
  3. Pen and journal.  Ask the nurses to write something down about your baby during their shift.
  4. Small stuffed animals.  Carry them around so they pick up your scent.  Place them in your babies’ isolette.
  5. Memory metal.  Use the metal to make a finger or foot print of your baby.
  6. Scrapbook.  The hospital gave us everything that touched Jake’s body.  Evan and I keep all of Jake’s things.  We have been working on a special cabinet to keep it all together but it would be great if we could put together a scrapbook as well.

Some hospitals have organizations to help and support NICU parents.  The group at Northside is called Parents Partnered for Preemies.  Do you have any other ideas to add to this list?

Jake's stuffed animals

Jake’s stuffed animals

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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