Identifying, Understanding and Working with Grieving Parents in the NICU - Presentation on Docstoc

This lecture was prepared and given at the First Annual Perinatal Conference held by the March of Dimes Valley Division in Modesto California in November 2005.


Identifying, Understanding and Working with Grieving Parents in the NICU

I was one of the expert speakers present as a former NICU Parent and a Grief, Loss and Bereavement expert.

Todd Hochberg - Touching Souls with Bereavement Photography

As parents move through grief they also may struggle with holding on to memories and feelings about this short time with their baby, in the extreme some may wonder if their baby ever was.

Todd Hochberg

Bereavement Photography helps to ease the grief of losing a baby by documenting the presences of that child in their lives.

This video segment aired on the Chicago Tonight program on WTTW, PBS in Chicago showing how Todd Hochberg's stunning and intimate photographs help grieving families heal.



You can find out more about Bereavement Photography at the Squidoo Lens that I developed on the subject or by reading more of the posts on Bereavement Photography included on the NICU Parent Support Site.

• Creating Memories of a Dying Baby For Parents Through Photography
• Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show

More:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com

Comforting Moment: Take Life Moment by Moment

The more I understand grief and loss the more that I have come to realize that

On life's most difficult days
all that we can do
is simply take things
Moment by Moment.

Kirsti A. Dyer MD, MS, FT

Taking life moment by moment is the best we can do or hope to do during difficult times or challenging times.

Image: Sanja Gjenero Wall Clock. Royalty Free Use.

TAKE CARE During Difficult Times

Figuring out what to do when faced with life's challenges can be very difficult. I have shared some tips for coping with loss from the Journey of Hearts site with a reminder to focus on the basics after a sudden loss.

TAKE CARE has been developed as an acronym to be used as a to reminder to focus on the basics following a loss, death or significant life changing.

• Time that is needed to survive the grief.
• Avoid alcohol and other medications.
• Keep to some routine or schedule.
• Eat a balanced diet, focusing on healthy foods and water.
  

• Converse with others, especially those that have ‘been there’ and 'survived that.'
• Artistic ways of coping – journaling, building, crafting, knitting and others.
• Rest and Sleep are important coping strategies.
• Exercise to reduce stress and improve mood.

This reminder to TAKE CARE covers most of the basics to focus on following a loss that I have been recommending to people for years in coping with loss.

Image Source: Modified from Deb Walker's Postit Note. Royalty Free Use.

Comforting Message: The Preemie Prayer

I found this preemie prayer, searching for prayers that would work for premature babies.

According to the blog entery, Preemie Prayer Revisited on her Preemies then Twins Blog by Sadye Spirit, this prayer was posted above the sinks where NICU Parents, families and staff scrubbed in at the Progressive NICU in the hospital her preemie twins stayed. The poem has brought many a NICU parent to tears.

The Preemie Prayer

Dear God, as you look down upon us,
We know that you might have to squint.
We're located here in the NICU
It's the nursery that we rent.

There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.

We have a lot in common;
All of us were in a hurry.
For many different reasons,
Our storks came a little early.

Some of us don't know why,
We bursted out from our bubbles.
We entered into this world,
Never meaning to cause any troubles.

Mommy and Daddy are worried sick
About the odds that we must beat.
Please God, help them to realize,
That seeing us grow is a treat.

Breath by breath, we'll learn to breathe.
Ounce by ounce we'll tip the scale.
We're like a boat in the ocean,
That knows not sink- only sail.

For we are living miracles,
Mommy and Daddy must simply believe,
That you have angels watching over us;
From the time we arrive, till the time we leave.

Author Unknown

If anyone knows the author of this poem, let me know so I can give him or her proper credits.



Another Preemie Prayer:
You can read another prayer for a Premature Baby at the Our Kids site. A short excerpt is below:

God bless the little child behind the plastic wall
For all he knows is the ringing of the bells and
the blurred images around him.
He has been taken from my womb without warning
and I long to hold him in my arms.

Author Unknown. Premature Baby Prayer. Our Kids.

This prayer is being republished on the anniversary of the day that my youngest was transferred to the higher level NICU.

Images:
Abcdz2000. Praying. Royalty Free Use.
Ensignmedia. Carissa Prayer. Morguefile Free License.

The Zaky - A Comforting Hand for Your NICU Baby

To this day one of the hardest things for me in having a NICU baby was not being able to stay with her and watch over her 24 hours a day 7 days a week.

We had a 2-year-old daughter who also needed our care and attention, so could visit for some time during the day, but had to leave her behind in the care of others in the ICN.

One of the best ideas that I have found for helping support a NICU baby and support the NICU parent is the Zaky ergodynamic hand pillow. The Zaky Infant Pillow is a way to simulate mother's or father's hand to provide comfort to your NICU baby when you are not able to do so.

Uses for the Zaky
By mimicking the shape, weight and touch of a human hand, the Zaky is able to provide comfort, support and a sense of security to NICU babies. The Zaky can also be used in the NICU to assist with positioning the babies (see image above).

The Zaky has been used to care for NICU Babies by mothers, fathers and family members, neonatologists, pediatricians, surgeons, obgyns, nurses, physical & occupational therapists, infant massage therapists, developmental specialists & ergonomists. The Zaky has been used in NICUs since 2001.

The Zaky
The Zaky is now available on Amazon in different hands and in different colors for you to get for your NICU Baby or give to your favorite NICU parent. Click on the image or the text link to learn more about the Zaky.

Right Handed Zaky

The Zaky Positioning Pillow - Right Hand

Left Handed Zaky

The Zaky Positioning Pillow - Left Hand

Pink Zaky

The Zaky Bonding Hand - Pink

Blue Zaky

The Zaky Bonding Hand - Blue

More on the Zaky
Dyer KA. The Zaky - A Bonding Hand from Zakeez inc. Squidoo.com
Dyer KA. Leave a Zaky hand with Your NICU Baby - Providing Comfort When You are Not There. July 2007. NICU Parent Support Blog.

More on Remembering out NICU Experience
Dyer KA. March 2008. An Easter Healing Blessing in the Intensive Care Nursery. NICU Parent Support Blog.
Dyer KA. March 2008. Creating a Circle of Healing and Support. NICU Parent Support Blog.

Photo Source: Zakeez.

Encouraging Message: Advice from a NICU Physician on Coping with the NICU

Leonard E. Weisman M.D. Director of the Perinatal Center at Texas Children's Hospital offered these encouraging words about coping with the NICU experience:

It's a day-to-day kind of thing..

There are days when things go well.

There are days when things don't go well.

Leonard E. Weisman M.D.

It is my hope that you have more days when things go well than days when things don't.

Photo Source: Ayhan Yildiz. Calendar. Royalty Free Use.

Creating a Circle of Healing and Support

I have long held the belief, both personally and professionally, that there is a healing power in holding a person in one's thoughts whether you are saying prayers or giving blessings or lighting candles. This belief in holding a person in your thoughts are the same beliefs echoed by Dr. Jim Reeves, the urologist who treated Cancer Survivor, Lance Armstrong.

There is an ancient Chinese belief
that when a person is held
in the hearts and minds and souls
of so many other people,
they can do better.

One of the greatest difficulties for me as a NICU parent, who was also used to being a physician, was the overwhelming feeling that there wasn't anything I could do for my daughter. I had to step back and turn over all of the care to those who understood the NICU technology and could help her medically to heal.

I decided to change my feeling of helplessness by taking a more active role in her care. We created a Circle of Healing to have friends and family hold her 'in their hearts and minds and souls...so she could do better.'

Our Circle of Healing for My Youngest Daughter
Within days after the birth of my youngest daughter and her unexpected NICU admission, thanks to the connection power of the Internet, we were able to quickly contact friends and family to notify them of what had happened.

On Easter morning, our newborn daughter was included on several prayer lists and prayer circles, only two days after her birth. Via phone calls and e-mail messages we tapped into the healing powers to create a circle of positive thoughts and energies from friends and family around the United States and around the world. We asked everyone to hold our daughter in their thoughts, to keep positive thoughts and prayers to mentally aid in her healing process and strengthen the Circle of Healing around her.

I truly believe that having so many people hold our daughter in their hearts, minds and souls, mentally aided in her healing process. We were blessed with the outcome. The Circle of Healing we created for her helped keep her safe and protected until she was strong enough to be discharged from the hospital.

Continuing the Circle of Healing
Rev. Schwing (see prior post) was the start of the Circle of Healing that we created starting on Easter Sunday Morning for my youngest daughter Kristiina while she was in the NICU.

Writing this article, I wondered who would be there if our baby had a health crisis? I don’t know. I trust that the Circle of Healing would be there. Sometimes we are on the giving end, sometimes on the receiving end. That’s what keeps the circle going.

The nurses at UCSF continued Kristiina's Circle of Healing by hanging a blessing that we wrote for her above her isolette. You can read a copy of the blessing that we wrote for her posted on the Journey of Hearts Website as A Healing Blessing. Part of the blessing is included below.

Ironically, Rev. Schwing would experience being a NICU parent several years later with the birth of his second child. The Circle of Healing was there during his challenging time in the NICU.

My Wish for Current NICU Parents
For this Easter season, as I am reminded of our own NICU experiences, I would like to extend the following wish for NICU and ICN parents who currently have their newborns in the hospital.

May you continue to heal

moment by moment
hour by hour
day by day
knowing that so many love you
and wait to welcome you.

May you feel loved.
May you be safe.
May you be protected.
May you be strong.
May you be healed.

May you find healing, in whatever form that healing might take.

Our Easter Gift
This Special Healing Blessing comes as a bonus when you download the Free NICU eBook, For Those Who Hold the Littlest Hands.

More Resources:
Dyer KA. An Easter Healing Blessing in the Intensive Care Nursery NICU Parent Support Blog.
Dyer KA. Circle of Healing - Cloisonné Lapel Pin. The Violet Heart Collection on Squidoo.
Dyer KA. 2002. A Healing Blessing. Journey of Hearts.