Monday, July 30, 2007

7/30 - Comforting Message - The Loss of a Child is the Loss of the Future

Today's message is more about why dealing with the loss of a child is so difficult for parents. The comfort perhaps comes from the knowledge of why the death of a child at any age is so challenging.

Children Don't Die First...Do They?
In the natural order of things, children grow into adulthood, marry and have children of their own. Children aren't supposed to die before their parents. Yet sometimes, children do die leaving parents behind to grieve.


Arnold and Gemma in their book, A Child Dies A Portrait of Family Grief, described why parents feel so distraught, depression and despair following the death of a child:

Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should.

The loss of a child is the loss of innocence, the death of the most vulnerable and dependent.

The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection.


I think for many it is the death of the dreams, the death of hopes and the death of their future that is the most difficult for parents to fact following the loss of a child, at any age.

Quote Source:
Arnold JH, Gemma PB. A Child Dies A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Ed. 1994.

These thoughts are also featured on the Squidoo lens, My NICU Baby has Died.

Photo Source: Phil Landowski. Dust to Dust. Royalty Free Use.

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Sunday, July 29, 2007

7/29 - Encouraging Message - NICU Parents and Families are True Heros

...a hero is an ordinary individual
who finds the strength
to persevere and endure
in spite of overwhelming obstacles.

They are the real heroes,
and so are the families and friends
who have stood by them.
Christopher Reeve
1952 - 2004

NICU Parents are the Real Heroes
I think anyone who has lived through a NICU experience would agree that NICU Parents and their families are the real heroes. These are ordinary people who have been challenged with an extraordinary event (the sudden NICU hospitalization of a newborn) and yet despite this obstacle, somehow find the courage, the strength and the will to persevere despite the challenge.

Christopher Reeve - Superman, Super Human Being
Anyone who was around in 1978 remembers Christopher Reeve as Superman and the Super Hero.

At least for me, the image of Christopher Reeve as Superman is one that has been etched for me...particularly in light of the tragic riding accident in 1995 that left
this talented actor and "Man of Steel" a ventilator-dependent quadriplegic for the last decade of his life.

Christopher Reeve's accident has always been a reminder to me that how life can change in just a flash of a moment, a blink of an eye. Everything is normal one moment and very different the next.


The Full Quote
Here is the text of the full quote and how his definition of hero change with time and with circumstances:
When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequent question was: What is a hero? My answer was that a hero is someone who commits a courageous action without considering the consequences.

Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. They are the real heroes, and so are the families and friends who have stood by them.
Rising above Tragedy to Focus on Living
I remember being so amazed at how Christopher and Dana Reeve were both able to quickly rise above their family tragedy and focus on the positive. Their grace and great courage in the face of adversity has always been a source of inspiration for me.

The Christopher and Dana Reeve Foundation is an example of one of the many organizations that has formed as a result of a tragic event and gone on to do so much to help so many.

I think another one of his quotes summarizes how he was able to keep on living despite experiencing such a life changing event:
There will be ups and there will be downs,
there will be times when things make sense,
there will be times when they won't,
but you'll always be on an adventure of meaning
if you live for self, family, and others.
These words of wisdom also apply to anyone facing a challenge. I hope that NICU Parents and families will find them to be as inspirational in facing challenging times and I do.

Other Related Blog Posts:
Dyer KA. Comforting Message - Struggling for Your Dreams. July 23, 2007.
Source:
Christopher and Dana Reeve. About Us. Christopher and Dana Reeve Foundation.

Photo Source: Erica Johnson.
Superman Pillow. Royalty Free Use.

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Friday, July 27, 2007

Teaching Students to Write Stories out of NICU Experiences and Devastation

I have always been a believer in learning from the losses and the challenges that one faces in life and then using those experiences to help others facing similar crises, but are earlier in the process.

Kate Hopper has taken her own experiences as a NICU parent to a new level. She used her own NICU story of a preterm birth due to preeclampsia and the stories of other NICU parents and loss.

I was very impressed with her blog entry on heartbreak and hoping that I read this week. She shares her lesson plans to include two stories of heartbreak with her students in her "Mother Words" course at the Loft Literary Center in Minneapolis.

Her selections for the week included
Susan Ito’s "Samuel" and Suzanne Kamata's "You’re So Lucky." Kate writes that she "chose these pieces to spark discussion about point of view, emotional distance, and writing about heartbreak." Her goal in sharing the stories was to teach her students how to write "heartbreak without sentimentality, craft stories out of devastation."

Learning from NICU Experiences
In the graduate course that I taught last Spring on Grieving Family Systems, I had my graduate students read the formal research papers that I had written on Identifying, Understanding and Working with Grieving Parents in the NICU to give them the perspective of grief in the NICU parents. One of my students was a former NICU nurse, who found the information invaluable.

The older I get, the more that I believe we are given these experiences to learn from and then to turn around and teach others from our losses. Perhaps this is one of the better ways of making meaning from the loss.

Sources:
Hopper K. Heartbreak and Hoping. Mother Words: Mother's Who Write Blog.
July 25, 2007.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network. May/June 2005; 24: 35-46.

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Photo Source: Nadya Smolskaya Paper Work. Permission to Use.

Wednesday, July 25, 2007

PBS Special – Born Too Soon: Premature Births on the Rise

Why does the United States have so many babies who are born too soon?

Why does the United states have the highest rate of premature births in any of the developed nations of the world?

These are some of the perplexing questions the show QUEST* set out to answer.

At the time of the show’s production, QUEST’s Coordinating Producer, Amy Miller was 28 weeks pregnant with twins. Carrying multiples she is at a higher risk for her pregnancy, including possibly delivering her twins early, or preterm. (See the Quest blog for updates on her condition)

The QUEST team met with some of the San Francisco Bay Area researchers who are working in the field of neonatology to discover the reasons for the high rate of preterm births. They also explored some of the technology, research and cutting-edge medical procedures used to care for the most vulnerable newborns.

You can watch the Born Too Soon: Premature Births on the Rise program through the link below, or visit their website.



More NICU Photos:
Additional Photos from the series are available for viewing in Flickr, as you go behind the scenes with the production team, filming in a neonatal nursery.

More about QUEST
KQED’s QUEST is a new multimedia series that looks at the people behind San Francisco Bay Area science and environmental issues. The program also explores how the work of these people is changing the way we live. QUEST is a production of KQED.

QUEST Television airs every Tuesday at 7:30 p.m. PST on KQED 9, KQED HD, and in vivid high definition on Comcast 709.

Sources:
QUEST. Born Too Soon: Preterm Births on the Rise. July 24, 2007. http://www.kqed.org/quest/television/view/465
Miller, A. Born Too Soon: Preterm Births on the Rise. QUEST Science Blog. July 24, 2007. http://www.kqed.org/quest/blog

Photo Source: Born Too Soon. Quest. 2007.

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Tuesday, July 24, 2007

Preemie Prayer for Sylas Christopher, the Remaining Morrison Sextuplet & Siblings

More sad news released Monday...

Lucia Rae, another of the Morrison sextuplets, died on Sunday. That means only one of the sextuplets is still alive, Sylas Christopher. Sylas remains in critical condition at Children's Hospital in Minneapolis.

Cadence Alana, Tryg Brenton, Bennet Ryan and Lincoln Sean all died over a few weeks in June. The Morrison sextuplets were born June 10 at 22 weeks gestation or about 4 1/2 months early. The smallest of the six weighed only 11 ounces at birth, the largest a little over a pound (16 ounces).

Once again our thoughts and prayers go out to the Morrison family who have have lost five of their six NICU babies.

This prayer goes out to Sylas for strength "to make it through another second, minute, hour and day" *
to his parents to endure these challenging times and his angel siblings.

The Preemie's 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

According to the blog entry 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.

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

Follow up on the Morrison Sextuplets
In November 2007 WCCO did a follow up story on how the Sylas Christopher, the one surviving sextuplet was at home and thriving.

You can read more at their website.


Another Preemie Prayer:
Author Unknown. Premature Baby Prayer. Our Kids.
http://www.our-kids.org/Archives/Preemie.html

Other Related Article
:

Dyer KA. What can I *say* when a NICU baby dies? June 2007. Available at: http://nicuparentsupport.blogspot.com/2007/06/what-can-i-say-when-nicu-baby-dies.html

Sources:
Sadye Spirit. August 16, 2006. Preemie Prayer Revisited. Preemies Then Twins Blog.
CBS Broadcasting Inc.
July 23, 2007. 5th Minnesota Sextuplet Dies. WCCO.com.

Photo Source: Benjamin Earwicker. Tiny Feet 2. Royalty Free Use. Garrison Photography.

Monday, July 23, 2007

7/23 - Comforting Message - Struggling for Your Dreams


But there is suffering in life, and there are defeats.

No one can avoid them.

But it's better to lose some of the battles in the struggles for your dreams,

Than to be defeated without ever knowing what you're fighting for.

Paulo Coelho



NICU Struggles
I think if you would talk to most NICU Parents many would use the words "struggle," "battle," and "challenge" to describe their time in the Neonatal Intensive Care Unit.

I know what I was battling for shortly after my daughter arrived in the NICU. I was
fighting to keep my daughter strong enough, in whatever ways I could imagine, and struggling to have her stay on this side and not cross over (not to die).

Dreaming New Dreams
NICU parents have to quickly adjust to the fact that their dream of taking home a healthy happy newborn shortly after delivery is not going to happen.

MOD Family Support Specialist, Melissa offers these words of wisdom:

This was not what you were expecting.
You had dreams of this precious child being born and going home. Storybook fantasies of being a mom...filled your dreams at night.
This is the way you believed things would be...
Not spending your baby's first days in an intensive care unit.

Sometimes we have to sit back and accept that we are working towards a new normal. Our normal.

Melissa
Share Your Story

Sometimes we have to step back, let go of the old dreams and begin dreaming new ones.

The dreams of NICU Parents are often postponed and changed. Dreams of going home with a precious baby...change to ones of having a healthy, happy, peaceful baby at home...at some point.

Source:
Melissa. Baby in the NICU. Share Your Story. May 2, 2007.


Photo Source: Dick Herrmann. Sleeping Baby. Use with Permission.
www.lakepeople.de

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Sunday, July 22, 2007

7/22 - Encouraging Message - Balancing on a Tight rope and Gratitude in the NICU?

I stumbled upon this quote and realized it perfectly expresses many of the sentiments and emotions felt by NICU Parents:

Walking this tight rope called life
learning to balance
and look down to see
if the net is there yet...
Liz Elayne



Many NICU parents keep looking for the net as they carefully and delicately balance family, work and other life demands with the reality of having a baby in the Neonatal Intensive Care Unit.

Another interesting note was that this post was taken from a series of posts where the author was taking a polaroid photo every single day, counting the days and marking the passage of time; something else frequently done by NICU Parents.

Gratitude in the NICU?
In her blog, for each of these entries, the author also has included a few words about the moment and lists the things she is grateful for, perhaps a difficult task, but something else that NICU parents might be able to do.

One of my favorite quotes that helped me get through our NICU experience was one by Socrates:

If all misfortunes were laid in one common heap
whence everyone must take an equal portion,
Most people would be contented to take their own and depart.

While sentiments may not work with all NICU Parents and in every situations, I know with my daughter, we were constantly grateful, looking at other situations faced by some of the other parents, that things could have been so much worse.

For that we have always been very grateful.

Source:
Elayne L. Day 71. March 12, 2007. http://seekgratitude.blogspot.com

Photo Source: Modified Microsoft Images.

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Saturday, July 21, 2007

New Designations - Healthcare/Medical Blogger & Type-A Mom Writer

My diverse background is surfacing in the two new designations that we are getting for the NICU Parent Support Blog. I am honored to be attaining both of these designations.

Healthcare Blogger

The first designation as a Medical Blogger or officially a "Healthcare Blogger" comes from my background as a physician.

This designation is meant for healthcare workers who blog (the initial intent of the code of ethics).

The full code of ethics for the Healthcare Bloggers can be found on the Medical Blog Code website.


Type-A Mom Writer

The other designation comes from my background as a mother, a sometimes Type-A personality and as a NICU Parent.

I am an "Official Type-A Mom Writer" contributing to their special section for NICU Parents, blogging on finding "Restoring Moments."

I will be contributing articles and information on various aspects of health and well-being of children.

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Friday, July 20, 2007

Strategies for Dealing with NICU Stresses - Try a Relaxing or Cleansing Sigh

During times of stress, such as when your baby is admitted to the Neonatal Intensive Care Unit (NICU), parents often are so focused on the health and well-being of their baby, that they forget to take care of themselves.

Most NICU parents would undoubtedly rather be sitting on the beach relaxing rather than coping with the stresses of the NICU. However, over time, these stressors can begin to take a toll. The NICU Parent who do not take time for him or herself may find their mind and body feeling and showing the impact of the stress.

While you probably won't be able to make it to the beach, you can try some simple breathing techniques which can be used anywhere--in the waiting area, in the cafeteria, outside, on a bench, standing in line or even in the bathroom.

Coping with NICU Stresses - Sighing
Sighing (breathing heavily and deeply) releases tension and can be used at will as an effective way of relaxing.


A Relaxing Sigh
  • Sit or stand up straight.
  • Sigh or breathe deeply.
  • Let out a sound of deep relief as the air rushes from your lungs.
  • Let the new air come in naturally as your lungs expand.
  • Repeat these steps however many times you need to begin to relax a bit. Some recommend eight to twelve times.
You can use the Relaxing Sign technique whenever you feel the need to slow down and experience the feeling of relaxation.

A Cleansing Sigh
Another breathing technique to help in reducing stress is to take a deep cleansing sigh.
  • Sit or stand up straight.
  • Let out a gentle noise as you inhale slowly, deeply and completely.
  • Let the air rush out as a sigh as much as your body will allow.
  • Feel the stress leaving your body with your breath.
  • Allow your body to inhale. This should be completely natural.
  • Repeat as needed to relax -- five to fifteen times.
Remember to Breathe, Just Breathe
See also the earlier post on "
Breathe, Just Breathe - An Effective Strategy for Coping with a Challenge"

Sources: The Counseling Center. Breathing Techniques. Sam Houston State University http://www.shsu.edu/~counsel/hs/breathtech.html
Dyer KA. Breathe, Just Breathe - An Effective Strategy for Coping with a Challenge. June 2007. http://nicuparentsupport.blogspot.com/2007/06/breathe-just-breathe-effective-strategy.html

Photo Source: Neil Gould.
Lost at Sea 3. Royalty Free Use.

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Tuesday, July 17, 2007

The Distress of the NICU Parent - Each Person Only Knows His or Her Own Pain

There is an expression about not judging a person unless you have walked a mile in his or her shoes. I think this is much the same when trying to understand the grief and pain felt by a NICU parent when trying to make the best decisions for their NICU baby.

Today,
Anesthsioboist "T" shares her views on the Limits of Viability in her blog.
I wish people wouldn't pass judgment on parents who ask for everything possible to be done to save their children.

I wish people wouldn't pass judgment on parents who ask that their children be left in peace if resuscitation appears futile.
"T" reflects on a one of her very difficult experiences as a medical student and a more postive experience as an Intern and Mother with her own daughter. She cautions that the first story may elicit a strong reaction from some. (I would caution parents before reading the first part that "T's" reflections are more geared for professionals, who must deal daily with difficult life and death situations.)

NICU Parents experience a wide range of distresses. Many want absolutely everything done to save their child. Others are able to help their child let their child go if care appears to be futile. It may be difficult for people to understand either of these points of views.

After reading T's post, a quote from Paulo Coelho comes to mind:
We can never judge the lives of others, because each person knows only their own pain and renunciation.

It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.
Paulo Coelho


Other Ethical Sources:
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm
Dyer KA. NICU from the Nurse's Perspective.
http://nicuparentsupport.blogspot.com/2007/07/nicu-from-nurses-perspective-when.html


Sources:
T. The Limits of Viability. July 17, 2007.
http://anesthesioboist.blogspot.com/2007/07/limits-of-viability.html

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Monday, July 16, 2007

7/16 - Comforting Moment - Death does not end the Relationship

The recent thoughts regarding death and bereavement have shifted. In the past death was viewed as something one needs to "let go of" and "get over" in order to move on with life.

More recently, experts have come to realize as in the quote below, that death may end a life, but it does not end the relationship.
Death ends a life, not a relationship. One of the real challenges at this time of bereavement is to create a new relationship with your loved one without a physical presence.

You face the task of creating that new relationship, one of heart, mind and spirit.

Incorporating your loved one’s values and passions into your own life and
passing them on to others will create a living memorial that will keep alive the essence of your loved one and bring you comfort.

Playwright Robert Anderson
Tuesdays with Morrie

Many people find ways, often creative, to keep the memory of a loved one alive as a source of comfort. This article that I published several years ago includes some of the many ways of coping:

Other Quotes:
Living on in the Hearts
All that you deeply love

Source:
Bereavement Guide. 2006. Pathways Hospice Foundation. Available at:
http://www.pathwayshealth.org/documents/Pathways_Bereavement_Guide.pdf

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Sunday, July 15, 2007

7/15 - Encouraging Message - Believe and Follow Your Aspirations

For NICU parents, trying to keep on believing and hoping that your NICU baby will be fine can be difficult. Lousia May Alcott's quote is a beautiful reminder to follow your highest hopes for your baby.

Far away there in the sunshine are my highest aspirations.

I may not reach them

but I can look up and see their beauty, believe in them,

and try to follow them.

Louisa May Alcott


Photo Source: Manoel Silva. Clouds. Royalty Free Use

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Saturday, July 14, 2007

Reflections on NICU Aftercare: Who should following up on NICU parents?

According to the Merriam-Webster Online Dictionary, Aftercare is
the care, treatment, help, or supervision given to persons discharged from an institution (as a hospital)
The NICU baby is seen by a pediatrician and possibly specialists depending on the level of care needed. I have often wondered after our NICU adventure, "Who is responsible for the aftercare of the NICU parents following a NICU admission?"


Reflections on Our Lack of Aftercare
Our situation may have been unique because we were patients of one hospital system and transferred to another hospital system, so when all was said and done, the first hospital, not the discharging hospital was responsible for follow up. It could be that we got lost in the follow up.

The situation might have also been unique because I was a physician, but I was still left wondering:
Who should be monitoring the health and well-being of the NICU family and providing aftercare?
This was a question I posed in Part 2 of an article that was published on working with NICU parents.
In our situation, we followed up with the pediatrician and a specialist for my daughter and I followed up with the OB/Gyn, however no one asked how we were doing, how we were adjusting to being home or what we were doing to cope. As a former primary care physician, I felt that these were obvious questions that were being omitted.

I became even more concerned, when I started looking at the research and discovered that NICU parents are at risk for experiencing
unresolved, prolonged grief and also at an increased risk of developing depression and anxiety-related disorders, including PTSD (Post Traumatic Stress Disorder). My experience left me wondering just how many NICU parents might be slipping through the cracks?

After our NICU experience and because of my background in primary care, I believe that health care professionals need be screening and if need be further evaluating women who have had a baby admitted to a NICU for depression, anxiety, and PTSD symptoms.

A Patient/Parent NICU Support Coordinator
Children's Hospital of Illinois created a new position, the Parent Pathfinder to help NICU parents understand their child's life-threatening disease and care plan and also to get acclimated to what is a strange and unique environment.

The Parent Pathfinder is a similar concept to the Parent Support Coordinator idea suggested by former NICU Parent and Researcher Dr. Michael Hynan.
Initially the Parent Pathfinder or Parent Support Coordinator is the person who considers the well-being of the family and supports the NICU parents through their NICU admission. Ideally, this person's role would not end when the baby is dischared, but would continue on for sometime after the admission to ensure that parents are doing well once they are home from the NICU.

This might also be the person to screen NICU parents, with something like Dr. Hynan's Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) to determine if they might need some additional support once the family is discharged from the hospital.

Sources:
Dyer KA. 2007. NICU Parent Pathfinder - Helping Parents Navigate the NICU. NICU Parent Support Blog.
Dyer KA. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network. 24: 35-46.
aftercare. 2007. In Merriam-Webster Online Dictionary.
Swiech P. 2007.New position will help parents at Children's Hospital. Pantagraph. July 5, 2007.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies.
Neonatal Network. 24: 27-40.
Hynan MT. 2001. Assisting the trembling hands that hold the tiny hands: Helping high-risk parents improve neonatal outcomes. Paper presented at the annual meeting of the National Perinatal Association, University of Wisconsin Milwaukee. December 2001.
Hynan MT.
Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Thursday, July 12, 2007

Leave a Zaky hand with Your NICU Baby - Providing Comfort When You are Not There

I think one of the most difficult things for NICU parents to do is to realize that they cannot stay with their NICU baby 24/7 and at some time you have to leave the hospital and your precious baby behind.

I discovered a wonderful product designed by a former NICU Parent that helps provide support and comfort to a NICU baby while you are not there -
The Zaky®.

This product is an answer to the questions "What can I do to support my NICU baby?" I know we would have gotten one for our daughter had they been around at the time.

About the
The Zaky®
The Zaky® was designed by a NICU parent, Yamile Jackson, who has a PhD in ergonomics & human factors engineering after her own NICU experience with her son Zachary in 2001.

The award-winning ergonomic, bonding, therapeutic positioning pillow was designed
especially for premature babies that have to be left at the hospital away from their parents.

The special hand allows you to "leave a hand with a loved one" and "give your baby a hand" when you are not there.

By mimicking the shape, weight and touch of a human hand, the Zaky
® provides comfort to NICU babies (and others) giving support and a sense of security. In the NICU setting, the Zaky® can be another helpful hand assisting with positioning.

Providing Comfort When You are Not There
Here is a list of some of the comforting benefits provided by this
ergonomic, bonding, therapeutic positioning pillow.
  • The size and weight simulates the hand and touch of the mother.
  • It may be used on top, around and under the baby to provide boundaries (except on the face).
  • Babies feel reassured as if someone is touching them, which assists in their need of feeling protected.
  • It assists nurses and care givers as she can leave a Zaky® with each baby.
  • Parents feel as they are leaving one hand with their baby, helping them feel more involved in the care of the patient.
  • May be warmed in the towel warmer at hospitals and on the dryer at home.
In addition the Zaky® can be scented with the scent of mom, dad, or siblings. Scenting the Zaky® can provide a great deal of comfort and assist the baby's transitions to different environments in the hospital, in the car or once at home. The Zaky® is something constant and helps to reduce the shock many baby's experience with different lighting, scents, sounds, temperature, etc.

Uses - NICU and Others
The Zaky
® has been used by mothers, fathers and family members, neonatologists, pediatricians, surgeons, obgyns, nurses, physical & occupational therapists, infant massage therapists, developmental specialists & ergonomists. It has been used in NICUs since 2001 and in homes and child care facilities since 2004.

In addition to being used in the NICU setting, the Zaky
® is also being used to provide comfort in other settings:
  • In hospitals for children and adults that have long hospital stays due to cancer, burn treatments and others.
  • In child care centers and at home for children to use as a comforting security item.
  • In hospitals to help position patients after surgical procedures.
  • In nursing homes to provide comfort and a sense of security to seniors.
Oboz Program - Donate a Zaky® to Your NICU
This is a great idea. The Zakeez company has already
donated over 2,000 Zakys to NICUs worldwide to help their sickest children. They donate the Zaky® to the hospital that you specify and all you have to do is pay for minimal administration fees, shipping and handling. You can donate a Zaky® to your NICU for $7.98.

More about the Oboz Program: http://www.zakeez.com/en/our_company/oboz_program.php

Research
The Zaky® has been presented at several conferences on"Human Hand Mimetic Comforts High Risk Neonates" and "The benefits of the Zaky for mothers, babies, and medical personnel." http://www.zakeez.com/en/our_company/research.php



Ordering Information for NICU Parents:
I have included the prices when the blog was posted. The Zaky comes as a right hand or as a left hand.
From the Zaky site - Is there a difference between the Right and the Left Hand?
  • There appears to be no difference for the baby.
  • Right and left hands are offered because it looks more natural to have one of each if they are use on the same baby.
  • Some parents have preferences--if they are right handed, they want a right Zaky, if they use their left handed, they want a left hand.
  • Many parents choose to get the Zaky in the hand that they use the most to provide comfort for their baby, which may not always be their dominant hand.

More Sources:

Premature Benefits: http://thezaky.com/en/zaky/premature_benefits.php
Research:
http://www.zakeez.com/en/our_company/research.php
Zaky Movie: http://thezaky.com/en/zaky/zaky_jjmovie.php

Photo Source:
Zakeez

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Wednesday, July 11, 2007

Palliative Care in the NICU - Ethical Dilemmas: A Role for Paralytics & Who is the Patient?

On July 11, 2007 a neonatologist in the U.K. was cleared of misconduct in the case of hastening the deaths of two dying babies. In the final moments before the baby's death, Dr. Munro injected the babies with a paralyzing drug, pancuronium, at 23 times the normal dose to suppress agonal breathing.

This case being described as being "tantamount to euthanasia" is something to think about. It underscores many of the ethical dilemmas surrounding end-of-life or palliative care in the NICU finding the delicate balance between saving a life and merely prolonging a life until it's inevitable death.

Definitions
Palliative care are services that alleviate, lessen, or provide relief of symptoms which interfere with quality of life when curative treatments are no longer an option with a life-threatening illness.

Paralytics and Palliative Care?
My Palliative Care or End-of-Life background is in adult medicine, but the principles of 'doing no harm' and support someone, even a newborn, with comfort until the end of their life should be the same.

I don't remember paralytic agents being routinely used at the end of life with adults. I do remember an attending physician, a critical care doctor briefly sharing his own horrifying experiences under general anesthesia, anesthesia awareness. He described being paralyzed, awake and unable to let anyone know because of the medications he'd been given.

One of the concerns in these cases is that the two dying babies might have been paralyzed, still awake and unable to breathe. As Nurse Judy noted
"We have no way of knowing if those babies were suffering before he gave them the Pavulon, we have no way of knowing if they had any relief from suffering. They may have been totally aware of being unable to breathe."
Not a pleasant thought, to have someone suffocate to death because of medications.

According to the National Cancer Institute Ethical Issues on Last hours of Life, "paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort." In a study done in the late 1990's in the U.K. looking at the practices surrounding withdrawing a dying child from a ventilator, a minority of the respondents continued neuromuscular paralysis after the child had been withdrawn. In a more recent BMJ article from 2002, that looked at the topic of whether agonal respirations are necessary, these physicians proposed that gasping respirations at the end of life should be treated and in rare circumstances "
the use of neuromuscular blockade to suppress prolonged episodes of agonal respiration in the well-sedated patient in order to allow a peaceful and comfortable death."

Perhaps this is a difference in the training between the U.S. and the U.K, perhaps it is a difference in the research being done. I think most of all the case underscores the need for still more education in palliative care in the NICU setting. This training would include beneficial and effective ways of managing pain and symptoms in the final hours of life as well as developing standard protocols for NICU physicians to follow to allow for the peaceful and comfortable death.

Who is the Patient - the Baby or the Family?

Another issue in this case, is who was the patient...the baby being treated, or the parents who will be surviving the deaths. In both of these cases reportedly the mothers and fathers of the babies "fully supported the doctor's actions and were grateful to him."

Nurse Geena's comments in response to the parents fully supporting the doctor serve as a reminder to be thinking who is being treated.

Goody for them, but I just can't quite get it out of my mind that the "treatment" was done to comfort the parents and not the baby.
It almost seems that the parents, those who would be living on after the death, had become the primary focus for the doctor, not the dying baby.

Which is more harmful for the parents? Prolonging Death or the Method of Death.
How one copes with a death depends much on how the death was handled at the time. The ultimate outcome of this case will be the effect of these deaths on the surviving parents.
  • Will they be more grateful that their baby's suffering ceased and the death was hastened?
  • Will they be more harmed because the drugs used hastened their baby's death paralyzed their baby?
We may never know.

Other Bloggers' Thoughts:
Judy, RN. Pancuronium = Pain relief? For whom?
Tigers Don't Jump Blog. July 10, 2007.
Geena, RN. On the verge of what society finds acceptable? Code Blog. July 10, 2007.
Kevin, MD. Prolonging life vs prolonging death. Kevin MD. July 10, 2007.

Sources:

BBC News. Doctor 'hastens babies' deaths.' July 5, 2007.
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6273528.stm
BBC News. Doctor felt babies were suffering. July 9, 2007.
Available at: http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6276900.stm
BBC News. Baby doctor cleared of misconduct. July 11, 2007. Available at:

http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6291224.stm
Reid. M. When prolonging life becomes prolonging death. July 9, 2007. Times Online.
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article2045207.ece
National Cancer Institute. Last Hours of Life (PDQ®). Health Professional Version. Last updated. June 6, 2007.
Hatherill M, Tibby SM, Williams C. March MJ, Murcoch IA. Withdrawal of ventilation from the dying child. Clinical Intensive Care. 1997. 8;5:222-227.

Perkin RM, Resnki DB. The agony of agonal respirations: is the last gasp necessary?
Journal of Medical Ethics. 2002;28:164-169.
http://jme.bmj.com/cgi/content/abstract/28/3/164

Additional information:
Dyer KA. My NICU Baby is Dying: Now What? Available at:
http://www.squidoo.com/marchofdimes/mynicubabyisdying
Dyer KA. My NICU Baby had Died: Now What? Available at: http://www.squidoo.com/mynicubabydied/
Carter BS. Bhatia J. Comfort/palliative care guidelines for neonatal practice: development and implementation in an academic medical center. Journal of Perinatology. 2001. Jul-Aug;21(5):279-83.
Full article available at: http://www.nature.com/jp/journal/v21/n5/abs/7210582a.html

Carter BS. Ethical Issues in Neonatal Care. eMedicine.
Available at: http://www.emedicine.com/PED/topic2767.htm

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Tuesday, July 10, 2007

What can I *do* when a NICU baby dies?

The death of the fourth sextuplet prompted the Blog entry on "What can I *say* when a NICU baby dies?" This entry included several helpful suggestions for what you can say.

This blog is a follow up to the
"What can I *say*" entry with helpful suggestions for "What you can *do*."

What can I *do* when a NICU baby dies?
Two very helpful things you can *do* to support a NICU parent who has lost a baby are to listen and to simply be.

Listening Helps
According to research, doctors on the average interrupt 20 seconds after their patient begins to speak. With the hurried pace everyone seems to be keeping these days, I would think that people often interrupt each other at close to a similar rate. For someone trying to tell their NICU story of loss, listening can be a true gift.

One of the most important things you can *do* for a grieving NICU parent is to give him or her your presence. The ability to listen can be a great source of comfort. Listening communicates respect, caring and empathy. Sometimes all a parent may needs is someone who will truly and emphatically listen to the story of grief. Really listening involves being present for the person, not interrupting and staying connected and focused on what he or she is saying.

Sitting with a NICU parent, listening to the NICU story, being a witness to the pain and sorrow can help provide invaluable support during times of duress.
Spending a few quiet moments in silent contemplation, holding a hand is another effective way to convey your sympathy and support.

Advice on How to Listen
There are several different versions of this inspirational poem on listening. I have pulled one that I thought had the best message and referenced the others under Resources.

There are also several short articles in the references on characteristics of good listening and listening tips from a communication studies course, if you need to practice your attentive listener skills.

Listen

When I ask you to listen to me, and you start giving me advice,
You have not done what I asked.

When I ask that you listen to me, and you begin to tell me why I shouldn't feel that way,
You are trampling on my feelings.

When I ask you to listen to me, and you feel you have to do something to solve my problems,
You have failed me, strange as that may seem.

Listen.
All that I ask is that you listen,
Not talk or do - just hear me.

When you do something for me
That I need to do for myself,
You contribute to my fear and feelings of inadequacy.

But when you accept as a simple fact
That I do feel what I feel, no matter how irrational,
Then I can quit trying to convince you
And go about the business
Of understanding what's behind my feelings.

So, please listen and just hear me
And, if you want to talk,
Wait a minute for your turn - and I'll listen to you.

Source: Author Unknown. Listen. Westhartford Counseling Center.
http://westhartfordcounselingcenter.com/listen.htm


Just Be
Another helpful resource to share with a friend who is hurting, is your presence and your full attention.

Be yourself and relate person to person.
Be ready to listen again and again.
Be respectful.
Be aware of feelings and non-verbal cues.
Be present.
Be comfortable with silence.
Be human.
Be genuine.
Most of all--Be there.
© Kirsti A. Dyer, MD, MS

Remember that two of the greatest gifts you can give to a NICU parent are the gift of listening and the gift of your presence.

Do not underestimate the healing presence yourself and of really listening to someone who is going through a difficult experience.


Other Resources:
Chadwick. N. Please Listen. http://www.1stholistic.com/prayer/hol_prayer_please-listen.htm
Nickerson LS. 2007. Characteristics of Good Listening. Listening and Understanding: Communication Studies. University of Idaho. http://www.webpages.uidaho.edu/~lnicker/page28.html
Nickerson LS.
2007. Listening Tips. Listening and Understanding. Communication Studies. University of Idaho. http://www.webpages.uidaho.edu/~lnicker/page28.html
Author Unknown. Please Listen to Me. Communication Studies. University of Idaho.
http://www.webpages.uidaho.edu/~lnicker/page29.html

Sources:

CBS Broadcasting Inc. June 25, 2007. 4th Sextuplet Born To Minn. Couple Dies. Available at: http://wcco.com/topstories/local_story_176160040.html
Dyer KA. What can I *say* when a NICU baby dies?. June 2007. Available at: http://nicuparentsupport.blogspot.com/2007/06/what-can-i-say-when-nicu-baby-dies.html
Dyer KA. Comforting Moment - It's Only Words... June 2007. Available at:

http://nicuparentsupport.blogspot.com/2007/06/611-comforting-moment-its-only-words.html
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Quill TE. Arnold RM. Platt F. "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes. Ann Intern Med, Oct 2001; 135: 551-5. Available at: http://www.annals.org/cgi/content/full/135/7/551

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Monday, July 9, 2007

7/9 - Comforting Message - Coffee helps in any Crisis

One of the first things we did after my daughter was transferred to the level IV NICU and was safely settled in was to go off to walk across the street from the hospital and get a cup of coffee.
Green Coffee Cup

Actually, this seems to be
the basic need of the human heart
in nearly every great crisis
- a good hot cup of coffee.
Alexander King



While Coffee may not help to solve the crisis, stopping for a coffee break gives you a few moments to pause and reflect upon the crisis.

In our case, getting a cup of hot coffee gave us a chance to get out of the overwhelming new foreign environment of the NICU (Neonatal Intensive Care) and do something familiar--drinking a cup of coffee. Doing something simple, something we did every day helped to restore a sense of being normal, if only for a few moments.

After the coffee break we'd taken enough of a break to gain some composure and were ready to go back to resuming getting oriented the NICU.


Photo Source: Ali Ozt├╝rk. Coffee Cup. Royalty Free Use.

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Sunday, July 8, 2007

7/8 - Encouraging Message - Do Something about Feeling Lost in the NICU

Lost Scrabble Pieces

Theres nothing terribly wrong with feeling lost,

so long as that feeling precedes

some plan on your part to actually do something about it.

Jhonen Vasquez

Many NICU Parents feel lost, especially during the first few hours and days in the unfamiliar, unsettling foreign environment of the Neonatal Intensive Care Unit.

Parents can begin getting over that feeling of being lost in the NICU is by developing a plan "to actually do something about it." One easy thing to do is to download and read "For Those Who Hold the Littlest Hands" the free NICU ebook.

One of the best plan is to gain knowledge and learning more about the NICU environment. Learn what you can about about the equipment and the jargon, the language or the NICU speak used by the physicians and nurses.

Some of the resources available from the NICU Parent Support lenses for developing a plan include:

Photo Source: Penny Mathews. Lost. Used with Permission.

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