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.

8/12 - Encouraging Moment - Riding the NICU Roller Coaster Ride

The NICU experience is often described by many parents as a roller coaster ride. It is a series of highs and lows, ups and down, times that are exhilarating, uplifting and exciting, followed by times when all you can do is close your eyes and hang on for dear life.

I think it is helpful for parents to realized that they are in for a series of ups and downs, hopefully more ups than downs during their NICU time.

Riding the NICU Roller coaster
This passage comes from Dianne I. Maroney, a NICU Nurse, NICU Parent and owner of the website premature-infant.com. She describes the Roller coaster ride of the NICU:

For years I had been telling parents,

"Having a baby in the NICU is a roller coaster ride."

Although accurate, the analogy pales beside the reality.

The range of emotions is beyond imagining.
There is the moment of joy
when she opens her eyes peacefully,
followed by panic at the slightest hint of trouble.

You can read more from her article on "Helping Parents Survive the Emotional "Roller Coaster Ride" in the Newborn Intensive Care Unit" published on the Prematurity.org site

Photo Credit: Peter Hamza. Rollercoaster. Royalty Free Use.

8/6 - Comforting Message - Overcoming the Pain and Suffering

Today's comforting quote comes from Helen Keller, a woman who was both deaf and blind, but overcame these obstacles to become a college graduate, author, lecturer and activist.

Although the world is full of suffering,

it is also full of the overcoming of it.

Helen Keller

When you are right in the midst of suffering and feeling intense pain, it may be difficult to believe that you will ever get beyond the suffering. For NICU Parents these moments can be overwhelming, disheartening and heart-breaking.

Seeing the Other Side
One way of helping to get through the suffering phase is to find someone who has made it through and seen the other side of the suffering and talk to them, to get a glimpse of the future.

Other NICU parents, the NICU nurses and Physicians who have been there and seen positive outcomes from the NICU can help provide valuable perspective whether it is a baby being eventually discharged to home, or if it is helping a family create memories and spend the last precious moments with their dying baby.

If you NICU is lucky enough to have a NICU Parent Pathfinder or someone designated to help get NICU parents oriented, be sure to use their resources.

Photo Source: Robbie Ribeiro. Nature's Force. Royalty Free Use.

Creatively Coping: Preemie Prayer Pockets

Laurie Anderson of Southern Stitches has created a beautiful idea for NICU Parents and their family and friends. You can create a Preemie Prayer Pocket as a gift for parents, family, friends and nurses to wear and think about your baby or other NICU babies. It is a wonderful idea of creatively coping with the NICU.

Preemie Prayer Pocket
The tiny footprints on the design were taken from a 14-week old baby weighing 3 oz. You can download the instructions on her website. Follow the directions to create the pocket, enclose the preemie prayer, or any other message.

To simply attach a pin to the back for wearing, or use baby diaper pins if you want something more decorative.

The Prayer for the Preemie Pocket
Preemie Prayer Pockets have an prayer enclosed within the pocket.

Prayer for the Prayer Pocket

If you have worries, fears and tears
for this tiny baby, held so dear,
just tuck them in this little heart…
Angels will take them to God above
and He will comfort you with His healing love.
When you come back later and peek inside.
You will see there's nothing left to hide…
for God's love will forever abide.

Once you get the Preemie Pocket Prayer, you can write down your own concerns and stick them in the pocket.

Note:
The preemie patterns are to be used only for charity sewing for preemies, no sales are allowed. The designs and instructions themselves are copyrighted and all rights remain with Laurie Anderson/Southern Stitches

Designs © Laurie Anderson, Southern Stitches. The designs are for charity use only. No sales are allowed.

Source:
Anderson L. Preemie Prayer Pockets. Threads of Love. Southern Stitches. http://www.southern-stitches.com/preemie.html

Other Resources on Prayer Pockets:
Prayer Pockets. Forum. Martha Pullen.com. Sewing Made Easy.
http://forums.marthapullen.com/read.php?f=10&i=1704&t=1313

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.

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.

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

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.

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 Oztürk. Coffee Cup. Royalty Free Use.

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

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:

• My Baby's in the NICU: Now What? - The squidoo lens created to help NICU parents in managing the initial shock phase--the first few hours and days of realizing that your life now involves a NICU baby.
  
• What does all of this equipment do? This link provides information to help NICU parents have a better understanding of the high-tech equipment used in the NICU.
• What are they talking about (definitions)? A collection of articles that provide common definitions, terms and abbreviations used in the neonatal intensive care unit.
  

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

Breathe, Just Breathe - An Effective Strategy for Coping with a Challenge

No one can find the rewind button now, So cradle your head in your hands, And breathe, Just breathe, Oh breathe, Just breathe Modification of Lyrics by Anna Nalick, Breathe

Just Breathe

The lyrics to this song, "Breathe, Just Breathe" have been my new mantra when things start getting difficult. It is a reminder that when I feel stressed, I need to breathe to relieve the tension.

Breathing - An Effective Strategy for Coping
There are several different breathing techniques that can be used to help in calming the frazzled nerves that NICU Parents may frequently experience. I'll include several over the next few weeks.

Calming your own nerves helps you to keep your baby calm when you interact with him or her.

Slow, Deep Breaths
This technique is one that can be easily done in just a few minutes. If you are feeling nervous, you may want to take a minute before you walk into the hospital or onto the NICU and again while you are scrubbing your hands to calm yourself down.

1. Stop what you are doing and focus on your breathing.
2. Breathe deeply.
3. Exhale slowly.
4. Feel your body relaxing.
5. Repeat 3-5 times.

Mini Break - 30 seconds to Relax.
Another quick technique that can be used.

1. Find a quiet place.
2. Close your eyes.
3. Count backwards from 10 to 0.
4. As you count, imagine that your worries are shrinking in importance, until you reach 0 and they have diminished in size.
5. Open your eyes and feel refreshed.

Photo Credit: Julia Freeman-Woolpert. Sorrow and Worry. Used with Permission.

A Self Care Strategy for NICU Parents - Remember to HALT

During times of stress it can be difficult to remember to stop what you are doing and take care of yourself; this is especially important when your newborn is hospitalized in the NICU.

NICU parents need to be sure to take care of themselves...in order to have the energy and the reserves to be available to support your baby.

It is very important for NICU parents to follow the acronym coined by A.A. (Alcoholics Anonymous) and be sure to H.A.L.T.

You should never let yourself get too

Hungry
Angry
Lonlely
Tired

This simple self care strategy will help you out greatly to decrease your stress and distress during your time in the NICU.

Photo Source: Daniel Battiston. Stop! Royalty Free Use.