9/10 - Encouraging & Comforting Message: Free Hugs Campaign

Today is Free Hugs Day. If you don't know about the inspirational Video that has become a YouTube Phenemonon take a look at the lens that I created on Squidoo.

In the the Spirit of the Free Hugs Campaign, I am passing along the information to you with a quote and a virtual hug to hopefully brighten up your day.

Millions and millions of years
would still not give me
half enough time
to describe
that tiny instant of all eternity
when you put
your arms around me
and I put my arms around you.

Jacques Prevert

Free Hug Day - September 10, 2007
The Free Hugs Campaign began as one person's attempt to make a difference and reach out to others to brighten their lives.

The Free Hug Campaign is a random act of kindness, a selfless act performed by a person for the sole reason of making others feel better.

For More information on Free Hug Day, see the Free Hug Campaign on Squidoo.

Enjoy a Virtual Hug
Here's Your Online Hug:

((( Hug )))

Now go and pass it on to someone else.

Shifting to a Weekly Posting Schedule for the Fall
My apologies for the length between posts. The semester has started for my girls and myself, which has lead to some increased time demands.

I will be shifting to a schedule posting at least one blog entry each week along with updates about the NICU Parent Expo.

Photo Source: Peter Rol. Fenne Lien. Royalty Free Use.

8/15 - Encouraging Message - Learning from Challenges

I have always grown
from my problems and challenges.
From the things that don't work out,
that's when I've really learned.

Carol Burnett

Comedians often turn to comedy as a way of coping with their life challenges and hardships. Carol Burnett has faced many hardships and losses in her life, including the death of both a husband and a daughter.

I think as NICU Parents and as parents in general, we often wish that there weren't as many problems and challenges to learn from.

Many of us discover a strong internal sense of strength, for some a light, that helps to guide us through the difficult times.

Resources for Managing Your NICU Challenge:

• How Will I Survive the NICU? The Squidoo lens developed for helping NICU parents once the initial shock period is over.
• What does my baby's diagnosis mean? Several helpful articles on the most common problems faced by NICU babies. Some articles have additional links for even more information.
• How do I talk to the doctors and nurses? Several useful articles to help in talking to the doctors and nurses as well as figuring out what questions may be useful to ask.

Photo Source: Stefanie L. Breakthrough. 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

7/29 - 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.

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.

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.

NICU Parent Pathfinder - Helping Parents Navigate the NICU

The NICU admission of a newborn is an enormously stressful time for the family on many levels. This is a my description of the NICU from an article published several years ago:

The high-tech NICU environment is unfamiliar and intimidating for most parents. The instruments, incubators, intravenous equipment, respirators, procedures, monitors, hospital jargon, lights, alarms, smells, and sounds can be terrifying for those unfamiliar with the intensive care setting. There is the constant worry about the child’s well-being, intensified when the parents are unable to be at the hospital around the clock due to other life commitments.

The logistics of daily visits can be particularly complicated and an additional hardship if the infant is hospitalized in another town. The experience can be distressing, overwhelming, and exhausting for parents, other children, and family members, creating a major upheaval in once normal daily routines.

NICU parents must quickly learn about their NICU baby's condition, treatment plan, getting around in a strange environment and then how to manage all of the pressures of this life-changing event.

The Children's Hospital of Illinois is making this process a little easier, by creating the new position of a Parent Pathfinder for their Neonatal Intensive Care Unit.

NICU Parent Pathfinders
Megan Mutti, a former NICU Parent, is Children's Hospital's first Parent Pathfinder for their Neonatal Intensive Care Unit.

In this new position, Mutti's job is to help NICU parents in understanding their baby's condition, care plan, and most of all "get acclimated to what is a strange and unique environment." She spends most of her time in the hospital's NICU mentoring and helping NICU parents adjust.

Additionally, she provides support to the NICU Family Advisory Board, a group of parents whose children “graduated” from the unit and advice to hospital officials.

I know it would have been very nice to have a Parent Pathfinder to help us find our direction during our NICU adventure.

Sources:
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. Abstract at: http://www.neonatalnetwork.com/nn3/Abstracts/nnmj05.htm#grieving Swiech P. New position will help parents at Children's Hospital. Pantagraph. July 5, 2007. http://www.pantagraph.com/articles/2007/07/05/news/doc468d39c9d9bf5436719302.txt
Children's Hospital of Illinois. Neonatal Intensive Care Unit (NICU). 2007. http://www.childrenshospitalofil.org/programs/inpatient/nicu.htm

Photo Sources:
Melodi T. Hospital Walkway. Royalty Free Use.
Pixel Pusher. Directions. Royalty Free Use.

6/24 - Encouraging Message - Keeping the Faith

Faith is the bird that sings when the dawn is still dark. Rabindranath Tagore

Have Faith
"Have Faith" was an acronym that I developed for the paper that I wrote on "Identifying, Understanding, and Working with Grieving Parents in the NICU" as a way to encourage parents to have faith, in their child, themselves, the NICU professionals and the healing process.

"Have Faith" stands for

Hope.
Accept life changes.
Verbalize questions, emotions, and concerns.
Engage with supportive friends and family.
Empathize with other parents.

Fortitude to endure the experience.
Adaptability. Being able to roll with the waves.
Incredible courage to survive day to day.
Trust in your baby yourself, physicians, and the team.
Healing in whatever forms it may take.

Another Interesting Perspective on Faith

I stumbled upon another view of Faith in the NICU setting, this one from Shoshana Greenspan. In her article from May 2007, she writes of the challenges she faced in coping with her son's NICU admission and then with his eventual diagnosis with Cerebral Palsy.

Shoshana initially believed that when her son was in the NICU if she could remain in control of every factor that affected his life, that somehow she might be able to cure him. Her outlook shifted after remembering an encounter with a Hasidic family during her time in the NICU. For her these grandparents "demonstrated a profound understanding of the principles of faith by recognizing that control is not in our hands."

Instead of wanting to control every aspect of their granddaughter's treatment and care, this family wanted to understand her condition, but made no attempt to remain in control. Instead, with their faith they believed that God was in full control of their granddaughter’s fate. They realized that "Grilling the nurses would not change the fact that neither the parents, nurses nor even the doctors were in charge."

After remembering this family and their perspective on faith, Shoshana's own perspective changed as she writes below:

I no longer pray for all his difficulties to disappear overnight. I pray that he receive the appropriate therapy and treatment that will enable him to lead a full and meaningful life. I pray that God lead us to the doctors who will accurately diagnose and treat his various medical issues. Above all, I pray that God give me the strength to accept my son for who he is, with his unique strengths and weaknesses, just as I accept the strengths and weaknesses of my other children.

Shoshana Greenspan

Shoshana's sentiments are very similar to the ones echoed in the post last week in Asking Why and Finding Hope. In order to cope with the challenges parents find an internal core of strength and learn to accept their NICU baby to support their child in leading a meaningful life.

Source:

Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
Shoshana Greenspan. May 2007. Faith in the NICU. http://www.aish.com/family/heart/Faith_in_the_NICU.asp

Photo Source: Danny de Bruyne. Boring Winter. Royalty Free Use.

Coping Strategies Used by Parents to Deal with their Child's Death

They had a camera and they had pictures...
they had already taken his hand and feet prints...

Looking back we have not only our memories,
but some of the things...
those things are very important.

Parents of a NICU Baby Who Died

Coping with the end of a NICU infant's life is a very difficult situation for most parents; each family learns how to cope in their own way. The end-of-life experience with their infant can be made easier with support from family, friends and the hospital care providers.

In a study published in April 2007 in the Journal of Perinatology researchers surveyed parents and identify factors that were important to them in caring for their infant at the end of life. These were presented in a prior blog on "Factors Important to Parents at the End of their Infant's Life."

This study also identified various coping strategies that helped parents deal with their child's death. The strategies identified included:

• Family Support
• Keeping the Child's Memory Alive
• Spirituality & Faith
• Altruism - wanting to 'give back' to the hospital
  
• Refocusing on Life - often on the other children
  
• Validation of their Decision
• Bereavement Support Groups

Additional Recommendations
The Parents who were interviewed were asked what would have made their end-of-life experience better with their infant. Their recommendations included:

• Parents should always ask questions and stay informed.
• Parents need to be vocal and stand by their decisions.
• Be sure to keep siblings included.
• Participate in the child's care as much as possible.
  

How a person gets through a difficult experience, such as the death of a child, depends a lot on what happened and how the experience was handled at the time by the hospital staff and by family.

Parents who utilize these coping strategies that were identified, although they live through an excruciatingly difficult experience, are generally able to cope with the death of a child.

Researchers' Conclusions:
Results of this study suggest that most parents are able to effectively cope with the death of their infant. These results are in contrast to other studies that have shown a higher rater of depression and PTSD in parents who had a child die.

Related Blog
Factors Important to Parents at the End of their Infant's Life.

Source:
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. Journal of Perinatology. Online Publication 19 April 2007. http://www.nature.com/jp/journal/vaop/ncurrent/abs/7211755a.html

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.