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

6/25 - Comforting Message - Living on in the Hearts

During times of loss, often a simple message can be the most meaningful and comforting.

This week's comforting message is one of the simple quotes that I have found to be very meaningful and comforting over the years during times of loss.

To live in the hearts we leave behind is not to die. Thomas Campbell

To realize the impact of this quote, take a moment to think about

How many people have you known in your life that still live on in your own heart and in your memories?

Photo Credit: Janet Goulden. Two Hearts. 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.

Water Blessing Labels Turn Water (or Medicine) into Liquid Prayers

When I stumbled upon this website, I immediately loved the concept of using words as a simple way to enhance healing especially in the hospital setting and turn water or medicine into a liquid blessing for the patient and also for the family members.

Their motto seemed to resonate with me also:


Transform your water into Liquid Prayers.

The concept is simple. The Spirit of Water company has created crystal clear static-cling labels that be placed on containers of water or other fluids.

The idea that I liked the most was using these labels was one of the testimonials that I saw by a Chemotherapy nurse. She used the labels in the hospital setting, placing words of encouragement "courage" and "love" for her patient on I.V. fluids.

The wheels started turning as to how these labels could be used in the NICU setting to support NICU Parents and NICU Babies.


Empowering Parents to Participate in the Healing Process
My greatest frustration in being a NICU Parent was the helplessness and the feeling that I was not able to contribute anything to my daughter's care.

The inability to do anything, to contribute to my daughter’s care medically as a physician or emotionally to hold her hand and pacify her as a mother was indescribably frustrating. How was I supposed to "turn off" my years of training as a physician—being in the hospital, caring for patients and providing them comfort during a tormenting time? It was impossible.

We used several different additional modalities--music, blessings and touch--when my daughter was in the NICU. These were things that I thought to bring in as part of a more Integrative Approach to care, a way that I could participate in her care and enhance her treatment. It was my hope that these additional treatments would bolster her inherent strength and inner healing abilities.

Many of these ways of helping a NICU baby that we used have since been shown in research studies to have some positive benefits with NICU babies. If nothing else, as long as the treatment is not harming the baby, I think letting parents 'do something' to actively participate in their child's care is very important.

Using Water Blessing Labels in the NICU setting
If the water blessing labels had been available at the time, I would have asked the NICU staff put them on her I.V. fluids. (e.g. love, healing, trust, courage, guidance).

I also would have used them on any bottled water we were drinking (e.g. love, healing energy, manifesting miracles) as another way to feel that we were doing something by holding her in our foremost thoughts and using the power of words and positive thoughts even if we weren't with her.

Favorite Words or Combinations
This is a list of my favorite words or word combinations from their various collections. Maybe with enough interest, the company will eventually develop a line for the hospital setting.

• From the Healing Medicine Collection - energy, courage, healing, wholeness, breakthrough, nurturance, body wisdom, healing + energy
• From the Personal Growth Collection - love, health, trust, strength, success, vitality, gratitude
  
• From the Prosperity Collection - focus, trust, success, miracles, manifest + miracles, gratitude
  

Source:
The Spirit of Water Website - http://www.thespiritofwater.com/
Testimonials - http://www.thespiritofwater.com/Miracles.htm
Observing Mother's Day with Renewed Appreciation - http://www.journeyofhearts.org/resources/momday.html

What are the NICU Levels of Care?

It is likely if my youngest daughter had been born even 10 years earlier than she was, or born in a more rural setting that she would not be with us here today because she may not have gotten the treatment that she needed to support her heart and lungs (cardio-respiratory system) during the first few critical hours of life.

In our case, she was born at a hospital with a Level 3 standing for their Neonatal Intensive Care unit. In order to get from basic newborn care (Level 1) to the more highly skilled care unit they moved her from one room in the hospital to another.

Ultimately she ended up needing even more specialized care and was transferred to the regional Level 4 NICU that had the potential to deliver the highest level of sick newborn care.

Levels of Neonatal Care Units
The levels of care are used as a method of designating the care provided by hospitals for newborn infants. It is based according to the complexity of care provided, ranging from basic care or level one to the most complex care

• Level I - Basic Neonatal Care The minimum required for any facility that provides inpatient maternity care. The hospital must have the necessary personnel and equipment to

• Perform neonatal resuscitation
• Evaluate healthy newborn infants
• Provide postnatal care
• Stabilize ill newborn infants until transfer to a facility that provides intensive care.

• Level II - Specialty Care Nurseries In addition to providing all of the basic care listed above, Special Care Nurseries can

• Provide care to infants who are moderately ill with problems that are expected to resolve rapidly
• Provide care to infants who are recovering from serious illness treated in a level III (subspecialty) NICU.

• Level III - Subspecialty NICU's Care for newborn infants with extreme prematurity or who are critically ill or require surgical intervention.

• Level IV - Regional Subspecialty NICU's (Level IV is a designation about the Level II, only found in a limited number of the states).The Level IV NICU's are often found in regional academic medical centers and can provide the most complex level of neonatal care including
  
• Advance diagnoses
• Treatment of fetuses, preemies and newborns with complicated conditions.
  

Source:
Committee on Fetus and Newborn. Levels of Neonatal Care. Pediatrics. 2004. 114;5:1341-1347. Available online at: http://aappolicy.aappublications.org/cgi/content/full/pediatrics;114/5/1341

6/4 - Comforting Moment - Information Helps During Times of Loss

For many parents the loss of a baby is among the highest levels of loss, if not the highest.

While little can assuage the difficult and forgotten grief surrounding stillbirth and neonatal death, information can be helpful regarding the normal feelings and experiences which leave parents in an emotional and spiritual wilderness.

Dr. Elizabeth K. Best

While information cannot take away the intense pain and sorrow you are feeling, getting informed and reading useful resources can help parents to understand the physical and emotional responses and find ways of managing these responses.

Information can also help parents find suggestions and resources that others who have been in similar situations have found to be helpful during their own time of loss.

6/3 - Weekly Encouraging Message - Coping with Life

This week's Encouraging Message is a reminder of just how much we learn about life from our children.

Parents learn a lot
from their children
about coping with life.

Muriel Spark (1918-2006)
Scottish Novelist

I thought I was an expert on being in the hospital and dealing with crises, but my daughter's unexpected NICU admission taught me many new things and gave me invaluable insights about being in the hospital--from the family's perspective.

You can read some of these "Lessons Learned from Crisis" that I learned in the article that written soon after my experiences.

May you enjoy learning from your children.

Image: Stef Komen. Flower in Hand. Royalty Free Use.

What's in a Name? NICU, NNICU, ICN, SNCN, SBCU, SCN, PICU

NICU, NNICU, ICN, SNCN, SBCU, SCN, PICU - What term do I use?

There are a variety of different terms used to describe the hospital care for newborns, sick newborns and premature infants (preemies).

Which term is used often depends on the age of the newborn or child, country of origin and the level of care provided being.

The following list is a list of the various different abbreviations I was able to find.

• ICN - Intensive Care Nursery, (neonatal) Intermediate Care Nursery
  

• NICU - Neonatal Intensive Care Unit
  


• NNICU - Neonatal Intensive Care Unit (UK)
  

• NNU - Neonatal Unit (UK)
  

• PICU - Pediatric Intensive Care Unit
  

• SBCU - Special Care Baby Unit (UK)
  

• SCN - Special Care Nursery (Canada)
  

• SNCN - Sick Newborn Care Unit (India)
  

If you know of others, let us know.




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

The death of an infant is tragic,
and each family learns to cope in a different way.

Brosig, Pierrucci, Kupst, Leuthner
Infant end-of-life care: the parents' perspective

While coping with the end of a NICU newborn's life is a very difficult situation for parents, the process can be made easier with support from family, friends and the hospital care providers and utilizing various coping strategies.

In a study published in April 2007 in the Journal of Perinatology researchers surveyed parents to identify factors that were important to them in caring for their infant at the end of life. The aspects of care that were considered to be most important to parents were:

• Honesty - from hospital staff
  
• Empowered decision-making - parents wanted to be involved
  
• Parental care - staff reminders to take care of themselves--the parents--as well as the baby.
  
• Environment
• Faith/trust in nursing care
• Physicians bearing witness - importance of having the physician present throughout the process of their child's death
  
• Support from other hospital care providers - chaplains, social workers, palliative care and child life specialists.
  

Researchers' Conclusions:
Results of this study suggest that most parents are able to effectively cope with the death of their infant and that there is much the medical staff can do to improve the end-of-life care experience for infants and their families.

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

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

5/27 - Weekly Encouraging Message - Newborn Babies

I am a great believer in the power of words and have long felt based on my experiences dealing with people facing challenging events or a life crisis that:

Sometimes, it seems that all you need is the right quote, poem or inspirational message at the right moment to help provide perspective, insight and aid in surviving a life crisis.

...it can be helpful to read the words from others who have been there and survived.

Kirsti A. Dyer MD, MS
Journey of Hearts

NICU Parent Support Blog will be featuring Weekly Encouraging Messages or EM's to encourage NICU parents in finding hope and gaining perspective while facing their life challenge.

____________________________________________________________

This week's EM (Encouraging Message) is one of my favorite quotes about babies from Carl Sandburg:

A baby is God's opinion that life should go on.

Never will a time come when the most marvelous recent invention is as marvelous as a newborn baby. The finest of our precision watches, the most super-colossal of our supercargo planes don't compare with a newborn baby in the number and ingenuity of coils and springs, in the flow and change of chemical solutions, in timing devises and interrelated parts that are irreplaceable.

Carl Sandburg (1878-1967)
American Poet

May you enjoy your marvelous invention.

Scope of NICU Parent Support Blog and Site

A recent study of NICU parents found a large percentage of those completing the survey wanted more information made available to them about the organization of the NICU and whom to talk with about any questions and concerns that they had. One mother wrote,

Most parents in this situation want and need information as well as support! There should be a much more extensive library or articles and information accessible to parents.

The blog is here along with the NICU Parent Support website, the "My Baby's in the NICU: Now What?" e-Book (both due to be released by the end of June) and the series of NICU Parent Support Lens on Squidoo to provide information, encouragement and support for NICU parents as they find a way of making it through the NICU experience.

All of these resources have been created by a former NICU Parent, physician and professional educator to inform, reassure, calm, encourage and comfort parents coping with the admission of their baby to the Neonatal Intensive Care NICU.

Scope of the NICU Parent Support Site
The blog, the website and the lenses will cover many different aspects of the NICU experience from surviving the early days filled with shock and anxiety to the apprehension that parents often feel when taking their newborn home.

• Information - Articles, Research, Reflections from a Former NICU Parent
  
• Resources - Links to beneficial resources, other sites, latest research and products
  
• Encouragement - Weekly Encouraging Messages are posted to the blog.
  
• Inspiration - Messages and Links to other sites, other stories of inspiration
  
• Comfort - Comforting Messages and Thoughts are posted to the blog.
  
• Support - Through the blog, the website, the Squidoo lenses and the e-Book.
  

Several lenses have been created at Squidoo for NICU Parents:

• NICU Parent Support Site Lens - The overall organizing lens
• My Baby's in the NICU: Now What?
• Surviving Your NICU Experience - Advice for NICU Parents and Families
  
• CarePages - Connecting Friends and Family During Times of Challenge
  

Resources for NICU Parents Whose Baby is Dying
There are also resources, comfort and support for those parents who never get to take their newborns home, since some babies live out their entire short life in the NICU. Resources, suggestions and comfort are provided for those parents who must cope with the fact that their NICU baby is dying and then must face the death of a NICU baby.

• Information - Articles, Research, Reflections from a Former NICU Parent
  
• Resources - Links to beneficial resources, other sites, latest research and products
  
• Comfort - Comforting Messages and Thoughts are posted to the blog.
• Hope - Messages of hope and links to other sites, other stories of hope, even at the end of life
  
• Support - Through the blog, the website, the Squidoo lenses and the e-Book.

Two lenses have been created at Squidoo for NICU Parents whose Babies are dying:

• My NICU Baby is Dying: Now What?
• My NICU Baby has Died: Now What?
  

Welcome to NICU Parent Support Site Blog

The NICU Parent Support Site Blog was created as a way to supply updates, provide information, send inspirational messages and feature NICU resources as part of the NICU Parent Support Site, http://www.nicuparentsupport.org/.

NICU Parent Support Site
We anticipate the NICU Parent Support Site will launch by the end of June.

The site is being created by a former NICU parent who is also a respected physician and professional health educator. NICU Parent Support Site and this accompanying blog will provide information, resources and support for parents facing the challenge of having their child in the NICU.

The eBook - The My Baby's in the NICU: Now What?
In addition, the site will also feature our soon-to-be released e-Book, My Baby's in the NICU: Now What?

This e-Book is the resource we wanted, but couldn't find when faced with the sudden, unexpected admission of our youngest daughter to the Neonatal Intensive Care Unit (NICU), or in our case the Intensive Care Nursery (ICN) soon after her birth.

Get Information, Be Reassured and Keep Updated

You can keep updated as to our progress on the NICU Parent Support Site and eBook by subscribing to this blog:

• Subscribing to this blog via the Posts (Atom) (use this link or link at the bottom of this blog entry).


• Subscribing to the NICU Parent Support eMail List using this link, or the link in the side menu.

By subscribing to this blog and/or the NICU Parent Support eMail List, in addition to receiving periodic information and inspirational messages, you will be the first to know when the NICU Parent Support site goes live and when our eBook, My Baby's in the NICU: Now What? becomes available.