Creatively Coping with NICU Journals, Diaries and Scrapbook

Three different resources have been created to help NICU Parents in keeping track of their baby's NICU experience are My NICU Journal, the NICU Diary® and Tiny Steps - My Journey Through the NICU Scrapbook.

My NICU Journal
NICU Nurse, Shelley Stevenson, RNC developed My NICU Journal as a useful product for parents of preemies and NICU nurses.

According to the Hearthworks website:

My NICU Journal is a book created to help parents record the milestones their preemie accomplishes as he or she improves and grows in the Neonatal Intensive Care Unit, creating a keepsake for parents to look back upon later.

The book is 30 pages, measures 8½" X 5½" with color illustrations. My NICU Journal is available with pink, blue, yellow or green covers for $9.95 each.

My NICU Journal is available online or by mail at the Hearthworks website.

NICU Diary®
The NICU Diary®: A journal for preemie babies was designed especially for moms and dads who have babies in the NICU or Special Care Nursery.

The NICU Diary® is available for purchase at the Preemie Store and More. According to their description:

The NICU Diary® gives you places to write weight gains, feeding changes, tests, oxygen needs and much more. You even have your own space for thoughts, feelings, and little notes.

The NICU diary® records your baby's special start in life and gives you a treasured keepsake for years to come. It includes two detailed pages for each of 45 days and extra pages for photos and to record for "baby's first." Priced at $9.95 each.

The NICU Diary also includes a gram conversion chart and a page to graph weekly progress.

Tiny Steps - My Journey through the NICU Scrapbook
Tiny Steps is a scrapbook to record your baby's journey through the Neonatal Intensive Care Unit (NICU) and was created by Esther Thomas, a nurse with 18 years of experience in the NICU.

The Tiny Steps NICU Scrapbook is available at the Preemie Store and More. According to their description:

Every page of The Tiny Steps NICU Scrapbook is filled with bright and colorful art, lots of space for special photos of your baby, family members, and hospital staff.

Plenty of space is also provided for writing notes, recording daily experiences, thoughts, precious moments, and those one-of-a-kind expressions that only newborns make.

Priced at $ 24.95.

The Tiny Steps NICU Scrapbook Contents:
* An easy to understand vocabulary list of the most commonly used medical terms in the NICU.
* Inspirational Bible verses, song passages, and humorous phrases to help you get through some of the more difficult days in the nursery.
* 90 daily entries that allow you to write your thoughts, and keep track of your baby's progress.
* A special pocket envelope to save tiny mementos.

Since these products were designed for Preemies, they wouldn't have worked well with our daughter's case, being a 'Sick Newborn.'

I probably would have used one of the free resources available, like the NICU Parent Diary from Cedars-Sinai's Good Beginnings.

More about Journaling in the NICU
Dyer K. 2009. Benefits of Keeping a NICU Journal. NICU Parent Support Blog.
Dyer K. 2009. The Importance of Telling the NICU Story. NICU Parent Support Blog.
Dyer KA. 2009. Free NICU Journaling - NICU Diary Resources Available for NICU Parents. NICU Parent Support Blog.

Free NICU Journaling - NICU Diary Resources Available for NICU Parents

Cedars-Sinai's Good Beginnings has developed reference materials specifically designed for the NICU parent and may be helpful during your child's hospitalization.

One of the useful resources available from the Good Beginnings Program is their their freely available NICU Parent Diary.

NICU Parents can download and printout the NICU Parent Diary to use as a means of tracking your child's progress and remembering important details about your NICU baby's growth and development.

Parents who are interested in more formal NICU Journals can see the different options available at the Creatively Coping with NICU Journals, Diaries and Scrapbook post.

More about Good Beginnings
Good Beginnings was founded in Los Angeles, California in 1979 by a group of concerned parents who had gone through the NICU and saw a need for a support group to help babies and their families in their time of crisis.

Today, over 25 years later, the organization is still comprised of volunteers, most of whom are former NICU parents, who relate to the struggles NICU families face.

They care deeply and can appreciate first hand the importance of the work that an organization like Good Beginnings does in providing critical support during a NICU family's time of need.

More about Journaling in the NICU:
Dyer K. 2009. Benefits of Keeping a NICU Journal. NICU Parent Support Blog.
Dyer K. 2009. The Importance of Telling the NICU Story. NICU Parent Support Blog.
Dyer K. 2009. Creatively Coping with NICU Journals, Diaries and Scrapbook. NICU Parent Support Blog.

Becoming an Empowered NICU Parent

One of the greatest difficulties for me as a NICU parent, who was also used to being a physician, was the overwhelming feeling that there wasn't anything I could do for my daughter.

I had to step back and turn over all of the care to those who understood the NICU technology and could help her medically to heal.

I described these feelings in an article that I wrote on "Observing Mother's Day with Renewed Appreciation," the first Mother's Day after my youngest was born.

In this situation I had to turn over complete control of her case to the neonatology team and consequently experienced feelings of complete helplessness.

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.

Becoming an NICU Empowered Parent
It didn't take long, perhaps only a few hours and I decided to change my feeling of helplessness and frustration and begin taking a more active role in her care. I looked for things we could do and ways we could to contribute to her care.

Three things that we did, which were recommended by other NICU parents as helpful ways of coping with the NICU:

1. Ask questions about your newborn.
2. Get involved with caring for your newborn.
3. Familiarize yourself with how the NICU works.

We created a Circle of Healing to have friends and family hold her in their hearts and minds and souls...so she could do better.

We brought in Music for her to listen to and if they had been available, I would have brought in Water Blessing Labels as a way to feel that we were doing something.

Ultimately, I created the Violet Heart Pin as something that I would have liked to have had to wear while she was in the NICU. I also wrote the Free NICU eBook For Those Who Hold the Littlest Hands as the resource we would have liked to have received when we were NICU Parents.

I think that's going a long way from feeling helpless and dependent on others to care for my daughter to becoming an Empowered NICU Parent.

Image Source. Benjamin Earwicker. All Hooked Up. Royalty Free Use.

Light a Candle for Hope or in Memory Online

Our brightest blazes of gladness are commonly kindled by unexpected sparks.

Samuel Johnson

For centuries people around the world have burned candles to bring hope for the future, to aid in healing and in memory of loved ones who have died.

In many different traditions and religions candle lighting is often used in sacred rituals as part of a prayer or blessing.

Lighting a candle is a good way for NICU Parents to feel as though they are doing something when their baby is in the hospital and find a moment of unexpected gladness.

Candles are lit for hope when someone is ill, for peace during wartime or for luck when facing challenges. Candles are lit as part of a prayer. Candles are also lit as a meaningful way to honor the memory of a loved one who has died.

Benefits of Lighting a Candle
I will often light a favorite candle and just sit, watch the hypnotic flames and thing about Chandogya Upanishad's quote that

There is a light that shines
beyond all things on earth,
beyond us all, beyond the heavens.
This is the light that shines in our hearts.

During times of challenging or times of sorrow, lighting a candle can give you something to do, a way of focusing your thoughts, intention or prayers on a problem or a person. Stopping to light a candle helps me to reconnect with the light that shines in our heart which is sometimes dimmed during times of challenge.

Lighting a candle can be used as a meditative tool. The simple ritual of lighting a candle and watching the hypnotic flickering flame is calming and relaxing. There is a soothing, healing effect in lighting a candle and watching the light emerge from the darkness.

Light a Candle Online
The Gratefulness.org website provides one of the most popular online websites for lighting a candle.

Visitors to the Gratefulness.org site can light a virtual candle for whatever reason they choose--to honor the birth of a baby, to celebrate a birthday or in memory of someone who has died. It is a place you can light a candle for hope or in memory of your NICU baby.

The first candles were lit on the Gratefulness.org site in May 2001. Since then more than 7,000,000 candles have been lit from people in 242 countries.

More about Lighting a Candle
Dyer K. 2008. Create a Candle Lighting Ceremony: Candles Can Help to Focus, Reduce Stress or Remember a Loved. Suite 101.
Dyer K. 2000. Light a Candle for Hope in the New Year. Journey of Hearts.

Image: Gratefulness.org.

Ways of Interacting with Your NICU Newborn

NICU Parents often feel more like visitors than the parents of their NICU newborn. They may even resent the NICU Team caring for their baby.

One way to help NICU Parents feel more like Parents is to find ways that they can interact with their new baby.

Empowering parents to "do something" that can uniquely contribute to the care of their baby can be very helpful in overcoming the feelings of frustration and helplessness.

Ways to Interact with Your NICU Newborn
There are many special loving ways for NICU Parents to interact with your baby and let him or her know you are there and you care.

Here some suggestions taken from the Free NICU eBook For Those Who Hold the Littlest Hands:

• Gently stroke or caress your baby. See how your baby responds. Be aware that some NICU babies do not like too much handling. You may just want to touch him or her.
• Lovingly hold your baby's foot or hand.
• Talk, read or sing quietly to your baby.
• Supply your baby with breast milk if possible.
• Write down your hopes as a poem or a blessing. Share your writings with your baby.
• Decorate your baby's incubator with washable toys, family pictures, cards, email messages & other special mementos. Make it a home away from home.
• Encourage your NICU baby to open his or her eyes by shielding your baby's face from the bright lights. This lets your baby look at you and around his or her environment.
• Kangaroo care (skin-to-skin) contact has been shown to help NICU babies thrive. Learn about this beneficial treatment. Check with the hospital’s use of Kangaroo care.
• Once your baby is doing better and his or her condition has stabilized, learn how to hold and rock your baby out of the isolette.

Parents Play a Special Role
NICU Parents need to realize that their role as parents is a special and irreplaceable one. Your voice, their touch and their presence are unique, familiar and reassuring for your baby.

These special parent features will bring comfort to the NICU baby and let him or her feel loved.

More:
Dyer K. 2005. Identifying, Understanding and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24 (4): 27 – 39.

Image Source: Jason Kastanje. Baby's Hand. Royalty Free Use.

NICU Parents Checklist - From Those who have Been There and Done That

The NICU Parents List here has been adapted from the Austprem - NICU Checklist and from suggestions that I included in Part 2 of the article that I wrote on "Identifying, Understanding, and Working with Grieving Parents in the NICU."

This checklist includes suggestions for coping with some of the basics, caring for your NICU baby as well as special tips for the family...things you might want to consider while your baby is in the NICU.

The Basics - Parking, Meals and Accommodations

Parking - Check about subsidized parking. Most hospitals offer some sort of parking discount for the families of long term patients. Ask.



Meals - See if meals can be provided for you, or if you can get meal vouchers for the cafeteria.

Accommodations - Find out if there are accommodations available within the hospital or nearby for when your baby is having a difficult time and you want to be closer.


More Accommodations - If you live a long distance away from the hospital, the hospital staff should be able to help you find accommodation nearby.

Caring for Your NICU Baby/Babies

Understand the Equipment and Charts - Have the nurses explain the equipment, their settings and the medical charts and how to read them. You'll know exactly what your baby did and what tests were done without having to ask.

Learn about the NICU - Learn about the routines, hand-washing and gowning procedures, visiting hours, nursing shift changes and when the doctors do their patient rounds.

Ask Questions if You Don't Understand - Ask the NICU staff to explain anything you don't understand. Ask again if you don't understand the first time, or get enough information. It can be hard to take all of it in at once.

Caring for Your Baby - Get involved in caring for your infant as soon and as much as possible. Ask what can be easily done by parents rather than have the nursing staff do it.

Learn how to...do things for your baby. Change a diaper, give a proper NICU bath, wipe the eyes or mouth and gently rubbing oil into dry skin.

Ask when you can hold and cuddle your baby - Realize that if the nurse says no because your baby is not well enough just then, that is okay. Check again later or the next day. Ask when might be better.

Check about Training Sessions - Some hospitals offer training sessions to officially teach parents how to do tube feeds so you can then help do the feeds even if you aren't breastfeeding.

Ask for foot and hand prints if possible. Babies grow so quickly that you won't remember how small they were to start.

Check when and what clothing is appropriate. The clothes will need to be easy to get on and off if your baby is still on oxygen or has other medical needs. Some hospitals won't allow clothing until your baby is a certain stage.

Bring in clothes for your baby to wear. Make sure the clothes have been washed and are marked. Provide a few spares in case your baby needs to be changed.

If you bring in clothes for your baby to wear...make sure there is a bag for the dirty ones for you to take home and wash. If they end up in the hospital wash, you may never see them again.

Make (or have someone else make) clothes for your baby. A great way to get relatives who can sew involved. Have them make something appropriate and the right size for your baby to wear.

Special Tips for the Family

Visitors - Find out how many visitors your baby may have at once, and if there are restrictions on who. If you have other children, check when they may visit and if there are any restrictions.

Get dad involved on his terms - Some dad's can't cope with full term babies, let alone NICU babies. Other dad's might feel left out or pushed away if they don't get to help.

Getting Extra Support

Try to get to know some of the other NICU parents - Talking with other who also have their baby in the NICU and are experiencing many of the same things may be helpful.

Ask to see a social worker or clergy if you feel the need - These services are usually available even though they may not be directly offered to you.

See if the hospital offers a support group - You might see them once or twice or weekly while your babies are in hospital.

Find out what additional resources the hospital has for parents
You might need them when you are in the hospital and also once you go home you.

Find out if there are any talks for parents (or grandparents). Read noticeboards regularly. Check in the Waiting Room area or wherever information is posted for families.

About Austpreterm
Austprem is an incorporated, non-profit organization in Australia. Those involved have all experienced, or been closely involved with the experience of prematurity. They aim to support in any way they can parents and caregivers of other premature infants and children. Their formal purpose, aims and objectives can be seen below.

Sources:
Dyer K. 2005. Identifying, Understanding and Working with Grieving Parents in the NICU, Part 2. Neonatal Network. 24 (4): 27 – 39.
Austprem. NICU Checklist. Products, Resources and Links.

Image: Modified from Dominik Gwarek. Feedback Form. Royalty Free Use.

The Violet Heart Pin - A Remembrance Pin to Honor a NICU Baby

The Violet Heart Pin was created as something that I would have liked to have had to wear while my daughter was in the NICU.

The pin was designed as a way of expressing heartfelt sympathies during challenging times, acknowledging the courage of those facing a significant life challenge or recognizing a current or past challenge.

The Violet Heart Pin can be worn by parents whose baby is in NICU as a reminder that they are holding their baby in their thoughts and prayers. Parents can also encourage family and friends to wear a Violet Heart Pin to indicate they are keeping the baby in their thoughts and prayers.

The Violet Heart Pin is also a way of expressing the loss of a NICU baby, or as a gift to express heartfelt sympathies for those who have lost a child.

The Violet Heart™ design combines the courage of the Purple Heart, the tears shed by a sorrowful spirit, the healing nature of the color violet with the hope of spring violets to represent courage, healing & hope. The design encloses a single tear inside of a violet-colored heart to symbolize sadness, courage and healing.

It is a simple way of revealing behind the smile, inside a heart that is crying.

These pins come in two versions one with a violet heart and a blue tear and the other a stylized version with a white heart and tear outlined in violet.

The pins measure between 5/8 and 7/8 of an inch and come attractively displayed on a 2 x 3 1/2 inch card and are available through PayPal for $5.99 plus 2.50 Shipping and Handling.

Find out more about the Violet Heart Collection at the Violet Heart website. To order see the Squidoo pages created for the Violet Heart Collection:

• The Violet Heart Collection
• The Violet Heart Collection on Squidoo
• The Violet Heart Collection on CafePress