Benefits of Keeping a NICU Journal or NICU Diary

Oprah said many years ago about keeping a journal that:


Journaling is someone to talk to
when there is no one to talk to.

There are many benefits for NICU Parents to keeping an account of their time in the NICU as a Journal or a daily diary.

NICU Staff, Nurses and Social Workers may encourage parents to keep a daily account of their NICU adventures as a way of coping with the NICU.

Keeping a NICU Journal allows parents to monitor the changes that are occurring with their NICU newborn which may be easier to see when reviewed over time.

To paraphrase a quote by musician John Mayall,

Journals are markers to whatever is going on in your life, at a particular moment.
They are the memories and recollections...and the stories that were going on at the time.

What to Include in a NICU Journal
There are several different NICU Journals that have been created for NICU Parents either to purchase or to download for free.

Things to include in a NICU Journal information about your baby's.

• Age
  
• Weight
• Types of Monitors, IV's, Lines
• Breathing Help
  
• Method of feeding
• Medications
• Tests and Procedures
  
• Ways of Interacting
• Nurses and NICU Staff
• Visitors
• Questions to Ask
• Other Thoughts and Feelings
  

Initially it may be enough to just be including the medical information that you can understand and the questions that you might want to ask. In time, you might include how you are feeling and what you are thinking about the NICU experience.

Benefits of Keeping a NICU Journal
The benefits of keeping a journal also apply to keeping a NICU Journal.

• Journaling can be an effective way for the journal writer to process stressful, traumatic or life-changing events.
• Keeping a journal can have a positive impact the journal writer.
• Journaling serves as a catalyst for self-discovery and self-reflection.
• Journal writing can also lessen symptoms and improve physical and mental health.

Other benefits found in Telling the Story also apply to NICU Parents journaling their NICU Experience and Telling their NICU story:

1. Writing our stories can help in explaining the world and making sense of the insensible.
2. Storytelling has been used for centuries as a beneficial way for grieving people to cope with loss.
3. For many patients and parents telling their story is what helps them to cope with or heal from their disease or situation.
4. Writing the story about one’s life experiences helps improve a person's physical and mental health.
5. Grieving NICU parents should be encouraged to tell their story of grief as often as needed so the reality of the loss becomes real.
   

Keeping a NICU Journal may be a very helpful and useful way for NICU parents to cope with the their NICU experiences and another way of becoming empowered NICU parents.

More Articles:
Dyer KA. 2009. Students benefit from e-Journaling or using Web Journals in an Online Grief, Loss & Bereavement Course. TCC Worldwide Online Conference. Refereed Proceedings. Vol. 2009. No 1.
Austprem. NICU Checklist. Products, Resources and Links.
Hathorn M. Keeping a Preemie Baby Diary in the NICU. Premature Baby - Premature Child.
Dyer KA. 2009. Free NICU Journaling - NICU Diary Resources Available for NICU Parents. NICU Parent Support Blog.

Image: René de Cock. Writing a Diary. Royalty Free Use.

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.

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.

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.



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