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

Gift of Life from NICU Loss

Two articles in this month's O Magazine (March 2009) resonated with this former NICU Parent. They explored the issue of Milk Banks and how sometimes the gift of life can come from a NICU Loss.

"If anyone asks tell them we did this out of love for our babies."

Lynn Page

The article on "One Woman's Mission to Save Babies" was a very moving account about one woman's experience with a Milk Bank. Without giving too much away, the story is about Pediatric Psychologist, Lynn Page's experience with donating to Milk Bank following the birth of her premature triplets.

Her story in "O" and available online at Oprah's website, underscores how sometimes good things can come from loss.

O Magazine also took a look at the issue of whether or not Health Insurance will cover Breast Milk "Is Breast Milk Covered by Health Insurance?"

Thoughts on the Issue
I was glad to see the magazine raising these issues. Hopefully something will happen between the increased awareness to change health insurance coverage of this vital 'medicine' made by moms.

Milk Banks in North America

My Master's degree is in part in the field of Immunology, so when the decision whether to breastfeed or bottle feed my daughter's was mine, it was an easy choice to breast feed. I knew then of the benefits that breast feeding would have on their health and in improving their immune system.

When my youngest was in the NICU, I quickly understood the importance of breast milk for a NICU newborn and made the decision to start pumping breast milk while she was in the NICU, at a time, when I wasn't even sure if she would survive the NICU.

Since our day's in the NICU, I have gone on to teach Nutrition and one of the lectures focuses on the process of lactation (breast feeding) and the many benefits of breast milk.

The Human Milk Banking Association of North America
I'd looked into donating to a Milk Bank in 2000 as my older daughter grew older and I was working some and still pumping. The system didn't seem to be in place to make this an easy option. It is good to know that things have changed in nine years, but there is still only one Milk Bank on the West Coast (Mother's Milk Bank in San Jose). There is another one in Canada, the BC Women's Milk Bank.

The Human Milk Banking Association of North America (HMBANA) is a multidisciplinary group of health care providers that promotes, protects, and supports donor milk banking.

The 11 HMBANA member milk banks serve many infants who need milk because of medical conditions such as formula intolerance or feeding issues related to prematurity.

Benefits of Human Breast Milk
The HMBANA website shares some of the many benefits of breast milk in their position paper on the topic. Here is an excerpt:

Human milk is the standard food for infants and young children including premature and sick newborns with rare exceptions. (1,2) Human milk provides optimal nutrition, promotes normal growth and development, and reduces the risk of illness and disease. (3) The unique composition of human milk includes nutrients, enzymes, growth factors, hormones, and immunological and anti- inflammatory properties that have not been duplicated. (4) Exclusive breastfeeding for six months is recommended with introduction of complementary nutritionally adequate foods at about this time. Optimally breast milk remains in the diet for two years and beyond. (1) In situations where mothers' own milk is not available, provision of pasteurized, screened donor milk is the next best option particularly for ill, or high- risk infants. (5)

Read More of "The Value of Human Milk" at the HMBANA's website's Position Papers on Donor Milk Banking.

Sources Referenced:
1. WHO resolution 54.2, May 18, 2001.
2. American Academy of Pediatrics. Breastfeeding and the use of human milk. Pediatrics, 1997; 100: 1035-1038.
3. Picciano, M. F. (2001). Nutrient composition of human milk. Pediatric Clinics of North America, 48. 1, 53-67.
4. Hamosh, M. (2001). Bioactive factors in human milk. Pediatric Clinics of North America, 48. 1, 69-86.
5. WHO/UNICEF Joint statement: meeting on infant and young child feedings. (1980). J Nur Midwife, 25, 31.

Comforting Moment: The Immortal Infant Child

Author and poet James Henry Leigh Hunt (1784-1859) wrote these words in one of his prose pieces entitled, "The Deaths of Little Children."

Hunt's words offer some comfort to parents during a time of loss:

There are griefs so gentle in their very nature that it would be worse than false heroism to refuse them a tear.

Of this kind are the deaths of infants...

Those who have lost an infant
are never, as it were,
without an infant child.

Their other children grow up to manhood and womanhood, and suffer all the changes of mortality; but this one alone is rendered an immortal child; for death has arrested it with his kindly harshness, and blessed it into an eternal image of youth and innocence.

James Henry Leigh Hunt

Hunt helps parents who have lost an infant realize that it is alright to shed a tear.

He also helps parents to view the death of an infant as having been 'blessed into an eternal image of youth and innocence.' The child who dies as a newborn or an infant forever becomes the immortal child.

Note on the Image: The photographer writes that this Mother and Child sculpture is place at the entrance to Maternity Section in Grey's Hospital, Pietermaritzburg, South Africa.

Hunt, James Henry Leigh. "Deaths Of Little Children, The." Great Literature Online. 1997-2009.

Image: Adam Ciesielski. Mother and Child Sculpture. Royalty Free Use.

How to Respond to a NICU Parent when the Situation Looks Grim

One situation that everyone hopes no NICU parent needs to face is the death of their NICU baby. Unfortunately each year 1,000's of NICU Parents must face the difficult realization that their NICU baby will not be discharged to home; their because their NICU baby is dying.

Every year nearly 30,000 infants die in the United States, many of them are in the Neonatal Intensive Care units (NICU) and Intensive Care Nurseries (ICN).
When a NICU baby dies it is difficult for the family and also for the NICU Team. Knowing what to say to NICU parents when the situation looks grim is helpful for NICU providers, other family members and friends.

Expressing Wishes and Providing Support in Response to Futility
Dr. Timothy Quill and Colleagues looked at the issues of wishes in response to loss and unrealistic hopes as part of the article "I Wish Things Were Different": Expressing Wishes in Response to Loss, Futility, and Unrealistic Hopes.

They reiterated the fact that "physicians who care for patients encounter many powerful and painful emotions, including anger, sadness, fear, grief, loss, hopelessness, and blame." Furthermore they pointed out that situations evoking loss, guilt, or hopelessness are particularly hard for physicians to respond to with empathy.

Quill and colleagues pointed out that "offering wishes instead of apologies is a way to convey empathy for the parent coping with the loss. expressing wishes has the power and potential to humanize the medical encounter in some of its most challenging moments."

Offering wishes is particularly helpful "when the emotion is unrealistic hope, loss, futility, or grief that seems overwhelming or otherwise very difficult to address." These are the situations when physicians should consider joining with the patient and family in the expression of a wish that their circumstances were different.

Some of the phrases suggested (or variants) that may be helpful for physicians, NICU providers, family and friends to use and express wishes include:

• I wish things had turned out better for you.
• I wish the news had been different.
• This has been a terrible loss for you. I wish it hadn't turned out this way.
• This is so hard for you. Just when our hopes were so high, for this to happen. I wish it had been otherwise.
• I will work with you to find a way through this.

What Helped You?

Most NICU parents can remember the awful things that people say to them. These leave indelible etchings in our memories.

I would like to encourage visitors to comment on the things people said or the phrases have helped you during your time of loss.

Note: This is a modified version of the article Tips on Offering Comfort to a Grieving NICU Parent published on the Type-A Mom Site in February 2008.

More:
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 - 555.
Dyer K. Coping Strategies Used by Parents to Deal with their Child's Death. NICU Parent Support Blog.
Dyer K. Factors Important to Parents at the End of their Infant's Life. NICU Parent Support Blog.

Encouraging Message: Standing at Times of Challenge

In honor of Dr. Martin Luther King Jr. Birthday and the upcoming National Day of Service, today's inspiring quote comes from one of his inspiring sermons.

These words of Dr. Martin Luther King Jr. can serve as an encouraging message for NICU Parents:

The ultimate measure of
a man (or woman)
is not where
he (or she) stands
in moments of comfort,
but where
he (or she) stands
at times
of challenge and controversy.

Dr. Martin Luther King, Jr.

NICU Parents find themselves facing times of challenge, a true test of their measure. Many of us discover internal strengths that they many never have even known they possessed.

It is this new-found strength that sustains us through the NICU challenge and allows us to hang on, when things seem impossible.

Image: Vivek Chugu. Attached 2. Royalty Free Use.

NICU Parent Support CarePages

CarePages recognized that staying in touch with loved ones and friends while also managing a healthcare challenge can be difficult. But staying connected is a crucial component to getting, and staying well—for both patients and caregivers.

The NICU Parent Support CarePages allows you to stay connected with family, friends and colleagues before, during and after a healthcare challenge through a unique CarePages website.

CarePages provides free, private websites that make it easy to:

• Update family, friends and even colleagues all at once
• Share photos
• Collect supporting messages from loved ones and friends
• Learn more about healthcare issues
• Connect to others with similar concerns

CarePages unique service allows you to create a personal, private web page to help family and friends communicate when a loved one is facing a challenge at the beginning of life as a newborn.

A CarePage is a great way for NICU parents to easily keep their loved ones updated on their NICU baby's condition.

For More Information

• NICU Parent Support CarePages
  
• Squidoo Lens on CarePages