NICU Parent Support Blog

Pictures of Hope for NICU Parents

2010-08-10T10:15:00.000-07:00

I have know about resources for Bereavement Photography for dying babies and have written articles on this blog (see the collection at the end) and other places about resources available to grieving NICU parents. I hadn't know about photography resources for living NICU babies, which is what Pictures of Hope does.

According to their website, "Pictures of Hope is a charitable organization of professional photographers who provide complimentary, documentary-style, photography sessions to babies in the Neonatal Intensive Care Unit (NICU) and their families."

This charitable organization of professional photographers from the United States and Canada provide complimentary, documentary-style, photography sessions to babies in the Neonatal Intensive Care Unit (NICU) and their families.

Many of the photographers providing their services to the Pictures of Hope Foundations were themselves once NICU parents, so they understand what it is like to be in the NICU and are somehow about to find ways to take beautiful, hopeful NICU photographs.

Pictures of Hope is a wonderful resource for NICU Parents. You can find out more about their services and find a photographer by visiting their website

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

Dyer KA. Pictures of Hope: A Wonderful Resource for NICU Parents. Type-A Mom.

More on Bereavement Photography

Dyer KA. Creating Memories of a Dying Baby For Parents Through Photography. NICU Parent Support Site.
Dyer KA. Todd Hochberg - Touching Souls with Bereavement Photography. NICU Parent Support Site.
Dyer KA.Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show. NICU Parent Support Site.

Comforting Moment: Mysteries Revealed During Times of Struggle

2010-01-01T16:35:00.000-08:00

Even in the midst of a personal turmoil NICU Parents are often able to discover what they are truly grateful for in life as noted in this quote by author Sarah Ban Breathnach.

Ironically,
gratitude's most powerful mysteries
are often revealed
when we are struggling
in the midst
of personal turmoil.

Sarah Ban Breathnach

After our NICU experience, I discovered what was really important. For me it was family and friends who support you through challenging times and ultimately having a healthy child. I no longer take the health of my children for granted.

My children's health is something that even years later I continue to be grateful for on a daily basis.

Other Posts on Gratitude and being Grateful

Dyer KA. 2009. Having a Memorable Merry Christmas in the NICU. NICU Parent Support Blog.
Dyer KA. 2009.Celebrating Christmas in the NICU. NICU Parent Support Blog.
Dyer KA. 2009. Being Thankful at Thanksgiving in the NICU. NICU Parent Support Blog.

Dyer KA. 2007. 7/22 - Encouraging Message - Balancing on a Tight rope and Gratitude in the NICU?. NICU Parent Support Blog.

Image: René Blankenstein. Heart in Heart. Royalty Free Use.

Having a Memorable Merry Christmas in the NICU

2009-12-24T16:03:00.000-08:00

A new article on the Type-A Mom site, published just in time for Christmas. This article on Making it a Merry Christmas in the NICU, focuses on ways that some generous people and organizations are helping to make Christmas in the NICU a better time for NICU parents.

Three of the ways are crafty ways of coping with the NICU.

Knitting in the NICU at Christmas

One of my favorite crafty NICU Projects is Respiratory Therapist Glenna Muse's Knitting in the NICU.

For Christmas this year she created a collection of holiday inspired hats with Santa hats, Camo Santa hats, Christmas Tree hats, and Rudolf hats.

Read about the Thanksgiving NICU hats at the Thanksgiving is a Time to be Thankful post and more about her mission to bring hats to NICU babies at her blog, A Fridge Full of Food.

Afghans for NICU Babies

Another project that I liked, showing how NICU Parents are giving back is the Afghan for NICU Babies being organized by Kathryn from Vacaville, CA. She posted posted information about the 3rd Annual Afghans for NICU Babies for Christmas on the Crochetville Forum and has already starting the 4th Annual Afghans for NICU Babies for Christmas for Christmas 2010.

You can read more about the Afghans for NICU Babies on her post at the Crochetville Forum.

Christmas Poems

One of the more inspired NICU Christmas poems, "Jolly Old St. NICU" was written in 2005 by the Daddy of Benjamin, Casey, Danielle and Emily (in memory).

'Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

The full version of the poem, "Jolly Old St. NICU" can be found on the PreemieCare.org site.

Read even more ways that people are helping NICU Parents have a Merrier Christmas in the Making it a Merry Christmas in the NICU on Type-A Mom.

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

More on Holidays in the NICU

Dyer KA. 2009. Making it a Merry Christmas in the NICU. Type-A Mom.

Dyer KA. 2009. Tips for Celebrating and Coping with Christmas in the NICU. Type-A Mom.

Dyer KA. 2009. Giving Thanks Even when Thanksgiving is in the NICU. Type A Mom.
Dyer KA. 2009. Encouraging Message: The Full, True Thanksgiving Comes from the Heart. NICU Parent Support Blog.
Dyer KA. 2009. Being Thankful at Thanksgiving in the NICU. NICU Parent Support Blog.

Image: Glenna Muse. Knitting for the NICU: Christmas '09. Used with Permission.

Celebrating Christmas in the NICU

2009-12-20T10:13:00.000-08:00

Christmas in the NICU can be a very challenging time for NICU parents. Instead of being able to wrap gifts and decorate a tree, they are spending hours in the NICU worried about the health and well being of their new baby and trying to survive this major life challenge.

Understandably, it may be difficult to get into the holidays spirit and wish others a "Merry Christmas" or "Happy Holiday."

This quote from W. C. Jones, may be a way to help NICU parents shift their perspective to be better able to cope with Christmas in the NICU:

The joy of brightening other lives,
bearing each others' burdens,
easing others' loads and
supplanting empty hearts and lives with generous gifts
becomes for us the magic of Christmas.

I have always found that focusing on others who may be even in a worse situations when I am feeling blue about my own circumstances helps to lift my spirits.

This quote sounds like NICU parents, NICU staff and generous NICU volunteers all pulling together during the holidays to brighten each others' lives and ease each others' burdens. It is possible that despite the NICU surroundings, NICU parents can still create a festive atmosphere and share the holiday spirit. The recent article on Tips for Celebrating and Coping with Christmas in the NICU that I wrote for Type-A Mom provides a lot of helpful suggestions for coping with Christmas in the NICU.

NICU Parents need to remember that this is the first Christmas you get to celebrate with your new baby, even if it is in the NICU. There are many simple ways and simple things to make that holiday season special for your family will help you to create some happy memories of your baby's first (NICU) Christmas.

Wishing NICU Parents everywhere a happy holiday.

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

More on Holidays in the NICU

Dyer KA. 2009. Tips for Celebrating and Coping with Christmas in the NICU. Type-A Mom.

Dyer KA. 2009. Giving Thanks Even when Thanksgiving is in the NICU. Type A Mom.
Dyer KA. 2009. Encouraging Message: The Full, True Thanksgiving Comes from the Heart. NICU Parent Support Blog.
Dyer KA. 2009. Being Thankful at Thanksgiving in the NICU. NICU Parent Support Blog.

Image: Nick. Goodchild. Christmas Tree. Royalty Free Use.

More Gift Ideas for NICU Parents

2009-12-10T08:54:00.000-08:00

Christmas is a time of gift-giving. Even with a baby in the NICU, NICU parents would still like to be remembered at this holiday of goodwill.

To help family and friends make picking a gift less challenging, I've put together a list of different gift ideas for NICU Parents that are helpful suggestions for gifts whether given at Christmas or any other time of the year.

Some of these gift suggestions are for the parents, some for the baby, some the parents can use or gift to their own NICU baby.

A NICU Book - There are many helpful books for NICU Parents. Two of the classics are Parenting Your Premature Baby and Child and The Preemie Parents' Companion and for those interested in Kangaroo Care Kangaroo Care: The Best You Can Do to Help Your Preterm Infant.
A NICU Remembrance - the Violet Heart - The Violet Heart is the pin that I created following our NICU experience and has been featured in the The Violet Heart Pin - A Remembrance Pin to Honor a NICU Baby post.
A Custom Mom's Necklace or Bracelet - The Custom Mom's Necklace or Bracelet were featured in a recent post on Gift Ideas for NICU Parents - A Custom Necklace or Bracelet.
A NICU Journal or NICU Scrapbook - One of my favorite NICU specific journals is the Preemie Book of Memories. Another journal Letters To Your Child helps parents organize their thoughts in letters to your baby.
A Water Blessing Label - Water blessing labels are available from the Spirit of Water Website. I love the sentiment of turning water (or I.V. fluids) into liquid prayers.
A Zaky Hand - The Zaky Hand or Theraputic Positioning Pillow has been featured in several blog posts most recently The Zaky - A Comforting Hand for Your NICU Baby.

You can read even more about Gift Ideas for NICU Parents at the Type-A Mom article or the Squidoo article with Gift Ideas for NICU Parents.

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

More Gift Ideas

Dyer KA. 2009. Gift Ideas for NICU Parents and NICU Babies. NICU Parent Support Blog.
Dyer KA. 2009. Gift Ideas for NICU Parents - A Custom Necklace or Bracelet. NICU Parent Support Blog.

Dyer KA. 2009. Gift Ideas for NICU Parents. Squidoo.com.
Dyer KA. 2009. Gift Ideas for NICU Babies. Squidoo.com.

Image: Jeff Prieb. Christmas Present. Royalty Free Use.

Thanksgiving: A Time to Be Thankful, Even in the NICU

2009-11-25T18:30:00.000-08:00

As promised, a link to the new article from the Type A Mom site, on Giving Thanks Even when Thanksgiving is in the NICU.

In the article you will find a number of ways that generous people are helping NICU parents to be able to give thanks, even in the NICU. I've shared a couple already in previous posts this week.

Some of my favorites are the creative ways that people are helping NICU Parents to cope.

Earlier this month, The Preemie Clothes Guide posted Patterns and Ideas for Thanksgiving Preemie Blankets with links to different blanket patterns plus with suggestions for ways to modify the patterns to create special Thanksgiving preemie blankets.

Respiratory Therapist, Glenna Muse post of the 2009 Official Thanksgiving Turkey Hat was my inspiration to find the many ways that people are helping NICU parents to give thanks. She knits out of love for these little babies and shares why she is Thankful this Thanksgiving.

Those babies and these hats make me joyous. It's that simple. Every time I hold a three pound baby and every time I plop one of my silly little hats onto one of those tiny little heads I see God in their eyes and for those moments I am a mountain of faith that the world is a wondrous place and we are blessed to be here, all connected as one big family on Earth.

On this Thanksgiving I am thankful for all of our little miracles and that I am so lucky to play a part, through respiratory therapy and by knitting hats, in their first days in this life.

I will be posting a blog next year about Glenna Muse's efforts on Knitting in the NICU.

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

More

Dyer KA. 2009. Giving Thanks Even when Thanksgiving is in the NICU. Type A Mom.
Dyer KA. 2009. Encouraging Message: The Full, True Thanksgiving Comes from the Heart. NICU Parent Support Blog.
Dyer KA. 2009. Being Thankful at Thanksgiving in the NICU. NICU Parent Support Blog.

Image: Glenna Muse. 2009 Official NICU Thanksgiving Mascot Turkey Hat. Used with Permission.

Encouraging Message: The Full, True Thanksgiving Comes from the Heart

2009-11-25T06:42:00.000-08:00

I discovered this clip on YouTube when searching for Thanksgiving in the NICU. It is quite silly, but a lot of fun. Most of all it demonstrates a lot of heart on the part of these NICU Nurses staging their own version of the Macy's Thanksgiving Day Parade in the NICU.

A Thanksgiving Parade in the NICU

To me, these NICU Nurses embody the full, the true meaning of Thanksgiving, giving from thanks from the heart.

He who thanks but with the lips
Thanks but in part;
The full, the true Thanksgiving
Comes from the heart.

J.A. Shedd

I've got a new article awaiting publishing on the Type-A Mom site on "Giving Thanks Even when Thanksgiving is in the NICU."

I'll publish the link when it is live.

Being Thankful at Thanksgiving in the NICU

2009-11-21T10:33:00.000-08:00

Thanksgiving is a time for giving thanks and expressing gratitude. Sometimes it is difficult to imagine still being grateful when your baby is in the NICU.

We were lucky with our NICU daughter that the only holiday we spent was Easter (she was actually transferred to a higher level of care NICU on Easter Sunday).

This YouTube Clip from Q13 Fox News Seattle shows how one hospital was making Thanksgiving a bit brighter for NICU parents.

For this Thanksgiving I'd like to share a quote on gratitude which may help NICU parents facing the chaos and confusion in the NICU:

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity.... It turns problems into gifts, failures into success, the unexpected into perfect timing, and mistakes into important events.

Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.
Melodie Beattie

May you still be able to express gratitude this Thanksgiving, even if it is being spent in the NICU. I hope that you will find a sense of peace for today and a vision for tomorrow.

More:

Dyer KA. Encouraging Message - Balancing on a Tight rope and Gratitude in the NICU? NICU Parent Support Blog.

Gift Ideas for NICU Parents - A Custom Necklace or Bracelet

2009-11-19T08:42:00.000-08:00

One special way of remembering NICU parents, particular a NICU mother is to have a custom Necklace or Bracelet created for her with the NICU baby's name on it. You can even have the baby's name added as part of a family necklace.

One of my favorite places to find custom handmade jewelry items is on Etsy. I have found many beautiful necklaces and bracelets offered by different talented jewelry artists that can be personalized with your baby's name and information.

This necklace featured from BabyCharmed is one that I ordered myself with my both of daughter's names as a beautiful custom mom's necklace.

Some of my favorites include (listed alphabetically):

These talented jewelry artists offer a variety of beautifully created handmade products. Just look around on Etsy until you find one that seems right as a NICU parent gift.

About Etsy

Etsy is the leading online website that allows Etsy hundreds of thousands of sellers to sell their handmade products directly to buyers.

The Etsy sellers featured all offer different types of necklaces and bracelets that can be personalized with your baby's name and information to become a reminder of your child when he or she is not with you.

More Gift Ideas
Dyer KA. 2009. Gift Ideas for NICU Parents and NICU Babies. NICU Parent Support Blog.
Dyer KA. 2009. Gift Ideas for NICU Parents. Squidoo.com.
Dyer KA. 2009. Gift Ideas for NICU Babies. Squidoo.com.

Image: BabyCharmed. Used With Permission.

November 17th – Unite, Fight and Write to Raise Awareness about Premature Birth

2009-11-17T06:06:00.000-08:00

Each year nearly 13 million babies worldwide are born prematurely or born at less than 37 full weeks gestation. Of these more then one million die. More than one million infants die because they are born too soon.

In the past 25 years the rate of preterm birth in the United States has increased 36 percent. One out of eight babies in the U.S. are born prematurely.

On November 17th, Bloggers Unite and the March of Dimes are encouraging bloggers to unite, fight and write blog posts during Prematurity Awareness Month to increase awareness of prematurity around the world.

To learn more about prematurity, find out what you can do and give to the March of Dimes, visit their About Prematurity page.

More about the Fight for Preemies

Dyer KA. Bloggers Unite to Fight for Preemies on Nov. 17th. NICU Parent Support Blog.
Dyer KA. 2009. Coming This November...Prematurity Awareness Month for the March of Dimes. NICU Parent Support Blog.

More on the March of Dimes

Dyer KA. 2009. NICU Family Support from the March of Dimes. NICU Parent Support Blog.
Dyer KA. 2009. March of Dimes Supporting NICU Families with NICU Family Support. Type-A Mom.

Kangaroo Care in the NICU Featured on Grey's Anatomy

2009-11-07T13:50:00.000-08:00

The most recent episode of Grey's Anatomy (November 5) featured a story line about using Kangaroo Care in the NICU. Resident tough-guy Alex Karev is on a pediatric rotation and assigned to care for a fragile premature baby.

In this short clip new doctor Reed (Nora Zehetner) walks in on Alex Karev (Justin Chambers) who is still holding a premature baby in his arms providing Kangaroo Care. Their scene ends at 2:00.

You can read more about Kangaroo Care in the NICU at the article on Type-A Mom or in the resources included below.

Another good resource on Kangaroo Care is one of the classic, comprehensive books on the topic by Susan Ludington-Hoe, Kangaroo Care: The Best You Can Do to Help Your Preterm Infant that is available on Amazon.

A related article is on the Type-A Mom site under the NICU section of Mom Stages.

More on Kangaroo Care

March of Dimes. August 2009. Parenting in the NICU: Holding Your Baby Close: Kangaroo Care.

Cleveland Clinic. Kangaroo Care. The Cleveland Clinic Foundation.

Understanding and Parenting Your Preemie: The Social Environment. Meriter Health.

Krisanne Larimer. 1999. Kangaroo Care Benefits. Prematurity.org.

Virtual Human Milk Collection Campaign

2009-11-04T14:41:00.000-08:00

During the month of November, or Prematurity Awareness Month, Medela today will be hosting a Virtual Human Milk (breastmilk) Collection Campaign. To participate in the Virtual Human Milk campaign, visit the Medela's Preemie Awareness Program website to register and vote for your favorite NICU.

According to the press release, the four NICU's that obtain the most votes will receive at least $5,000 each worth of Medela products or education services for their facility. One NICU will be selected one in each of four geographic regions. Medela has pledged to donate $20,000 in Neonatal Human Milk Support Products.

The campaign is being launched to honor the March of Dimes' National Prematurity Awareness Month and the thousands of dedicated Neonatal healthcare professionals nationwide.

In addition for voting for your favorite NICU, you can support the Medela company's efforts by purchasing Medela Baby Productson Amazon.

More about the Virtual Human Milk Collection Campaign

Medela. November 2, 2009. Medela Recognizes National Prematurity Awareness Month With Virtual Human Milk Collection Campaign. Press Release.
Medela. November 2009. Preemie Awareness Month Program – Medela.

Gift Ideas for NICU Parents and NICU Babies

2009-10-18T14:20:00.001-07:00

I've been working on two separate pages with gift suggestions for NICU Parents and also for NICU babies.

I realized that many friends and family may be unsure what to do about getting a gift for parents whose baby is in the NICU. In retrospect I realized that we'd had a lot of family and friends waiting to see what was going to happen instead of sending a gift.

Unfortunately, not sending a gift to NICU parents may be sending the wrong message to the parents.

I have to agree with the advise of former NICU Mother, Kelby Carr

Don't let the fact that a baby is premature or in the NICU stop you from buying a gift, either for the baby of a gift for the mom of a NICU baby. No matter how perilous the situation is, the parents and baby will appreciate a gift. It could be the sliver of joyfulness they really badly need.

My advise would be to send a gift to the NICU Parent or NICU baby, to show your love and support.

Gift Ideas for NICU Parents and NICU Babies
The Gifts for NICU Parents page provides a list of suggestions with ideas for NICU parents from the practical to actual presents. Some cost money, other are just a gift of your time.

The Gifts for NICU Babies page provides a list of suggestions with ideas for useful gifts for NICU babies. It also includes a list with ideas for putting together a NICU Basket of gifts.

I'll be working on featuring many of the wonderful resources that I found which would make gifts for NICU babies and their parents.

Image: Adapted from Chobi Capeta's Heart Bag. Royalty Free Use.

Creatively Coping: Knit a Heart Pin or Pins

2009-10-04T12:58:00.000-07:00

I discovered a very cute and easy pattern available online for knitting little hearts.

I realize that knitting little hearts would be a great way making quick thank you gifts for NICU nurses.

The hearts could be turned into pins, used as decorations on packages or even a mobile for your NICU baby. Keeping idle hands busy and knitting is one of the ways that a NICU parent (or grandparent) can TAKE CARE to get through the NICU adventure.

This pattern is a really easy way to use up yarn leftovers as can be seen in this blog post on closely knit, love letter in yarn.

The Heart Pin pattern is available from Hannah Fettig of knitbot. It is one of the patterns available in her book, Closely Knit: Handmade Gifts For The Ones You Love, her beautiful collection of handmade gifts for your loved ones.

Pattern: Hannah Fetting. Heart Pin Pattern From Closely Knit. Knitbot.

Image: Adapted from Marieke Kuijjer. Knitted Heart. Creative Commons License.

Bloggers Unite to Fight for Preemies on Nov. 17th

2009-10-03T10:11:00.000-07:00

On November 17, 2009 you can help raise awareness about premature births by blogging about the March of Dimes Fight for Preemies.

Join Bloggers Unite and the March of Dimes in November for Prematurity Awareness Month® to spread the word and raise awareness about their fight against premature births.

Before November 17th
Before the November 17th "Blog-in" you can help spread the word in several ways.

Send email messages to your family and friends.
Tweet about the March of Dimes (@marchofdimes) on Twitter.
Follow the March of Dimes on Facebook and post messages.
Put a March of Dimes badge and/or a banner on your blog or website.
Put a Bloggers Unite badge on your website.
Sign up for the Bloggers Unite, Fight for Preemies event.

Plan to Blog on November 17th
November 17 is the day that was chosen The March of Dimes to encourage bloggers to fight for preemies. On November 17th, bloggers are asked to post a blog on November 17th for "a baby you love and to help others."

More on Bloggers Unite
Bloggers Unite is an attempt to harness the power of the blogosphere to make the world a better place.

It is their hope that by asking bloggers to write about a particular subject on 1 day of the month, a single voice can be joined with thousands to help make a difference; from raising awareness for cancer, to an effort to better education systems or supporting 3rd world countries.

More Articles on the March of Dimes

Dyer KA. 2009. NICU Family Support from the March of Dimes. NICU Parent Support Blog.
Dyer KA. 2009. Coming This November...Prematurity Awareness Month for the March of Dimes. NICU Parent Support Blog.
Dyer KA. 2009. March of Dimes Supporting NICU Families with NICU Family Support. Type-A Mom.

Coming This November...Prematurity Awareness Month for the March of Dimes

2009-09-30T21:39:00.000-07:00

Every year, 20 million babies are born too soon, too small and very sick. Half a million premature babies are born each year in the United States.

November is Prematurity Awareness Month for the March of Dimes. During November, the March of Dimes works on raising awareness about premature births in the hopes of saving more babies from being born prematurely.

Hear about the work that the March of Dimes is doing to prevent birth defects, premature birth, and infant mortality from NICU Physician (Neonatologist) and former NICU Parent, Dr. Jalie-Marti:

More on Prematurity Awareness Month
The March of Dimes offers information on ways to learn, do and give to show your support for the March of Dimes' Prematurity Awareness Month.

Things that you can do:

Raise a voice and join the MOD National Advocacy Network
Follow the March of Dimes on

Post a Badge or a Banner like the one below on your Blog to show support.
Click on the image below for more information from the March of Dimes.

More Articles on the March of Dimes

Dyer KA. 2009. NICU Family Support from the March of Dimes. NICU Parent Support Blog.
Dyer KA. 2009. March of Dimes Supporting NICU Families with NICU Family Support. Type-A Mom.

Ways to Help NICU Parents After the NICU

2009-09-20T13:51:00.000-07:00

One of the biggest problems for NICU parents is starting to processes the experience and cope with their NICU experience after they have left the NICU. Dr. Holditch-Davis, professor at Duke University School of Nursing noted in a recent NY Times article,

It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore.

Once parents are home from the NICU and the daily activities become more routine, this is the time when many parents finally start processing their NICU experience. Researchers are starting to recognize parents with depression, anxiety and PTSD after the NICU, as noted in the blog post, NICU Admission Puts Parents at Risk for PTSD.

Helping NICU Parents After the NICU

There are several ways to help NICU parents after the NICU to reduce their risks of developing problems after a NICU admission.

Education: Parents
Education: Physicians and Health Care Providers
Identifying Symptoms
Support for Parents after the NICU

Education: Parents

Part of my hope for the NICU Parent Support Site is that by writing about different topics and different issues facing NICU parents, they will understand more about the normal response NICU parents can face when dealing with the many losses that result from a NICU admission.

Education: Physicians and Health Care Providers As noted in the blog post on After the NICU: Aftercare for NICU Parents, "There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up."

The key here is educating all of the different health care providers who see NICU parents in follow up to be able to identify those parents who may be at risk by checking to see that the parents are doing well after they are home from the NICU.

Identifying Symptoms
Researcher and former NICU Parent Dr. Michael Hynan designed a helpful screening tool for determining NICU parents at risk. The Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) can be easily administered. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

If I was able to do so, I would see that all NICU parents take a PPQ (or similar) screening questionnaire to make sure they are doing well once home from the NICU.

Support for Parents after the NICU - Hospitals
Support for NICU parents can vary greatly depending on the hospital and depending on the nature of their newborn's health. Some hospitals offer good programs after the NICU with support groups, education and follow up. Others (like our hospitals) may be focusing on just getting parents through the initial ordeal.

Often the follow up ball is dropped by the hospitals, because parents are no longer in the NICU and their regular health care providers don't know, or don't think to make sure they are still doing o.k. several weeks or months after the NICU.

Support for Parents after the NICU - March of DimesSome hospitals have a NICU Family Support Specialist from the March of Dimes to help offer NICU parents support and help in navigating the confusing NICU. Their NICU Family Support website offers information, resources and online communities 24/7 online.
Support for Parents after the NICU - OnlineIn addition to the March of Dimes, Share Your Story, there are other online resources available for NICU Parents. These are the main ones that I've found below.

If you know of others, please add them in the comments section and I can add them to our list of recommended forums.

Resources:

Dyer KA. 2009. After the NICU: Aftercare for NICU Parents. NICU Parent Support Blog.

Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.
Definition of aftercare. 2007. In Merriam-Webster Online Dictionary.
Dyer KA. 2007. Reflections on NICU Aftercare: Who should following up on NICU parents? NICU Parent Support Blog.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Image: Modified Microsoft Clipart.

The Body Remembers What the Mind Does Not: A NICU Anniversary

2009-09-20T12:20:00.000-07:00

I have always known that grief is a total response to a loss. Grief impacts the mind, body and spirit. What I was surprised to discover several years ago myself that the body remembers grief even when the mind may not.

Radiating Back Pain
Two years ago I experienced an episode of excruciating back pain. I'd been pushing myself in a physical education class (stair climbing) and a couple of days later turned the wrong way in bed and experienced pain radiating down my back into my leg. The pain felt like sciatic pain.

I made it in to teach my class and was able to stand through the lecture then came home to crash out on the couch and fell asleep for a nap—BIG mistake. I really had problems getting back up off of the couch and more problems straightening out to move around. The pain was bad enough to call my husband home from work to help watch the girls.

I slept a very restless night, still uncomfortable, still in pain. Even though I was uncomfortable, I decided it wasn't worth a trip to the Emergency Room and decited to let everyone else sleep through the night rather than waking them up. I kept hoping things would be better in the morning.

With a bit of home treatments and over the counter medications, in a couple of days my back pain started improving. Once the pain started subsiding, I was able to take a look at the calendar and made a rather startling discovery...

My Body Remembers Our NICU Time
I was amazed when looked at the date for the night I had been unable to sleep because of the pain and elected to let everyone else sleep through the night. The date of my excruciating pain was 5 years to the night that my youngest had been intubated while in the NICU for breathing difficulties.

When my daughter was intubated, I was still in the hospital recovering from a C-section, so I heard the news late in the evening. I elected to let my husband and mother sleep through the night, figuring that they couldn't do anything more about her being intubated, trusting that things would work out, and knowing that I could always call if things got worse. I kept hoping things would be better in the morning.

It was probably one of the most helpless feelings that I experienced as a mother and as a physician. My daughter's care and safety was in the hands of others. There was nothing else that I could do.

I had also felt helpless days before when she had been moved into the NICU hours after birth because I was unable to move initially of the spinal anesthesia (one of my greatest fears about having a C-section).

Even though I was unaware of the date five years later, my body remembered this other time when I had been in emotional and physical pain and kept hoping things would be better in the morning.

Body Healing from Loss
This quote by Mel Colgrove describes how the body heals from loss.

When an emotional injury takes place, the body begins a process as natural as the healing of a physical wound. Let the process happen.
Trust that nature will do the healing.

Mel Colgrove

It is interesting to note that five years later, my body was still holding on to the traumatic memory of my daughter's time in the NICU even though my mind was not.

Was the Back Pain an Anniversary Response?
The National Center for Post Traumatic Stress Disorder defines an Anniversary Reaction as "an increase in distress around the anniversary of a traumatic event is commonly known as an 'anniversary reaction.' This reaction can range from feeling mildly upset for a day or two to a more extreme reaction in which an individual experiences significant psychiatric or medical symptoms."

What is interesting is that "on the anniversary of traumatic events, some people may find that they experience an increase in distressing memories of the event. These memories may be triggered by reminders, but memories may also seem to come from out of the blue while at work, home, or doing recreational activities." I wasn't having a distressing memory in my mind, I was experiencing the distressing memory in my body.

It is likely based on these definitions that the back pain episode I experienced five years later to the date was an anniversary response, that my body remembered, even though my mind did not.

The Body Remembers
Babette Rothschild, MSW, LCSW, is author of The Body Remembers: The Psychophysiology of Trauma and Trauma Treatment. In her book she looks at current thought that people who have been traumatized hold an implicit memory of traumatic events in their brains and bodies.

Ms Rothschilds has developed a method for treating those who have lived through a traumatic event. She believes that traumatic events exact a toll on the body as well as the mind. Her book and her practice which focuses on Somatic (Body) Therapy.

According to her publisher, this book illuminates the psychophysiology of trauma, "shining a bright light on the impact of trauma on the body and the phenomenon of somatic memory."

The Memory Lives On
Thankfully the anniversary of my daughter's NICU adventure for the past two years has gone by uneventfully, but the memory lives on within the posts of this blog.

Resources:
Dyer KA. 2008. What is an Anniversary Response or Anniversary Reaction? Grief, Loss & Transitions Blog.
Dyer KA. 2007. Anniversary Reaction - When Remembering Isn't Always a Happy Occasion. Squidoo.com.
Hamblen J, Friedman M, Schnurr P. Anniversary Reactions. National Center for Post Traumatic Stress Disorder.
H.A.N.D. 2008. Understanding the Grief Process: The Grief Process. Helping After Neonatal Death.

Image: Modified Microsoft Clipart.

Lullaby Link - A Resource for Lullabies

2009-09-17T15:22:00.000-07:00

Lullaby Link is a website developed by husband and wife, Tim and Amy Wilson. Lullaby Link provides lullabies, lullaby lyrics and other resources to help support parents in bringing music into the home.

Website Resources
At Lullaby Link you will find lyrics, melodies and "how to" videos, easy songs, words for the classic lullabies, a downloadable Lyrics Ebook, ideas for non-singers and a "Listening Center."

Music Resource
In addition to the resources at Lullaby Link, Amy Robbins-Wilson composed lullabies and prayers for her son. These were transformed into "the CD I wish I'd had during my first year of motherhood," The Divine Hours of Motherhood: Lullabies and Prayers for Mothers and Babies.

Here collection of comforting prayers and soothing lullabies includes songs such as: Angels Gather Here, Angels Watch Over My Baby, Bless this Child, Vespers, A Nighttime Blessing, Vigils and Child of Moonlight.

The Divine Hours of Motherhood can be ordered as a CD or downloaded as an MP3 Album.

More Suggestions for Using Lullabies in the NICU

Amy's son Clayton was in the NICU. She shares her insights on using sound and song on their page on NICU Music Ideas:

No matter how your baby begins his earthly life, you can use sound and music to bond with them. Even if your baby is too small to be held, there is healing for them in your voice and they will be thrilled every time they hear you.

Amy offers some great ways to use music with premature babies:

Hum. This is especially effective if you and your baby are skin to skin and heart to heart on your chest.
Sing them a lullaby.
Sing their name to them softly over and over.

For more on using Music in the NICU, follow the links below.

More on Using Music in the NICU
St. Elizabeth's Medical Center. 2009. NICU Music Therapy. Neonatal Intensive Care Music Therapy Services. Pediatrics.
Wilson A. 2009. NICU Music Ideas. Lullaby Link.
Dyer KA. 2009. Coping with the NICU: Got to get to you. Got to see this through. Wires by Athlete. NICU Parent Support Blog.
Dyer KA. 2007. Music Used for NICU Newborns in Studies & Other Selections. NICU Parent Support Blog.
Dyer KA. 2007. Music’s Ability to Soothe and Nurture the NICU Baby. NICU Parent Support Blog.
Engel J. 2009. NICU Music Therapy: Music Therapy in the Neonatal Intensive Care Unit. Engel Music Therapy Services.
Engel J. 2009. NICU MT Services: Music Therapy with Infants in the Neonatal Intensive Care Unit. Engel Music Therapy Services.
Pediatric Music Therapy. Music Therapy in Neonatal Intensive Care. Florida Hospital for Children.

Coping with the NICU with Music: Wires by Athlete

2009-09-15T18:21:00.000-07:00

This amazing and hauntingly accurate song about hope and coping with the NICU was written by Joel Pott, the lead singer of the British group Athlete.

You got wires, going in.
You got wires, coming out of your skin.
You got tears, making tracks.
I got tears, that are scared of the facts.

The song was written about his second child Myla, who as a newborn was rushed to Intensive Care after being born prematurely.

Got to get to you.
Got to see this through.

This version shown here is from Live on Jools Holland in 2005.

More about Wires
According to Joel Pott's Wikipedia page, his daughter Myla, born prematurely is now healthy. In 2006, Athlete won the Ivor Novello Award for "Best Contemporary Song" for "Wires."

I found out about this song through a thread on the Preemie Support Group at Inspire.com from the thread on "Songs that remind you of the NICU/PICU."

Official "Wires" Video
You can view the official "Wires" Video in several places on YouTube, here and here. In the official version you get a sense of feeling the "Wires" and a better feeling of the personal anguish felt by NICU parents. This version has had the "Embedding disabled by request."

You can download the song "Wires"(Radio Edit) as an MP3 song.

After the NICU: Aftercare for NICU Parents

2009-09-13T15:01:00.000-07:00

The day has finally arrive and you get the news you have been waiting for days, weeks or months. You finally get to take your NICU baby home.

This moment is met with great joy combined with a bit of fear and dread, since suddenly now you will be on your own with your NICU baby at home.

After the NICU
Follow up or Aftercare is monitoring the health and well being of the NICU family after the NICU admission. According to the Merriam-Webster Online Dictionary, Aftercare is

...the care, treatment, help, or supervision given to persons discharged from an institution (as a hospital)

What I didn't realize at the time and did not discover until I was researching for the articles for Neonatal Nework is that NICU Parents are at an increased risk for experiencing a variety of disorders and responses...after the NICU.

NICU Parents are at risk for experiencing depression, post partum depression, post traumatic stress disorder (PTSD), anxiety disorders and a prolonged grief response.

Concerns about Follow Up
Since finding out the NICU parents are at risk for developing several different conditions and reflecting on our own NICU follow up, I have been very concerned about the aftercare (or lack of aftercare) that NICU parents receive following a NICU admission. As noted in the recent article on PTSD and the NICU by New York Times author, Laurie Tarken:

Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.

Research has been done demonstrating that organized family support program could aid in maintaining family stability during the newborn’s intensive care hospitalization. Other studies have shown that new NICU mothers paired with former NICU parents had less anxiety and depression, and more social support, than mothers who did not have a NICU parent 'buddy.'

So what can be done about providing aftercare for NICU parents?

Aftercare for NICU Parents
From my perspective as a primary care physician and former NICU parent aftercare for NICU parents should be provided by any professional seeing a parent or a baby in follow up from the NICU hospitalization.

There are many different physicians and other health care providers who might see NICU babies and NICU Parents in follow up. The health care providers include pediatricians, obstetricians and gynecologists, urgent care physicians, emergency room physicians, internists (adult medicine), nurse practitioners, nurse educators, physician assistants, social workers, mental health counselors and clergy.

The key is getting the word out to the right groups. As I wrote in the NICU article that was published:

NICU physicians and nurses may be aware of the research supporting preventive or postnatal intervention, but they generally are not the ones following up with the family. Conversely, the obstetricians/gynecologists, pediatricians, family practitioners and nurse practitioners who are providing the follow-up appointments may not be aware of these NICU studies.

Those who may see NICU parents in follow up, the the obstetricians/gynecologists, pediatricians, internists, family practitioners and nurse practitioners need to know about the risks that NICU parents are at for different.

Articles like the recent one in the New York Times will go a long way in helping get the word out to main stream, so NICU parents and friends of NICU parents will be more likely to know about the risks that can occur, after the NICU.

I'll be looking at other ways to help NICU parents in a later post.

Resources:
Dyer KA. 2009. When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms. NICU Parent Support Blog.
Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.
Definition of aftercare. 2007. In Merriam-Webster Online Dictionary.
Dyer KA. 2007. Reflections on NICU Aftercare: Who should following up on NICU parents? NICU Parent Support Blog.
Dyer K. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. 24: 27-40.
Hynan MT. 2001. Assisting the trembling hands that hold the tiny hands: Helping high-risk parents improve neonatal outcomes. Paper presented at the annual meeting of the National Perinatal Association, University of Wisconsin Milwaukee. December 2001.
Hynan MT. Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ).

Image: Home-Sweet-Home Glass Plaque. Available on Amazon.

Encouraging Message: Live Each Moment Anew

2009-09-12T21:42:00.000-07:00

Part of the reason for including encouraging messages as part of the NICU Parent Support Blog is because I have long been a believer in the power of words to help during difficult times. Encouraging words can be very helpful during challenging times. Words can be helpful in helping one cope with life's difficulties, because the words help us to shift and focus on something else that is positive.

British philosopher, Paul Brunton, who dedicating his life to an inward and spiritual quest offers these encouraging words about living each moment anew.

Every morning
is like a new reincarnation
into this world.

Let us take it then
for what it is
and live each moment anew.

Paul Brunton

Brunton's words of encouragement and hope can be very helpful for NICU parents struggling to make it through each day in the NICU, trying to put behind the bad days and focus on the good ones. This quote about remembering to live each moment, each new dawn anew can be helpful in getting through the challenging days and waking up to face the new day with a new start.

About Gratefulness.org
Gratefulness.org is a network for grateful living. They are an international nonprofit organization provides resources for living in the gentle power of gratefulness, which restores courage, reconciles relationships, and heals our Earth.

If you want a dose of gratefulness in your life, I would encourage you to sign up for their Word for the Day that comes daily via email. I have received their messages of encouragement and hope for years.

Image: Andris Kovács. Lake Sunrise. Royalty Free Use.

When to Seek More Help: How NICU Parents Can Recognize PTSD Symptoms

2009-09-10T18:19:00.000-07:00

NICU Admissions are a stressful time and even a terrifying experience for all of those involved. Trying to figure out how to manage in a the strange NICU world can be overwhelming for many NICU Parents.

Many parents are able to cope with the additional NICU stressors with a little help, by doing things like becoming an empowered NICU Parent, finding healthy strategies for dealing with NICU stresses and discovering ways of interacting with their NICU newborn.

Some parents continue to find the NICU experience to be an overwhelming one. As noted by former NICU Parent, Kim Roscoe:

The NICU was very much like a war zone, with the alarms, the noises, and death and sickness. You don’t know who’s going to die and who will go home healthy.

NICU experiences can even continue to haunt them once they have returned home with recurring flashbacks and a hypervigilant state. Researchers are slowing realizing (and documenting) that having a child in the NICU puts parents at risk for developing PTSD or Post Traumatic Stress Disorder.

In a recent article by Laurie Tarkan for the New York Times, she summarizes three different types of traumas that NICU parents experience with put them at risk for developing Post Traumatic Stress Syndrome (PTSD):

Having an early, often unexpected delivery.
Watching your own infant and witnessing other infants enduring traumatic medical procedures and life-threatening events.
Receiving serial bad news.

The NICU adventure is more like the war zone and unlike other single traumas (like an accident), because the bad news can keep coming again and again, re-traumatizing parents every time there is a setback in their NICU baby's health.

Recognizing PTSD (Post Traumatic Stress Disorder)
The National Center for PTSD reports that there are four types of symptoms for PTSD: reliving the event, avoidance, numbing, and feeling keyed up.

Reliving the event (also called re-experiencing symptoms) - Bad memories of the traumatic event can come back at any time resulting in feeling the same fear and horror you did when the event took place. Nightmares and flashbacks may also occur. A flashback is a feeling like you are living through the event again.
Avoiding situations that remind you of the event - Avoiding situations or people that trigger memories of the traumatic event, even avoiding talking or thinking about the event.
Feeling numb - Find it hard to express your feelings.
Feeling keyed up (also called hyperarousal) - Feeling jittery, or always alert and on the lookout for danger.

For even more information on PTSD symptoms check the National Center for PTSD Article or the one from the Mayo Clinic.

When to Advise Seeking More Help
Any parent feeling or showing any of the following:

Prolonged agitation or anxiety
Depression or extreme hopelessness
Impaired daily activities or job function
Suicidal thoughts or ideas
Extreme physiologic or psychological reactions
Substantial guilt
Substance abuse either alcohol or drug use
Psychotic states
Uncontrolled rage
Prolonged, inhibited or absent grieving

Any NICU parent experiencing signs of PTSD or the other concerning signs above for more than a month should seek out their health care provider for further evaluation to help get your life back under control.

Screening for PTSD
A helpful screening tool for determining NICU parents at risk is the Perinatal Posttraumatic Stress Disorder (PTSD) Questionnaire (PPQ) designed by researcher and former NICU Parent Dr. Michael Hynan. This tool can help determine if the NICU Parents might need some additional support once the family is discharged from the hospital.

Resources
Dyer KA. 2009. NICU Admission Puts Parents at Risk for PTSD. NICU Parent Support Blog.
National Center for PTSD. What is PTSD? National Center for PTSD.
Mayo Clinic Staff. 2009. Post-traumatic stress disorder (PTSD) Symptoms. Mayo Clinic.
Tarkan L. 2009. For Parents on NICU, Trauma May Last. New York Times.

Images:
Chris Sternal-Johnson. The NICU Pod. Creative Commons License.
Sanja Gjenero. Helping Hands. Royalty Free Use.

Comforting Message: A Prayer from the NICU

2009-09-06T21:42:00.000-07:00

Tara, a former NICU parent contacted me after reading the NICU Parent Support Blog and asked if I would be interested in sharing the prayer poem that she wrote about the N.I.C.U.

She wrote the poem for a friend when her friend's child was in the NICU several years ago. She had already lived through her own experience of having twins in the NICU.

A Prayer from the N.I.C.U.
by Tara Roper

Dear God,
I have a request to make.
Just a moment of your time it will take.
You see, my parents, are heartbroken and sad,
and they have prayed to you with all they had.

Could you just hug them and remind them you care,
as they are wishing I was at home, not here.
This time is confusing, unlike how they pictured it would be,
But I want them to know that you take care of me.

Although I am sleeping in this little bed,
and I am often too tired to raise my little head,
please remind them that I know they did their very best.
And that at night I am protected as I sleep upon your chest.

They think I am so lonely when they are away,
and if I could tell them, I would say

I know this is hard, and God understands,
But just know He has never let go of my hand.
He is always with me, like He is with you,
and all this has a purpose too.

And God, while I am in this temporary N.I.C.U. home,
I just want them to know I have never been alone.

Source: Roper T. A Prayer for the N.I.C.U. FaithWriters.com. Reprinted with Permission.

About the Author
Tara Roper is a 34 year old mom of three in the Atlanta area. Her daughter Caroline is five years old , and her twins, Maggie and Jacob are almost three years old. She and her husband John have lived in the Atlanta area and Boston area in the last ten years. Tara has been the editor of local parenting newsletters and writes on Faithwriters.com. Tara is the Assistant Coordinator for The Women's League Inc. for Northstar Church. Tara is currently taking time off from being a special education teacher to be at home with her children.

You can contact her through Faith Writers.

More Prayers

Dyer KA. 2008. The Preemie Prayer. NICU Parent Support Blog.
Dyer KA. 2007. Creatively Coping: Write a Prayer Poem. NICU Parent Support Blog.
Dyer KA. 2007. Creatively Coping: Preemie Prayer Pockets. NICU Parent Support Blog.
Dyer KA. 2007. Preemie Prayer for Sylas Christopher, the Remaining Morrison Sextuplet & Siblings. NICU Parent Support Blog.

Image: Aparecida B. Souza. Little Angel. Royalty Free Use.

NICU Parent Support Blog a Best Blog for Neonatal Nurses

2009-08-04T11:11:00.000-07:00

I am pleased to announce that the NICU Parent Support Blog was named as one of the 50 Best Blogs for Neonatal Nurses. The distinction was awarded by NursingDegree.net, an online resource for nurses and nurses to be.

These 50 blogs were selected to help neonatal nurses with emotional, motivational, and informational support. The NICU Parent Support Blog is under their NICU section as a blog written specifically about the Neonatal Intensive Care Unit. We are the only NICU blog included on the NICU list that is not written by a NICU nurse. For that distinction, I am doubly honored.

We were notified yesterday about the news.

We posted an article that we thought you and your readers might be interested in having a look at, "50 Best Blogs for Neonatal Nurses." I am happy to let you know that your site has been included in this list.

Thanks for your time!

Amber Johnson
NursingDegree.net

I am also very please that the NICU Parent Support Blog ranked higher on the 50 Best Blogs for Neonatal Nurses list than the March of Dimes, Share Your Story section.

Thank you to the Nursing Degree.net site for this honor.