Sunday, October 18, 2009

Gift Ideas for NICU Parents and NICU Babies

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.

Sunday, October 4, 2009

Creatively Coping: Knit a Heart Pin or Pins

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.

Saturday, October 3, 2009

Bloggers Unite to Fight for Preemies on Nov. 17th

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.

Wednesday, September 30, 2009

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

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.

Sunday, September 20, 2009

Ways to Help NICU Parents After the NICU

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

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.

Thursday, September 17, 2009

Lullaby Link - A Resource for Lullabies

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:

  1. Hum. This is especially effective if you and your baby are skin to skin and heart to heart on your chest.
  2. Sing them a lullaby.
  3. 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.

Tuesday, September 15, 2009

Coping with the NICU with Music: Wires by Athlete

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.