Showing posts with label NICU Parents. Show all posts
Showing posts with label NICU Parents. Show all posts

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, 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.

Saturday, September 12, 2009

Encouraging Message: Live Each Moment Anew

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.

Sunday, September 6, 2009

Comforting Message: A Prayer from the NICU

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.

Monday, July 27, 2009

NICU Admission Puts Parents at Risk for PTSD

Former NICU Parent and NICU Researcher Dr. Michael Hynan has been one of the researchers looking at the possibility PTSD (Post Traumatic Stress Disorder) in parents after the NICU. I wondered about the possibility of NICU admissions putting parents at risk after our NICU adventure in 2002, having studied PTSD in other settings.

In the article "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network in 2005, I expressed some of my thoughts based on the research up to that time:
Hospitalization of a child can be a traumatic stressor for the family. NICU parents are at increased risk of having impaired relationships with the infant along with developing depression and anxiety-related disorders, including post traumatic stress disorder. The ability of parents to cope with the NICU crisis and its aftermath can directly affect the infant’s development.

Parental stress in the NICU has a short-term impact on the establishment of the parent-child relationship, with potential repercussions on the child’s long-term development. Many articles document the psychological, medical, and economic benefits of considering the emotional needs of parents with children in the NICU or PICU.

(See the Neonatal Article for full citations)
Thankfully the research seems to be supporting what parents have known all along about the stressful and traumatic nature of having a newborn in the NICU.

New Findings Acute Stress, PTSD and the NICU
An article published in Psychosomatics in Spring 2009 looked at "The relationship between acute stress disorder and post traumatic stress disorder in the neonatal intensive care unit." The research conducted by physicians and researcher at Stanford University School of Medicine investigated the number of parents experiencing PTSD four months after the birth of their premature or sick infant. They also looked at the relationship between PTSD and acute stress disorder experienced by parents immediately after birth.

At the end of their study they concluded
:
The relatively high levels of psychological distress experienced by parents coupled with the potential negative outcomes on the parent and infant suggest that it is important to try to prepare parents for the expected psychological reactions that may occur in the event of a NICU hospitalization and also to support parents during the transition to home care.
Another recent study published in Journal of Developmental and Behavioral Pediatrics was conducted at the Children's Hospital in Los Angeles (University of Southern California). Researchers in this study investigated acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit. They discovered that "having a newborn in the NICU had a significant association with the number of mothers' acute posttraumatic stress symptoms." These PTSD symptoms experienced by the NICU mothers were not fully explained by their symptoms of depression or prior lifetime history of traumatic events.

Ways to Help NICU Parents

Key findings of ways to help parents from the Stanford Study are:
  • Preparing NICU parents of what they might experience.
  • Supporting NICU parents in the transition home.
The Children's Hospital Los Angeles concluded that addressing acute post traumatic stress symptoms (or education) may enhance interventions to help families of NICU infants, in particular urban families.

So two of the ways to help prevent NICU parents from getting PTSD appear to be through education and support. NICU parents need to be educated about what to expect while in the NICU and what to expect once they are home. In addition NICU parents need to be supported both in the NICU and once they are home.

Sources:
Dyer KA. 2005. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response. Neonatal Network May/June 24(4):35-46.


Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. 2009. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics. Mar-Apr;50(2):131-7.

Vanderbilt D, Bushley T, Young R, Frank DA. 2009. Acute posttraumatic stress symptoms among urban mothers with newborns in the neonatal intensive care unit: a preliminary study. J Dev Behav Pediatr. Feb;30(1):50-6.

Holditch-Davis D, Bartlett TR, Blickman AL, Miles MS. 2003. Posttraumatic stress symptoms in mothers of premature infants. J Obstet Gynecol Neonatal Nurs. Mar-Apr;32(2):161-71.


Image Source: Modified Microsoft Image.

Tuesday, July 14, 2009

NICU Parents Seem to Be Waiting for the Other Shoe to Drop

One of the things that stuck with both my husband and me after our NICU experience was the feeling that something else was going to happen, or to use the old expression, we kept "waiting for the other shoe to drop" or waiting for something else to develop, something else to show up that was initially missed.

For me getting back to normal was gradual. When my NICU survivor was 2-years-old I started working on an article on "Identifying, Understanding, and Working with Grieving Parents in the NICU" that was published soon after she turned three. Writing about the experience was a way for me to put it into some perspective.

By the time she was in preschool we were able to see that she was meeting her milestones and not suffering from any undiagnosed learning disability.

We had a couple of scares along the way, but with time eventually began to realize that she would not "break like a China doll" and that the other shoe was not going to drop.

Others Feel the Fear and Anxiety as Well
Part of what helped me in getting over the feeling that something else was going to happen was discovering others also felt the same way. Over the years I have discovered that it is common for NICU Parents to continue to feel anxious and fearful that something may happen to the NICU child or to others in their family. It is also common for parents to experience flashbacks to their time in the NICU. Unexpected, sudden losses do that to people. They leave us feeling afraid and even vulnerable.

Former NICU Parent and NICU Parent Researcher Dr. Michael Hynan answers the question often asked of parents "Will I ever get over this [NICU experience]?" in this way:
No, you will not get over this completely. It is normal for you to feel the after shocks of this emotional earthquake.

Many of us high-risk parents have this vulnerability and these flashbacks to the NICU. And we also know that terror usually returns only briefly, and most of the time we can manage it as long as we realize that it is not unusual.
Dr. Hynan and colleagues in their research over the years discovered that these flashbacks and vulnerability are more common that most professionals expect.

Story Behind the Expression
I've often heard the expression "waiting for the other shoe to drop" and wondered where it originated. On the alt.usage.english website I was able to confirm that the phrase means "to await an event causally linked to one that one has already observed". In the form "drop the other shoe", meaning "say the next obvious thing" or "end the suspense."

The best explanation for the origin for the expression was it was based on an old joke.
A guest who checked into an inn one night was warned to be quiet because the guest in the room next to his was a light sleeper. As he undressed for bed, he dropped one shoe, which, sure enough, awakened the other guest. He managed to get the other shoe off in silence, and got into bed. An hour later, he heard a pounding on the wall and a shout:

"When are you going to drop the other shoe?"
Ending Our Suspense as NICU Parents
We were luckier than many NICU parents in that our NICU survivor did not have any major residual or ongoing problems. Her lungs were fine, her eyesight was good, she was meeting her milestones. I think by the time she was three we stopped worrying all of the time that something else would surface and slowly stopped listening for the other shoe to drop.

The scars from her IV's have begun fading with time, but will always be there, as will our scars from experiencing the NICU as parents.


Source:
Hynan M. Helping Parents Cope with a High-Risk Birth: Terror, Grief, Impotence, and Anger. Parent Care Conference.

Israel M. "wait for the other shoe to drop" alt.usage.english newsgroup.

Image Source: Josep Altarriba. Hanging Shoe. Royalty Free Use.

Monday, June 22, 2009

NICU Admissions are Terrifying Experiences for NICU Parents

Research is slowly being published to support what NICU Parents have known all along—that the NICU experience is a terrifying and often traumatic event for those involved.

I shared some of my thoughts on the terrifying response to the NICU in the research paper that I wrote "Identifying, Understanding, and Working with Grieving Parents in the NICU, Part I: Identifying and Understanding Loss and the Grief Response" published in Neonatal Network:
A NICU admission is a stressful time for the family personally, psychologically, and economically. The high-tech NICU environment is unfamiliar and intimidating for most parents.

The instruments, incubators, intravenous equipment, respirators, procedures, monitors, hospital jargon, lights, alarms, smells, and sounds can be terrifying for those unfamiliar with the intensive care setting.
NICU - An Alien Environment
I used this photo of an Alien Incubator in the presentation that I gave on "Grief in the NICU: Identifying, Understanding and Helping Grieving Parents" for the "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal Conference held at Jacobi Medical Center.

I think this alien image really helps to convey to the NICU staff how many NICU parents are viewing the NICU experience. I used the image to be a reminder that for most people the NICU Staff's normal work place is a alien environment.

The NICU experience was a very foreign one for me as well. Even though I was used to being in the adult ICU, as a physician, the neonatal experience was like entering a foreign country or an alien science experiment.

Helping the NICU Parent
NICU professionals can be invaluable sources of support for NICU parents as they struggle to come to grips with the reality of having a baby in the NICU.

Providing orientations to the NICU—from basic hand washing and gowning techniques to explaining all of the 'bells and whistles' in the NICU equipment—can go a very long way in helping NICU parents adjust to this strange world in which their child is living.

What NICU Parents can Do
NICU Parents can become more comfortable with the strange NICU environment by asking questions about their newborn, getting involved with caring for their NICU baby and taking time to find out how the NICU works.

Taking the time to familiarize yourself with the NICU will help NICU parents learn how to function in this strange new environment. In time, you may even discover that you are able to help explain the procedures and equipment to other terrified NICU parents.

Sources:
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(4):35-46.


Image Source: Steve Jurvetson. Alien Incubator. Creative Commons.

Thursday, May 14, 2009

New Type-A Mom NICU Editor

Type-A Mom editorThis May I am starting as the NICU editor for the Type-A Mom site under Mom Stages. I am honored to be taking on the role as NICU editor for their expanding and growing site and look forward to being able to provide information and resources for NICU parents with Type-A Mom.

I written articles for Type-A Mom and Foodie Mama since the early days of both sites and have written several NICU articles for them. When the opening came up, I thought about it for a while and decided to go for it.

I am waiting for them to get my name and picture up, but you can read the articles under the NICU section at Type-A Mom. I will try to post links from this blog so you can read along.

Wednesday, April 1, 2009

Grief in the NICU - A New Presentation

Yesterday I had the privileged of presenting the following teleconference as part of the "Managing the Spectrum of Maternal Mental Health Issues from Conception through the Neonatal Experience" at the HHC Perinatal Conference held at Jacobi Medical Center.

I was told that more than 200 Neonatal Providers were present from 11 NICU hospitals.

Being able to give this presentation was particularly fitting because 7 years ago on the 31st was the day that my youngest was transferred to the level IV ICN.

Knowing that I had the ears of NICU personnel from 11 hospitals helps to complete a circle for me...taking our experiences and teaching about them to NICU personnel.

Monday, May 12, 2008

Identifying, Understanding and Working with Grieving Parents in the NICU - Presentation on Docstoc

This lecture was prepared and given at the First Annual Perinatal Conference held by the March of Dimes Valley Division in Modesto California in November 2005.


Identifying, Understanding and Working with Grieving Parents in the NICU

I was one of the expert speakers present as a former NICU Parent and a Grief, Loss and Bereavement expert.

Thursday, March 20, 2008

Creating a Circle of Healing and Support

I have long held the belief, both personally and professionally, that there is a healing power in holding a person in one's thoughts whether you are saying prayers or giving blessings or lighting candles. This belief in holding a person in your thoughts are the same beliefs echoed by Dr. Jim Reeves, the urologist who treated Cancer Survivor, Lance Armstrong.
There is an ancient Chinese belief
that when a person is held
in the hearts and minds and souls
of so many other people,
they can do better.
One of the greatest difficulties for me as a NICU parent, who was also used to being a physician, was the overwhelming feeling that there wasn't anything I could do for my daughter. I had to step back and turn over all of the care to those who understood the NICU technology and could help her medically to heal.

I decided to change my feeling of helplessness by taking a more active role in her care. We created a Circle of Healing to have friends and family hold her 'in their hearts and minds and souls...so she could do better.'


Our Circle of Healing for My Youngest Daughter

Within days after the birth of my youngest daughter and her unexpected NICU admission, thanks to the connection power of the Internet, we were able to quickly contact friends and family to notify them of what had happened.

On Easter morning, our newborn daughter was included on several prayer lists and prayer circles, only two days after her birth. Via phone calls and e-mail messages we tapped into the healing powers to create a circle of positive thoughts and energies from friends and family around the United States and around the world. We asked everyone to hold our daughter in their thoughts, to keep positive thoughts and prayers to mentally aid in her healing process and strengthen the Circle of Healing around her.

I truly believe that having so many people hold our daughter in their hearts, minds and souls, mentally aided in her healing process. We were blessed with the outcome. The Circle of Healing we created for her helped keep her safe and protected until she was strong enough to be discharged from the hospital.

Continuing the Circle of Healing
Rev. Schwing (see prior post) was the start of the Circle of Healing that we created starting on Easter Sunday Morning for my youngest daughter Kristiina while she was in the NICU.

Writing this article, I wondered who would be there if our baby had a health crisis? I don’t know. I trust that the Circle of Healing would be there. Sometimes we are on the giving end, sometimes on the receiving end. That’s what keeps the circle going.
The nurses at UCSF continued Kristiina's Circle of Healing by hanging a blessing that we wrote for her above her isolette. You can read a copy of the blessing that we wrote for her posted on the Journey of Hearts Website as A Healing Blessing. Part of the blessing is included below.

Ironically, Rev. Schwing would experience being a NICU parent several years later with the birth of his second child. The Circle of Healing was there during his challenging time in the NICU.

My Wish for Current NICU Parents
For this Easter season, as I am reminded of our own NICU experiences, I would like to extend the following wish for NICU and ICN parents who currently have their newborns in the hospital.
May you continue to heal
moment by moment
hour by hour
day by day
knowing that so many love you
and wait to welcome you.

May you feel loved.
May you be safe.
May you be protected.
May you be strong.
May you be healed.

May you find healing, in whatever form that healing might take.

Our Easter Gift
This Special Healing Blessing comes as a bonus when you download the Free NICU eBook, For Those Who Hold the Littlest Hands.

More Resources:

Dyer KA.
An Easter Healing Blessing in the Intensive Care Nursery NICU Parent Support Blog.
Dyer KA.
Circle of Healing - Cloisonné Lapel Pin. The Violet Heart Collection on Squidoo.
Dyer KA. 2002. A Healing Blessing. Journey of Hearts.

Sunday, August 26, 2007

8/26 - Encouraging Message - Believe and Follow Your Aspirations

This message of encouragement comes from Lousia May Alcott, author of "Little Women" a reminder to believe in our highest aspirations.
Far away there in the sunshine
are my highest aspirations.
I may not reach them
but I can look up
and see their beauty,
believe in them,
and try to follow them.


Louisa May Alcott
As a parent, we hold the highest aspirations for our child(ren) and dream of their beautiful future. This message of encouragement is a helpful one to remember and to hang on to during the times when it may be difficult to believe.

Keep looking up, keep believing and keep following those dreams.


Photo Source: Manoel Silva.
Clouds. Royalty Free Use.

Add to Technorati Favorites



Wednesday, August 22, 2007

8/21 - Comforting Message - Enduring the Darkness to See the Light

I seem to find these quotes about the night sky to be comforting and instilling a sense of hope that you will make it through the dark times, and that sometimes, something very unexpected emerges from facing these challenges.

Full Moon Sky
I will love the light
for it shows me the way,
yet I will endure the darkness
for it shows me the stars.
Og Mandino


I recently included another quote about darkness and the stars from our Grief, Loss and Comfort Collection on the Journey of Hearts blog. See the blog entry for
Tuesday, July 31, 2007 at Grief, Loss & Comfort Quote - The Stars Openings in Heaven.

More Comforting Moments and Comforting Messages

Photo Source: Lynne Lancaster. Night Sky 2. Royalty Free Use.

Add to Technorati Favorites

Tuesday, August 14, 2007

Introducing the NICU Parent Support Audio & Podcast Channel

I am pleased to announce that the NICU Parent Support Audio & Podcast Channel is available now for your listening.

The channel has already been described as a "useful and comforting guide" and "a very powerful creation" one that should be of significant assistance to NICU families.

I created the NICU Parent Podcast Channel as part of a course that I took this summer on Podcasting for Teaching through the @ONE's Online Courses.

About the NICU Parent Support Audio & Podcast Channel
The NICU Parent Support Audio & Podcast Channel is a series of audio messages of information, Support and encouragement for parents and families who have babies in the Neonatal Intensive Care Unit (NICU) or the Intensive Care Nursery (ICN).

This audio channel is a collection of audio messages that provide information, encouragement, support and comfort for NICU parents. Some of the recordings are longer, more informative episodes; other episodes are shorter, recorded messages of encouragement, support and comfort.


The Channel Line Up
The NICU Parent Support Audio & Podcast Channel has 5 episodes so far. Each episode also has a downloadable PDF file of the transcript for the episode that you can read along with the audio message.
  • Episode 1: Introduction to the NICU Parent Support Audio and Podcast Channel
  • Episode 2: Dreaming New Dreams after Picking up the Pieces of Broken Dreams
  • Episode 3: Searching for Answers to the Difficult Questions
  • Episode 4: A Special Healing Blessing - Version 1: Tibetan Bowls, Chimes & Bells
  • Episode 4: A Special Healing Blessing - Version 2: Traditional Lullaby
The plan is to get a collection of podcasts that parents can listen to one daily during the early days of the NICU for information, encouragement and support.

Subscribing to the NICU Parent Support Audio or Podcast
You can subscribe to the NICU Parent Support Audio & Podcast Channel in one of three ways:

On iTunes: You can subscribe to the NICU Parent Audio & Podcast on iTunes by clicking on the iTunes icon to the left, on this link, or on the iTunes icon in the Blog sidebar.


As a RSS Feed: You can also subscribe to the feed for the NICU Parent Audio & Podcast Channel by clicking on the Feed icon to the left or on this link or the Channel's RSS Feed in our Blog sidebar.

As a WebPage with Links: You can directly pick which audio message and/or pdf files you want to listed to by visiting the webpage for the NICU Parent Support Audio & Podcast channel that lists out all of the available episodes.


For More Information or to read reviews visit the NICU Parent Support Site Audiocast page.

Add to Technorati Favorites

Monday, August 13, 2007

8/13 - Comforting Message - Hope Makes the Present Moment Less Difficult

A simple message today from Thich Nhat Hanh:
Hope is important because
it can make
the present moment
less difficult to bear.

If we believe
that tomorrow will be better,

We can bear a hardship today.
Thich Nhat Hanh


It is my hope that by providing you with information, resources and support on the NICU Parent Support site that you will find some hope, so that the present moment, the present situation you may be experiencing with your NICU baby will be easier to bear.

May you come to believe your tomorrow be better than today.

Other Resources on "Hope"
Dyer K. Asking Why and Finding Hope. June 17, 2007. NICU Parent Support Blog.
Dyer K. Pitter Patter: A Message of Hope from a Former Preemie. June 9, 2007. NICU Parent Support Blog.

Photo Source: Alexander Abolinsh.
ONE... TWO... FREEDOM!!! Royalty Free Use.

Add to Technorati Favorites

Sunday, August 12, 2007

8/12 - Encouraging Moment - Riding the NICU Roller Coaster Ride

The NICU experience is often described by many parents as a roller coaster ride. It is a series of highs and lows, ups and down, times that are exhilarating, uplifting and exciting, followed by times when all you can do is close your eyes and hang on for dear life.

I think it is helpful for parents to realized that they are in for a series of ups and downs, hopefully more ups than downs during their NICU time.

Riding the NICU Roller coaster
This passage comes from Dianne I. Maroney, a NICU Nurse, NICU Parent and owner of the website premature-infant.com. She describes the Roller coaster ride of the NICU:
For years I had been telling parents,

"Having a baby in the NICU is a roller coaster ride."


Although accurate, the analogy pales beside the reality.

The range of emotions is beyond imagining.

There is the moment of joy
when she opens her eyes peacefully,
followed by panic at the slightest hint of trouble.
You can read more from her article on "Helping Parents Survive the Emotional "Roller Coaster Ride" in the Newborn Intensive Care Unit" published on the Prematurity.org site

Photo Credit: Peter Hamza. Rollercoaster. Royalty Free Use.

Add to Technorati Favorites

Monday, August 6, 2007

8/6 - Comforting Message - Overcoming the Pain and Suffering

Today's comforting quote comes from Helen Keller, a woman who was both deaf and blind, but overcame these obstacles to become a college graduate, author, lecturer and activist.


Although the world is full of suffering,

it is also full of the overcoming of it.

Helen Keller

When you are right in the midst of suffering and feeling intense pain, it may be difficult to believe that you will ever get beyond the suffering. For NICU Parents these moments can be overwhelming, disheartening and heart-breaking.

Seeing the Other Side
One way of helping to get through the suffering phase is to find someone who has made it through and seen the other side of the suffering and talk to them, to get a glimpse of the future.

Other NICU parents, the NICU nurses and Physicians who have been there and seen positive outcomes from the NICU can help provide valuable perspective whether it is a baby being eventually discharged to home, or if it is helping a family create memories and spend the last precious moments with their dying baby.

If you NICU is lucky enough to have a NICU Parent Pathfinder or someone designated to help get NICU parents oriented, be sure to use their resources.

Photo Source:
Robbie Ribeiro. Nature's Force. Royalty Free Use.

Add to Technorati Favorites

Monday, July 30, 2007

7/30 - Comforting Message - The Loss of a Child is the Loss of the Future

Today's message is more about why dealing with the loss of a child is so difficult for parents. The comfort perhaps comes from the knowledge of why the death of a child at any age is so challenging.

Children Don't Die First...Do They?
In the natural order of things, children grow into adulthood, marry and have children of their own. Children aren't supposed to die before their parents. Yet sometimes, children do die leaving parents behind to grieve.


Arnold and Gemma in their book, A Child Dies A Portrait of Family Grief, described why parents feel so distraught, depression and despair following the death of a child:

Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should.

The loss of a child is the loss of innocence, the death of the most vulnerable and dependent.

The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection.


I think for many it is the death of the dreams, the death of hopes and the death of their future that is the most difficult for parents to fact following the loss of a child, at any age.

Quote Source:
Arnold JH, Gemma PB. A Child Dies A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Ed. 1994.

These thoughts are also featured on the Squidoo lens, My NICU Baby has Died.

Photo Source: Phil Landowski. Dust to Dust. Royalty Free Use.

Add to Technorati Favorites

Monday, July 23, 2007

7/23 - Comforting Message - Struggling for Your Dreams


But there is suffering in life, and there are defeats.

No one can avoid them.

But it's better to lose some of the battles in the struggles for your dreams,

Than to be defeated without ever knowing what you're fighting for.

Paulo Coelho



NICU Struggles
I think if you would talk to most NICU Parents many would use the words "struggle," "battle," and "challenge" to describe their time in the Neonatal Intensive Care Unit.

I know what I was battling for shortly after my daughter arrived in the NICU. I was
fighting to keep my daughter strong enough, in whatever ways I could imagine, and struggling to have her stay on this side and not cross over (not to die).

Dreaming New Dreams
NICU parents have to quickly adjust to the fact that their dream of taking home a healthy happy newborn shortly after delivery is not going to happen.

MOD Family Support Specialist, Melissa offers these words of wisdom:

This was not what you were expecting.
You had dreams of this precious child being born and going home. Storybook fantasies of being a mom...filled your dreams at night.
This is the way you believed things would be...
Not spending your baby's first days in an intensive care unit.

Sometimes we have to sit back and accept that we are working towards a new normal. Our normal.

Melissa
Share Your Story

Sometimes we have to step back, let go of the old dreams and begin dreaming new ones.

The dreams of NICU Parents are often postponed and changed. Dreams of going home with a precious baby...change to ones of having a healthy, happy, peaceful baby at home...at some point.

Source:
Melissa. Baby in the NICU. Share Your Story. May 2, 2007.


Photo Source: Dick Herrmann. Sleeping Baby. Use with Permission.
www.lakepeople.de

Add to Technorati Favorites