After the NICU: Aftercare for NICU Parents

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

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

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):

1. Having an early, often unexpected delivery.
2. Watching your own infant and witnessing other infants enduring traumatic medical procedures and life-threatening events.
3. 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.

1. 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.
   
2. 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.
3. Feeling numb - Find it hard to express your feelings.
4. 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

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

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.

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.

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.

NICU Scrapbook Resources for Free from Miracle Bebe

Miracle Bebe, one of the new resources on the Internet for preemies offers a collection of scrapbook resources designed by a NICU mother for free.

You can visit their Preemie Scrapbooking Freebies to see their gallery of pages that include NICU records, growth charts, lactation records, journaling pages, birth announcements, conversion charts and others.

These pages can be printed on your home printer, and then embellished with photos or hand written content.

More about Miracle Bebe
Miracle Bebe is devoted to families touched by prematurity, and we hope that we offer a place of peace and healing. They offer online resources that will bring you the ability to share your memories of your birth experience, the NICU journey and to home.