Encouraging Message: Advice from a NICU Physician on Coping with the NICU

Leonard E. Weisman M.D. Director of the Perinatal Center at Texas Children's Hospital offered these encouraging words about coping with the NICU experience:

It's a day-to-day kind of thing..

There are days when things go well.

There are days when things don't go well.

Leonard E. Weisman M.D.

It is my hope that you have more days when things go well than days when things don't.

Photo Source: Ayhan Yildiz. Calendar. Royalty Free Use.

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.

An Easter Healing Blessing in the Intensive Care Nursery

With the Easter Season on us very soon, I am reminded of our Easter adventure many years ago with my youngest daughter.

I recently rediscovered Rev. Jurgen Schwing's publication of our ICN/NICU Story as an example of a Healing Blessing used at the beginning of life.

Jurgen tells of our ICN/NICU adventures from the perspective of the Chaplain on call. He is the one that was asked to wake up in the middle of the night to come into the hospital. (Ironically, Rev. Schwing would experience being a NICU parent several years later with the birth of his second child.)

You can read more of Rev. Schwing's "Healing Blessing in the Intensive Care Nursery" at the Chaplaincy Institute website.

Healing Blessing
Even though we weren't very religious, when the decision was made to transfer Kristiina to another hospital for higher level of care, we wanted her blessed before going. She was born on Good Friday and was going to be transferred on Easter Morning. We were hoping her name would be good karma.

Rev. Schwing came up with a beautiful blessing for Kristiina:

Little Kristiina,

I bless you and ask that God may heal you.

May the One who formed you in your mother's womb blow divine breath through your lungs so that you can breathe the breath of life.

May your heart beat and your blood circulate and bring you Divine love and light, may you know that you are loved and wanted, and may you find deep inside of you a call to survive, to live, to thrive.

May the God who formed you in the depths of the earth give you many days & years of life.

May you grow up and become all you were meant to be.

I bless this woman and this man, your parents, Kirsti and Cole.

May God's hand be on your shoulders and relieve your fears.

May the One whose knowledge is so vast be the light on your journey.

May you be given the love and strength to bring your daughter through this difficult time,

and may you watch her grow up, proud and filled with knowing what a miracle she is.

More on our Easter NICU Experience later next week...

More:
Schwing J. Healing Blessing in the Intensive Care Nursery. Chaplaincy Institute website.
Dyer KA. Observing Mother’s Day with Renewed Appreciation. Journey of Hearts.
Dyer KA. Observing Mother's Day with Renewed Appreciation. MomMd.com

NICU Parent Support Blog: Blogging without Obligation

I loved the concept of "Blogging without Obligation" when I stumbled across it and knew it would be something I would adopt for the NICU Parent Support Blog. The concept was developed by graphic + mixed media artist and sometimes blogger, Tiffini Elektra of the tartx website.

She came up with the concept of BWO after "coming across what seemed to be the 4000th or so post on someone’s blog starting with 'I’m sorry I haven’t posted in awhile'" and decided it was time to "rethink what makes a good blog and the expectations that have come to be part of it."

Blogging Without Obligation means you blog:

• Because you shouldn't have to look at your blog like it is a treadmill.

• Because its okay to just say what you have to say. If that makes for a long post, fine. Short post, fine. Frequent post, fine. Infrequent post, fine.

• Because its okay to not always be enthralled with the sound of your own typing.

• Because sometimes less is more.

• Because only blogging when you feel truly inspired keeps up the integrity of your blog.

• Because they are probably not going to inscribe your stat, link and comment numbers on your tombstone.

• Because for most of us blogging is just a hobby. A way to express yourself and connect with others. You should not have to apologize for lapses in posts. Just take a step back and enjoy life, not everything you do has to be "bloggable".

• Because if you blog without obligation you will naturally keep your blog around longer, because it won't be a chore. Plus, just think you will be doing your part to eradicate post pollution. One post at a time...

As has Journey of Hearts, the NICU Parent Support Blog has also been a labor of love, another site from which I do not earn an income. This blog is primarily a hobby. It has been created as a resource and a way to provide information for other NICU Parents to help them through their NICU adventures rather than blogging with daily updates.

I hope that you find the blog postings here useful as I continue to add information and resources that would have been helpful for us during our NICU stay.

Now I Lay Me Down to Sleep (Bereavement Photography) on NBC's Today Show

The Now I Lay Me Down to Sleep Foundation is there for parents and families to help aid them in their Healing, bring Hope to their future, and Honor to their child.

It is through Remembrance that a family can truly begin to heal.

NILMDTS Foundation

In March 2008, the Today Show featured an episode on Bereavement Photography, photographing the end of a newborn's or child's life.

Learn more about these very special photographers who are able to bring comfort to parents at the end of a child's life by taking permanent reminders of a life.

About Now I Lay Me Down to Sleep Foundation
The Now I Lay Me Down to Sleep Foundation (NILMDTS) administers a network of almost 7,000 volunteer photographers in the United States and twenty-five countries. At a family's request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session.

The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby.

You can find out more about Bereavement Photography at the Squidoo Lens that I developed on the subject.

More:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com

Creating Memories of a Dying Baby For Parents Through Photography

The images serve as touchstones for feelings and memories pertaining to deep significant relationships and spiritual connections some of which may flourish in the intimacy of the last days or months of life.

Todd Hochberg

Bereavement Photography
To those unfamiliar with the topic, Bereavement Photography may seem a bit unusual to say the least.

For the parents who have been the recipients of the photographic memories captured by volunteer photographers, bereavement photography is a priceless gift, documenting the often all to brief life of their baby.

The Healing Benefits of Bereavement Photography
There is a strong healing aspect to bereavement photograph. Todd Hochberg of Touching Souls shares how photographs help parents with their grieving process in an article originally published in Share.

Photographs help NICU parents by:

1. Making their baby's life and death real for the parents. Making the life real is a significant issue with brief perinatal lives.
2. Validating the parents feelings, both at the time of their baby's death and up to the present.
3. Being an affirmation of parenthood, a reminder that there was a child that they were a parent to.
4. Providing a tangible record of their time with their baby. The photographs often include cherished close up details of their baby's physical features and evidence of loving familial bonds.
5. Allowing them to connect with the many feelings and memories that may have gotten lost in the torrent of overwhelming grief at the time or in the weeks since.

Todd feels that offering parents an illustrated narrative of "their story" for themselves and the loved ones they choose to share it with, helps to fostering greater social support and connection, which also aids in the grieving process.

Photographers Offering Bereavement Photography Services

Touching Souls - Healing with Bereavement Photography
Photographer Todd Hochberg of Touching Souls has supported parents experiencing perinatal loss, as they say goodbye to their babies, since 1997. The photographs of babies with their grieving parents are available as valuable emotional mementos for families in Chicago.

Now I Lay Me Down to Sleep (NILMDTS)
Now I lay Me Down To Sleep (NILMDTS) is a non-profit organization devoted to offering gentle and beautiful photography and videography services. Their services are available to all parents experiencing the death of a baby. There are no fees for creating these photographic memories.

I Say My Prayers

I Say My Prayers involves taking pictures of terminally ill children, individually and/or with their families. The child may be a newborn who will never leave the hospital or it may be a teenager. I will capture the "spirit" and the "life" of the child for the families to hold on to forever. The sitting and the pictures are donated by me to the families.

---

Bereavement Photography helps to ease the parents grief by creating memories that will last a lifetime for these grieving parents. The photographs help them to hold on to memories and document the life of their baby.

Resources:
Dyer K. 2007-8. Bereavement Photography. Squidoo.com
Hochberg T. In Your Eyes; The Caregiver and Bereavement Photography. Share. 2003.

Image: Nic Luc. Old Photo Lens. Royalty Free Use.

How to Comfort a Grieving NICU Parent

Following the hospitalization of a newborn in the NICU, Family and Friends of the NICU Parents may themselves be feeling some grief over the situation and feel helpless and unsure what they can do.

They may want nothing more than to find a way to wrap the NICU parent in a blanket to comfort them, much like Linus with his security blanket.

Even though family and friends may not feel that they know what to do, what to say or how to offer comfort, grieving parent(s) need to know that their family and friends are there to support them.

Perhaps the most important thing for friends and family to do is to let the grieving NICU parents know that you are thinking of them and are supporting them during the challenging time.

Ways to Comfort a Grieving NICU Parent

To show your support and comfort a grieving NICU parent take a look at the different suggested phrases. Choose one of the suggestions or modify a phrase so it feels more like something you would say (or write) yourself.

Suggested for Phrases to Use

Some of my personal favorites:

• I am sorry for your loss.
• I wish you didn't have to experience this.
• I am sorry that this happened to you.
  
• I am thinking of you during this difficult time. (usually written)

Some additional phrases that could also work:

• I'm so sorry.
• I wish you comfort.
• I hope things will be good.
• I wish this hadn't happened to you.

Health care providers may be at a loss to find the right words that can bring comfort to a NICU parent. The following are suggestions from a paper that I wrote which can be to use by NICU Providers when talking with a grieving person or parent.

• I'm sad for you.
• I don't know why it happened.
• What can I do for you?
• How are you doing/coping with all of this?
• How can I help?

When picking something to say use the phrase that resonates the most with you, then let the parent(s) know either verbally or in a written message that you are there for them during this challenging time.

What Brought You Comfort?

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

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

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

Resources:

Dyer KA. What You Can Say or Do for a NICU Parent. January 2008. NICU Parent Support Blog.
Dyer KA. What can I *say* when a NICU baby dies? June 2006. NICU Parent Support Blog.
Dyer KA. Identifying, Understanding, and Working with Grieving Parents in the NICU, Part II: Strategies. Neonatal Network. June/July 2005; 24: 27-40.
<>Dyer KA. 2006. My NICU Baby's Died: Now What? on Squidoo.com
Dyer KA. 2007. How to Write a Condolence Note. on Squidoo.com

Image: Benjamin Earwicker. Cozy. Royalty Free Use.

What You Can Say or Do for a NICU Parent

When a baby has been admitted to the NICU, family and friends can fear saying or doing the wrong thing so much that they don't do or say anything at all; this is not helpful for a NICU parents who could use support during a difficult time.

Well-meaning friends and family members want to be able to say something that can somehow make it better, or do something that can ease their distress.

Read on to discover some helpful suggestions of what to say and what to do for the parents when a baby gets admitted to the NICU from a parent who's been in the NICU and has also offered advice to other NICU Parents and others facing challenging times.

Say Something to Show Your Support
Pick one of these various suggestions, or modify one so it feels more like something you would say. If finding something to say still doesn't seem to work, then you can let the person know verbally or in writing that you are there for them.

Some of my personal favorites include:

• I am sorry for your loss.
• I wish you didn't have to experience this.
• I am sorry that this happened to you.
• I am thinking of you during this difficult time. (usually written)
• I'm so sorry.
• I wish this hadn't happened to you.
• I wish things had turned out better for you.
• I wish the news had been different.

What can I *say* to a NICU Parent?
People often fear so much saying the wrong thing that they often don't say anything at all. A grieving parent would like to know that family and friends are there to support them during this difficult time of loss.

I think that most of the time words spoken from the heart even if they don't feel perfect will generally be remembered as heart-felt support.

If you aren't sure what to say, you can start by sending a card and letting them know you are thinking about them.

What can I *do* for a NICU Parent?
You may also make specific offers of help to the overwhelmed NICU Parents. Ask:

• What can I do for you?
• How can I help?
• What would be the most helpful for you right now?
  

NICU parents are often in a state of shock, especially initially and have difficulty making simple decisions. Instead of asking what you can do, you may want to make specific offers e.g. picking up other children, bringing food, helping or doing the shopping, calling family members and then have the parents tell you if that is something they need.

What else can I *do* for a NICU Parent?
Two very helpful things you can *do* to support a NICU parent are to listen and to just be.

Listen
One of the most important things you can *do* for a grieving NICU parent is to give him or her your presence. The ability to listen can be a great source of comfort. Listening communicates respect, caring and empathy.

Sometimes all a parent may needs is someone who will truly and emphatically listen to their NICU story. Really listening involves being present for the person, not interrupting and staying connected and focused on what he or she is saying.

Simply Be
Simply sitting and listening to their NICU story, being a witness to their stress and anxiety can help provide invaluable support for a overwhelmed parent.

Invite the NICU parent for a cup of coffee or tea at the hospital cafeteria or nearby coffee shop.

Spending a few quiet moments in silence, holding a hand can be a very effective way to convey your support and caring.

Best Gifts for a NICU Parent
Remember that two of the greatest gifts you can give to a NICU parent are the gift of listening and the gift of your presence.

Do not underestimate the healing presence yourself and of really listening to someone who is going through a difficult experience.

Note: This is a slightly modified version of the article "What to Say or Do for a NICU Parent" published on the Type-A Mom site.

Sources:

• Dyer KA. What can I say when a NICU baby dies? - June 2007.
• Dyer KA. What can I do when a NICU baby dies? - July 2007.
• Dyer KA. Comforting Moment - It's Only Words... June 2007.

Image Sources: Laura Glover. Holding Hands. Matthew Hains. Coffee Shop in Black and White. Pipps Outlet Center. All Royalty Free Use.