The Zaky - A Comforting Hand for Your NICU Baby

To this day one of the hardest things for me in having a NICU baby was not being able to stay with her and watch over her 24 hours a day 7 days a week.

We had a 2-year-old daughter who also needed our care and attention, so could visit for some time during the day, but had to leave her behind in the care of others in the ICN.

One of the best ideas that I have found for helping support a NICU baby and support the NICU parent is the Zaky ergodynamic hand pillow. The Zaky Infant Pillow is a way to simulate mother's or father's hand to provide comfort to your NICU baby when you are not able to do so.

Uses for the Zaky
By mimicking the shape, weight and touch of a human hand, the Zaky is able to provide comfort, support and a sense of security to NICU babies. The Zaky can also be used in the NICU to assist with positioning the babies (see image above).

The Zaky has been used to care for NICU Babies by mothers, fathers and family members, neonatologists, pediatricians, surgeons, obgyns, nurses, physical & occupational therapists, infant massage therapists, developmental specialists & ergonomists. The Zaky has been used in NICUs since 2001.

The Zaky
The Zaky is now available on Amazon in different hands and in different colors for you to get for your NICU Baby or give to your favorite NICU parent. Click on the image or the text link to learn more about the Zaky.

Right Handed Zaky

The Zaky Positioning Pillow - Right Hand

Left Handed Zaky

The Zaky Positioning Pillow - Left Hand

Pink Zaky

The Zaky Bonding Hand - Pink

Blue Zaky

The Zaky Bonding Hand - Blue

More on the Zaky
Dyer KA. The Zaky - A Bonding Hand from Zakeez inc. Squidoo.com
Dyer KA. Leave a Zaky hand with Your NICU Baby - Providing Comfort When You are Not There. July 2007. NICU Parent Support Blog.

More on Remembering out NICU Experience
Dyer KA. March 2008. An Easter Healing Blessing in the Intensive Care Nursery. NICU Parent Support Blog.
Dyer KA. March 2008. Creating a Circle of Healing and Support. NICU Parent Support Blog.

Photo Source: Zakeez.

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.

9/10 - Encouraging & Comforting Message: Free Hugs Campaign

Today is Free Hugs Day. If you don't know about the inspirational Video that has become a YouTube Phenemonon take a look at the lens that I created on Squidoo.

In the the Spirit of the Free Hugs Campaign, I am passing along the information to you with a quote and a virtual hug to hopefully brighten up your day.

Millions and millions of years
would still not give me
half enough time
to describe
that tiny instant of all eternity
when you put
your arms around me
and I put my arms around you.

Jacques Prevert

Free Hug Day - September 10, 2007
The Free Hugs Campaign began as one person's attempt to make a difference and reach out to others to brighten their lives.

The Free Hug Campaign is a random act of kindness, a selfless act performed by a person for the sole reason of making others feel better.

For More information on Free Hug Day, see the Free Hug Campaign on Squidoo.

Enjoy a Virtual Hug
Here's Your Online Hug:

((( Hug )))

Now go and pass it on to someone else.

Shifting to a Weekly Posting Schedule for the Fall
My apologies for the length between posts. The semester has started for my girls and myself, which has lead to some increased time demands.

I will be shifting to a schedule posting at least one blog entry each week along with updates about the NICU Parent Expo.

Photo Source: Peter Rol. Fenne Lien. Royalty Free Use.

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.

Palliative Care in the NICU - Ethical Dilemmas: A Role for Paralytics & Who is the Patient?

On July 11, 2007 a neonatologist in the U.K. was cleared of misconduct in the case of hastening the deaths of two dying babies. In the final moments before the baby's death, Dr. Munro injected the babies with a paralyzing drug, pancuronium, at 23 times the normal dose to suppress agonal breathing.

This case being described as being "tantamount to euthanasia" is something to think about. It underscores many of the ethical dilemmas surrounding end-of-life or palliative care in the NICU finding the delicate balance between saving a life and merely prolonging a life until it's inevitable death.

Definitions
Palliative care are services that alleviate, lessen, or provide relief of symptoms which interfere with quality of life when curative treatments are no longer an option with a life-threatening illness.

Paralytics and Palliative Care?
My Palliative Care or End-of-Life background is in adult medicine, but the principles of 'doing no harm' and support someone, even a newborn, with comfort until the end of their life should be the same.

I don't remember paralytic agents being routinely used at the end of life with adults. I do remember an attending physician, a critical care doctor briefly sharing his own horrifying experiences under general anesthesia, anesthesia awareness. He described being paralyzed, awake and unable to let anyone know because of the medications he'd been given.

One of the concerns in these cases is that the two dying babies might have been paralyzed, still awake and unable to breathe. As Nurse Judy noted

"We have no way of knowing if those babies were suffering before he gave them the Pavulon, we have no way of knowing if they had any relief from suffering. They may have been totally aware of being unable to breathe."

Not a pleasant thought, to have someone suffocate to death because of medications.

According to the National Cancer Institute Ethical Issues on Last hours of Life, "paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort." In a study done in the late 1990's in the U.K. looking at the practices surrounding withdrawing a dying child from a ventilator, a minority of the respondents continued neuromuscular paralysis after the child had been withdrawn. In a more recent BMJ article from 2002, that looked at the topic of whether agonal respirations are necessary, these physicians proposed that gasping respirations at the end of life should be treated and in rare circumstances "the use of neuromuscular blockade to suppress prolonged episodes of agonal respiration in the well-sedated patient in order to allow a peaceful and comfortable death."

Perhaps this is a difference in the training between the U.S. and the U.K, perhaps it is a difference in the research being done. I think most of all the case underscores the need for still more education in palliative care in the NICU setting. This training would include beneficial and effective ways of managing pain and symptoms in the final hours of life as well as developing standard protocols for NICU physicians to follow to allow for the peaceful and comfortable death.

Who is the Patient - the Baby or the Family?
Another issue in this case, is who was the patient...the baby being treated, or the parents who will be surviving the deaths. In both of these cases reportedly the mothers and fathers of the babies "fully supported the doctor's actions and were grateful to him."

Nurse Geena's comments in response to the parents fully supporting the doctor serve as a reminder to be thinking who is being treated.

Goody for them, but I just can't quite get it out of my mind that the "treatment" was done to comfort the parents and not the baby.

It almost seems that the parents, those who would be living on after the death, had become the primary focus for the doctor, not the dying baby.

Which is more harmful for the parents? Prolonging Death or the Method of Death.
How one copes with a death depends much on how the death was handled at the time. The ultimate outcome of this case will be the effect of these deaths on the surviving parents.

• Will they be more grateful that their baby's suffering ceased and the death was hastened?
• Will they be more harmed because the drugs used hastened their baby's death paralyzed their baby?

We may never know.

Other Bloggers' Thoughts:
Judy, RN. Pancuronium = Pain relief? For whom? Tigers Don't Jump Blog. July 10, 2007.
Geena, RN. On the verge of what society finds acceptable? Code Blog. July 10, 2007.
Kevin, MD. Prolonging life vs prolonging death. Kevin MD. July 10, 2007.

Sources:
BBC News. Doctor 'hastens babies' deaths.' July 5, 2007.
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6273528.stm
BBC News. Doctor felt babies were suffering. July 9, 2007.
Available at: http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6276900.stm
BBC News. Baby doctor cleared of misconduct. July 11, 2007. Available at:
http://news.bbc.co.uk/2/hi/uk_news/scotland/north_east/6291224.stm
Reid. M. When prolonging life becomes prolonging death. July 9, 2007. Times Online.
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article2045207.ece
National Cancer Institute. Last Hours of Life (PDQ®). Health Professional Version. Last updated. June 6, 2007.
Hatherill M, Tibby SM, Williams C. March MJ, Murcoch IA. Withdrawal of ventilation from the dying child. Clinical Intensive Care. 1997. 8;5:222-227.
Perkin RM, Resnki DB. The agony of agonal respirations: is the last gasp necessary?
Journal of Medical Ethics. 2002;28:164-169. http://jme.bmj.com/cgi/content/abstract/28/3/164

Additional information:
Dyer KA. My NICU Baby is Dying: Now What? Available at:
http://www.squidoo.com/marchofdimes/mynicubabyisdying
Dyer KA. My NICU Baby had Died: Now What? Available at: http://www.squidoo.com/mynicubabydied/
Carter BS. Bhatia J. Comfort/palliative care guidelines for neonatal practice: development and implementation in an academic medical center. Journal of Perinatology. 2001. Jul-Aug;21(5):279-83.
Full article available at: http://www.nature.com/jp/journal/v21/n5/abs/7210582a.html
Carter BS. Ethical Issues in Neonatal Care. eMedicine. Available at: http://www.emedicine.com/PED/topic2767.htm

7/2 - Comforting Message - From a NICU Nurse - You're in the Best Hands

Today's comforting words come from an article written by Chris Colin, for the San Francisco Chronicle, a profile on the life of several ICN nurses from UCSF's ICN (Intensive Care Nursery).

In the article, Joni McGovern, a 12-year NICU Nurse at UCSF's Intensive Care Unit offered some words of encouragement for NICU or ICN parents.

Having a baby in the ICN can definitely be a nightmare. This was not in the parents' birth plan.
But once you're here, you're in the best hands.

Source:
Colin C. ON THE JOB: Saving babies: It's not a TV show but these nurses' jobs actually are life-or-death. SF Gate. July 2, 2007. Available at: http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2007/07/02/onthejob.DTL

Photo Source: Mario Alberto Magallanes Trejo. Contact. Royalty Free Use.

NICU from the Nurse's Perspective - When Everything Changes in an Instant

This is how it is [in the NICU]...
Everything changes in an instant.

Joni McGovern
12 year NICU Nurse
UCSF's Intensive Care Nursery

This quote sums up life for the NICU Nurse and for the NICU Parent...how one minute you are going along with a normal pregnancy and the next you are in the NICU.

NICU Nurses - Providing Special Care
Chris Colin, author of the On the Job series published for the San Francisco Chronicle, emailed me about an article he had published today. It is a profile on the life of several NICU nurses from UCSF's ICN (Intensive Care Nursery) - located at the very top of the hospital on the legendary 15th floor, home to 50 tiny beds.

As any NICU Parent can tell you, NICU nurses are a very special 'breed' of nurses. We discovered this to be true in our daughter's case. To quote the article,

A [NICU] nurse can fight desperately to save the most fragile human life, and indeed do so for the time being, but turn right around and understand that resuscitation might not be the right decision when the next crisis comes.

It takes a very special medical professional to understand that "resuscitation might not be the right decision when the next crisis comes."

Understanding that Saving a Life isn't always the Best Option
Quality of life was a big issue that I dealt with as a physician caring for older patients with chronic illness, for hospice patients and for those at the end of life. Quality of life is now a major ethical dilemma in the NICU at the beginning of life.

The number of premature births has increased along with the technology to keep younger and younger babies alive. Another of the NICU nurses, interviewed noted:

Some babies aren't meant to live, and it's ultimately a good thing that they don't.

Melitta Hernandez
8 year NICU Nurse
UCSF's Intensive Care Nursery

The ethical dilemma facing neonatology (study of newborns) is that with the technology and the increased number of babies surviving the first few months means there are more children now facing "a lifetime of disability, stunted development or other health issues." So there are times when in the NICU "resuscitation might not be the right decision..." Of course these words may not be comforting to the NICU parents of the tiny premature child.

I don't know if anyone knows the right answer to this unhappy dilemma. Obviously much depends on your perspective...if you are the NICU parent or the CEO of a health care company providing medical insurance.

More Readings:
Carter BS. 2006. Ethical Issues in Neonatal Care. eMedicine. http://www.emedicine.com/PED/topic2767.htm

Source:
Colin C. ON THE JOB: Saving babies: It's not a TV show but these nurses' jobs actually are life-or-death. SF Gate. July 2, 2007. Available at: http://www.sfgate.com/cgi-bin/article.cgi?f=/g/a/2007/07/02/onthejob.DTL

Photo Source: Kumar Murukan. Just before. Royalty Free Use.