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.

Inspirational Story: Micro Preemies Become Adults

This inspirational story comes from the NICU at Children's Hospital in Minnasota. Six former NICU babies, micro preemies, reunited with neonatologist Dr. Ronald Hoekstra, the physician credited with keeping them alive. These six former NICU babies are all college students now.

What is a Micropreemie?
A micropreemie or micro preemie is one that weighs less than 1000 grams, usually between 700-800 grams (1 3/4 pounds) and is born before 26 weeks of gestation. An average pregnancy is 40 weeks, with a weight of somewhere between 6 and 9 pounds.

In the late 1980's babies born before 26 weeks had about a 50% shot at survival. Today their survival rate is nearly 90%.



Dr. Hoekstra's Findings
Hoekstra found in the preemies he studied born from 1986 to 1989 one key to their survival is that they were remarkably resilient.

Even though some of the preemies in the group experienced problems ranging from poor vision to cerebral palsy (about 10 in the group) as a group they have been very successful. Nearly 90% finished high school and nearly 60% have continued on to college.

Dr. Hoekstra believes the key to the success of these micropreemies is eEarly intervention and parental support and follow-up.

"If you hang in there, a lot of these children will surprise you."

You can read more about the Micro Preemies at the article on Type-A Mom.

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A related article is on the Type-A Mom site under the NICU section of Mom Stages.


More on the Micro Preemies

Fowler J. May 2009. When Miracle Babies Grow Up! People Magazine.
Dyer K. May 2009. Inspiration from the NICU as Micro Preemies Grow Up. Type-A Mom.
Glick P., Irish M., Caty M., Pearl R. 2000. Pediatric surgery secrets. Elsevier Health Sciences p. 321.

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.

Big Near-Term and Sick Newborns are the Majority of the NICU Admissions

Even though people associate the (NICU) Neonatal Intensive Care Unit with premature babies, near-term babies, the fact is that those babies who are closer to term (40 weeks) are often the ones most frequently admitted.

We get this all the time when I mention my daughter was in the NICU. "Oh, she was a preemie?" "No. She was a Sick Newborn."

Definitions

Near-term infant - a newborn closer to term (40 weeks), often between 34 and 36 weeks or born roughly four or five weeks before his or her estimated due date.

Late preterm infant - Near-term infant

Premature baby - a newborn born before 34 weeks

Sick Newborn - Newborns that are near term or term infants who require Intensive Care intervention for a variety of problems or diseases.

Some near-term or sick newborns experience complications from oxygen deprivation during delivery or wet lungs after a Cesarean section.

Big NICU Babies
According to an article on near-term babies, Dr. Kenneth Herrman, neonatologist and medical director of newborn services at Deaconess Women's Hospital at Riley Hospital for Children in Evansville, IL:

The big babies, closer to term, are the majority, and they stay for the shortest amount of time.

If you would walk through the nursery on any particular day, you would have the impression the NICU is filled with premature babies because they stay a disproportionately longer amount of time.

Our daughter was not a preemie, she was a sick newborn diagnosed with PPHN, or Persistent Pulmonary Hypertension of the Newborn. She required supportive ventilation on a respirator because of high pressure in the lungs and ended up in the NICU.

Combing the Internet for Resources on Sick Newborns
It took me several days after our daughter was hospitalize in the NICU to find online resources for parents of sick newborns since most of the online resources, organizations and online groups are for parents of preemies. This was extremely frustrating for someone used to finding information quickly online.

Thankfully I stumble upon the helpful resources about Sick Newborns written by neonatologist, Dr. Jane E. Brazy and her colleagues at the University of Wisconsin. Over the years, these resources for Sick Newborns are ones that I continue to refer to for my NICU articles. The excellent resources are now being hosted by Meriter Health Services.

Sources
Keeling L. Near-term babies at the NICU suffer from deceptive weakness. June 11, 2007. Evansville Courier & Press.
Rubin R. 'Near-term' unease grows. USA Today. October 9, 2005.
Brazy JE. et. al. Sick Newborn Health. Meriter Health Services.

Image:
Matt & Janet Dustin. All her machines at the NICU. Creative Commons License.

PBS Special – Born Too Soon: Premature Births on the Rise

Why does the United States have so many babies who are born too soon?

Why does the United states have the highest rate of premature births in any of the developed nations of the world?

These are some of the perplexing questions the show QUEST* set out to answer.

At the time of the show’s production, QUEST’s Coordinating Producer, Amy Miller was 28 weeks pregnant with twins. Carrying multiples she is at a higher risk for her pregnancy, including possibly delivering her twins early, or preterm. (See the Quest blog for updates on her condition)

The QUEST team met with some of the San Francisco Bay Area researchers who are working in the field of neonatology to discover the reasons for the high rate of preterm births. They also explored some of the technology, research and cutting-edge medical procedures used to care for the most vulnerable newborns.

You can watch the Born Too Soon: Premature Births on the Rise program through the link below, or visit their website.

More NICU Photos:
Additional Photos from the series are available for viewing in Flickr, as you go behind the scenes with the production team, filming in a neonatal nursery.

• Separate Slides:
  http://www.flickr.com/photos/kqedquest/sets/72157600909152531
• Slide Show:
  http://www.flickr.com/photos/kqedquest/sets/72157600909152531/show

More about QUEST
KQED’s QUEST is a new multimedia series that looks at the people behind San Francisco Bay Area science and environmental issues. The program also explores how the work of these people is changing the way we live. QUEST is a production of KQED.

QUEST Television airs every Tuesday at 7:30 p.m. PST on KQED 9, KQED HD, and in vivid high definition on Comcast 709.

Sources:
QUEST. Born Too Soon: Preterm Births on the Rise. July 24, 2007. http://www.kqed.org/quest/television/view/465
Miller, A. Born Too Soon: Preterm Births on the Rise. QUEST Science Blog. July 24, 2007. http://www.kqed.org/quest/blog

Photo Source: Born Too Soon. Quest. 2007.

7/15 - Encouraging Message - Believe and Follow Your Aspirations

For NICU parents, trying to keep on believing and hoping that your NICU baby will be fine can be difficult. Lousia May Alcott's quote is a beautiful reminder to follow your highest hopes for your baby.

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

Photo Source: Manoel Silva. Clouds. Royalty Free Use

Leave a Zaky hand with Your NICU Baby - Providing Comfort When You are Not There

I think one of the most difficult things for NICU parents to do is to realize that they cannot stay with their NICU baby 24/7 and at some time you have to leave the hospital and your precious baby behind.

I discovered a wonderful product designed by a former NICU Parent that helps provide support and comfort to a NICU baby while you are not there - The Zaky®.

This product is an answer to the questions "What can I do to support my NICU baby?" I know we would have gotten one for our daughter had they been around at the time.

About the The Zaky®
The Zaky® was designed by a NICU parent, Yamile Jackson, who has a PhD in ergonomics & human factors engineering after her own NICU experience with her son Zachary in 2001.

The award-winning ergonomic, bonding, therapeutic positioning pillow was designed especially for premature babies that have to be left at the hospital away from their parents.

The special hand allows you to "leave a hand with a loved one" and "give your baby a hand" when you are not there.

By mimicking the shape, weight and touch of a human hand, the Zaky® provides comfort to NICU babies (and others) giving support and a sense of security. In the NICU setting, the Zaky® can be another helpful hand assisting with positioning.

Providing Comfort When You are Not There
Here is a list of some of the comforting benefits provided by this ergonomic, bonding, therapeutic positioning pillow.

• The size and weight simulates the hand and touch of the mother.
• It may be used on top, around and under the baby to provide boundaries (except on the face).
• Babies feel reassured as if someone is touching them, which assists in their need of feeling protected.
• It assists nurses and care givers as she can leave a Zaky® with each baby.
• Parents feel as they are leaving one hand with their baby, helping them feel more involved in the care of the patient.
• May be warmed in the towel warmer at hospitals and on the dryer at home.

In addition the Zaky® can be scented with the scent of mom, dad, or siblings. Scenting the Zaky® can provide a great deal of comfort and assist the baby's transitions to different environments in the hospital, in the car or once at home. The Zaky® is something constant and helps to reduce the shock many baby's experience with different lighting, scents, sounds, temperature, etc.

Uses - NICU and Others
The Zaky® has been used by mothers, fathers and family members, neonatologists, pediatricians, surgeons, obgyns, nurses, physical & occupational therapists, infant massage therapists, developmental specialists & ergonomists. It has been used in NICUs since 2001 and in homes and child care facilities since 2004.

In addition to being used in the NICU setting, the Zaky® is also being used to provide comfort in other settings:

• In hospitals for children and adults that have long hospital stays due to cancer, burn treatments and others.
• In child care centers and at home for children to use as a comforting security item.
  
• In hospitals to help position patients after surgical procedures.
  
• In nursing homes to provide comfort and a sense of security to seniors.

Oboz Program - Donate a Zaky® to Your NICU
This is a great idea. The Zakeez company has already donated over 2,000 Zakys to NICUs worldwide to help their sickest children. They donate the Zaky® to the hospital that you specify and all you have to do is pay for minimal administration fees, shipping and handling. You can donate a Zaky® to your NICU for $7.98.

More about the Oboz Program: http://www.zakeez.com/en/our_company/oboz_program.php

Research
The Zaky® has been presented at several conferences on"Human Hand Mimetic Comforts High Risk Neonates" and "The benefits of the Zaky for mothers, babies, and medical personnel." http://www.zakeez.com/en/our_company/research.php

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Ordering Information for NICU Parents:
I have included the prices when the blog was posted. The Zaky comes as a right hand or as a left hand.

• Order from the Zaky Website $ 49.95 (For a limited time they are doing a Buy 1 get the second at 50% OFF)
• Order from Mom4Life.com - $45.95
• Order from Type-A Mom.com - $34.97
  

From the Zaky site - Is there a difference between the Right and the Left Hand?

• There appears to be no difference for the baby.
• Right and left hands are offered because it looks more natural to have one of each if they are use on the same baby.
• Some parents have preferences--if they are right handed, they want a right Zaky, if they use their left handed, they want a left hand.
  
• Many parents choose to get the Zaky in the hand that they use the most to provide comfort for their baby, which may not always be their dominant hand.
  

More Sources:
Premature Benefits: http://thezaky.com/en/zaky/premature_benefits.php
Research: http://www.zakeez.com/en/our_company/research.php
Zaky Movie: http://thezaky.com/en/zaky/zaky_jjmovie.php

Photo Source: Zakeez

NICU Parent Pathfinder - Helping Parents Navigate the NICU

The NICU admission of a newborn is an enormously stressful time for the family on many levels. This is a my description of the NICU from an article published several years ago:

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. There is the constant worry about the child’s well-being, intensified when the parents are unable to be at the hospital around the clock due to other life commitments.

The logistics of daily visits can be particularly complicated and an additional hardship if the infant is hospitalized in another town. The experience can be distressing, overwhelming, and exhausting for parents, other children, and family members, creating a major upheaval in once normal daily routines.

NICU parents must quickly learn about their NICU baby's condition, treatment plan, getting around in a strange environment and then how to manage all of the pressures of this life-changing event.

The Children's Hospital of Illinois is making this process a little easier, by creating the new position of a Parent Pathfinder for their Neonatal Intensive Care Unit.

NICU Parent Pathfinders
Megan Mutti, a former NICU Parent, is Children's Hospital's first Parent Pathfinder for their Neonatal Intensive Care Unit.

In this new position, Mutti's job is to help NICU parents in understanding their baby's condition, care plan, and most of all "get acclimated to what is a strange and unique environment." She spends most of her time in the hospital's NICU mentoring and helping NICU parents adjust.

Additionally, she provides support to the NICU Family Advisory Board, a group of parents whose children “graduated” from the unit and advice to hospital officials.

I know it would have been very nice to have a Parent Pathfinder to help us find our direction during our NICU adventure.

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: 35-46. Abstract at: http://www.neonatalnetwork.com/nn3/Abstracts/nnmj05.htm#grieving Swiech P. New position will help parents at Children's Hospital. Pantagraph. July 5, 2007. http://www.pantagraph.com/articles/2007/07/05/news/doc468d39c9d9bf5436719302.txt
Children's Hospital of Illinois. Neonatal Intensive Care Unit (NICU). 2007. http://www.childrenshospitalofil.org/programs/inpatient/nicu.htm

Photo Sources:
Melodi T. Hospital Walkway. Royalty Free Use.
Pixel Pusher. Directions. Royalty Free Use.

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.

NICU Parent Support Site Recommended on the Mom 4 Life blog

We are pleased to be a Featured site on the Mom 4 Life blog. Heather called the NICU Parent Site and blog a great resource and recommended the site to parents with babies in the NICU.

A special thanks to Heather for helping spread the word about the NICU Parent Support Site.