Friday, May 22, 2009

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.


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.


Sunday, May 17, 2009

Encouraging Message: Trust Yourself.

The words from one of America's most beloved Pediatricians and author, Dr. Benjamin Spock helped to empower generations of parents. His book Baby and Child Care was published in 1946 and became one of the biggest best-sellers of all time.
Trust yourself.
You know more
than you think you do.


Dr. Benjamin Spock
His message, which was revolutionary for the time, provides encouragement for NICU parents even today.

"Trust yourself" is a very helpful reminder for parents and a gentle aid for parents during troubling time. His simple message "Trust yourself. You know more than you think you do" can even be used as helpful mantra for worried NICU parents.

Image: Armin Hanisch. I wanna hold your hand. Royalty Free Use.

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.

Monday, May 11, 2009

NICU Family Support from the March of Dimes

For NICU parents who have the a NICU Family Support Specialist from the March of Dimes present in their hospital, this support person can be an invaluable aid in helping them get adjusted to the NICU.

NICU Family Support was developed to provide information and comfort to those families in crisis. The program is built on a family-centered philosophy and is implemented nationwide through March of Dimes chapters.

This video clip from the March of Dimes describes more about the role of the NICU Family Support Specialist.



You can check the March of Dimes website to locate your local March of Dimes Chapter.

Thursday, May 7, 2009

The Forgotten NICU Grievers: Fathers, Siblings & Gransparents

Whenever a newborn gets admitted to the NICU, many people are affected by the unexpected admission. The baby's parents are often the first people who come to mind, Mom and then Dad, but there are other people impacted as well and may be feeling the many NICU losses.

Other family members that need to be considered are the siblings and grandparents of the NICU baby. Fathers, siblings and grandparents are often the Forgotten NICU Grievers, those feeling the impact of the NICU admission as well as the mother, but often overlooked.

Most of the literature looks at Forgotten Grievers as the fathers, siblings and grandparents when a death occurs. I am looking at Forgotten NICU grievers as the fathers, siblings and grandparents who are grieving the many losses that occur with a NICU admission.

Fathers
Because of the way that men are raised and socialized in our society, men are taught that they need to be strong, to be the "rock" for the family, to attend to practical matters, but not show any emotion and not grieve losses.

NICU Fathers may be left wondering...

When is it my turn to cry? I'm not sure society or my upbringing will allow me a time to really cry, unafraid of the reaction and repercussion that might follow. I must be strong, I must support my wife because I am a man. I must be the cornerstone of our family because society says so, my family says so, and, until I can reverse my learned nature, I say so.
It is easy to see how fathers' grieving losses, like a NICU admission, may regard themselves as "forgotten NICU grievers" or "second class grievers." Friends and family may readily acknowledge that the mother is grieving the loss, but figure that the father is handling it, so not acknowledge that he is grieving as well.

Siblings
Siblings need to be considered, because their schedules have been disrupted. Older brothers and sisters may be sent to stay with grandparents, aunts or uncles, while their parent or parents are in the NICU tending to the baby.

Children can grieve a change in schedule and may have difficulty adjusting to a baby in the NICU. We were fortunate with our oldest in that she did not act out that much during our NICU Adventure. She had been looking forward to having the baby, so was upset when the new baby didn't get to come home right away.

As our youngest started getting better, we were able to take our older daughter to the hospital with us, which made it much easier to deal with the situation.

The main issue in our case was that, try as I might, I was unable to find a book that was appropriate for having a baby in the NICU who wasn't a preemie and would be coming home soon. The book resources at the time focused on premature babies only and babies who were dying or died in the NICU.

Grandparents

Grandparents are very frequently overlooked as forgotten grievers, when a baby gets admitted to the NICU. They are also in the unique position of "doubly grieving" or experiencing "double pain" with a NICU admission. Not only do Grandparents have to manage the pain of a grandchild being in the NICU, they also have to manage the pain of watching their adult child grieving his or her own losses, when that child gets admitted to the NICU.

Grandparents are "forgotten grievers", often not considered part of the immediate grieving family.

I was amazed by how much my daughter's NICU admission impacted my own father. He continued for many years after her hospitalization recounting and remembering how lucky we were that everything had worked out as well as it did. It may have been more difficult for my father than my mother when my youngest was in the NICU, because he did not visit her while she was in the NICU.

Helping the Forgotten NICU Grievers
Key to helping the forgotten NICU grievers is to consider all of the members that may be impacted by a NICU admission parents, siblings, grandparents and even extended family like cousins, aunts an uncles.

Finding ways to get the other family members involved can be helpful. They might be able to run errands, watch siblings, answer phone calls from friends, set up a website like CarePages or Caring Bridge to keep everyone informed.

Resources

Dyer KA. 2007. For Those Who Hold the Littlest Hands. NICU Parents Support.

More about Forgotten Grievers
National SIDS Resource Center 1997. Fathers -- The Forgotten Grievers. The SIDS Network of Kansas, Inc.
AtHealth.com 1997. The Death Of A Child - The Grief Of The Parents: A Lifetime Journey. National SIDS Resource Center.
Heavilin M. Siblings, The Forgotten Grievers. Redlands Chapter of the Compassionate Friends.
O'Grady T. 2009. The forgotten grievers. Comments. Tribune.ie
O'Grady T. 2009. Forgotten grievers: an exploration of the grief experiences of grandparents. Letters to the Editor. Offal Express.

Images: Horton Group. Meeting the New Baby. Royalty Free Use.
Pierre Amerlynck. Old Couple. Royalty Free Use.

Tuesday, April 28, 2009

NICU Newborn and NICU Parent Candle Lighting and Blessing


Give light, and the darkness will disappear of itself.

Erasmus

One of the most powerful healing images is that of a single candle illuminating the night, one tiny flame serving as a bright light in the darkness.

The Candle lighting blessing for NICU babies was modified from the healing blessing that we used for my daughter's NICU adventure. The Candle Lighting Blessing for NICU Parents was adapted from a New Year's Blessing that I wrote many years ago for my girlfriends.

A Candle Lighting Blessing for NICU Newborns
I light this candle for my baby
so that he/she might see
a light illuminating the darkness.


I light this candle for my baby
so that he/she might know
the many people who love him/her.


I light this candle for my baby
so that he/she might sense
the many thoughts and prayers.


I light this candle for my baby
so that he/she might feel
a healing presence.


I light this candle for my baby
so that he/she might discover
his/her own strength.


I light this candle for my baby
so that he/she might find

a cocoon of comfort until your body heals.


A Candle Lighting Blessing for NICU Parents
I light this candle for illumination
so that I might
find my way through the darkness.

I light this candle for hope
so that the
present moment
is less difficult to bear.


I light this candle for strength
so that I can make it though
the life challenge.

I light this candle for understanding
so that I find the insights
to make wise decisions.

I light this candle for courage
so that I may be able to
accept whatever is beyond my control.

© 2009 Kirsti A. Dyer

More about Lighting a Candle

Dyer K. 2009. Light a Candle for Hope or in Memory Online. NICU Parent Support Blog.
Dyer K. 2008.
Create a Candle Lighting Ceremony: Candles Can Help to Focus, Reduce Stress or Remember a Loved. Suite 101.
Dyer K. 2000. Light a Candle for Hope in the New Year. Journey of Hearts.


Images:
Mario Trejo. Light of Hope. Royalty Free Use.
Dani Simmonds. Candle. Royalty Free Use.


Monday, April 27, 2009

Grieving for Babies - Grieving for NICU Babies

Grieving for Babies is an online web resource that provides guidance for grieving families and NICU providers.

Developed and produced by
by DIA Productions in collaboration with SHARE Pregnancy & Infant Loss Support, Washington University School of Medicine, St. Louis Children's Hospital and Stepstone Productions, Grieving for Babies offers resources for parents and professionals.

Programs from Grieving for Babies
Grieving in the NICU: Mending Broken Hearts When a Baby Dies - For Families This program is directed towards the needs of grieving family members. The DVD includes a 70-minute chaptered video addressing topics of the initial shock and intense grief, carrying on with life, the grief of siblings and grandparents, and the role of chaplains throughout the bereavement process.

Grieving in the NICU: Supporting Families and the Health Team When a Baby Dies - For Providers
This program is designed to help health care professionals play an integral part in the lives of parents faced with the death of a baby.

I am signed up to take the Grieving in the NICU Supporting Families and the Health Team for continuing education units. I will keep you posted as to the results of taking the course.

For More on Grieving for Babies see their website.

Sunday, April 26, 2009

Encouraging Message: Picking Up the Pieces

Many NICU Parents experience broken dreams as part of the birth of their baby. Their initial dreams of a normal birth with a healthy child have been changed and NICU parents have to quickly adjust their reality to include having a child in the NICU.

This quote by artist and writer Flavia is a helpful encouraging message to NICU Parents to pick up the pieces:
If one dream should fall and
break into a thousand pieces,

never be afraid
to pick one of those pieces up

and begin again.


You can hear more about picking up the pieces by listen to the NICU Podcast or read the transcript that I created on "Dreaming New Dreams after Picking up the Pieces of Broken Dreams" at the NICU Parent Support Audio & Podcast Channel.

Image: Scott Snyder. Stained Glass. Royalty Free Use.