Hand to Hold

Click here to view this message as HTML in your browser.

Hand to Hold Header
SUPPORTER UPDATE - OCTOBER 2013

Why NICU Families Need a Bill of Rights

Kelli with Nurses in BackgroundIt’s October. Stores around town are decorated with spiders, and spooky pumpkins are beginning to light up front porches in my neighborhood. My kids are excited about their new costumes and soon cute little ghosts and goblins will knock on our doors. I remember well my little pumpkin's first Halloween which was spent in the Neonatal Intensive Care Unit. I can truly say it was the most frightening Halloween of my entire life as I worried about my son's prognosis and how I would be able to meet the needs of my medically fragile baby once he came home.

That's why it is so important to me to advocate for preemie and NICU families to reduce the fears new parents face and encourage dialogue with the medical professionals who play such an important role in helping NICU families during and after their child's hospital stay.  To this effect, Hand to Hold participated in the development of the NICU Parent's Bill of Rights, a list of ten essential rights that all NICU parents should expect during their child’s NICU stay, that was recently unveiled by the Preemie Parent Alliance at the 2013 National Association of Neonatal Nurse's conference. 

NICU Parent's Bill of Rights

  1. My parents are my voice and my best advocates; therefore, hospital policies, including visiting hours and rounding, should be as inclusive as possible.
  2. In order to be prepared to meet my needs when I am discharged, my parents need to understand my medical diagnosis. Be patient and teach them well.
  3. Bonding is crucial for my development. Allow and encourage my parents to hold me as often as possible.
  4. Help prepare my parents to be my primary caregivers when I go home. Encourage them to participate in as much of my daily care as possible.
  5. Feeding helps my parents feel "normal." Please allow them to feed me by bottle or breast, whichever is working best for me and my parents. Help reassure my mom it's okay if she doesn't produce milk.
  6. If I, or one of my siblings, pass away while in the NICU, remember to continue to refer to us as multiples (twin/triplet/quads, etc.). It is important to my parents that you continue to honor and acknowledge each of our lives.
  7. Athough I may be a late-term preemie, the NICU can still be a very traumatic place for my parents. Ensure they receive just as much TLC, information, education and as many resources as the parents of my micro-preemie friend.
  8. Encourage my parents to attend care conferences and schedule them regularly. They are a vital component of Family-centered care and they help educate my parents about my progress and long-term prognosis.
  9. My parents have the right to know all about me. Let them have open access to my medical records and encourage their questions.
  10. My parents are experiencing a range of challenging emotions. Please be patient, listen to them, and lend your support. Share information about resources such as peer-to-peer support programs, support groups and counseling, which will help reduce PTSD, PPD, anxiety and depression.

The Preemie Parent Alliance, an organization representing preemie support organizations, developed this document to help address and break down barriers that often prevent NICU parents from bonding with their baby and playing an active role in their daily care. In order to care for a medically fragile infant after the NICU, parents must feel empowered, competent and capable of being their baby’s advocate and caregiver. Therefore, they must be encouraged and supported throughout their baby’s NICU journey.

It is our hope that the NICU Parent's Bill of Rights will help bring awareness to the best practices of Family-Centered Care so families are better prepared for life after NICU. We encourage yout to print and share a copy of the NICU Parent's Bill of Rights with your NICU. And while we can't change the outcome of what is hands-down one of the most scary times in our lives, we can ensure that no one has to go through it feeling lost, confused and alone at Halloween or any other time of the year.

With Appreciation,

Kelli Kelley Signature 
Kelli D. Kelley
Founder and Executive Director

More Good Stuff

5 Things Parents Need to Know About RSV

VirusErika Goyer explains 5 things every NICU parent should know about RSV including risk factors, how the virus is spread, symptoms, treatment and when RSV season occurs. Learn more about how to protect your NICU graduate from severe complications from this virus.

Social Security Disability Benefits for Your Preemie

Business BabyDoes your preemie or NICU baby qualify for government benefits, like SSI? Samantha Pridgen was able to secure assistance from the U.S. government for medical bills and shares some great resources for other parents looking to do the same.

"I Understand;" Offering Comfort to a Hurting Heart

Alison Epps and her sonAlison Epps reminds us all that "our body language, our actions, and our words can have a profound effect on others, especially when they are hurting." What have you done lately to help someone in need of some comforting words? 

Finding Someone Who Understands How Hard the NICU Experience Is

Courtney and her sonWatching a vulnerable child during a NICU stay is emotionally draining and difficult whether your child has many complications or just a few. Courtney's son Jackson was born at 27 weeks and was in the NICU for 79 days. She contacted Hand to Hold to find a mentor to support her through the emotional roller coaster. She was matched with Jessica, mom to Isaac who was born at 28 weeks gestation. Despite the early birth, both boys had very minor complications and are both doing well. Both moms were glad to have found the peer support they needed to give back, find hope and heal.

Join Team Hand to Hold in the 2014 Austin Marathon

Dave with JadaAre you a runner and are you passionate about helping us support more NICU families in honor of amazing, resilient children? Join Team Hand to Hold at the upcoming Austin Marathon, Half Marathon to be held February 16, 2014. Run for the cause and help us raise awareness and funding to benefit families of NICU babies. 

What Does It Take to Be a NICU Hero?

Dr. ClearyThe NICU Heroes Award, sponsored by Hand to Hold and Mead Johnson Nutrition, announced the winner as Dr. Gerard Cleary, a neonatologist at Abington Memorial Hospital in Pennsylvania. He was nominated by Jennifer Binkley, NICU mom of 23-week twins, who shared her story of Dr. Cleary's compassionate care for her and her twins following their early delivery and NICU stay.  

Connect With Us

Like us on Facebook! Follow us on Twitter!Watch us on YouTubePin us on PinterestSubscribe to our Blog

Receive Support

Join our volunteer list

Vote for Your Favorite Preemie Power Entry

Preemie Power, Hand to Hold's Photo and Essay Contest, is going strong! We have almost 200 entries from 37 U.S. states, Canada, Ireland and the United Kingdom. If you are looking for some amazing inspiration, I hope you will visit the contest site, vote, share a supportive comment and be inspired by the families and precious children and how far they have come! Voting ends Nov. 1.

Preemie Power 2013

NICU Tour Video for Siblings Has Arrived

NICU Tour for Siblings

FB Chat: The Many Shades of the Baby Blues

postpartum depressionHand to Hold will hold a Facebook Chat on its Facebook Wall coming up on Nov. 21 at 11:30am CT with Neonatologist Dr. Sue Hall. We will discuss the obvious signs and symptoms of postpartum depression as well as the not so obvious ones. Learn how to move past this debilitating force and find the support you need. Watch for the archive of the October 23 FB Chat about RSV, Cold & Flu Season coming soon! Read more.

Visit Our NICU Parent Forum!

Life After NICU Powered by Hand to Hold

Become a Helping Hand Peer Mentor

Mom holding a preemieVolunteer to support a fellow NICU parent no matter where you live. Most support is provided via email or phone. Go through training online, submit a quick background check and receive support throughout the process from our Family Support Navigators.

Thanks to Our Superior Strength Preemie Power Sponsors!

Enfamil

St. David's Healthcare

Preemie Power Super Heroes

JennaMeet 2-1/2 year old Jenna who spent 64 days in the NICU after her early birth at 32 weeks due to preeclampsia. Mom shares, "My husband and I laughed and cried and celebrated her milestones. We decorated her little isolette with Christmas lights. She was the only baby in the NICU for Christmas. My husband’s wedding band fit around her tiny wrist. Jenna came home in January and thrived every day after." Be inspired by more Preemie Power Super Heroes from last year's contest.

For Healthcare Providers

MilesHand to Hold offers two resources exclusively for NICU health professionals. First is Hand to Hold's NICU Resource Library, a collection of educational materials available by subscription for NICU families in English and Spanish to complement Family-Centered Care practices. We also offer brochures, posters, newsletters and fliers to help healthcare professionals connect families to the free support Hand to Hold offers. 

Past Issues

Read more Hand to Hold Supporter Updates.

   About Hand to Hold
Hand to Hold logoHand to Hold is a 501(c)3 nonprofit organization providing comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications. 

Hand to Hold - www.handtohold.org - 855-H2H-NICU

Click here to forward this message.

Click here to change your email preferences.

]]