Desinee and Amy: The Comfort of Knowing You’re Not Alone

Evan, Photo courtesy Dwyer Familyby Amy Carr, Helping Hand Peer Mentor

“Fortunately, not everyone knows another parent who has spent time in the NICU. Unfortunately, when you are that parent, you need someone who has been there to answer your questions and remind you that the feelings you feel are normal,” shared Desinee, a parent who was matched with a Helping Hand peer mentor from Hand to Hold. “The NICU can be a lonely place even when you have the support of friends and family like we did. You still feel alone because no one else quite understands what you are going through. Hand to Hold matched me up with someone who understood the ups and downs and who had been where I was. She’s been an amazing resource and shoulder when I’ve needed it.”

Desinee is the proud mother to Evan who was born at 31 weeks and who spent 26 days in the NICU. They were fortunate to have a relatively uneventful NICU stay and her son has thrived since coming home. I was matched with Desinee because she had a very similar experience to my own. My daughter, Ella,  was born at 35 weeks almost 7 years ago. Her early birth was a complete surprise and unexpected complications led to her 10-day NICU stay.

The experience of having a child born early and their subsequent hospital stay remains with parents like us for longer than most of our friends and family realize. It takes time to work through all that and realize that the complicated “stew” of emotions NICU parents like us face are completely normal. It was a trauma, afterall!  Healing takes time, but it does come.

I was so honored to be able to support Desinee during part of her NICU journey after she brought her son home. Sharing our mutual experiences and feelings was helpful for us both. Even though I didn’t know anyone who had a baby born early when my child was in the NICU, I appreciated the opportunity to lend a helping hand to a fellow mama – if nothing else to let her know that “Yes, I know exactly how you feel!”

 

Do you need support from another parent who has been there? Contact us today. Click to learn more.

Are you a new parent with a baby or babies in the Neonatal Intensive Care Unit? Have you recently experienced a loss? Are you a direct caregiver or grandparent of a preemie?  We welcome your call at any stage of your journey from bedrest or as other complications arise during pregnancy, after the birth of a baby or multiples born premature, during or after a baby’s NICU-stay, after a diagnosis of a child’s special health care need, or in the event of a loss. We want you to know that you are not alone, and peer-to-peer support is available no matter where you reside.

Contact Hand to Hold

By phone: Call us  at toll-free 855-424-6428  or locally 512-550-3181

Email: Erika [at] handtohold [dot] org

Form: Submit a form to receive assistance

 

 

 

 

 

 

Hand to Hold, a 501(c)3 nonprofit, provides 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, a 501c3 nonprofit, provides 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. Read more about Hand to Hold.

Preemie Parents Share the Power of Peer Connections

Preemie parents describe their experience with having a child in the NICU and how relationships they have formed with fellow preemie parents have made all the difference. If it has been 2-3 years since your child’s NICU experience and you’d like to be matched to support another family, please contact Erika Goyer. If you think you could benefit from support, call us toll-free 855-424-6428  ext. 1 or email Erika Goyer, family support navigator and fellow preemie parent. Having a baby in the NICU for any length of time can be traumatic and isolating. We want you to know you are not alone and we are here to help.

Feeding Tube Awareness Foundation

Interviewed by Erika Goyer, Hand to Hold’s Family Support Navigator

Making the decision to tube feed is never an easy one. Tube feeding is frequently associated with gravely ill adults, not as a way to help children get the nutrition and hydration they need to be able to grow, thrive, and develop. And tube feeding can be a scary prospect for parents, but it doesn’t have to be. Thanks to moms Traci Nagy and Laura Wagner.

Never Underestimate the Power of Parents

Harmony getting a bolus feeding, Courtesy of FTAF

Harmony getting a bolus feeding, Photo Credit: Wagner Family/FTAF

Traci Nagy’s son, Lucas, received his first feeding tube in August 2008 at two months of age. She wasn’t satisfied with the resources available to new parents on tube feeding and the general lack of awareness among the general public of the benefit tube feeding can have to medically complex children like her son. In June 2010, Traci launched the “Let’s Get a Tube Fed Child on Sesame Street!” campaign on Facebook. In October 2010, she galvanized an effort to create Feeding Tube Awareness Week which resulted in creating the organization, website and Facebook support page.

Laura Wagner’s daughter, Harmony, has had a feeding tube since she was born in June 2009. Laura has been an advocate for creating awareness through her blog and her group on Babycenter.com, Special Needs and Medically Complex Kiddos. She pushed to make the Feeding Tube Awareness Foundation a non-profit organization.

A Movement is Born

Feeding Tube Awareness was founded in 2010 as a means of supporting parents of tube fed children and raising positive awareness of tube feeding as a life-saving medical intervention. Tens of thousands of infants and children are able to live, grow and thrive because of tube feeding.   The organization is dedicated to providing parents and caregivers with practical information needed for day-to-day life with a tube-fed child. In addition, FTA strives to raise positive awareness of tube feeding as a life-saving medical intervention, so that children who are tube fed enjoy increased acceptance in society and parents have greater support in their care. Traci and Laura want tube feeding families to know that they are not alone, even though they can sometimes feel like they are.

I Love a Tubie

The group’s logo “I heart a tubie” sums it up nicely. It is a symbol of embracement and empowerment for families faced with a child whose medical conditions require tube feeding.

Feeding Tube Awareness Week is the second week in February each year! 

To get I Love a Tubie apparel and find out more about Feeding Tube Awareness Week visit the “Raising Awareness” page.

The Mission of the Feeding Tube Awareness Foundation

  • “Provide medical type information in language that sleep-deprived parents can understand. That’s why we also have how-to videos made by parents
    G-tube, Photo courtesy of FTAF

    G-tube, Photo credit: FTAF

  • Make tube feeding feel less scary and overwhelming. I have seen parents go through great lengths (often at the expense of their child’s health) to avoid tube feeding. Children need enough calories and hydration to live, grow and thrive. If they are unable to do it on their own, a feeding tube can help make sure they are getting what they need during critical stages of development. Children and parents quickly adapt to tube feeding and it becomes second nature just like everything else.
  • Change public perception of feeding tubes as being for the elderly at end-of-life. Public perceptions do not match the reality so many tube feeding families have. Tube fed children often don’t look sick. Children can reach their potential because they have the nutrition they need. Tube feeding can mean life is possible.
  • Show parents they aren’t alone. It is pretty easy to feel alone when you have never heard of tube feeding a child or met anyone with experience. But, there are hundreds of thousands of children who are, or have recently been, tube-fed in US alone. There are more than 5,400 parents, caregivers and supporters on the FTA facebook page and growing.”

If You are Considering a Feeding Tube

If you are faced with the decision to tube feed, here are some questions to consider:

  • Is my child safely able to eat and drink enough to grow and develop appropriately?
  • Will my child be able to catch up on necessary weight gain on his own?
  • Is my child using too much energy to eat and drink?
  • Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?

Join the Cause

Visit their website www.feedingtubeawareness.org or contact them through their contact page.

Feeding Tube Awareness’ facebook group offers real-time support and knowledge sharing among thousands of parents and supporters.

You will find a wealth of information, resources, and inspiring stories.

Hand to Hold especially loves the information page created to educate friends and family about feeding tubes and how they can support the families who use them!

photo courtesy FTAF

Photo credit: FTAF

Let’s Spread the Tubie Love!

Site last updated March 21, 2017 @ 2:17 pm