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Announcing the Date of Upcoming NYC ‘Tinis for Preemies Gala!

At our latest ‘Tinis for Preemies event, we will recognize the contributions of honorees in the prematurity community!
 
We’re hosting our 2017 NYC ‘Tinis for Preemies evening on November 9 at The Glasshouses in the Chelsea Arts Tower in Manhattan! 

Our annual gala-style event draws corporate and individual supporters, specialists in the NICU field, preemie parents and others affected by premature birth who are driven to further the Graham’s Foundation mission of providing support, advocacy and research for premature babies and their families.

“These signature events are more than just fundraisers,” said Graham’s Foundation president Nick Hall, who founded the organization with Jennifer Hall after they experienced the birth of premature twins at just 25 weeks before facing the trials of the neonatal intensive care unit and the loss of one child.

“While attracting support for the mission is obviously a primary goal of our ‘Tinis for Preemies series, these special evenings also represent an opportunity for those whose lives have been touched by premature birth to connect with one another and to give back.”

Additionally, the ‘Tinis for Preemies gala provides a platform from which to debut each new year’s honorees. The HOPE and MIRACLES Awards honor and raise awareness of the work of medical professionals, researchers, philanthropists, and others making a difference in the lives of families with preemies.

This year’s MIRACLES Award Honoree is Heidelise Als, founder of the Newborn Individualized Developmental Care and Assessment Program, and the organization’s HOPE Award Honoree is NICU family-centered care champion Liza Gene Cooper. Their contributions will be showcased and celebrated at the event.

“Supporting change makers like our 2017 honorees is crucial to the evolution of preemie care, in and out of the NICU,” added Hall. “In recognizing the important work of honorees we aim to raise awareness of not only the impact of prematurity, but also the need to increase funding and research into improving outcomes for future preemies and families.”

To learn more about the 2017 Tinis for Preemies gala or for sponsorship information, visit http://grahamsfoundation.org/events/tinis-preemies.

A Recap of 2017’s Golfing for Graham’s Foundation Day on the Green

Our 4th Annual Golfing for Graham’s Foundation fundraiser was a hole in one! Twenty-six sponsors supported the cause and raised over $134,000 to help us fulfill our mission of supporting parents of preemies at every stage of the journey.

“Mother nature took good care of us once again,” said Graham’s Foundation President and Founder Nick Hall. “The weather was beautiful, and we had a full field this year that included longtime supporter and board member Chris Becker from Bionix, who made a special trip to join us. We also had numerous players whose lives have been personally touched by premature birth so it was an especially meaningful event on a lot of levels.”

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Preemie Moms Talk About When They Felt Like Parents

Your role as a parent in the NICU is unique and irreplaceable, but it doesn’t always feel that way. When your preemie is ill, it can seem like it’s the doctors and nurses who are playing the number one role in your baby’s life while you watch from the sidelines. Many parents of preemies feel like anything but parents during the NICU days. Even now when more NICUs are implementing family centered care models that are designed to include parents, it’s easy to feel left out.

But even when you can’t be there night and day because you need to work or have other children to care for, remember that parents of preemies are vital! You love your preemie and know them best. Assisting your preemie’s care team as they do what looks like the heavy lifting will not always feel like parenting, but understand that everything you do is just as important, if not more so, to your preemie’s health and wellbeing.

And if you don’t feel like a ‘real’ parent from day one, know that you’re not alone. We polled our community to find out when moms of preemies really felt that parenthood connection and for most of our respondents, it took some time!

preemie parents

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Tips for Handling a Long Distance NICU Journey

This post was shared with us by preemie mom Serena, one of our Preemie Parent Mentors. To share your own story or advice to help new parents of preemies cope with the reality of premature birth, click here.

For all of us preemie parents, the birth of our child(ren) did not go as expected, nor as planned. For a much smaller portion of us, this journey began hundreds or even thousands of miles away from home. Having a preemie close to home is already challenging… How do you cope with this difficult situation AND do it far away from home, family, friends, etc.?

Each experience and family situation is different, of course. Some of us leave behind work, other children, a husband, home, etc. for the entire period we are involved in a long distance NICU journey. We have not only been thrown into these unfamiliar hospital surroundings, but we also have no place to call home while we are stuck there. Some preemie parents, if close enough to do so, drive long hours each day to get to a preemie’s bedside… and some stay in hotels, while others stay at helpful organizations like the Ronald McDonald House.  

In 2011, I was traveling for work, on my flight home when my water broke on the plane. I live in California, but Houston, Texas is where I resided for the next two months after my son was born at 24W3D, weighing 1lb 7oz. My husband and I were lucky enough to stay at the Ronald McDonald House, and worked remotely as much as possible.

We had no other children, so this new, super tiny baby was the only thing we focused our time and energy on other than putting in some work hours in the hospital break rooms and in our home base at the Ronald McDonald House.  

Being one of the long distance NICU parent mentors for Grahams Foundation, I often get asked by parents how they can handle this situation. Unfortunately, there is no correct answer.  I do wish I had known about Graham’s Foundation’s support programs back then, because it would have been nice to have been able to reach out to a parent who had been through something similar and could help get me through the journey. But in the end we did what we had to do to get through it.  All you can do when you’re far away from home is what any parent in this situation does: take it day by day.

We may not have our home, familiar belongings, family or friends to get us through it, but when you really think about it, all we really need is time, hope, and love to get us through this journey… no matter where we are!  

We have to be our babies’ advocates, and their “continuity” of care is huge no matter where we call home. Eventually, our perseverance pays off!

 

Parents of Preemies Talk About Their Introduction to the NICU

Recently, on Facebook, we asked parents of preemies a simple question: did you know the NICU before your baby was admitted? As in, did you know where and what the NICU was? Was it part of the prenatal hospital tour? Did your care provider talk about premature birth and the possibility that your baby might spend time in the neo-natal intensive care unit? Overwhelmingly, the answer was NO.

Surprising? Not really. Maybe it’s to avoid scaring pregnant women who already have so much to worry about, but we’ve found that very few mothers and fathers are informed of the possibility – or even the fact of – premature birth and what could happen after an early birth. Preemie parents of multiples tend to get more information about the NICU during pregnancy but even then, it can be cursory.

We’d love to know what your experiences were – do any of the below responses to our informal poll resonate? We got a lot of simple nos in response to our question but some parents chose to elaborate and we’ve shared some of their answers here.

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