Friday, August 5, 2011


Would you really believe that there are a lot of perks that come with having a 29 week preemie born with a congenital heart defect and a rare liver disease?   Well, besides the fact that Claire is ONE SPECIAL GIRL, I have actually found that there are so many blessings in disguise that come with a special child like her.  I could go on and on for days about the perks of having Claire as our daughter, but I think I pretty much usually cover that in my daily posts! 

The perks I am talking about today are from different foundations or websites that offer wonderful, comforting, exciting things for children like Claire.  I have found most of these websites through other heart mom blogs and I am excited to share them with other mom's of preemies, babies with birth defects, children with chronic illnesses, etc.  I also want to share them with everyone else to show you just how much people care about these children and their families.  When you have been through a life changing experience like our family has this past year, it's so comforting to know that people care and recognize how much strength and courage it takes.  Especially for the children!

So here are a few of the perks I have found for Claire:

The first website is Inspiration Through Art ( which was formerly known as Littlest Heroes Project.  ITA/LHP is a non-profit organization dedicated to empowering young people to give back, and make a difference through the beauty of art.  I had seen 2 of the liver families that we have met publish pictures with the title of Littlest Heroes Project.  At first, I just thought it was a photo shoot they had done themselves.  But then I realized it was an actual "project".  So I went to the website and applied for Claire to have her Littlest Heroes photo shoot. 

(PS - the little boy in the bottom left corner with the red cape on is Joe.  His mom and another liver mom started the foundation PLaiD that I talked about in an earlier post and have been super supportive to our family with Claire's liver issues.)

What the poster says is :  "Do you know a HERO?  Do you have a child or know a child  who suffers from a serious illness or life altering disability?  Would you like to help share their inspiration story with the world?  We can help!  Inspiration Through Art is a non-profit based organization founded in 2008 made up of professional photographers worldwide who provide free photo sessions to our littlest heroes!  The entire family is welcome to participate in these special sessions catered for each hero!  We are here to help bring awareness to the challenges these amazing children face every day.  To sign up or learn more about what we do and the programs we offer please visit our website."

So Claire was approved for the free photo shoot!  They then sent us a list of photographers in NC who participated in this project.  After looking through all of the photographers in our area, I tried contacting one that I really liked, but never heard back from her.  This may sound unfortunate, but trust me, I am so glad it happened that way! 

I pulled the list back out this week to see if there were any other photographers in our area that I liked their websites and work.  I happened to see one that said she serviced the Coastal SC, Columbia, SC area, Greenville, NC area, Atlanta and Savannah, GA areas.  For sure she meant Greenville, SC and not NC.  But hey, what the heck!?  I emailed her anyway because I LOVED her portfolio on her website!  Yes, she looked like she was mainly a wedding photographer, but I figured it was worth a shot.  Erin emailed me back literally within like the next hour!  The list was right - she did service the Greenville, NC area because her parents live there!  YAY!!! 

Erin and I have corresponded via email all week and she has made us some very generous offers.  She came up with the idea of photographing Claire's first birthday party.  How neat will that be?!  I had been worried about trying to capture the party while also trying to "be" at the party with Claire.  So this solves that problem!  But here's the catch - Erin lives all the way in Florida and has offered to come all the way to Rhems, NC to photograph our hero's first birthday part.  Seriously, what more could I ask for? 

Here are a few words from Erin:

I have two rules about photography:

1. You should love your photos. Who cares what the photographer wants?! These are YOUR photos! I want to work with you to insure you are always relaxed & excited about the photos we are creating together.
2. You should love your photographer. Photography isn't just about the final product, it's also about the process!! I want you to have as much fun creating these photos as I do, so I always strive to make each photo shoot fun, friendly, and full of energy. My goal is to make your unique character & charisma shine through every shoot. 

Communication is extremely important to me, so please contact me if you want to chat or ask questions!! Call, email, write a letter - whatever!! I'll be coming up to visit for Claire's 1st Birthday and I'm looking forward to meeting the amazing people who love this incredible girl. 

Erin McCoy (Photography)
75500 Clyde Higginbotham Rd. 
Yulee, FL 32097
(office) 904.849.7294

Not only has Erin offered to come all the way from Florida to document Claire's first birthday in October, she is planning to come up and stay for a few days with her parents.  While here, she is hoping that some of our friends and family might want their own photography session with Erin!  She is willing to basically do whatever kind of session you would like - family, maternity, newborn, engagement, whatever....  Her normal charge for these sessions are $250 - but for friends of Claire, she is offering to do your session at only $150!  That's a $100 discount!  PLUS any orders of your prints over $300, she is willing to offer at 10% discount!  SERIOUSLY PEOPLE!!!!  Please, please take advantage of this.  For all of those times you said you wanted family portraits done, now is the time!  Not only are you supporting Erin, you are supporting Claire and this great cause. 

We are hoping to plan Claire's birthday either the first or second Saturday in October (leaning more towards October 8th) so Erin is hoping to be in town around then.  You don't have to be in New Bern to take advantage of this offer.  I believe Erin is willing to travel around the area, maybe even the state while she is here........   If you are interested, please contact Erin and let her know Claire sent you!

PS - if you are a photographer ( you don't have to be a professional), you can go to their website to sign up to participate in this project too!


Speaking of Claire's birthday, I was also wondering what kind of cake to get for her.  I mean, at one year old, she will probably not remember her cake or even really realize what it is.  But... you only turn 1 once, right?!  ;)

So I found the website called Icing Smiles (  The mission of Icing Smiles as a non-profit organization is to provide custom cakes and other treats to families impacted by the critical illness of a child.  They understand that the simple things, like a birthday cake, are luxuries to families battling an illness.  Their goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time. 

While thankfully Claire is not going through her most difficult times during her first birthday, she has definitely had her share this past year.  I applied to see if Claire qualified for a free birthday cake and of course, she did!  How awesome is that!  Icing Smiles basically collects the information from the parent and contacts a local baker in our area that agrees to bake the cake for free.  You have the option of getting just a regular cake or the child's "dream cake."  They only get one dream cake for free.  Naturally, I asked to have Claire's cake be a dream cake.  Why wait, right?  So we are working on this and hoping to get it lined up soon to have a dream cake delivered for Claire's first birthday courtesy of Icing Smiles!!

PS - if you are a baker (don't have to be a professional) and are interested in participating in this project, contact Icing Smiles.  I am sure they would love to have you!


Another website that I found through a heart mom blog was Heart Heroes.  I actually found it on Charlotte's blog (remember you Books for Charley!!).  Here is a little about Heart Heroes from their website( :

Heart Heroes

Donate Today

Meet the inspiration behind Sam, Ashley and Sofia.

These children laugh, play and enjoy life just like any child, however, what makes them our heroes is that they have experienced life-saving heart operations - unlike most children. One would never know these children have endured lengthy hospital stays and miraculous medical interventions.

Undergoing these complex medical procedures is a daunting experience even for adults. For children, being alone without their family to comfort them amidst a crowd of medical professionals is absolutely frightening. Heart Hero Capes was created with the hope that all children visiting the hospital or their cardiologist will feel invincible wearing their cape - have super powers - and that their parents will be comforted knowing that the arms that always protect them are momentarily being substituted with the superpowers of the cape.

After seeing their children face the challenges of heart operations and cardiology appointments, the moms of these heart heroes decided to create the opportunity for all children with Congenital Heart Disease (CHD) to have a Heart Hero Cape.

If you know a child with CHD who wishes to have a cape, send us an e-mail at

So I am guessing you know that I applied for Claire to get a Heart Heroes cape?!?!  Yes!  They are really backed up with making capes, but I ordered Claire a free pink, green, and yellow cape with a heart on it and a "C" for Claire.  I can't wait to get it!  You will definitely see pictures of it when it arrives! 

These next few sites I found actually AFTER the fact.  It would have been really, really nice to have known about these sites the 99 days we were in the NICU.  But hopefully they will be beneficial to someone else reading this blog if you are ever in the same situation or know someone who is. 

Graham's Foundation is an organization that I would LOVE to be a part of or even start a similar organization of my own to help families like ours.  Be on the lookout in the future if I ever find the time.....Claire may have her own foundation to help other children.  :)

Anyways, back to Graham's Foundation ( 

Graham’s Foundation is a non-profit organization founded in 2009 by Jennifer and Nick Hall in memory of their son, Graham.  Its mission is to offer both practical and emotional support to parents of micro-preemie babies. The foundation supports the parents by sending care packages to them during their journey in the NICU and the foundation's website provides a place for parents to share their stories and find support.

Our list of care package contents continues to grow:
  • Hope, Resilience & Miracles bracelet or dog tag necklace
  • Snacks for long days at the NICU
  • Journals and books for inspiration and laughter
  • Single-use cameras
  • Hand sanitizer and hand lotion
  • Small blankets that absorb the parents' scent (they are placed in the baby's isolette)
  • Preemie hats and outfits
  • Special discounts for services such as home delivered food and house cleaning
  • Helpful information from organizations like Medimmune, March of Dimes and Caring Bridge

This is an awesome foundation and one that I would love to support.  I cannot tell you how meaningful these care packages can be for parents experiencing the NICU journey.  Consider applying to send a care package to a family that is in the NICU now.  I believe they also offer care packages to families who  have lost their precious preemie to help the parents heal.  You can also make donations to Graham's Foundation to help them continue to afford to purchase the items for these care packages.  You can donate your time by being a NICU Ambassador or even volunteering to deliver these packages to a NICU in your area. 


Pictures of Hope Foundation ( is another website I wish I had known about while Claire was in the NICU.  All of you obviously know how much I love pictures from the hundreds of pictures posted on the blog.   There were so many days that we took pictures in the NICU, but they just didn't capture what was going on.  We were so overwhelmed that it was hard to step back and take a look at the situation from a distance and to really capture the journey there. 

The Pictures of Hope Foundation is a charitable organization comprised of professional photographers (many whom are NICU mothers themselves) from all over the United States and Canada that provides complimentary, documentary-style, photography services to families with a child in the Neonatal Intensive Care Unit (NICU). 

Why Pictures of Hope?
Throughout pregnancy most parents don’t anticipate the possibility of their baby needing to stay in the NICU after birth. Whatever that reason may be, time spent in the NICU is often an unexpected journey for families, a journey full of overwhelming emotions…sadness, confusion, hope, celebration, and unfortunately, at times grief. Throughout this roller coaster of emotions, many parents do not consider the importance of documenting these precious moments in their lives nor do they think about how much they will truly cherish these images years down the road. In some cases, a little extra TLC from the NICU is needed to be sure the little one gets off to the best possible start, for these families on the road to well being, photographs are a wonderful reminder of just how far their little one has come, however, photographs also play a necessary and very important role in the healing process for other families. In the most heart breaking circumstances, photos may be the only tangible keepsakes some parents have of their precious little one. All Pictures of Hope participating photographers are dedicated to providing NICU families with invaluable images you will cherish forever, captured in a sensitive and caring manner.


I am sure there are many, many more foundations and organizations out there I have not found.  Hopefully these will help you or other families cope with the journey that we are all on. 

We will keep you posted on Claire's birthday as you are ALL invited!!  We want to have a huge celebration for her to honor the year that she has made it through. 

Don't forget to contact Erin McCoy Photography soon about setting up your photo session while she is here for Claire's birthday.  Remember - she will travel!  And also remember the awesome discounts Erin is offering in honor of Claire.  Please take advantage of them and help us show our appreciation to her for going over and beyond for our little hero. 

The Scott Family

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