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Operation NICU Surprise - Johns Hopkins Children's Center (Maryland)

7/11/2014

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Our second NICU we chose to receive a box of NICU Smocks was Johns Hopkins Children's Center NICU located in Baltimore, Maryland. They have a state of the art NICU that was built in 2012 and it includes 45 private NICU beds. They services neonates with all sorts of complex congenital birth defects and disorders in addition to the little ones just born too soon. The thing I love the most about their new NICU is that each room has the ability for a parent to stay in the hospital with their baby, something most NICUs don't have, well many intensive care units don't have that, even the ones for adults. You can learn more about the NICU and what they offer through their website at: http://www.hopkinschildrens.org/neonatology/

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Johns Hopkins Children Center's NICU was nominated by Adrianne in honor of her son Xavier who was cared for by the wonderful doctors and nurses in the NICU. Xavier was born with more complex issues than just premature delivery, but the doctors and nurses went the extra mile to care for him through it all. This was a few years before the new facility was built, but Adrianne was awesome in sharing with us some photos from and (and now). You can read their story below in her own words.

My son, Xavier (now 5), was born 4 weeks early due to low amniotic fluid. I had a normal pregnancy and didn't expect anything different despite his late prematurity. Little did my husband and I know that on Friday March 13, 2009 things were about to change dramatically. When Xavier was born (at 4lbs) there were immediate signs of distress...he had difficulty breathing as well showing signs of seizures. He also looked different than typical children. He was born at a hospital close to our home that had wonderful OB/GYN and infant care. But despite their best care we were told they were unable to provide enough support for Xavier in their NICU. We were told on his fourth day of life that he had to be transferred to Johns Hopkins in order to undergo further testing and access to doctors skilled in more complex cases. We were in shock to say the least. We were not expecting any of this and suddenly our lives were turned upside down. Getting to the NICU at Hopkins was a whirlwind of nurses, doctors, and tests. I have to admit I was bitter and just wanted to bring my son home and not have him poked and prodded. We were told that Xavier likely had a genetic syndrome and he was, in fact, experiencing seizures. He also had to learn to breathe and eat on his own. It was noted that he also had a number of congenital anomalies. Xavier spent a total of 32 days in the NICU and in that time my husband and I created relationships with doctors, nurses, and even other families that last until this day. They rallied in our highs and supported us in our lows. Xavier's nurses gloated at the fact that I was able to provide him solely with enough fresh breast milk and at the skill of his dad as he was the only one Xavier would drink from a bottle for. They called us immediately with good test results and sat with us to understand more difficult ones. In that time out dread and fear were able to be calmed by simply talking with the nurses about "normal" things. We joked, talked about the weather, and we brought them food (a fed nurse is a happy nurse lol). When the day came for X to come home our doctor met us in the hallway singing the Rocky anthem as we strolled X's stroller into the NICU. You never want to see your child go through such difficult things but I know our son was in the best hands. 2 years after his birth Xavier was finally diagnosed with a rare genetic syndrome called Schinzel-Giedion syndrome. He's one of approximately 12 kids worldwide. We would have never gotten this diagnosis had it not been for our geneticist and genetic counselor...providers who have been with us since the NICU. We have been with our different specialists through surgeries and hospitalizations. Each year we attend the NICU reunion to see the nurses and other babies who were with us from the beginning. Xavier has even attended daycare and now school with the little girl who was next to him in the NICU. We never expected to have a child with special needs but we are fortunate and forever thankful to the staff at the Johns Hopkins Children's Center NICU.
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Thank you so much Adrianne for nominating Johns Hopkins Children's Center and for sharing your story with us and our followers as well - the NICU Smocks have already made their way to Johns Hopkins Children's Center (they were mailed the first week of this month) and we hope they bring many smiles to the facility, but even more so to the families that receive one of them for their little one. Here are a few pictures of the gowns and because my oldest colored the box so pretty, she insisted I share a photo of that as well.
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When we have more sewn and ready, we will work on pulling some more NICU nominations and dispersing them to other hospital around the United States and the world. It is such a blessing to send these everywhere we can, but even more so to wrap the littlest miracles in something comfy of their own.

Have a beautiful weekend!
Gracie's Gowns
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Half-Way Through Spring Raffle

4/15/2014

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We're at the half-way point now!!
Fifteen days of winners and fifteen more days to go - we still have 78 tickets that we'd love to sell before the end of the raffle to meet our goal for sales. The proceeds from the ticket sales cover the cost of the items Gracie's Gowns had to purchase for the raffle, shipping costs of the items to winners, but also benefit our Christmas Box Program that we've been accepting items for and will continue through early December. The majority of the funds raised from the tickets sales will be put towards shipping of those Christmas boxes in mid December to our families that sign up for the program in late October.

So without further delay - here are some more of our winners in case you missed it on Facebook!
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Our ninth winner was Charlene - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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Our thirteenth winner was Marla - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Marie Snyder - a local Pampered Chef consultant to Gracie's Gowns.

You can find Marie's business page on Facebook at:
https://www.facebook.com/PampChefLady

And her business website is:
www.pamperedchef.biz/foodisfun

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Our fifteenth winner was Kim - her items were from The Pampered Chef!

The items for this day in the raffle were sponsored by Dawn Truex - a friend and Pampered Chef consultant to one of the families we have made a gown for.

And her business website is:
www.pamperedchef.biz/mychefdawn



And that wraps up the second week of our winners and brings us half-way through the raffle as well!

Congratulations to everyone who has won and item so far and please don't forget to share, invite, and purchase a ticket for yourself!! We'd love to reach our overall goal for ticket sales, but even more so make sure we have funds available for shipping out our Christmas boxes!

To purchase a ticket please visit our events page at:
www.graciesgowns.org/events.html
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A Time to Remember - Two Years

3/25/2014

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This past weekend we celebrated our two year anniversary in making hospital gowns for children across the United States and around the globe. What a great accomplishment, what an amazing experience, what a blessing for my own life the past two years have been (even with the crazy times)...but we also took the time this year to celebrate the lives of the children we have made gowns for and remember those that have passed away over the past two years.
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Each child we made a gown for that traded in their super hero capes for angel wings had a lantern with their name, date of birth, date the became an angel, diagnosis and anything else the family, us, or the person who purchased the lantern in their memory wanted to say on it.

This year we released 45 lanterns - there were a few duplicates from where Gracie's Gowns had a lantern for the child and someone else wanted to purchase a lantern in memory as well, but overall there was one lantern per child. We had a few lanterns as well for children that we did not make a gown for, but were warriors as well - and we gladly added remembering their courage, strength and smiles to our ceremony.
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Due to some weather related issues, we started later, but lanterns went in the water around 8:00 p.m. and the final one went out about 10:00 p.m. It was a very cold night, but watching the lanterns float in the water, seeing their reflections and just how they illuminated the water was breath-taking. Even more so, it was very, very emotional for me. Too have a visual of the children that lose their lives battling illness was heart-breaking...to know that this is only the children our organization has personally worked with in two years was devastating. There are so many more children who pass away each day, week, month and year that if we lit a lantern for each of them - we'd have to worry about them catching themselves on fire...there wouldn't be enough water for them all to float.

Watching the candles go out was probably the most emotional part of the whole night.
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The lanterns - if the wind didn't blow them out - started to sink as they were wet. They are biodegradable, which is the point for them to get wet and sink/fall apart/etc. But as they did...you would see this light, barely above the water...like it was holding on unto the last second. Fighting until the very end to stay shining. They flickered, almost went out, flickered some more, got brighter and held on...and then once the water came closer, the flame disappeared without any warning. Just like our little warriors.

They fight until the very end, giving it 100% and then some - they have so many close calls and yet still manage to pull through and almost make a complete turn around and then...in a blink of an eye, they are gone.
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Here is all of the lanterns we released out in the water - a beautiful tribute and celebration of their life.

Over the next few months, I will be creating an angels/in memory of page here on our website. It is my hope to get each child that we know has become an angel and learn about the ones we do not already know, on that page with their parents permission and help.

This will become an annual event for Gracie's Gowns - and for those that may not be able to attend at night, it is in my plans to do a balloon release during the day and make that a family event as well.

To view all the photos and lanterns from the event - you can visit this link below:

Gracie's Gowns Two Year Anniversary Lantern Release
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Gracie's Gowns Meets: Addie

12/27/2012

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Get prepared to meet Addie!!

Addie is seven years old and has been battling Juvenile Dermatomyositis. And now I can hear many of you saying to yourselves "I've never hear of that before." And I will be honest, I had never hear of it either until I started Gracie's Gowns. Her mother gave me a fabulous link for it, so that is posted at the bottom for each of you to check out. 
Luckily there aren't too many secondary conditions that resort from it, but Addie, like most kids that are diagnosed with Juvenile Dermatomyositis, they have super weak immune systems and are hospitalized frequently for the things that most of us would just take a sick day and move on from...or just work through.
Addie has gone through a LOT and that isn't a joke once you see this treatment list below:
225 injections
42 Blood draws
MRI
22 trips to the University of Minnesota
Physical therapy
5 CMAS's
10 Solu-Medrol Infusion's
GI Swallowing X-Ray
3 Hospitalizations due to Pneumonia
WOW!!! Right?!
That being said these treatments will continue and very in intensity, frequency and duration based on how her condition progresses. She is still in the active stage of her disease which means almost anything is fair game at this point. 
For her mom each day is essentially unknown ~ it is nerve racking not knowing what is going to happen, but she takes much joy in watching Addie grow and develop into a beautiful girl and helping spread awareness for Addie and other children with Juvenile Dermatomyositis. 
And here she is...
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To follow and support Addie you can visit the following pages:

https://www.facebook.com/AddiesAngels
http://www.caringbridge.org/visit/addiechristensen
http://www.youtube.com/watch?v=anIGaQXkhg0


To Learn more about Juvenile Dermatomyositis go to the Following Site:
www.curejm.org
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Brave Little Brayden

6/15/2012

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As I have the honor of making gowns for children across the United States battling cancer and other life-threatening conditions, my heart is heavy as I read about these conditions and the LIMITED amount of research and attention they tend to receive. It is my prayer that as my children grow older they will be the generation that finds cures and erradicates these conditions (at an affordable level as well).

The times my heart breaks the most, is when I read the stories, journies and battles of infants starting their fight at only a few weeks or even months old. I have learned to look at it this way ~ What is God's ultimate plan for this child's life? Who will they impact and whose life are they going to change in only the way the Lord can do? That being said I still cry, feel it is unfair and wonder why these things happen to such little children, or any child for that matter.

This month I had the joy of making a hospital gown for little Brayden, who was diagnosed in December 2011 with Stage III Neuroblastoma, he was just under a month old. Neuroblastoma is one of the rarer childhood cancers and one of the less researched cancers as well. There is roughly 650 cases a year (that number may have changed since I last looked it up, but I think it is still very close to it).

Neuroblastoma is very dear to me, because Grace (who Gracie's Gowns is founded in honor of), battled Neuroblastoma from 19 months old (official diagnosis) to just over 3 years old. This was my first up-front encounter with childhood cancers and greatly impacted my life throughout my pregnancy with our oldest and since...my daughter was only a few months only when Grace passed away. I pray many times that should she face any more obstacles in life, that she would have the smile, courage and optimism that Grace did to conquer them.

To learn more about Brayden and to follow his journey and fight against Neuroblastoma you can use either of the following links:

Facebook Fan Page:
https://www.facebook.com/pages/Baby-Braydens-Fight-With-Neuroblastoma/374681565883710

CaringBridge Page:
http://www.caringbridge.org/visit/braydenbrorson

Here is little Brayden showing off his hospital gown (he is the first one to try out and use our infant gown design, so I pray it is working well in the hospital and is soft and comfy for him.

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Brayden ~ our family is praying for you and your family each day and night!

Keeping fighting and never give up! While this is a very large bump in the road and trial in life, you can kick it's butt.

We are following your FB Page and CaringBridge page and look forward to crying about the setbacks, but even more celebrating the successes with you!

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