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Open Letter - to the Triage Nurse Who Called Me "One of Those Moms"

10/14/2016

1 Comment

 
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I am sure you're expecting me to tell you that I am highly disappointed in how you treated me, my concerns for my son's accident, and what I believed his injury sustained was...but in reality I'm writing this letter to tell you thank you. 

When you called me "one of those moms," you meant it in a demeaning fashion...yes, I know I am not the easiest parent to handle because I'm educated enough medically to get myself in trouble...and yes, I know I was insistent about something you felt was silly and unnecessary on a busy night in the ER for you and your coworkers...but honestly, you did nothing to hurt my feelings. In fact you only proved that my mother's intuition, and that the third of my life I dedicated to emergency medical services wasn't wasted.

See, what you didn't find out, because you were busy and not able to follow-up with us is that x-ray I demanded be done didn't show a break in my son's rib at all, it didn't match the amount of pain he was in, but it did in fact show something was wrong...there was a growth in the spot where I felt something wrong on his rib...the spot he was complaining of pain in it.

Because of your attitude in describing my own to the physician on that night, we caught something before it could become anything bigger, or more severe...and for that I thank you. We have spent the last five weeks going through additional testing, evaluations, and imaging to figure out what this growth is...and that little hand you see there...we just had a biopsy done to confirm or deny the possible diagnoses involved. I'm writing to you not only as a medical provider, but as a mother...a mother that was prepared for anything thrown my way in the medical field, until seeing him post-surgery with an oral airway still in place...and in that moment I held onto his hand, and his piggie...bawling my eyes out waiting for him to wake-up, and knowing that while we were pretty certain this wasn't something too serious...it would still be at least a week before we'd know for sure.

Without me being demanding, without me saying we needed to have an x-ray done to confirm whether or not his rib was actually broken (which the CT Scan we had done showed it actually had been broken as well), we'd have never know something was growing on his rib in the first place. I want you to know that while I may have been irritated with the way you spoke to me that night, in this moment of waiting for him to wake up...my only thoughts were to thank you.

You might have thought of me as crazy...but with all this kiddo and I have been through together with his other diagnoses, I have to be his advocate...because not everyone will listen when I say something wrong or just doesn't add up, but even through your judgment of my opinion, you did listen. I know your job isn't easy, and quite honestly I don't know how you do it every day, but I want you to know that "one of those moms" believes that you're making a difference, you do matter, and that without you patients may not receive the right care they need, when they need it...you're one of the first people patients and families meet when they step foot into the ER and your instincts, knowledge, and skills play such an important role in their medical care.

Please keep listening, even in those irritating moments...you very well could and probably have already saved someone's life just by doing that.   


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Kids Helping Kids - Bronze Award Service Project by Girl Scout Troop 2183

10/14/2016

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Last year I received an e-mail from Lisa asking about Gracie's Gowns and our mission and that they had been teaching this girl scout troop of eleven girls how to sew in order to complete the service project they had selected for their Bronze Award...and through that had chosen to make NICU Smocks for Gracie's Gowns. 

It has been amazing getting updates throughout the last year from their home in California, seeing their project come together and over the last two days I have received their hard work first-hand. We were able to help get their project off the ground by donating to the girls some of our remnant fabrics, and have even more recently donated another box of pieces for some of their upcoming service projects too for some really awesome organizations as well. In addition, we sent each girl one of our Gracie's Gowns patches showing our appreciation. They are not authorized Girl Scout patches, but they are ones we had made for such an occasion and I'm so honored they were awarded to them and they love them as well. 

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Lisa has sent several batches of NICU Smocks they have made over the year, but these photos are of the ones that were presented to the committee for their award - the donations that aren't NICU Smocks themselves are from her family personally too. 

We always need twill tape, and snaps gowns cannot be made without either and these ones are engraved with a variety of images as well - super cool! They also sent us some books, crayons, socks, and little turtle stuffies!

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Forgive the terrible cell-phone pictures, it's just been one of those weeks where nothing wants to work right...but back to the awesome girls behind this project. 

In total they made 62 large NICU Smocks, laundered them, which we will then distribute to hospitals across the country and even internationally. 

The Bronze Award is the highest award that Junior Girl Scouts can earn. Earing the Girl Scout Bronze Award involves not only all the plannings behind the project itself, but then a minimum of 20 hours in building the team, going through their local community looking for idea, selecting their project (which also has to be approved first), and then completing the project itself by the required deadline. It is definietly not an easy endeavor to take on and one that not only requires the willpower, but the passion for the project in order to complete it.

Allyson, Alyssa, Arianna, Angelina, Genevieve, Isabella, Julianna, Madison, Priscilla, Zayden, and Kailey - all of us here at Gracie's Gowns are so proud of you for dedicating your time, talents, and using your award to further our cause. The babies that will be wearing these gowns will be more than honored, more than comforted, and their parents have you to thank for that! Keep on being awesome, being ambassadors, shining a light in a world full of darkness and bringing hope to those around you!


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Girl Scout Troop 2183 - presenting their service project
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For those interested in doing a service project for Gracie's Gowns, please send an e-mail to us about your organization and ideas to the following: jessica@graciesgowns.org

This is a sample of what our patch looks like that is handed out to the groups that participate in service projects and earn merit badges or awards. While it may not be approved for wear on a specific uniform, some have been able to wear it on a different part as a "fun badge."

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When a Gown Comes Together

10/12/2016

3 Comments

 
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Meet Kyrie - well the version of this sweet kiddo from June of this year, he was still at UVA Children's Hospital after having received his hero heart, and a second chance at life! 

We met him and his mom when I visited the hospital in coordination with Kelly and Finn to bring up shark gowns to UVA for the NICU and PICU for Shark Week. 

If I remember correctly (things are still a little hazy for me during that time as I was recovering myself from a month of having my wound vac), when we first took his gown up, he was still intubated. This is obviously a couple days later. 

Tonight, I'm writing this post to show just how much thought, love, and emotion goes into making a gown.


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This is Kyrie today working towards six months post transplant, growing, thriving, and getting stronger each day. 

With that...he outgrew his gown - OH NO!!! It is such an awesome thing to follow children, what them defeat all odds, grow stronger, healthier and happier as each day goes by. It does create a little more work, but it is work that I am more than thrilled to have.

His first gown was easy to get made - he loves Olaf...ordered fabric, done. His next gown, was needed in a bit of a rush, well in a lot of a rush for life as it is right now around here...it becomes a little more complicated. Luckily, I had a few gowns that were already made and in need of a home, which we use for situations just like this. I sent pictures to Montanna and she picked out one that she liked the most, after we nailed down the right size. She picked a Dr. Seuss one - swoon, one of my favorites!


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I still wanted them to feel like this gown was specially made just for them - even if it came out of the container where I keep gowns of various sizes as extras for emergencies. That lead me to searching online for Dr. Seuss themed embroidery patterns and I found this one Oh the Places You'll Go! how fitting for a heart warrior, for all of these kiddos that receive a second chance at life, that regardless of the hand dealt to them they continue to work so hard each day just to live.

Then I had to figure out the colors of the balloon and wording...this is when I found myself crying big, ugly tears because everything just came together in the right ways.

I had scraps of rainbow fabric from a gown last year (if not the year before), symbolizing the hope his family had in receiving a hero heart in his hour of need, and the hope they have had each day since. The balloon is then outlined in red and blue, the colors of the congenital heart defect awareness ribbon, and then finally the wording, and the basket are done in green. The color that symbolizes organ donation...because without that Kyrie wouldn't have the ability to go anywhere, to do anything, to grow-up and follow the dreams he has. God bless his donor family and the sacrifice they made in their darkest hour to provide another family with the ability to have many more days, weeks, and months together. You are the hero, just as much as Kyrie and his family are. 

Designing gowns isn't the easiest job in the world, sometimes I'm stuck on an idea, other times it is so emotionally overwhelming because I want to create the perfect gown for each child...but it really lets my creative side flourish, my heart brighten...and it can be super fun as well. 

Best of luck and love Kyrie on your upcoming G-tube surgery Tuesday! 


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