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Finn-tastic Shark Week at UVA

7/8/2016

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A HUGE THANK YOU - to everyone who helped us make the shark week gowns for the NICU and PICU happen! Because of each of your donations we were not only able to make 63 gowns from the shark fabric, but an additional 8 gowns for specific children that were admitted the day Kelly, Finn, his nurse and myself went up to UVA. 

We visited H-Pod inside the NICU and please excuse my hot mess of a self...I was barely a week without my wound-vac and honestly was running on less than four hours of actual sleep on top of being an emotional mess knowing what we would be doing and the fact I was officially engaged as of the evening before too...it was so worth it on all accounts...no regrets whatsoever, and honestly I knew I was going to be a hot mess before I even got back to my car after we delivered the gowns and met with each family. Every home or hospital visit is the greatest moment for me, but also emotionally the hardest too.

Moving on about me - let's talk a little about some of our wonderful families we met! OH before I forget, let me tell you what, all of the Neonatologists that we talked to in the NICU absolutely LOVED the smocks and gowns. That was another amazing moment when they were asking how they worked and then of course one was so awesome to take this picture of us together. 

Over in the PICU we met five of the eight families - and they were all pretty much right in a row without skipping many rooms in between. It was awesome and heartbreaking at the same time. Each of these sweet kiddos was born with one congenital heart defect or more in addition some even have other complex or rare medical diagnoses. Each room is an individual room and can be made into a satellite OR if necessary (on a small scale), but at the same time they each have someone within ear shot or even an arm's reach if needed.

When I visit in the hospital, I am very picky about what photos we take (even with permission) and then what ones I post. Many of these precious heroes having multiple tubes, wires, cords, surgery sites, etc. and that can be overwhelming for just about everyone. Because of that I try to not post all of it, but part of me wants to show the reality that is complex medical conditions and just what these children have not only lived through, but overcame against all odds. The raw, emotional, hit you in the gut reality of what goes on inside one of these hospital rooms. 

Once my littles go back to school in August and maybe even during the weeks they are gone over the summer, I will find myself up at the hospitals locally photographing and documenting just that...we shall see whose permission I need and how to make that happen.

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Milo was waiting for a hero heart when we met him and his parents at UVA...as many of you have seen on our Facebook page this week he passed away on the 6th. He fought so hard, he battled against all odds and his parents were by his side every minute they could be cheering him on. They themselves not only showed courage and strength, but an undying hope, a fire and passion to live each day they had together and to make every moment count. The honor and blessing is truly all mine in having met them in person.

H-Pod is inside the NICU and was the last part of our visit at UVA where we not only met families we knew about and had been talking to on Facebook, but a brand new family that I learned about the night before. Remember that four hours of sleep...yep, I was making a special gown for a baby that I just learned about hours before having to go up to the hospital. Best moment ever was seeing them laugh at the fabric and wondering whether or not it was coincidence or so devised scheme by the staff, Kelly and I to make little Stonewall (whose twin brother is name Hawkeye...why didn't I think of cool names like that for my kiddos) a firefighter hospital gown in the itty bitty newborn size I made that night as well.


This part is literally a little pod - I don't remember how many kiddos they can have in there at one time, but there is always someone less than an arm's reach away. It could be the doctors, the nurses, the aides, the therapists, another family...you name it. It is always buzzing, but it is the most reassuring place I've ever been in hospital wise. Everyone is connected and checks up on the other families inside the pod. It is a totally different world of pediatric units.
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Again, a huge thank you to everyone who helped support these special gowns - I know many of you were supporting the shark week gowns in honor of Finn and we're forever grateful for not only the ability to make them and visit with Kelly and Finn, but to be able to complete all these other special gowns for families that have grown so very near to my heart too. We have another special week planned which we will post about in August - it involves the most awesome children's author ever, funky colors, and lots of fun to say words too! We look forward to taking on such a project again and hopefully with a little more planning we can make them bigger and better each year.
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