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13 Things to Start off 2013

1/29/2013

So I thought I would have a little fun kicking off 2013 and let all our followers ask me 13 questions and I would answer them here.
Those questions could be about anything about me, my family, Gracie's Gowns...literally anything (okay, except the really private stuff anything.).

Below are the questions we received from our followers on Facebook and the answers to those questions.

Thanks so much for participating and hope we all learn a little something new!

Question 1: Where did you get the idea to make the gowns?
The very first gown I made was a labor gown for a friend of mine when she delivered her baby this past spring. Once I got the gown completed, I thought "wouldn't it be such a great idea, if they made these for children in the hospital?" So I scaled it down to a child's size and you can see what has happened since.

Question 2: What's the one thing, most important tip or advice that you would tell another parent or family that would like to start a non-profit to pay it forward?
The most important thing in my opinion is to choose something that comes to you naturally, something you are passionate about and something that you like to do and use that talent and that passion to give back to others. I love sewing it is easy for me and I love what I do...so it isn't work, it isn't stressful and it makes me feel wonderful.

Question 3 (one that I had to laugh about, because it is just comical to me): How many hours do you sleep in a day?
Honest answer ~ depends on the night and what all is going on. Many of time I have gone to sleep at 8:30 pm and don't wake up until the kids get up at around 7:00 am. Other times I am up until 2 am and sleep until they wake up. Though with school about to start up, my bedtime will be earlier because I will have two that have to get up and get on the bus now.

Question 4: Who or what inspired you to make the gowns and when did you start?
Partially answered that in question one ~ start date was in March 2012 with our first requested gown accepted in early April. What really inspired me to continue making the gowns was thinking back to a local little girl named Grace Oughton who passed away in 2007 after battling Neuroblastoma. I wanted to help her and her family so bad, but just never seemed to be able to and wanted to help other children fighting so hard and inspiring so many to just live and to never give up. I was following a lot of these little ones and seeing how the hospital gowns barely fit or were massively too big and said, well this is it, this is what I need to do to help give them a little comfort during their fight.

Question 5: What makes you smile every day?
Every day I get the biggest smile out of my children, the fact that I can wake-up to their smiling faces, temper tantrums, bickering, laughter, sweet prayers and even their tears. They are here with me, safe and know that I love them more than anything else.

Question 6: How many brothers/sisters?
Somewhere down the line God decided to bless me with a younger sister...not sure what Him or I was thinking all the time as we have definitely had our share sibling rivalry and bitterness towards each other, but we've been there when the other has needed it as well. We are as different as night and day most of the time, but together everyone always asks if we are twins.

Question 7: How many kids do you have and what ages are they?
My husband and I have three children ~ 2 girls and a boy stuck in between them. They are 5 years old, 3 years old (almost 4y) and 2.5 years old. They are our world!!

Question 8: Do you have any pets and how many?
We don't have any pets ~ boring right? Eventually when our addition is built and complete we will be getting a kitten, but in the mean time we don't have any pets. We did have a female beta fish that was given to us during the summer, but my wonderful toddlers decided to take the fish out of water and pour water all over my desk...big mess and precious Diamond went to be with her mommy in Heaven. We do have 14 chickens and 2 turkeys outside, which are kind of like pets...lol...we hatched 6 babies this fall from the chickens we had bought as babies back in March 2012.

Question 9: What type of sewing machine do you have?
I have a couple machines that I use to make the gowns. I have a Singer Confidence Quilter which is what I sew everything on...it is "the sewing machine." I also have a Husqvarna Designer SE that I use for the embroidery of the gowns and names. It can sew as well, but just easier to leave it set-up for embroidery. My dad purchased a Singer ProFinish Serger for my Christmas present, but I haven't figured that machine out, once I do...that is what I will be hemming all the gowns with instead.

Question 10: Are you married and if so, for how long?
Yes, I am married ~ my husband and I have been married for a little over 6 years now (this year will be 7) and he has been a huge supporter of Gracie's Gowns and while he does not like the long nights I "work," he is always so willing to take all the packaged gowns with labels on them to the post office for me after he gets off work or when he is out taking care of things (he leaves the international ones to me...lol). He also helps me removed the "bad" snaps that get placed wrong or break...so I don't cut or tear holes into gowns anymore trying to remove them with scissors.

Question 11: What is your biggest fear?
Bathroom mirrors in the dark ~ well any mirrors in the dark...no joke! It all started back when we lived in Washington State and I went with my 5th grade class to the Fort Casey and we stayed in the barracks there and of course someone decided to round up all of us and start playing all those crazy "camp" games and well one involved the bathroom and the HUGE mirrors in there in the dark and the whole "Blood Mary" thing...yep been traumatized every since. Ask my husband ~ I can't STAND mirrors in the dark. Now my biggest fear as far as Gracie's Gowns is having a little one pass away before we could get their gown to them, that has happened a few times already and that really isn't a fear any more, it is just severely heartbreaking and we still send their gown to them (after we ask the family, if they would like it, which they all have so far).

Question 12: What is your favorite thing about making the hospital gowns?
My favorite thing about making the gowns is reading the messages from the children and their families about how much they love their gown. How something so "little" made such a BIG difference to their hospital stay or procedure. The other that is just as equally my favorite, is being able to create something so personal for these children ~ something that gives them their own identity in a situation they can't control.

Question 13: What are your dreams and goals in 2013 for Gracie's Gowns

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Highlights and Fun from 2012

1/3/2013

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Wow, what a year we had in 2012!
A full 8 months of working on hospital gowns for these precious little ones and it has been such an amazing journey! I hope your eyes light up and a smile comes to your face when you see these precious kiddos in their gowns or even just seeing the new gowns posted as they are finished.

This picture here is of every letter, thank you card, drawing and picture that was sent to me by the facilities or the children and their families. One of the things I will be doing this year is starting a binder or a scrapbook for each of these that are received...as these are my most precious keepsakes! There is also my two 5k run bibs in there as both were to benefit pediatric cancer research in my local area! Thank you so much for taking the time out of your day to send them to me ~ really it means the world and gives me the inspiration I need to keep going when I grow a little weary with the rest of life.

So much love and work go into each gown from the minute the request is received to make sure we not just make a gown for each child, but make a gown that they will love and their parents will cherish when this part of their journey is over.

In 8 months time we have accomplished so much more than I ever thought I would ~ things started slow...very slow, but once the word got out there my, oh my did it burst in flames like a wildfire!
This is what we've accomplished in the last 8 months.

We donated 25 Preemie Gowns to Mary Washington Hospital's NICU
15 Gowns to Culpeper Regional Hospital to be used on the Step Down Unit
And 5 Gowns were sent to All Children's Hospital in Florida as a Welcome Package ~ we will be delivering/sending a donation this year to their units once I know more for their Child Life Department.

With doing requested gowns, it can get interesting in how to incorporate what the child likes into a hospital gown, so here were some of the more creative efforts in 2012 in making these precious little ones a gown that they would love.

Once again, I just want to say THANK YOU to everyone who has been with us from day one or even just seeing us for the first time today. Each of you are a blessing to us, every kind word, every share, every donation is worth more than I can even express. The amount of love and support we have received is AMAZING and there is only more good to come in the following years!

I pray that 2013 is a great year for not only us, but each of you! I pray all our goals for 2013 can be met, I pray we can provide all the love and support to each of you as you have to us. May God bless all of our hour

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Gracie's Gowns Meets: Piper

1/2/2013

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Also tonight I am going to introduce you to Miss. Piper.

Piper is now 13 months old, but was born with Hypoplastic Left Heart Syndrome. As when we talked about some of the other little ones born with this ~ the left side of her heart is not functional (well when she was born it wasn't) and the ultimate fix for this is a heart transplant.

Piper received her second chance at life when she was 4 months old ~ she received her perfect heart.

During her short life so far, Piper has had multiple heart caths done, 2 open heart surgeries, her transplant and a feeding tube placed. She is on anti-rejection medication (so her body doesn't reject the heart), which is a life-long medication.

She has developmental delays and due to the prolonged intubation, she has feeding problems (hence the feeding tube) and a chronic lung disease. She will have heart caths in the future (an annual check) and have her g-tube closed (feeding tube) and a strabismus surgery (eye muscles) here very soon.

I wanted to quote this from her mother, because it is something I remember hearing from a dear friend of mine who's little girl has a congenital heart defect as well...just hits home.

Almost everyday prior to transplant was terrifying because she was doing so poorly, we didn't think she would make it to transplant. And every time we handed her over to the thoracic surgeon was terrifying, not knowing if we would get our baby back. The most exciting was first seeing her PINK after her transplant. Even with all the tubes, lines and wires, you could see her bright pink lips from the doorway to her room. Also, Christmas 2012 was her first Christmas home and it was wonderful to finally have a holiday with our whole family.

Piper also receives her care and treatments at Ann and Robert H. Lurie Children's Hospital in Chicago, Illinois.

You can follow and support Piper through Facebook at:
https://www.facebook.com/pages/Prayers-For-Piper

And for more information on Hypoplastic Left Heart Syndrome Visit:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/

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Gracie's Gowns Meets: Makenzie Marie

1/2/2013

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As always it is my joy to introduce these little ones to all our followers ~ tonight I get to tell you all about Miss. Makenzie Marie!! Makenzie Marie is a 1 year old little girl that has Retinoblastoma, which is a form of eye cancer.

She was diagnosed in April of 2012 at the age of 4 months old and has since done 5 rounds of chemotherapy that made the tumor go away, but had a scan a month later that showed not only that the tumor was back, but that it was larger than when originally found.

So this sweet princess has laser treatments done every 3 weeks to her left eye and with all the faith, hope and prayers they are doing their job in eliminating the tumor. As with every child the scariest moment for the parents is the day of diagnosis. Especially when they are so "new" to the world and then the doctor's start throwing out words like tumor, cancer, chemo and more.

The most exciting moments for Makenzie Marie and her family right now are when she has good reports from her scans ~ and of course that is when everyone else gets excited too!
She has her treatments and care at Ann and Robert H. Lurie Children's Hospital in Chicago, Illinois.

You can follow and support Makenzie Marie through Facebook at the following page:
www.facebook.com/mmretinoblastoma

And to learn more about Retinoblastoma use the following Links:
(I like using resources specific for children ~ in case you haven't figured that out yet)
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=7cfb061585f70110VgnVCM1000001e0215acRCRD
http://retinoblastoma.com/retinoblastoma/frameset1.htm

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Gracie's Gowns Meets: Roman

1/1/2013

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It is also my honor to be able to introduce everyone to little Roman!

This little guy is now 14 months old and was given an extra special gift this past year ~ a new heart!

He was diagnosed with hypoplastic left heart syndrome, which is where the left side of the heart is essentially not functional. The ultimate fix for these little ones is a heart transplant, but even then there are other complications that can occur.

Like Roman, most babies born the HLHS have their first surgery within the first few days or weeks of life. This is crucial to save their life, there is a total of 3 surgeries that occur, but a transplant is always on the list.

Roman has developed cataracts as a result of the anti-rejection medication that he has been put on and will have to have surgery this year to remove those, as well as, a heart cath done this coming May to check for rejection of the donor heart.

I wanted to share this from Roman's mother when she wrote about his journey:

The most frightening experience was when Roman started to crash on day 3 of his life. The doctor came in and told us that he had to talk about our boy, and that he was very sick. I had five minutes to see him before they rushed him to Nationwide Children's Hospital. He was blue from head to toe. We had several scary moments, including several coding episodes. However, the happiest day was when we got the phone call that they had found Roman a perfect heart. We will always be grateful for Romans donor family that gave Roman a second chance at life. Bringing Roman home after being inpatient for 7 months was so overwhelming! By far the best day of our lives!!

To follow and support Roman please visit the following Facebook page:
https://www.facebook.com/pages/Prayers-for-Roman

Here is a great resource from Boston Children's Hospital on HLHS: http://www.childrenshospital.org/az/Site502.html

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Gracie's Gowns Meets: Callista

1/1/2013

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Going to start out the new year, yes it really is 2013 already, by introducing you all to a few more of the kiddos that we have made gowns for. This morning I am going to tell you a little about Miss. Callista!

Callista an 11 month old little girl with Spina Bifida and Chiari Malformation. I remember when I first even knew about Spina Bifida it was from a picture on the refrigerator of the parents of a friend of the guy I was dating at the time (follow that...anyway) it was from the newspaper article of the very FIRST fetal surgery being done on a baby with Spina Bifida and the baby reached out and grabbed the doctor's finger. Anyone else remember that? Well now that is almost STANDARD practice for these precious little ones!

Here is what little Callista has undergone since the fetal surgery from her mommy:

Callista and I underwent fetal surgery to repair her spina bifida when she was 22 weeks gestation at Vanderbilt Children's Hospital.

At 2 days old, she a shunt placed for hydrocephalus.

At two months old she had a decompression surgery.

At four months old she had a g-tube placed.

At eight months old she had a double hernia repair and a vesicostomy.

She currently has physical and occupational therapy 1-2 times a week.

These precious sweet pea still has a long way to go with more surgeries potentially in her future, the need for leg braces so she can being to bear weight and learn to walk (my son had to wear leg braces because he was bow-legged...this was not a fun experience for him or us, but one that luckily we didn't have to continue for a considerably amount of time) and she may also need a wheelchair in the future.

I've had the joy in celebrating some successes with Callista through her Facebook group and watching her grow and develop. Even though she is delayed compared to most children, she is meeting milestones in her own time and fashion and it is such a joy to see her and her family get so excited about what she is able to accomplish now!

Here is another bit from Callista's mommy about her journey so far:

The most frightening thing was the initial fetal surgery as we had to deal with the fact that we could lose her by trying to help her. She could have been born extremely early because of the surgery as well.

We also had a pretty frightening beginning. 12 days after we were allowed to bring her home, she started acting very funny. We took her to the ER and thank goodness we did. As soon as we got there, she stopped breathing and turned blue. They rescued her quickly but we ended up with another 2 month stay in the hospital where they did her decompression.

The most exciting part of our lives is just simply seeing her grow. Although she is far behind on her developmental milestones, every time she reaches one is a celebration. She is beginning to support her own head and has said her first word (Da-Da!).

And here is the precious little princess!!

To follow and support Callista visit the following pages:
https://www.facebook.com/groups/callistasjourney

http://www.callistasjourney.blogspot.com

To learn more about Spina Bifida you can visit the following website (there are TONS of resources and information out there, but this is one that I liked):
http://www.spinabifida.net/

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13 Things to Start off 2013

Highlights and Fun from 2012

Gracie's Gowns Meets: Piper

Gracie's Gowns Meets: Makenzie Marie

Gracie's Gowns Meets: Roman

Gracie's Gowns Meets: Callista

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