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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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A Little Break in Routine

4/15/2014

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Okay - so old picture, but had to use something with the sewing machine. I love sewing these hospital gowns, I love sewing them for your little ones and seeing their smiling faces and knowing how it can literally change a hospital experience from bad to at least tolerable. 

Sometimes though, I have to break the routine of making gowns and work on other projects, just to keep from crying over how many precious little ones are in need of such an item. It breaks my heart in so many pieces at times, that I have to sit back and remember how much of a blessing each child is, how they have changed the lives of those around them...how they fight, just to make it through another day and while yes, the odds are usually stacked against them, they inspire others to do such amazing things - like Gracie's Gowns and so many other organizations!

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One of the items that have been done and still being worked on were these squishy little monsters! We sold them over the course of a couple days in order to raise shipping funds for gowns.

I am happy to say they are almost all done and out in the mail (still have maybe 7 more in total to make I believe). Here is some of the ones that went out last week, as I didn't get pictures of the previous ones made to post. My apologies on that...they are too cute not to picture and post.

These guys come from leftover minky fabric that I have from making millions of blankets over the last few years I have been making for friends and family.

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One of the other items that get worked on in those little breaks are some bags for Beads of Courage - I love making these little bags from leftover pieces from gowns!

They are easy enough to make and still give that feeling of inspiration and fulfillment I suppose in knowing the fabric we use won't go to waste and can brighten the days of so many other children too.

This year we have 17 bags made so far to donate to Beads of Courage and will probably have close to 50 by the time the donation is ready to be made. We are hoping to be able to donate them to our local hospital with a Beads of Courage program. 

Lastly, whenever I really want to venture out into my sewing fun - I go back to making little items from leftover pieces of fabric and working through my own personal fabric stash and creating other items that we will be taking with us for our craft show in October - last year we raised $900 for Gracie's Gowns with items made from leftover pieces and whatever fabric I had on hand - this year we're hoping to meet and exceed that amount...especially with the Christmas Box Program coming up at that time of the year as well. Right now we've loaded the items into an etsy store (which will be put in vacation the Thursday before the show) to try and sell some of the items throughout the year with all the money being put into our shipping expenses. So here is the etsy mini with links in case you want to browse it!
With all that fun being said and shown - no worries, gowns are still being made, still being sent out and Gracie's Gowns is rolling right along like we always do. Sometimes just a little slower than normal, because we are in the process of moving and my health has gotten a little "interesting" for lack of a better word, but we are still upholding and maintaining our mission to provide every child we can a special hospital gown of their own to wear while in treatments, surgeries and hospital stays!

Much Love and Many Blessings,
Jessica
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Donation to the Little and Dependent

1/25/2014

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Eastern Tennessee Children's Hospital is one of the most amazing children's hospital in the country. Not only do they care for a variety of pediatric illnesses and needs, but they have a super special NICU. 

The reason their NICU is so special is because they are one of the hospitals that treat the highest number of drug-dependent newborns in the United States. And we aren't talking street or illegal drugs...these are prescription pain medications and most obtained under normal circumstance.

These babies are weaned off prescription medication, by being given doses of morphine until they are able to tolerate being completely off any kind of opiate. This process can take days and week to accomplish. The unit can hold 49 infants and over half of them are born with neonate abstinence syndrome (drug-dependent), these babies have to be watched around the clock for seizures and even worse, in case they stop breathing.

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When I was in college, this was a topic I was starting to write a research paper on...it is a personal subject as my youngest was born drug-dependent and not because I misused my pain medication, but because I was given excessive amounts of pain medication between all of our admission during pregnancy for pre-term labor and for the amount of pain I was in throughout the entire pregnancy because of the amount of scar tissue I had and two pregnancies very close together and severe anemia issues as well. 

Only problem was, when she was born, we didn't know what was the cause of all the problems we had in the first two months of her life, until I happened to read a forum on drug-dependent babies and all the pieces fell into place. It was scary.

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So when Ellen from Socks 4 Surgery posted the articles published in 2013 about Eastern Tennessee Children's Hospital and what their NICU was doing - we decided that some extra comfort needed to be sent to these precious little ones as well.

Ellen sent out socks and hair bows and in her awesomeness asked if we had any gowns that we could send their way as well. I had to wait until I got back to the house and went through what we already had sewn NICU Smock wise and put together a box that we will be sending out the the hospital this Monday.

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So in total we have twenty-eight gowns headed to the hospital's volunteer services and some of our brochures to be used throughout the hospital for other children that may want a gown of their own as well.

We will keep praying for the hospital's staff and volunteers that are working with and caring for these precious babies and their families. We pray for the babies and their families as well through this rocky start to their journey and lives. 

We hope these gowns find each little doing the best they can and provide them with a little extra comfort.

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Clicking on the picture above will take you to a brochure (PDF Format) the hospital has created on Drug Use during Pregnancy and about Neonatal Abstinence Syndrome.
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Fingers and Toes

8/1/2013

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When I think about fingers and toes - I almost automatically think about being pregnant for the first time and I just couldn't wait to meet our precious little baby and take in all her features, but especially her fingers and toes. My second thought, is the book you see above.

But what I am going to share with you tonight, I have been wanting to share for a while now - I read it on Facebook on a friend's page back towards Mother's Day this year. Something even more special about this friend is that her baby was born with Hypoplastic Left Heart Syndrome...and her precious little boy became an angel watching over her.

This story is so touching and so important - being the mother of a special needs child, allows us to appreciate the little things more in life, but it also forces us to re-evaluate a lot of what we think, believe and say. We also know that we want more for our children than what this life has to offer them.

We know that when a new mom-to-be says they don't care as long as the baby has 10 fingers and 10 toes...they aren't telling the whole truth. This is for all the mothers out there of children with special needs - no matter what their condition may be, we are all connected.
My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder
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The picture above is a charcoal drawing that I made not too long after David was born - I would never have guessed that I would become a mother to a child with special needs, a child with Autism...a child that has become my hero and the best thing to ever happen to my life. 
Some people get to meet their heroes...but some of us have given birth to ours. 
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Working Together and Latching On

8/1/2013

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This is a bit off from my normal blogs for Gracie's Gowns, but I wanted to share an exciting event that is taking place this weekend near us.

The event is called The Big Latch On - and with next week being World Breastfeeding Week, couldn't be a more appropriate time to host such an event. The event in our area is located in Culpeper, Virginia at Yowell Meadow Park.
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As a mother to three children - the importance of breastfeeding is huge, especially when David and Madeline were born, not only did it become important for my own health and wellness, but also to help save our family money on formula costs. I was never able to nurse Aubrey, the NICU at the hospital we delivered at wasn't very helpful and really wasn't on board with breastfeeding, so when we brought her home and I tried to nurse, it just wasn't happening and became very frustrating for us both. It also turned out that she had a milk allergy. When I wasn't able to continue nursing David because he wasn't gaining any weight, I searched and searched for someone that would be able to donate milk, because I knew the benefits for his own health...unfortunately, I wasn't able to find anyone...and the same with Madeline when I had to wean her from nursing because of the surgery I was going to have on my neck.

It was depressing for me to stop nursing Madeline because she was so great - and healthy and the bonding time was amazing! I loved every second, but I was also working a job that wasn't near as supportive in allowing me time to pump between transports or even the right environment. I lucked out in comparison to my fellow co-workers that were also nursing mothers, but it was still rough.

Anyway - one day while surfing Facebook I came across Pink Cocoon and was just blown away. Cindy is an amazing woman and actually helped Culpeper Regional Hospital become the first Baby Friendly Hospital in the Commonwealth of Virginia. I was working at the hospital when the announcement was made they received the accreditation, it was amazing! Cindy has gone above and beyond in the region since then holding meetings, breastfeeding consultations, Douala services, childbirth classes and so much more...all while working in the birthing center at Culpeper Regional Hospital. And this weekend she is organizing The Big Latch On event.
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So where does Gracie's Gowns fit into the picture? Well most know that I have sewn for several years now, and before the last 18 months of sewing our precious hospital gowns I sewed everything from quilts to burp cloths, nap mats to i-spy bags and several reusable items - reusable snack and sandwich bags, organic hot/cold packs, cloth diapers, un-paper towels and reusable nursing pads. This past weekend I was going through my containers of items I have sewn for sale at craft shows, and found a couple nursing covers and several sets of reusable nursing pads. I gathered the items and messaged Cindy on Facebook offering them to her for The Big Latch On this weekend to use a raffle items/goodie bags, whatever she'd like to use them for.

The other amazing part is Cindy also asked for a sample of our Newborn gowns for use at Culpeper Regional Hospital in the birthing center. We've already donated some 2-4 size gowns to the hospital for use in their Step-Down unit. They are reused by the hospital because they don't have that many children admitted, and when they do they don't stay very long. We will also be making them some 6-10 size gowns as well this year.

Here is the package we sent over to Cindy for The Big Latch On event this Saturday - anyone that is in or around the area is welcome to attend. Groups of breastfeeding women coming together at registered locations around the world to all latch on their child at a set time. All the breastfeeding women and children are latched on for one minute at the set time and are counted by the witnesses. The numbers are added up and we see if we can beat previous Big Latch On records or maybe even the world record! 
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Good luck to all participating in The Big Latch On event this weekend and enjoy nursing your babies together! Hope those that win the items we donated like them!
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