T-shirts, T-shirts everywhere!

   Our Buddy Walk for Down syndrome Team Everly t-shirts came in on Monday, and we were very busy getting them sorted and ready to ship out! I’ve been overwhelmed  by the support that our friends and family have shown for our sweet Everly!’We sold 59(!) shirts and raised $368 for the National Down Syndrome Society.  

Fifty-nine. 59.

    I had to keep looking at that number, and was again over come with emotion when the shirts came in. Fifty-nine shirts to sort, label, and ship out. Fifty-nine shirts being sent to 59 people who love and support my little girl, and people with Down syndrome. WOW.  Excitement, tears of joy, and a little bit of panic when I realized that I(me, the unorganized person) had to sort them(correctly!) and get them sent out, or hand delivered to all 59 of Everly’s Team!  

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That’s one proud big sister right there, wearing her Team shirt.

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Everly getting in some tummy time amongst the sea of shirts.

 

 

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Cuteness. Pure cuteness.

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Packing the BOX heading to Jacksonville, NC. A whole box full of love.

 

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Mailing packages at the post office.

 

 

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Sweet girl snuggles at the end of the day.  Everly says, “Thanks for being my number one supporter Kaylee Dee.”

 

I can’t wait for the Buddy Walks in October.  My family has been blessed with more love and support than I could ever imagine. 

Throwback Thursday: Diagnosis to Now

For this #tbt I decided to do things a little different.  Not just a picture on Facebook or Twitter, but a look back at our diagnosis through pictures.  Now, I know what you might be thinking, “Pictures?”  Don’t worry, I wasn’t in the midst of THE most tumultous day of my life posing for pictures or snapping selfies. But I was texting.And boy am I glad that I did text. Not just for support that day, but because had I just simply phoned people(I did) or just talked to people in person(did that, too), I wouldn’t have a tangible way to look back and really, truely remember those first hard conversations. 

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I’ve taken just a small glimpse of those texts between myself, one of my very best friends, Sam, and my friend and mentor, Susie, and pic collaged them, as well as from a dear new friend that I was introduced to that day, Kris Barrett.  They got my bombshell of a text and responded with all the right things to say to me.  

 

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And the best part? Looking back over these texts today when I got to the end of the conversation we had on that fateful day in July, the group message goes back to talking about getting our classrooms ready for the upcoming school year.  They got me through it, helped me accept it, and then we got on with our lives.  

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No, that day certainly wasn’t the last time we talked about Everly’s Down Syndrome diagnosis, but we didn’t dwell on it, and it didn’t become a defining characteristic of her or me and the pregnancy; and for that, I can never thank them enough.  

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With two of these beautiful ladies today. Don’t hate on our school shirts. ;)

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The coolest people our students will ever know.

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A close up of who the fuss was all about. 21 weeks and happy as a clam.

Leaving Behind A Little Hope

I recently had to return to Sacred Heart in Pensacola for follow up appointments with Everly’s endocrinologist so I took the opportunity to stop by the perinatal center where I was seen during the pregnancy to show off my sweet little peach.  I asked at the desk to see our geneticist, Sam Stover, and she came up immediately.  I haven’t blogged about her before, but I am so thankful that she was there from our first appointment for the amnio through the end of my pregnancy.  A graduate of N.C. State, and native of Eastern NC, she was a little slice of home, and a whole lot of heart.  She eagerly took Everly in her own arms and cooed over her cuteness.  We also got Dr. Beiswenger to show her off to him as well.  It was great to see two people who were such an important part of my prenatal care without any of the fears that I had each previous time I had been to the office- scared of what would be found on the ultrasound, and what it would mean for my little girl.  Now we were there as a celebration; to talk, not just about Down Syndrome, but about other typical baby stuff too- how is she sleeping, feeding, how is big sister adapting? etc. Oh, and that picture I promised to send? It was hanging in Sam’s office- where people constantly stopped in to look at my happy little girl.  It’s since been moved out to the main board in the hallway. I like to think it  will offer hope, love, and bring a smile to everyone’s face that sees it.  Image

Spreading warm fuzzies at the perinatal office. 

Our happily EVERLY after…

  Today our sweet Everly is 15 weeks old.  She continues to amaze me each day with her strength as she works in both speech and physical therapy.  She’s “graduated” to only going to speech for feeding support one day a week, and hasn’t had to use her G-tube in 3 weeks! She continues to get most of her breastmilk in a bottle, but nurses at least once a day during the work week, and at least three times on the weekends.  Watching her grow from a newborn who had no rooting instinct and very low muscle tone, to a feisty little girl who wakes up when she’s hungry, roots, and has a good latch, has been so wonderful.  I’ve also had the pleasure of watching first hand as her little personality begins to shine through.  I wake up each morning to happy giggles, and sweet little smiles.

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Sweet little peach.

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Happy little smiles.

  It’s amazing how easily we have made the transition from a family of three to a family of four.  Juggling two baths and bedtimes each night is not always easy- and sometimes Everly ends up staying up later than I’d like- but I wouldn’t trade our bedtime snuggles and stories for the world.

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Just the beginning of our Happily Everly After.

 

Finding a Voice in the NICU

Everly Caroline was born on November 14, 2013 at 8:55 am in what her father described as an “anti-climatic birth”.  Which is David lingo for, I didn’t lose my mind and scream and yell, and I only had to push through 3 contractions, and out she came… a beautiful, blonde, blue eyed, 6 pound, 15 ounce bundle of pure cuteness.  She was quickly taken over by the NICU team and assessed, as well as tubed because of the duodenal atresia, and then brought back to me for a little bit of momma time before she would have to go up to the NICU.  Image

Snugglin’ with mommy.

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Everly was taken down for her duodenal atresia surgery on Friday, the 14th in the morning, and was back in the NICU recovering about three hours later.  Her surgery went well, but she did not take the anesthesia well, so she had to wake up on her own.  We opted to have a G-Tube put in during the surgery so that she would have a shortened NICU time, and we could work on building up her stamina if needed at home.  We had a two week wait before Everly pooped and was cleared to drink milk, during which time I pumped like it was my full time job- because it was.  I was pumping an impressive 40+ oz. a day at the time(something a miss terribly now, but more on that later) and building up my supply for when she was able to have that first bottle.  I also built up a horde of graham crackers and hospital pillows that I was quite proud of(it’s the little things).  Image

The first carefully measured 5 ml. bottle of colostrum!

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We spent the next 2 weeks building up 5 ml a day to a full feeding so that we could finally go home.  During this time we researched and asked questions every step of the way until we were given answers.  We met wonderful nurses and doctors that truly cared about Everly’s well being and made friends with other families during our stay.  After one month and 2 days, we were finally able to walk out of Sacred Heart a complete family, an introduce Everly to a VERY excited Kaylee Dee for the first time.

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Time to go home!

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Tidal Wave of Emotion

    As the RN searched for a vein in my uncooperative arm, my eyes roved over the boards of newborn pictures that lined the wall.  A brag board of sorts, showing off all the clients they helped deliver babies at the perinatal office.  Happy, tiny, twins, triplets, and quadruplets posed in their matching crochet and knit outfits.  Reminders of the many happy families that had come and gone in the doctor’s office.  And then, finally, my eyes settled on what I had been searching for in the faces of all those sweet babies; the almond shaped eyes and sweet little nose of a baby that has Down Syndrome.  Tears poured down my cheeks, and as I tried to explain my sudden outburst of emotion to the nurse, I realized I wasn’t even sure why I was crying.  Was it because I had found a child who shared Everly’s diagnosis? Or because out of all the boards and the hundred or more pictures that I had been looking at for the past 5 appointments, this little girl was the first baby I’d seen on them that had DS?Was it the reality of the number of babies with DS that are terminated, miscarried or born still?

    After a couple additional 2-D ultrasounds since the diagnosis, they have seen that Everly had duodenal atresia.  This basically means that she has a block between her bowel and her small intestine and isn’t able to digest anything.  Immediately following birth she will have to have surgery to remove the block, which will be followed by a 2-3 week stay in the NICU as she recovers from the surgery and is able to eat on her own.

    I think finding out she would need surgery has been just as hard as the DS diagnosis.  We will only get to see her for a short period of time before she is taken away for surgery.  I won’t get to nurse her as soon as she’s born, or spend time bonding with her; and that has been a hard pill to swallow.

    As her due date gets closer I do know one thing for sure, I can’t wait to send her picture in to the perinatal office at Sacred Heart.  

Me in all my pregnant glory!

A life changing diagnosis

July 25, 2013. My mom’s birthday, the day she was driving 15 hours to come visit our family, and the day my doctor called with the earth shattering news: 

“We got the results back from the Panorama fetal DNA screen and your baby tested positive for Down Syndrome.”

As I lay there crying and mourning the loss of my dreams for our little Everly, Kaylee Dee  snuggled up next time me, trying her hardest to comfort her mommy.  My visions of our future seemed to crumble around me as I came to the realization that our second little girl would have the odds stacked against her from the beginning.  I became disconnected and thought, “What did I do to deserve this?”  

And then, somehow in the midst of my sorrow, Kaylee Dee’s voice and actions broke through.

“I love my Everly,” she said as she kissed my growing bump.

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Sweet Kaylee Dee.

And it hit me. MY Everly.  She was still MY Everly.  Nothing was going to change that. No diagnosis will change the way I feel about her. So I began to research, and research, and research, DS.  When that got overwhelming, I turned to blogs. Real families, blogging about their lives as parents to children with DS. That renewed my hope, and my excitement and I began looking on the bright side.

We still had to have a level II ultrasound done, and David and I opted for the amniocentesis  for a 100% diagnosis, but the more I talk to real women, women introduced to me by dear friends, the more I felt this WOULD be manageable.  I would be lying if I said that I’m not still sad sometimes, or scared about what the future holds for our family, but I do know that we can handle this.

After all, she is still OUR Everly, she just has one extra chromosome.  And I can’t help but think, “What did I do to deserve such a beautiful blessing?”Image