Everly got her medical band on April 11, and started phasing in to wearing it 23 hours a day the next day. She is now on day 4 of wearing it 24 hours a day and she is doing great with it! During her hour of “free time” we clean the helmet with alcohol, give her a bath, have some helmet free tummy time, and get in some(ok, a lot) of kisses on the part of her cheeks that are covered by the helmet.
She didn’t have to wear it through the night for the first several days, so day one I painted the helmet, and day two I sealed the paint with Mod Podge. True to my southern roots, I added her name and a bow. No southern girl should be without a bow.
Everly developed a flat spot on the right back side of her head while she was in the NICU recovering from her duodenal atresia surgery. This caused her to have a very difficult time looking left, and could result in torticollis(not being able to turn her head left) and difficulty with crawling and walking since it moved one side of her forehead forward and could potentially cause balance issues.
Unfortunately, TriCare doesn’t cover these helmets, and they can run into the thousands. I started a Go Fund Me for Everly’s helmet not thinking we would raise our goal, but every little bit donated would be a great help to us. We were absolutely blown away with the outpouring of support. We met and exceeded our fundraising goal in just 6 short days thanks to family, friends, and some strangers.
After wearing it for the first week, I can already tell a difference, and I can’t wait to see how she does after wearing it for the full time. Thank you to my “village” for helping us in our time a need.
Everly is now 5 months old, and I am thrilled by the progress she has made, and by how much she has grown. After getting discharged from the NICU we started speech and physical therapies through TriCare to help with her low muscle tone(a typical trait of Down syndrome) and her poor stamina and latch while feeding. Because of her wonderful speech therapist, Amanda, Everly was introduced to her bottle the right way, and I was taught proper techniques and tricks to help her. We haven’t had to use her g-tube since February 5, and we are looking forward to it coming out at the beginning of May.
Her physical therapist, Rebecca, has worked hard with Everly and myself to encourage and train Everly’s muscles and she is hitting milestones ON TIME. On time. I can hardly believe it. She can roll from her tummy to her back, she found her midline, she grasps toys and brings them to her mouth, and she can hold her head and body up when supported. The medical band has thrown some of this for a loop as she’s now having to compensate for the extra weight on her head.
Everly, hard at work with Ms. Rebecca. <3
Everly babbles and plays with us and lights up each morning and afternoon when I pick her up. She giggles when tickled, and loves to watch her big sister play. Typical 5 month old stuff from our sweet girl. Daddy is being tasked with finding the jumperoo so we can see how she does with it!
Happy Easter from my little sweeties!
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.
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!
That’s one proud big sister right there, wearing her Team shirt.
Everly getting in some tummy time amongst the sea of shirts.
Cuteness. Pure cuteness.
Packing the BOX heading to Jacksonville, NC. A whole box full of love.
Mailing packages at the post office.
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.
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.
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.
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.
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.
With two of these beautiful ladies today. Don’t hate on our school shirts. ;)
The coolest people our students will ever know.
A close up of who the fuss was all about. 21 weeks and happy as a clam.
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.
Spreading warm fuzzies at the perinatal office.
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.
Sweet little peach.
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.
Just the beginning of our Happily Everly After.
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.
Snugglin’ with mommy.
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).
The first carefully measured 5 ml. bottle of colostrum!
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.
Time to go home!