A Party Fit for a Princess

 

The birthday princess

It can safely be said that Everly's 6 month bash was a party fit for a princess! It was a perfect day in every sense.

We were so blessed to have so many hands on deck to make the party just right. I could not discuss the party without making mention of the special folks who did so much for it! Many thanks go out to those who just soared above and beyond for our sweet Everly. Here goes, in no particular order:

Gina & Lauren Deptula: overall party planning with me, floral arrangements, endless cutting, rolling and décor prep, running around getting supplies, you name it, they did it! (Check her out at Craftology 101 on FB)

 

Everly's beautiful dress, shoes, handmade socks, and tiara

Heather High: donating her time and talent to capture all our special moments at the party and all the editing after (Check her out at High Family Photography on FB)

Traci Heindorf: the adorable princess cake and meticulously handmade pea pod cupcakes (Let me know if you need a great cake or cupcakes for an event, I can give you her contact info.)

April Hetrick: tons of cookie favors individually decorated and wrapped

Kendra Drake: making tons of fruit wands and a special Princess Pea Pasta salad for the party

Sarah & Dan Edgar and kids: hours of set up and clean up combined

Melissa Perez and kids: hours of set up and clean up combined

Patricia & Michael Lesch: coming early and jumping right in to do whatever necessary for set up

Silly Little Girls: 1/2 birthday outfit and bloomers for sweet pea

Joanne Bishop: Thank you for Everly's surprise birthday outfit! What a perfect dress!

Kelly Adams & Christy/Bobby Barnes: for the huge sacrifice to make the long trip to Everly's birthday!

To all our guests: Thank you for making it a point to come to our daughter's party. We love you!

 

The food table.

To my parents: Thank you for pinch hitting whenever and however we need you on a constant basis. Our lives wouldn't be the same without you and our kids certainly wouldn't be who they are without you!

A big thank you to everyone who sent in a picture to make her Wall of Love!

Thank you all for your selfless devotion to making the day everything we hoped it would be for Everly!

Everly handled the party like a champ. She seemed to be fascinated with all the faces and people which didn't surprise us as she's never actually been anywhere with this many people at once. Mid-way through the party she was so tired that she quietly dozed off in her cushy throne. Sweet girl.

The room was literally transformed from blah to beautiful! Puffy lanterns were hung from the ceiling. Linen tablecloths with table runners and floral arrangements covered tables. Banners adorned the walls above the food and sweets tables. The dessert table covered in perfectly frosted cupcakes and a breathtaking princess cake. The Wall of Love full of pictures of families praying for Everly. The room was perfect.

 

Kelly Adams presenting us with the angel after the party

I was able to have some special time with Kelly Adams after the party that meant the world to me. Kelly made the trip from Jacksonville with two of her daughters to attend the party. What made this such a special meeting for me is that Kelly is Elizabeth Joy's mother, Everly's friend who went to be with Jesus on May 10 of this year. During our time visiting, she gave us a beautiful glass angel that has been passed to five other Trisomy babies, including Elizabeth, and now to Everly. What a special thing! She also brought with her and gave to Everly a one of a kind headband made for and called the Elizabeth Joy headband. It is made with the Trisomy Foundation colors and was worn proudly by Elizabeth Joy. It must have been such a moving decision to pass such a special item to our family that belonged to their daughter. Thank you, Kelly, for those truly special gifts. We treasure them!

 

Elizabeth Joy Adams 7/19/13 - 5/10/14 and Everly Marie Hopkins

We were so happy to see all the people who came out to celebrate such a big day in Everly's life. Such a blessing for us to celebrate 6 months with friends! It was such encouragement to hear everyone's thoughts and sentiments. To see everyone smiling and laughing and just loving on Everly was heartwarming. The love was plentiful in the room and for that we are so happy and thankful. It was a perfect day. Thanking God for the opportunity to love her for all this time!

I can't wait to invite everyone to her 1 year birthday party!! **Too many pictures to include with this entry so more will be added separately to the Photo section in the next day or so. Check back for those. Plus, we are working on trying to upload the video Jimmy made for the party here so you all can view it, too. I'll let you know when it's ready.**

With love and appreciation,

Crystal

Everly's 6 Months Old

Happy Birthday!!

This past Wednesday marked Everly's 6 month birthday which is a huge milestone for her!

Saturday will be her big Princess and the Pea bash and we hope you can join us!

However, if you are not able to due to location, illness or prior commitments, we would still love for you to "be" there. Please send me via text or email a picture of you or family to include in a "Wall of Love" for Everly to be displayed at her party. Following the party, the pictures will be placed in a special book for her (and us). We are blessed over and over by all those who pray for and support us in various ways. It would mean a lot to our family to have a picture of all of our prayer warriors and their families.

crystaldmm@earthlink.net

For real! We played dress up with swimsuits. I have a slight obsession.

Thank you for taking the time to send it to me! I'm preparing the board Friday for the party so send 'em on to me!

By the way, after the party and a few solid hours of sleep, I plan to post a healthy size update on Sunday. Stay tuned for that one! Plus, I will do an all party post, too, when I have pics to post and have compiled my thoughts.

Thank you for your continued prayers for Everly! She is "well" and illness-free and is ready to don her princess gear!

With love and appreciation,

Crystal

Yay! Splints to help open her hands. She will only wear them while sleeping. And, yes, she is asleep while the OT is measuring her for the custom fit splints.

An awesome therapy tool Daddy made for Everly to use in our home. Helps with balance, spatial positioning and more.

Morning photos by the natural light in her Princess and the Pea dress.

Photos Please

Hi everyone,

As you know, Everly's big 6 month birthday party is August 23rd. However, some people are not able to attend for a variety of reasons...location, schedule, illness. We would like you to still be "present" at the party and we've found a solution for that!

We are going to create a Wall of Love for Everly at her party with photographs. That's right! We are going to print copies of photos (hold on, we're getting to that part) of her supporters, followers, friends and family and display them. So, all you need to do is either snail mail us a 4 x 6 photo of yourself or your family or send one image via email or Facebook messenger.

Now for you folks that are planning to attend, please also send us a photo of yourself and/or family letting us know in a note where you're from, who's in the picture and how you first heard about Everly. Why? Because after this party all the pictures are going to go in a photo scrapbook for her memory items.

Thank you in advance for helping make this a wonderful party!! Don't forget to RSVP :-)

If you would like to mail her a card (don't forget your photo), you may do so at the following address:

Everly Hopkins

3905 Tampa Road #2696
Oldsmar, FL 34677

With love and appreciation,

Crystal

We Did It!

Our AT Adventure

Well, we are home now. What a trip it was!

Packing for a trip with a 7 year old and a 15 year old is one thing, but packing for a medically fragile baby is a whole other story. I was so worried the week prior to leaving that I would forget something that we needed. I made several lists and had them in varying places around the house just in case I thought of something else.

The final report: nothing was left behind, forgotten or otherwise MIA. Yay!

Most of what was packed, though, wasn't even used fortunately. No, you didn't read that wrong. Most of the extras that were packed were medical/emergency/just in case items. And I am so pleased to report that it all stayed unopened.

In case you were wondering, here's a look at the pack list for her alone in no particular order:

3 large oxygen tanks

3 medium portable ones

mask

ambu bag

nebulizer & mask

Pulse oximeter, leads and sensor

meds: Diastat, Prilosec, Caffeine, Milk of Magnesia, Polyvisol, Albuterol, another seizure med, and Morphine

Tegaderm tape, white pad, medical scissors for retaping her tube

1 extra NG tube

15 feed bags

Food pump for night time feeds

2 flashlights for night feeds and pumpings and to check on her

countless 10 ml syringes for her milk

numerous 3 ml syringes for some meds

handful of 1 ml syringes for other meds

2 stethoscopes

bottle warmer

2 cans of formula for night feedings and calorie fortification

bottles for mixing and storing

thermos for hot water to heat milk away from home

jug of nursery water

jug of distilled water to clean feed bag in between feeds

Lysol spray

Lysol wipes

Travel thermos (2)

thermometer

nose sucker

brush

Lube for NG tube

Nasal spray

Infants' Tylenol

Suppository

Breastpumps: the battery one and the hospital-grade, flanges, wipes, sterile water for on the road cleaning,

Car refrigerator for meds that need to be kept at a certain temp and mama's milk

tape

Vaseline

qtips

nail clippers

2 playmats

toys

baby books

her bible

foam pad

therapy chair

toy bar (it comes apart)

blankets

sweater

jackets

sleepers

socks

summer outfits

cooler weather outfits

headbands

bathtub (foldable)

shampoo

body wash

wash cloths

baby towel

her lovey

diaper cloths

blankets

spoon

And I'm sure now I am forgetting some things but you get the point, right?

Our trip was truly magical, for us the happiest place on us. Sorry, Mickey, but you've got nothin' on the mountains!

The forecast was glum but it wouldn't shake our enthusiasm. Rain everyday. Yup. Everyday. 

My absolute favorite picture of the week and is number 2 of my all-time favorites of her face pictures!

But, boy, did God show up big!   

We had unbelievably beautiful weather all the way until our last day but we were packing up anyway!  Our week was packed with fun-filled days and plenty of outdoor experiences.  We spent a lot time enjoying the amenities at the villa this go around.  We are usually here in February when it is brutally cold and snowing (yes, by our choice!).  And while there's stuff to do, the boys found it to be a much more "full" trip in the summer.  We fished, rode in the paddleboats, played cornhole together, went for walks, roasted hot dogs, made s'mores and sat on the porch.  The boys played cards with Papa, went swimming, and worked on some projects at the activity center (hiking sticks, terrarium, sand art).  

Nana, Papa, and Everly down by the creek.

The rest of our activities was pretty much in the great outdoors.  We went on two college tours with Garren.  Then we stopped and found a rather large swift running creek to dip our toes in and it was a hit!  Everly enjoyed the scenery and was fascinated by the sounds.  It was quite fun to watch her study the trees.  We hit the AT or Appalachian Trail for a brief walk up Roan Mountain to Round Bald.  That was, for me, the reason for the entire trip.  For Everly to see a white blaze and to be on this special footpath.  And we did it! 

My best friend, Wendy, and her three girls came up for a visit one day.  What a special treat that was for all of us!  It's always nice to sit on the porch and have girl talk!

It turned out to be the trip we had all dreamed of for her.  We were so blessed and thankful to have this opportunity.  We will cherish every memory from it.
Okay, now some updates on Everly:  Her weight gain is slowing some as she's 10 lbs 2 oz right now.  She's doing something funny with her tongue where she swirls it and sticks it out.  It's actually quite funny to watch.  She's still just taking licks of baby food.  But she is enjoying her pacifier but isn't sucking it still, just playing with it.  She's had no illnesses or sickness and for that we are thankful.  She'll have her 6 month check up the week after next.

That brings us to the next point...she's turning 6 months old next week!  Her birthday party is Aug. 23 from 3-5 and we hope you can make it!  Please send me an email or text to let me know if you plan to attend so I can plan accordingly.  It is going to be a super special day with games and yummy food! 

Please keep my dear friend Dana and her family in your prayers as they've just now passed the one month mark since Melanie went home to Jesus.  Time does not heal wounds like this.  

Also, please keep Anissa's sweet girl Elisabeth Maxine in your prayers as she's had a few unsettling reports on her health as of late.  We want to lift her name up to our Heavenly Father.

  Here's my smiley princess!

Thank you for interceding on their behalf, friends!  If you will also pray that Everly's health remains event-free, no germs cause illness and that she remains safe during her party.  

I'm tired tonight so I will sign off now.  Hopefully next post will be more meaty and specific!  But better something than nothing at all, right? 
 
With love and appreciation,

Crystal

 Papa and Everly taking a nap. So sweet!

Happy Birthday!

 

Everly's birthday present from mommy and daddy! SO CUTE!

Yesterday marked Everly's 4 month birthday!  She has doubled her birth weight!!  8 lbs 8 oz

121 days...not one taken for granted.

What a special day it was for all of us that love this little girl!  She is surrounded by more love than would seem humanly possible.  Even though some have not met her in person, she has made a mark nonetheless.

She is such an easy baby!  The boys were such a challenge compared to her!  (Love you Garren and Kendan but sadly it's the truth!)  She usually goes with the flow, seeming to have the patience of a patron saint.  Waking her in the morning remains one of my all-time favorites of my day.  Her eyes open slowly and she begins to stretch and look around, scrunching her tiny body into a ball.  Then she just is wiggle worm on her changing table as I ready her for the day...happy, content and relaxed.  She knows the routine of car rides because as soon as she gets in her seat and the music and lights start on her seat entertainment toy, she just snaps to attention.  It almost always keeps her attention until she dozes off.  In the rare moments that she sleeps in her crib or other baby apparatus, she will wake and not even make a peep.  Thankfully we have the video monitor that we keep close tabs on in those situations since she's so quiet. She just really is so easy to care for all around.

 

Oh, my! How adorable is she?

She has a special way of studying your entire face when she is in her thinking zone.  Her big round eyes just linger over each part of your face as if memorizing every detail.  She takes after her Nana who is an investigator checking every last detail.  We all love when she studies us.  It is fun to watch as someone new to her holds her because she's even more interested.  There's a way she raises her eyebrows and crunches her eyes that tells you that she's in deep focus.

In her 4 short months thus far, she has managed to check off an extraordinary amount of experiences from her bucket list.  (Yes, she did tell me exactly what she wanted on this list if you are wondering!)  She has gone to the beach three times, gone fishing twice, tasted ice cream, looked at a shiny helium balloon, gone for two bike rides, been to the park and has hiked countless times around our favorite local trail.  We can't wait to continue to check things off as we  expand her list!  A few VERY special things we are looking forward to for her in the near future!

We are so grateful for her continued good health.  It remains to all of us an absolute miracle!  Even her doctors are amazed at how well she's doing, both overall and with her physical abilities.  Our cardiologist even commented that she is doing remarkably well "considering" and that her heart and lungs sound good.  The GI doctor mentioned how strong her neck muscles are becoming and was in awe of how well she was holding her head up.

 

I've kissed each part no less than a thousand times already!

Health-wise there are a few areas that we are working to improve for her.  One major issue is the frequency of her reflux episodes.  Not only are they not good for her esophagus but they also frighten her as she tries to hold the milk in and keep it down.  It is a 5-7 times a day battle for her and the current medication doesn't seem to be doing much to help.  She chokes as it comes back up which we always fear that could cause aspiration then possibly pneumonia.  So, we took her back to the GI this past week to discuss the situation.  She was prescribed another type of medicine that may work better for her so we have high hopes for it.  She begins it today so I'll keep you posted.  We also were told to increase her food intake now that's she's a little butter ball!  Hopefully her tiny stomach can handle the extra fluid.  If not, we will be fortifying her supply she is on now with extra calories instead.

Therapy continues to go well for her muscle tone.  We can see all the improvement and growth she's made.  She enjoys bouncing on the therapy ball and, of course, when they give her a little foot massage mid-way through session.  Feed therapy isn't going as well only because Everly's not really interested in taking the bottle.  She plays with it in her mouth and doesn't reject it but certainly has no desire to suck.  However, mama has a few tricks up her sleeve thanks to a chance encounter last week (although, we all know there are no "chances")!  Stay tuned to see how that turns out for us!

 What a sweet baby!

So excited that we will be beginning baby food this week!!  We have the go ahead from the GI doctor and as soon as mommy makes some homemade carrots and sweet potatoes, we'll get this party started!   Thrilled to be using our spoons from the baby shower and our stock of bibs that haven't been touched yet either!  We'll let you know how it goes.

While we are so thankful for where we are today, our family is also very mindful of other Trisomy families who are mourning the loss of their babies and still others whose babies are in the hospital.  Please keep their families in mind and pray for peace and comfort for them.  Precious Elizabeth has been in Heaven for six weeks now and today is her momma's birthday.  Our friend, Dana, is working hard to get her little angel home with her from the hospital as soon as she can.  It's taxing both physically and mentally so please pray for strength for her.

We have received many emails and questions based on my last Caring Bridge journal entry.  It has been asked that if someone donates to Caring Bridge as a tribute to Everly, will those funds go to her?  The answer is no.  They do benefit us in the sense that we are able to use this forum to share our story but the funds go directly to CB.  A GoFundMe account has been set up on Everly's behalf that will go directly to her.  A trust will be set up for her at the end of the month and the address for that will also be posted.  A special thank you to Toni Germinario for her idea to work on and set up both of those accounts.  Early on after Everly's birth, Courtney set up a PayPal for Everly and we thank you for that.  We appreciate the love shown to our family in so many different ways.  We are truly touched and appreciative!

http://www.gofundme.com/LoveForEverly

http://facebook.com/everlyhopkins
 

 

Sister laying on brother's lap.

We look forward to continuing to celebrate birthdays with Everly!  Save the date for the big bash...6 months!  If you would like to come celebrate it will be August 23rd from 3-5 at the Westchase Swim and Tennis Center.  Lots of fun games and a great day!  Surprise...it's a Princess and the Pea theme!  Yay!

With love and appreciation,

Crystal

Smooth Sailing at 3 Months!

This one's for Ari! Sorry I haven't been posting any pics of me with baby...I'm usually taking the pictures! Thanks for the reminder to put myself in them, too, Ari.

Well, we just hit another milestone with little sister...3 months!  That's right...92 glorious, love-filled days with this precious miracle!  It is almost still unbelievable in a sense that I sit here typing this because as I know I've said many times already, there was no expectation that we would be loving on her all these days, weeks and months after she was born.  Being sent home from the NICU to offer "love and comfort at home" doesn't necessarily give you hope for an extended future.  However, I have trust in God's sovereign plan and though we don't know when He will call her back to her heavenly home, we remain grateful for each moment we are blessed with this baby girl.

Things are smooth sailing for us right now and we just couldn't be more content.  She continues to be in "good" health...gaining weight on a nice steady curve, keeping safe from yucky germs, and working hard to strengthen her muscle tone.  Our last cardiology appointment a couple of weeks ago showed no change in her heart or pulmonary hypertension.  This continues to be a blessing because the PH offsets the effects of the large VSD (hole in her heart).   Without either one, things would not be going as well.  She also saw Dr. Graham, our pediatrician, this week and got a good report from her as well.  Weight increase is overall sufficient for her needs and is growing longer as well...20 3/4 inches up from 17 inches at birth!  We'll head back in a month for another check up to both doctors.

Everly and her bodyguards...determined to provide and protect!

She also had a GI doctor appointment a couple of weeks ago to discuss her feeds and a possible GTube surgery.  We were very intent on doing the surgery based on all the pros that it would offer Everly.  However, when we met with our cardiologist, she gave us the downside.  As much as we would like to look at Everly and say that she looks like any other baby, the harsh reality is that she is not.  In relation to this procedure, it presents rather severe risks for a baby with Trisomy 18.  We were actually under the impression that it was a simple endoscopic procedure, overnight stay and then home.  Unfortunately, that does not appear to be the case with her.  It would require intubation which makes us nervous because it is entirely possible she would not be able to be extubated after surgery.  Second, the stay is closer to a week and certainly not overnight.  It would require a special cardio anesthesiologist and would be done in a separate area where higher risk procedures are done.  Not that the last reason is completely awful but it certainly raises concern for us.  All this to say, that we have at this point opted to hold off on the procedure and revisit it at a later time.  Since the NG tube was inserted about a month and a half ago, she's only pulled it out twice which isn't too bad the GI told us.  I wish we could snap our fingers and have the surgery done and over.  But we'll reexamine as she gets older or if we encounter problems with the NG tube.

Everly's at-home interventionist, Mary Ann, on the first day of sessions! Love her!

So, believe it or not, we are still in newborn clothes and diapers!  Boy, if I had known that, I would have stocked up on the newborn sizes months ago.  Since we've worn and reworn and then reworn again all her clothes, my mom just "sacrificed" and went shopping online for some fresh NB sized clothes.  I can't wait to get them because they are so incredibly cute!  As if she needs an outfit to make her cute, right??  However, there are some new dresses coming with new colors, new patterns, new designs.  Oh, so exciting!  AND, mom ordered the most adorable new swimsuit for Everly and is going to make her look even more scrumptious!  I'll be posting some of her new things as soon as I get them in my hands for sure!  Poor Everly may be have to give up physical therapy for a day to model outfits...haha!

So now for a few updates on the rest of the family...

Mommy's friend, Gwynn, came to visit and posed with Everly and next to the rag quilt she made for our sweet baby before she was born. She even brought a gorgeous monogrammed and embroidered onesie with matching ruffled bloomers!

The boys (and I) are so lucky to have some friends who have either invited them over for some playdates (or "hang outs" as my 15 year old insists I say instead) or have taken them on outings.  How fantastic is that?  Thankfully, the boys are well-behaved and respectful so hopefully that makes the extra company all the more pleasant.  It has been a relief to know the kiddos get some fun days out!  So, here's a shout out to our friends!!  Love you guys!

We as a family are still doing P90X3 every day; although Kendan and my dad get their exercise in the pool instead, poor guys.  It's tough but we are each getting stronger daily.  It is a perfect stress reliever and hopefully is setting a good model for the boys.  We actually really like the program and while we must modify the modifications, it's still worth it!  Hoping for some "after" pictures at some point, too!  I'll keep you posted.
Tomorrow we plan to make a big trip out to Ft. Desoto for some fishing and beach fun with my parents.  Mom and I plan to chill on the beach with sweet pea while the "men folk" take some kayaks out and fish in the freshwater.  While it will be a fair amount of planning and work to get there, it should prove to be a fun-filled day and worth the effort!  We are all looking forward to the day!

Oh, by the way, we are still adding and checking things off Everly's bucket list.  Fishing was one of them and while we went to a local fishing hole last Sunday evening, this will be her first official fishing excursion.  Her list is so numerous and continues to change as the days go by.  It's fun to see all the experiences, some big and some small that she gets to have.

Nany with her gifts she made for Everly and given to her during the visit.

Speaking of...this past week she was visited by her Nany from Kansas.  She had a good time being snuggled and talked to by her while she was with us.  Nany helped put her to sleep, bathed her and even changed her.  Everly's grandmother even made her a turtle and a Christmas tree both adorned in pink!  Thanks, Nany!

So, I must confess that I am breaking every "mom" rule in the book on a daily basis with Everly.  With five of us in the house on any given day, Everly's body rarely touches a flat surface except for therapy time.  Yes, she does nap in my arms a majority of the time.  She is so melancholy that she rarely fusses about anything.  She definitely does not like to be moved around more than a couple of times, though, and really dislikes being taken from the bathtub.  Other than that, she's as cool as a cucumber.

She also has taken a sincere interest in staring into our eyes and at our faces.  If you have never been stared at intently by a baby or it's been a while, it is certainly a special experience.  Our rule here is never to break her stare.  Smile back at her for as long as she keeps her gaze upon you.  She is studying every feature, every detail of your face.  She scans your eyes for the longest time before allowing her glance to flow over the remainder of your face.  When she hadn't seen Papa in a few days, she scanned him for a good while when she first saw him again.  And just today, we were blessed by a visit from my friend, Gwynn, who taught me how to sew all the essentials in her room.  When she cradled Everly, she spent a good 10 minutes studying her because it was a new face, new voice.  That baby is truly remarkable!

She began her work with Mary Ann, our neighbor and her Interventionist, last week!  Yeah!  It is so much fun for me to watch someone else work with Everly.  Mary Ann is working with Everly on much the same thing as the therapist is...developing upper body strength, opening her fingers, holding her head up, etc.  She is also great because I can ask her tons of questions (poor Mary Ann!!!) and due to her training and experience, she's got the answers!  Plus, she comes to our house so it's one less trip out we need to make a week.

That brings me to my final thought for today.  There is NOTHING incompatible with life about her or any other baby I know with T18.  She communicates with us, enjoys things, dislikes other things and is thriving in her environment.  She is a miracle and a blessing from God.  God did not make a mistake.  She was created exactly as He intended and how lucky are we that we get to raise her?  I know that the more awareness that is raised by babies who are LIVING with Trisomy 18, the better the future will be for other babies to come.  Please help us to share the fact that having this diagnosis, as life-threatening and life-limiting as it may be, is not reason to throw your hands up and give up on these sweet, precious children.  They are compatible with life, joy and happiness!  Please share her website and her Facebook page. 

I would like to extend my sympathy to the Adams family of Jacksonville, FL who lost their sweet Elizabeth Joy recently.  She was so loved and so well-cared for by her family.  Her presence will be missed but her memories remembered.  Enjoy your new home with Jesus, baby girl.

Everly's friend, Elisabeth Maxine (sorry for my incorrect spelling last time on her name) is growing and is now six weeks old!  Her family is grateful still be holding their baby girl and making the most of every minute with her.  Her brothers dote on her and spend quality time with her daily.  Continued prayers for her good health please.  She has a Caring Bridge site as well.

Our other friend, Melanie Rachel, is still in the hospital and is recovering from a serious surgery.  She is looking good and even had a smile on her cherub face the other day!  I know her mama was so touched when she finally got to hold her again!  Please continue to pray for Melanie's recovery.

We are blessed to be a part of a new Trisomy family via Facebook and have met many new baby friends.  Please keep these new friends in your prayers as well.

Okay, for my prayer warriors out there...our specific prayer requests right now are that Everly will continue to remain in good health and free from yucky germs that may cause her illness which would be serious for her.  Please pray that she does not aspirate on milk or saliva which could cause pneumonia...bad all around.  Thank you all!

Also, we really, truly and honestly love hearing from everyone.  If you have time and can leave a guestbook entry, a Facebook message, an email, a text, please do and thank you!  I might not be able to respond but it is so special for us (even the boys read them!) to have encouragement.  We read and read all the messages.  I have saved all emails I've received since before even her birth and go through them when I feel less than positive about our situation.  Please know how valuable your messages are to us!!

By the way, still working (or rather starting) on getting my thank you notes out.  I promise it'll get done!!!

I've attached some favorite recent photos and even a video where we captured Everly responding to her name!  She's so amazing this little girl!

Ephesians 5:20 

Giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ,

With love and appreciation,

Crystal

Happy Birthday, Everly!

Our family of five. Didn't occur to me until after the party to have the boys wear their "Bodyguard for my sister" t-shirt. Oh well, love the picture anyway!

Days after we found out the diagnosis for Everly, we decided we wanted to host a one month birthday party for her.  We knew that even at a week old, she was already defying all odds.  We wanted to celebrate her life and her strength and everything that she is.  So, with those plans in mind, we began mentally preparing for her one month party.

Fast forward to the week of her party...the days leading up to the party were tense due to her coming down with pneumonia and her collapsed lung.  We debated canceling the party for this reason but opted to ask her doctor and Hospice nurse their thoughts.  We were so looking forward to an opportunity to allow those who pray for her and our family and love us finally get to see her.  With the medical advice, it was determined guests should stay back a bit, wear a mask and avoid touching her.  So, masks in hand, the party was on!

The beautiful cake

The day of the party was gorgeous!  Sunny and bright.  My mom...thank you!!!...spent the day before single handedly gathering all the party supplies and ordering the cake.  With decorations in hand, the boys, my dad, my mom and my mom's friend began the arduous task of sprucing up the pavilion at the park.  My friends, Heather & Courtney, arrived early as well to set up and take pictures of the special day.

It was such a sweet day for our family to receive friends and introduce them to our sweet pea albeit under the guise of a hospital blue face mask.  We were thrilled and so elated to spend a little time saying hello and showing off our new baby.  We think she's the cutest thing to ever grace the planet, you know!

 

Preparing for friends to come see our precious baby girl!

Our pastor and his wife, Jerry and Jeanna, surprised us by bringing one of Grace Family Church's photographers to also take pictures of Everly's special day.  Pastor Jerry said a wonderful prayer for her and for the day before we cut into the cake.  They brought her a beautiful pink bible with touching messages inside.  Everly also received several handmade gifts including a quilt that I know took months to complete (thank you, Sandy), handmade adorned socks (thank you, Chris) and a hand sewn doll (thank you, Luwina).  She also received numerous cards with meaningful messages for her big day.  I even got a special surprise visitor who I had not seen for years!!  Love you, Shannon!

So many people took time out mid-week, mid-day to come say hello.  Some drove quite a distance to be there for the party and had an even longer return drive home with traffic.  Some left work early to join us.  I know due to distance, many were unable to join us physically but were with us in spirit and sent cards and touching messages in their absence.  We want you all to know just how much your presence (including those from afar) meant to all of us.

 

Sweet pea with her birthday dress! (Her headband was too big and kept slipping.) She's so adorable in her tutu!!

It was a special day.  Our daughter, Everly, was diagnosed with a rare genetic condition that for all intensive purposes is touted as being "incompatible with life" by mainstream medicine, literature and statistics.  But she, however, was and is here to show that while the medical professionals know so much, they do not know all.  They do not know His plan.  Only God knows what His plans for our daughter are and it is our job to love her and not question His plan.   As I type this, Everly Marie Hopkins is now 35 days old and just hit the 5 lb mark!  You read the statistics...50% pass in utero, half of the babies born alive do not live past one week, less than 10% do not make it to their first birthday.  I believe that she is fulfilling a plan so special that He picked her to carry it out.  While the selfish, human part of me wants to keep her, I know that she is called for something so much greater than what we can ever fathom.

"Can you fathom the mysteries of God? Can you probe the limits of the Almighty? Job 11:7

So, we will continue to love her everyday, get to know more about her personality and just spend those precious moments with her.  We are grateful everyday for her presence and for our gift because she is giving us so much more than we could ever hope to give her.  Happy birthday, sweet pea!

 

Most of the guests gathered for a group shot...some had gone, others were coming later and a few were with kiddos on the playground. Thanks to all who made it!

If you would like to find out more about Trisomy 18, please visit this site:  HERE

 Please continue to get the word out about this rare genetic condition.  The more we are living with the diagnosis, the more we realize how little we all know about it.  Knowledge is power and with that power we can help these babies and children.  There is no known cause or cure but it does not have to stay that way.

Please share her website and Everly's Facebook (Love For Everly) page with friends, family and anyone who might be interested in learning more.

With love and appreciation,

Crystal & the Hopkins family

You're Invited...

Everly Marie Hopkins...3 weeks old...our sweet pea!

You are cordially invited to attend Everly's One Month Birthday Celebration on March 20, 2014.  Come out for this "meet & greet" and birthday celebration all rolled into one!  All are welcome to celebrate our little miracle who continues to amaze.
Party will be held at Baybridge Park in Westchase from 3:00 p.m.- 5: 00 p.m.  10020 Bridgeton Dr.  Tampa, FL  We will be at Pavilion 2.  There's an open field and playground as well so bring any outdoor equipment if you'd like and maybe even a chair or two.  Cake will be served.  No gifts but cards welcome.

Everly's health can be very easily compromised so we will be keeping her close to mommy and daddy.  However, we would love to have all those illness-free take a peek at our miracle and pride and joy!  Thank you for helping us keep her as healthy as we can so she can keep fighting!  In addition, our whole family is looking forward to some time with friends.

We know many of you are quite a distance away or are not able to make it.  If that is the case, we would still love for you to send any birthday wishes Everly's way via her website or FB so we can print them out for her.  Your love and sentiments are always welcome!!

It would be great if you could post on our FB birthday invite page or on this page if you do plan to attend. Thanks!

Love,

Crystal, Jimmy, Garren & Kendan
Nana & Papa

Happy Birthday, Everly

 

Happy One Week Birthday!!

Our sweet pea just celebrated her one week birthday a few days ago and today is 10 days old. We are cherishing every moment and enjoying each day. It seems odd to say the word "enjoy" in conjunction with what we know is to come but that is what we are doing. The word "enjoy" by definition is to "take delight or pleasure in" and that is exactly what we are doing. We enjoy changing her diaper...even the stinky poopy ones. We enjoy giving her feedings and all the necessary steps needed to do so through her tube. We enjoy watching her sleep and make frowny faces as she does. We enjoy doing her "hands on" care at 8, 11, 2, 5 around the clock and wouldn't miss it for the world. We enjoy doing what the nurses normally would like taking her temperature, measuring her belly, weighing her and the like. I even enjoy the round the clock, every 2-3 hours, pumping sessions.

See, this time is about enjoying her now...in the present...in the here and now. That's where we are and we are enjoying her.
 
She has such a soft personality. It is fun to see how she reacts in different situations. For example, yesterday we gave her a sponge bath and she literally slept through the whole thing! Granted, her bed was heated but still it was funny to see that it didn't bother her in the least. She especially loves her little head of hair washed and arches upwards as you stroke the hair with the comb. She rarely fusses and cries and is content in whatever position you put her in mostly. We would love to remove the tubes and wires and all the connections, but we make do since through it all, we get to hold her. That is the sweetest joy.

 Sleep kangaroo style...can't beat it!

I love bedtime the most because that's my personal kangaroo time with her. Thanks to my kangaroo shirt, I can safely sleep with her through the night. Albeit sitting upright all night in a chair, I'm holding my daughter as close as I can and for that I'm grateful. She doesn't make a peep and we are both in a state of contentment. For these moments, I am thankful. What a blessed momma I am!

 Jimmy learning to measure and insert her ng feeding tube

We aren't home yet but hope to be by mid-end of next week. Lots of arrangements have to be made for machines and equipment she'll need. Training sessions will need to be had by myself and Jimmy so we know how to use said machines and equipment. Jimmy actually learned how to insert her ng tube yesterday and we both know how to check for proper placement and residual from it. We know how to stimulate her when she forgets to breathe. All this to say, that it will take a bit in order to get us home. She is completely off IV feedings as of Friday night and is on full breastmilk now. That was also a requirement before bringing her home since we didn't feel comfortable bringing her home on IV fluids. She is slowly gaining weight which isn't necessary to get her home but is great overall. She weighed in tonight at a whopping 3 lbs 15 oz...hoping for 4 lbs tomorrow!

 

Silly boys photobombing little sweet pea's after bath photo!

And finally...Last week from Tuesday, the day we found out the diagnosis, through Friday have been filled with meetings. And when I say filled, I mean jam packed. I'm sorry I haven't responded to some direct questions, texts, emails, and calls as during and in between these necessary meetings, I attend to Everly and her needs. Thank you to everyone who has sent supportive messages and reached out. Please know that we have received and read each and every one. Due to the situation, we haven't been able to respond personally but please keep them coming as they are incredibly important to us. I plan to print all the messages and put them in a special book at a certain point. Knowing that we have that love is healing and therapeutic for us all. Thank you!

And now finally...I would be remiss if I didn't take a moment to acknowledge the extraordinary situation my parents are in and thank them publicly for their sacrifice. Initially as you know from my post on 2/24, Jimmy and I planned to go home for dinner each night and even Jimmy was to stay overnight every other night so my parents could take the night off. However, we received the diagnosis the day after so neither of us felt comfortable leaving her so we ditched the idea of going home for dinner. In our absence, my parents have completely stayed at our home and stepped in to take care of the boys. They bring them to the hospital each day to spend time with Everly and with us. They bring us supplies, clothes and whatever else we need. The hardest thing was the day we found out, we opted to tell the boys the following day as we were still digesting the news. However, both my parents had to return home to the boys that very night and feign normalcy even though they knew and were devastated themselves. My heart broke for the position they were in for over 24 hours. They are saints and the most stoic people I know. Mom and Dad, you will never know the importance of the role you have played during this time for all of us. While I know they would prefer to just stay at the hospital and spend countless hours with Everly, they allow us to and they attend to the boys. Thank you for your sacrifice!
  
"Give thanks in all circumstances; for this is God's will for you in Jesus Christ." 1 Thessalonians 5:18

With love and appreciation,

Crystal & Jimmy