How is Everly Doing?

Working on our crawling stance here

Well, I've written about this and that and figured it was time to give you a quick glimpse again at the overall picture with Everly.

Stats: She was recently at 11 pounds, 1 ounce but has since dropped to 10 pounds 14 ounces. Hoping this is temporary and she climbs right back there again soon. She's grown a bit, too. She's now 23 inches long. She just received her first of 6 or 7 Synagis shots for the yuck season to help fight upper respiratory infections. She also received the flu vaccine as did her brothers and now we (and my parents) will be getting them.

Cardio: No change since her 5 month visit. All is the same which means that her pulmonary hypertension is balanced by the hole in her heart (VSD). We go back again for our monthly check next week.

 

Happy 7 months birthday!

Feeding: She continues to play around with the special bottle we have for her as well as the pacifiers. She clearly does like them and responds immediately to them. However, we can't get her to suck them at all. She continues to take licks of baby food but nothing more than that. She still eats every three hours around the clock at 8, 11, 2, 5 and then repeats. Her feeds take a wee bit longer now because her volume has increased to 60 ml during the day and 55 ml at night. She also gets a quick flush of 5 ml of water after each feed.

Therapy: She has the Early Interventionist (Mary Ann) on Mondays, Physical Therapy (Gloria) on Wednesdays and starting today a Speech Therapist (Davina) on Mondays as well. Those days are light in the house and we make sure she naps well so that she is full of energy and she's not tuckered out before they even begin. I follow up with various exercises at home on the off days: tactile and visual stimulation, tummy time, head and neck control, reaching for toys, etc.

 

My little fashion diva!!

Progress: We've noticed a huge growth in Everly's progress. She's now starting to rub our arms and play with things next to her hands. She was wearing a tutu the other day and she just kept playing with the frill on the tutu. She is very curious and does like stimulation like walking around looking, playing with toys, listening to Baby Einstein and such. We've also noticed that she is starting to become a homebody which isn't a bad thing in this season. She's not too happy when we take her anywhere suddenly. Thankfully, while it's still hot, we don't have many places to go but periodically the doctors. Hoping once the weather is cooler for her, our walks can begin again. It's still in the 90's here which is WAY to hot for her to be out long. She is now beginning to put pressure down on her whole legs for a good minute or so. They are completely stiff leg and a bit angled but it's progress nonetheless and I couldn't be any prouder of my girl! She's readying herself for walking one day!

MISC: We've had many God stories that I'm working on writing to share. More just for my own recollection years down the line. But I will share them with you, too. The ways God shows up continue to astound me!

 

One of her many bathing suit photos. This is one of my favorites!

At Home: The boys are full steam ahead in school and I'm still trying to catch up. Honestly, I needed a whole week of an empty house, no responsibilities and an extra 8 hours in each day to be fully prepped for school. I vow to make this a great year and am working hard to stay ahead of the game. Burning the midnight oil and teaching the boys new responsibilities as a part of our plan for success this school year! Okay, the burning of the midnight oil isn't really a part of the plan but has since become a part of reality and it gets figured in!

Reflux: This has been really bad for a long time. For some reason, though, this last week (now 7 full days) she has not had but a small, very tiny, amount of choking episodes for which we are thankful. The only change has been that our prescription has come from a different pharmacy but I'm not sure if it has anything to do with it. Either way, we are happy and so relieved for her.

 

The dentist!

Dentist: The boys both had cleaning appointments last week and while there our wonderful dentist, Dr. Lesser, offered to peek in Everly's mouth to see if there were any teeth coming. Well, lo and behold, yes, there were on the top and on the bottom! Much like poor Kendan's, the teeth look about as far the Great Wall from here so we won't be preparing for teething yet. She loved Dr. Lesser rubbing her gums and couldn't have been happier to lay back in the boys' laps (they took turns) and get a gum massage. It was quite fun to watch!

Tube: Ugh! Not my favorite topic by a long shot but it's necessary. She has become a Houdini at tube removal and seems to be able to do it in a split second. We've been having lots of tube reinsertions which is concerning because we are still not wanting to do the Gtube surgery. This past Friday, her tube actually split for some odd reason and we had to reinsert. However, for some reason it didn't want to go in easily and therefore, it took us 6 attempts! It was the most awful day ever. Two times it hit resistance, one time it went into her lungs, another time out her mouth, another time it hit resistance again and then on #6 it went in correctly. That was as hard for us, I think, as it was for her.

Birthday: Everly celebrated her 7 month birthday quietly at home with family with movie, pizza and cake. She slept during the celebration actually. True story.

I think that about covers most of the updates since my last one with just all the stats on her and how she's doing. Please continue to check in on Facebook for quick every day updates and pictures frequently. It's a public page so feel free to invite people to her website and to her Facebook page.

Prayer Requests: Now we are approaching the cold and flu season, plus there's now the new strain of Enterovirus to be concerned with as well. I am asking for prayers for her good health and to stay protected (and our family) from the yuck that is out there. It can be deadly for her should she catch it. Please pray for other Trisomy babies and children as well to stay healthy and free from sickness. Thank you!

With love and appreciation,

Crystal

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

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

The Daily Grind

Sweet Pea turned six weeks this past Thursday and today marks her 44th day birthday.  What an accomplishment!  I could not be prouder of the strides she's making.

Afternoon stroll around the neighborhood. Her shirt says "World's Cutest Little Sister." How did they know??

When we first began this journey, we read all the literature, took note of all the statistics and mentally prepared for the worst right away.  It's easy to do.  The doctors and medical journals all make it seem that death is at the front door. However, all these days into it, I have realized that Everly hasn't read the literature, checked out the statistics and is not prepared for anything other than her next meal.

All this to say, that while her diagnosis will not change, our treatment plan for her can and will.  We are home under Hospice and will continue to be so as they are incredibly helpful.  However, we are taking Everly's lead and are seeking ways to help her overall as opposed to just a wait-and-see plan.

We have plans to visit a Speech Therapist in a couple of weeks who hopefully can help us teach her how to latch on for nursing.  Again it will be only for minutes but precious minutes nonetheless and I will take every last one.  In order to assist Everly with this and to help keep her feeding tube in place, we will visit her GI doctor this Monday to transition the tube to her nose.  I don't like this idea but would like to give her the opportunity to nurse and possibly take a tiny portion of her feeding via a bottle, though we fear that is very unlikely.  The upside:  to ensure the first placement is accurate, an x-ray will be taken and because of her small stature, we will get to see a current view of her lungs.  The other upside:  we will have this new and current x-ray to take to her pulmonologist on Friday.  Physical therapy hopefully will soon follow speech.  Our daily grind of twice weekly trips to varying doctors and specialists shall continue as we seek to help our daughter live comfortably and improve her life as much as we are able.

The most exciting news for the week for us has been her heart diagnosis.  No, there has not been an additional finding; rather, quite the opposite, in fact.  I called the R.N. who is our cardiologist's nurse and asked her to read me the official medical diagnosis in Everly's heart.  I knew the two major things but wanted to know the specific wording.  When she read the three things the doctor had noted, I noticed that she left off Double Outlet Right Ventricle.  I promptly asked her about it and she said that according the doctor's notes, once the PDA (Patent Ductus Arteriosus) closed after birth, it appeared Everly has more of a large VSD (Ventricular Septal Defect) alone than the Double Outlet in addition.  Say what??  Just in case you left your Merck Manual at home, the Double Outlet is much more complicated and is significantly more threatening to her heart's ability to function.  The nurse said we were told this in the hospital and it may have been the case but with all that was going on, it seems we missed this enormous piece of news.  Regardless, we were beside ourselves with joy at the new "old" news. 

Checking out her toy

Aside from the mostly medical updates and doctor visits that seem to flood our weekly running tablet, we have also been continuing to love our little girl and give her experiences.  For example, to check off bike ride from her baby bucket list, we went on a family bike ride last Sunday through the neighborhood and to the park.  It was a beautiful, warm spring day and perfect for such an outing.  While I won't lie and say it was the easiest jaunt we've ever taken, I will tell you it was the most memorable.  Yes, we did have to stop every few minutes it seemed to check her ever constantly beeping machine.  Yes, it took us nearly 45 minutes just to get from the house and to the driveway packed and ready to leave.  And, yes, it was a lot of work.  But, it was worth every ounce of preparation to have the experience with her.  If you have not guessed it by now, you must know that our family enjoys and participates in mostly outdoor activities.  So, to be able to take her along with her oxygen and all her machines on this special day outing, it was joyful for all of us.

In addition to that big trip, we purchased a jog stroller for her this week.  While we have a regular one, we needed one with all-terrain wheels so we can take her on our hike trail.  With the weather heating up, I have been concerned about continuing to put her in my sling when we go hiking.  Besides, laying her flat is best for her airway and her breathing.  She wasn't sure about the bumpity bumps mid-way through the hike but at the beginning and in the end, they didn't seem to disturb her.  Love getting her outdoors!

Hike using her new all-terrain stroller for the first time. So fun! Apr. 3, 2014

Since we have the new jog stroller, we decided to spend the day at the beach today and enjoy sunset together.  Again, the weather was perfect and fit for a beach outing...sunny and not one degree too hot.  Just perfect.  We did have to watch her very carefully today, though, as she continuously desated and we did need to give her 02 periodically.  Normally she is well-oxygenated when we are outdoors but today she seemed to struggle with it.  Thank goodness we are going to the cardiologist on Monday and will have a repeat echo (last one a month ago before we left NICU).  But overall the family did have a fantastic trip to the beach and enjoyed ending it with a coral pink Florida sunset.

As I end this journal entry, please remember to pray specifically for Everly to have a good report from the cardiologist on Monday and that her echo is clear.  Please also pray for comfort for her and for the discernment of the doctors treating her.  Please pray for peace and calmness to radiate during this tumultuous time for our family.

I also ask that you pray for Everly's new unborn friend with T18, Elisabeth Maxine Scholes, who is due at any moment.  She has a CaringBridge site as well under her name.

Please continue to share our website, her Facebook page Love For Everly (my friend, Courtney, who updates that has been out of town but we will have new pics and info again soon), and my FB page (Crystal Hopkins) where I tend to post my favorite daily pics now.
 

Indian Rocks Beach April 6, 2014 Family Beach Day

Doctors have no answers why these genetic conditions exist and there is no cure whatsoever for them.  Please help to spread awareness about this so little known condition so that more research can be done and the population in general educated. We didn't even know or had ever heard of T18.  You know what you find when you google T18, but help our family and the entire Trisomy 18 family know what the face of T18 truly is.  It's not a life filled with sadness and sorrow  but rather it's a life of pure love and joy.  That is what Everly gives us and we want everyone to know she's more than the medical journals say about her.  She is perfect!

Psalm 18:30   As for God, his way is perfect: The LORD's word is flawless; he shields all who take refuge in him.
 
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