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

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

Touching Base

Probably one of my favorite pictures! I love her chubby cheeks here and just how cute she is. This was taken in the stroller with the sun warming her face. Oh, how she loves the outdoors this girl!!

Okay, so my plan was and has been to update almost daily or close to that.  However, I am living in reality and realize that it is just not possible to do so.  So, I hope everyone understands that I will update as often and as detailed as I can.  Garren, my almost 15 year old, says that if I didn't type so much that I could do them quicker.  Hmmm...I need to confer with his writing teacher.  All this to say...I will update as often as I am able so bear with me.

So, the truth of the matter is that caring for a medically fragile baby requires a bit more planning and a bit more time.  Please don't read that the wrong way...we love every minute and pray in earnest that we get to continue it.  However, moving a tiny baby around with two sensitive beeping machines and an oxygen tank is no small task to say the least.  While we have gotten better at it, the fact remains that it does take triple the amount of time to do tasks with the additional apparatuses.  Bath, changing time, feeding and all other baby-related tasks tend to add up throughout the day.  Plus, it's important that we take sweet pea for a walk everyday so that gets factored into our daily activity as well.

 Love. This. Girl.

Oh, lest we forget that we homeschool as well and that now adds to the day.  I love what I get to do with the boys and am so grateful.  So, to give them as much as I can right now, other things are taking a back seat (like checking and responding to emails, etc)...honestly, if there were another term to describe something further than "backseat" that would be the word I would choose here!  It's important for all of us that we try to reach a bit of normalcy again including our day to day school routine.  I must say that it is easier said than done right now which for an intense scheduler like myself is a hard pill to swallow.

The most time is spent with doctor's appointments right now.  Currently we see a cardiologist and her pediatrician for routine newborn care.  Next week we will be adding in our ENT doctor and the GI for her as well in addition to her pediatrician's visit.  The ENT visit is to have our beloved doctor evaluate Everly's throat and jaw.  The GI doctor is going to help us monitor the amount of feedings she gets and the weekly increases.  Cardiac babies tend to burn calories doing just about anything much more than non-cardiac babies.  So, the goal is to chunk her up a lot more.  Just as was the case in utero, she gains slowly.  Then the pediatrician visit this week is to see how she's grown since last week's feed increase since we didn't have our first GI appointment yet.  We'll switch that care to them after next week.  Eventually we hope to add in home or in office physical therapy and possibly speech therapy for feeding issues (maybe trying a bottle) but that seems more of a pipedream at this point.  Right now, we are doing at home physical therapies with Everly like range of motion exercises for her arms, legs, fingers and feet.  She seems to enjoy them as we work with her so that's fun.

Perfect onesie that our friend Heather gave us...Sweet Pea!

All this to say, that my updates and even having visitors over has been so limited due to the time constraints of our day to day living now (and fear of exposure to germs).  We try to devote time solely to each boy nightly so that they aren't left by the wayside.  We stretch every minute we have and find some that we used to waste but do no longer.  It's amazing how a life change can alter so much!

The first week home we spent just "doing" stuff with her...all her baby bucket list things.  No work, no school just fun!  The second week was the week she was sick with pneumonia.  We've just past our third week home and we are trying to diligently get into our new school routine and home life.  Please bear with us as we try to figure it all out.  Next week will begin our fourth week at home and we hope tasks become even that much more second nature.

I just wanted to take a moment to acknowledge all the help with meals our family has received.  Thank you all so much for helping take care of that one task that while not so difficult really is when compounded with everything else.  It means so much to us that you would take the time to prepare meals for us and send us frozen meals for later.  Also, thank you for the meal gift cards that will continue to help bless our family at a time when we need it most.  It is all so appreciated!

Kendan doing Everly's "school" eye tracking exercises.

I also wanted to share with you another family who will be starting (really they have already) their walk with a sweet baby who will be born with Trisomy 18 any day now.  Anissa and Mark Scholes are already the parents of three boys and are expecting a precious baby girl, Elisabeth Maxine, at any moment.  They received the diagnosis of T18 in September.  Please lift this family up in prayer as they prepare for delivery.  Their prayer is that they will get to meet their sweet baby and hold her.  Here is their CaringBridge site if you would like to follow their journey:

Elisabeth Maxine Scholes

Another stroller picture because she's always so at peace and comfortable when we go walking. She is scrumptious!!

Please continue to share Everly's website and also her FB page...Love For Everly...as we work diligently to get her the care she needs.  The medical community does not sometimes see past the diagnosis and instead the individual child.  We never expected to have to work so hard to get her the medical care she needs.  Please pray for our family as we do so.  Pray for her health, pray for our peace and pray for discernment on the part of the medical professionals who will be caring for her.

Last, I have included just a few random favorite pictures with this journal entry.  We snap no less than 50 or more per day so there's always an abundance to choose from.  Enjoy!

With love and appreciation,

Crystal