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

Off and Running

 Everly doing her school with Ms. Mary Ann practicing sitting up.

Well, today marks the 191st day of us being a family of five! Continuously counting our blessings, continuously being mindful of what is important. Our thankfulness is never far from our minds and is said aloud at every family prayer. We have made the most of every single day we have had thus far and plan to continue.

Much like everyone else in the country, we are getting geared up for a new school year. We will "begin" on Tuesday but we really school year-round and take breaks or go on field trips as we need to. However, the new curriculum (remember the excitement over the boxes this summer??) will be christened next week!

 Working on neck strength during tummy time.

Of course, this school year will be unlike any other and will come with its own challenges. The biggest being trying to balance everyone's needs simultaneously and getting everything done on a daily basis. But I've already figured it out, I'm happy to say. I can't. Just can't. I will not be able to take care of them each simultaneously and will not be able to check off each scribbled "to do" off my list by dusk each day. So, the way I see it is that if I already know these things, then anything above and beyond said expectations makes me a winner.

 

Sweet love

In all seriousness, though, I do have a plan. As my boys are well aware of one of my favorite phrases, "If you fail to plan, you plan to fail." I LOVE that saying. A LOT. While my plan may have "escape routes" written in, having a general idea of the path is all that matters right now. Many people have asked me the specifics of how I homeschool a now 3rd grader and a now 10th grader with Everly and all her needs. So, I'll lay it out for you as best I can...allowing for the occasional off day thrown in here or there.

• Outsourcing: Co-op classes for both boys, 2 online academy classes for Garren, the rest with me
• Planning: My favorite motto is "If you fail to plan, you plan to fail."
• My dad: He's the key to it all. He transports, supervises, plays with, you name and he does it!
• Flexibility: So, with our new sister in the mix, we've learned that school can happen anytime and anywhere.

 

Kendan's first time carrying baby sister! He was so excited!

I have learned that I can school from the floor while letting Everly have some tummy time or working on rolling over. I am able to read out spelling words while feeding the baby and massaging her feetsies. I can correct papers with a baby in my lap. The boys can work with little sister doing her own "school" in the office alongside them. It is possible to read literature with the boys while the baby is wrapped in the Moby wrap.

 

Big brother love

I think most importantly I've learned that our school isn't just about what we're learning in books. While it is valuable and we do certainly attend to that, I know that our focus should be so much more. We are actively working on creating a lifetime of memories, making bonds with each other and being present in the moment, no matter how crazy or chaotic it might be.

Book learning will always be, but what we have now may not.

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!

Hurricane Season

June 1 begins hurricane season in Florida. It lasts through November of each year. If you live in Florida, you know these dates possibly better than anniversary dates. I want to share with you a hurricane that is happening.


Yesterday and today I was overcome by God's grace and mercy for Everly and for our family. To honor Him and proclaim His glory, I must share how He has showered us with His love.


Yes, during our storm, during this difficult time, He has shown Himself and His love for His children in abundance.


See, God never says that we won't have times of trials, in fact, He tells us in John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."


However, how we deal with it is the part we should focus on in our lives.


Don't get me wrong. I struggle with this just as much as the next person. I am human.


But God already knows this. He created me. You. Us.


He knows we can't...


CANNOT


...handle the troubles of the world without Him.


He is our rock.


Psalm 18:2 reminds us that "The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold."


We must believe that and run to Him when our world feels like it's coming apart. When the weight of life feels like it's too much to bear. When our troubles overwhelm us. When there is no light at the end of the tunnel.


When our daughter is limp and blue.


Yes, friends, we must go to Him in this time. We must praise Him. And, I pray that for you, in the calm of your life AND in your storms, want nothing more than to praise Him and shout His name. He is good all the time. We will not understand His ways because His ways are not our ways. We've read this popular verse in Proverbs 3:5...but stop and meditate on the words for a minute: "Trust in the LORD with all your heart and lean not on your own understanding."


He doesn't want us to "get" it. He doesn't want us to "know" why. He wants us to trust Him. That's it. Trust Him. Walk in faith that He knows our every need. His promises are real.


I want to share with you how He provided for our needs during our hurricane that still rages. So, let's begin...


Yesterday, Everly had her four month check up with our beloved Dr. Graham and her wonderful nurse Loraine. Towards the end of the exam, we all noticed that Everly's coloring wasn't right and she was very cold. Being that the room was cold and she wasn't yet dressed from her exam, we attributed it to that. We got a reading on the pulse ox and it was grossly scattered....70's to mid-90's in seconds. Once she somewhat pinkened up, we headed home to feed her and snuggle. Even as we left, we thought her color was off but figured it would come back soon.


Immediately upon entering our house, a mere 5 minutes from the doctor's office, she and I sat in the rocking chair to prepare for her feeding. She was wrapped snug in a blanket and I could see her color was still not going back to normal. In fact, her color was beginning to take on a dusky hue, the scariest of all colors on human skin. Her legs and feet were cold, her head was cold and her eyes were semi-closed. I began to call out to Jimmy that we needed to take her back to Dr. Graham's office. By this time, it was 5:25 and I was sure the office was closed but praying someone was still there. We stumbled to the car, pulse ox cords and oxygen tank in tow, carrying, by this time, a limp little baby t the car. I was trying to keep oxygen on her, hold her and talk to her all at once. She was not aware of me or her surroundings. She didn't move nor cry. Her lips had turned white and her face and skin a nasty sick color. She did not look like my sweet baby Everly. I remembered telling Jimmy that we were losing her. I remembered crying out in panic that he had to hurry because she was leaving us.


What seems like an eternity later, but in reality I know that it wasn't, we made it to the stop light minutes from our house. As we waited to turn, I thought about her in those moments and had to remember who was in control. God has his hand on Everly. God will care for her...whether it is to bring her home to Him or whether it is to keep her in her earthly body a while longer. But either way, I must walk in faith. So, my panic turned to calm. My hysteria changed to quiet. I began to pray over her. Tell her each family member's name and how they love her. Tell her how much her Heavenly Father cares for her more than we could ever. I wanted to trust in Him and I did.


Let's push the pause button here. I did say earlier that I am human. So, I want to point out that while I was handling it in the car when we arrived at the pediatrician's office, the reality of the situation hit me again. Yes, I did cry and yes, I temporarily went into panic mode. I'm not going to lie. However, through God's grace and mercy, He placed the right people in place at the right time for two reasons. Now push play.


As we pulled into the parking at Dr. Graham's office, I knew there was a very good possibility there were gone. It was 5:30 after all. Yes, no surprise, the door was locked. However, the receptionist saw us at the door and called for help, I guess, because as she opened the door Dr. Graham, Loraine and LeeAnn all came rushing through the hall to meet us. Dr. Graham calmly took my shoulders and walked us to an exam room, all the while speaking calmly that it would be okay. She took Everly who was still very disoriented and layed her on the exam table and proceeded to check her out.


She told us that it sounded like she had had a seizure. In my naiveté, I thought that a seizure was when a person started shaking uncontrollably and vomiting. This is not at all what Everly did. So, it was a complete shock when she told us that. As I have since found out, there are 40 different kinds of seizures.


After some time, Everly's color returned and they checked all her vitals which were good. I'd like to mention here that Dr. Graham had a patient she was seeing and very kindly told them that she would call them later. If you were that patient and reading this, thank you for understanding. When she seemed stable, Dr. Graham asked if we felt comfortable heading home with Everly. We did as it seemed she was out of the seizure.


I hugged each of our angels and expressed our thanks...really words were inadequate. Then Dr. Graham said the following: "I'm not on call tonight but I will tell the service that if you call, they are to call me at home."


Yes, that is what she said.


No joke. I know what a big deal that is. She was NOT on call. NOT her responsibility. I love that woman!


The overwhelming feeling I had knowing that God orchestrated this brought me to tears. Not of fright but of pure joy and love for Him.


As we drove home, Everly started sticking her tongue in and out very rhythmically. She was turning her head side to side, not focusing on me, looking this way and that. The tongue thrusting continued. Feeling uneasy and uncomfortable, I videotaped 15 sec of this and sent it to Mary Ann, Everly's therapist, who lives on the street behind us, to ask her what she thought.


Yes, the street behind us. Mary Ann simply texted back, "Want me to come over?' Again, tears of joy that God has interceded and placed the right person in the right place for Everly and for us. Within minutes, this angel arrived at our door. She knows Everly and knows her behavior and she agreed that it was not normal for her. She told me that it was another seizure. Yet a different one from her earlier one. Again, I was surprised to hear this. Mary Ann stayed a long time talking to me, watching over Everly and just being a calming presence and such a blessing.


I called the answering service and they told me that Dr. Graham had instructed them to call her. She promptly called back and determined that yes, Everly was seizing again. We went over the options at that point and decided to ride it out at home with the plan that she would call a neurologist in the morning.

 Getting some snuggles while I went to the restroom. She knew it, too!

My mom came over about then after having worked all day and drove an hour over to stay with us for the night. My dad was already here and stayed, too. They were such a help with the boys as Jimmy and I stayed with Everly who was still having the seizure. They acted as second parents to the boys while we brought Everly into the bedroom for peace and quiet to try to calm her for the night.

 

Now it's Papa's turn for snuggles.

 
As for the rest of our night, it was rather up and down. Everly had periods of drifting sleep and had periods of tongue thrusting. She was awake for some periods just looking around but more of a blank glaze really. She had several very dry, very pasty bm diapers that didn't look right. Her mouth seemed extremely dry and her behavior was uncomfortably odd. This continued throughout the night until about 5 a.m. when she finally hit a restful sleep period.


As I was feeding her during her 8 a.m. feed, Dr. Graham's office called and told us that they were able to get us into a neurologist for the next day (Thursday). I know from my experience in making doctor appointments, quick ones with a specialist are far and few between.


Then another shocker for me...Dr. Graham called to see how Everly did during the night and how things were right then. Since we didn't have an appointment with neuro until the next day, I didn't think we'd see a doctor to go over anything until then. So, what a blessing to have our trusted angel call us! We went over plans for the day of how to best care for Everly at home as she knows that is very important for us. She instructed us to rehydrate her with Pedialyte at specific intervals, allow her to rest as needed since the ongoing seizure probably wore her out.


We were able to get an emergency prescription from hospice for a medicine that can be used to stop a seizure in its tracks to keep on hand. Having it available and knowing we wouldn't have to go to an ER is a huge blessing and relief. I know I have help for her when and if it is needed.


At lunch and at dinner, Dr. Graham called back to see how she was doing. For real. I love her. I honestly love her. She was sent to us by a God that loves and cares for us. She is what we needed. He knew this. He is so good. No, she can't fix the problem per say but she gave us everything we needed.


Remember back in January when our old pediatrician dropped us because of the complexity of what we thought then was Everly's heart condition? Well, God knows what He is doing. So, that "closed door" then turned out to be closed so He could open another one that was better for us and He knew it. I wouldn't have switched unless I had to. He made it so.


When God couldn't show up anymore than He already has, this happened.


Late Wednesday afternoon, I received a phone call from a friend I hadn't spoken to or run into in a long time. I love catching up with old friends and so it was nice to see her name pop up. When I answered, I could tell she didn't know about Everly's current medical issue. She said she doesn't do Facebook which is why as I had posted updates throughout the two days. She immediately started to fill me in on seizures and what else I could do for Everly.


Then, she simply asked if I would like for her to stop by after work and check her out.


Did I mention she's a doctor?


Yup. A doctor. A walking, breathing, practicing doctor of medicine. An M.D.


So, a little after 6:30 p.m. Dr. Pilar Cekan, my angel friend and sister-in-Christ, showed up at my house, stethoscope in hand. It was like straight out of modern day Little House on the Prairie with an old fashioned house call. First, it was just wonderful to see her again. Her spirit and love of Christ precedes her so it's always a pleasure to run into her. But this visit was even more special. She came because she loves. She cares. She came because she's a daughter of a God who prompted her to call and she listened to that prompting.


She, just like our Dr. Graham, looked at Everly lovingly and cradled her in her arms. She held her as if she were hers and I knew that we were so loved by both of these terrific doctors. Pilar gave our sweet baby an exam and said she sounded good and talked some medical stuff. Thank you, God! Then she we spoke about the fact that she even called today and we both shared some tears of joy of God's goodness.


And He is, isn't He?


Guys, we are ALL going to go through these storms.


To put it in terms my Floridian friends will relate to, some are more Category 1 while others will be more Category 5. Either way, they can do damage if we let it. If we don't put our boards over the windows. If we don't pile up sandbags. If we don't prepare in advance. Damage will devastate us.


We have what we need in Him. He will protect us from every storm. He will cover and shield us. We must just trust in His plan. Even when it's a Category 5 storm.


We must walk by faith that His goodness is all we need.


We must walk by faith that His promises are real.


We must walk by faith that He will rescue us from the hurricane if we trust in Him.


I trust in Him. Do you?




With love and appreciation,


Crystal"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don't give up and quit. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever!" Matthew 11:28-30




http://www.gofundme.com/LoveForEverly (FYI: Tributes made on Caring Bridge do not go to Everly.)


http://facebook.com/everlyhopkins (Check here for more frequent pictures and updates on Everly.)


We thank you each for your intercessory prayer on our behalf. God hears you and God honors you. We know that your prayers are working and we love you!

Pilar checking little sweet pea's lungs

Dear Dr. Cekan and our sweet Everly...You are a blessing!

Checking baby's vitals

The Cold Hard Truth

A work in progress

They started appearing first just one, then a couple, then a few more.  They show up now multiple times a week.  Medical bills and lots of them.

We hadn't really put much thought into Medicaid and the rules regarding it prior to Everly's diagnosis honestly. We've never needed it nor applied for it so it wasn't something we had ever researched.  As far as we knew, persons with low income or disabled were eligible.  Boy, were we wrong!

Rewind to February 25, 2014 again, the day we were told of her diagnosis of Trisomy 18.  It was a Tuesday afternoon.  My mom was rocking Everly and I was pumping when Dr. Mendoza walked into our NICU room.  She had her glasses in her hands and she had a sorrowful look in her eyes.  I knew right away what she had to say.  We had been waiting for the results of the FISH test which would either confirm or deny what the doctors suspected.  She didn't beat around the bush and came right out with it.

"The test results are in and your daughter has Full Trisomy 18.  I'm so sorry."

The blow hit hard.

She began to speak and I can honestly tell you that I have NO idea what she said.

None.

Early morning staring session with mommy

At some point, it hit me and then I began to sob.  My mom sat solemnly holding the sweet baby that Dr. Mendoza spoke of, who had this awful genetic condition that would take her away from the family who already adored and loved her.

Not too long after, Jimmy appeared in the glass doors, bags of supplies from the store in hand.  He knew when he looked at me through the glass what I was going to tell him.

The next few hours were a blur.  I vaguely remember falling asleep with her in my arms, tubes and connections tethered to her tiny body.  When I woke, I still remember the smothering sense of panic I felt when I realize it was NOT in fact a dream.  My daughter had Trisomy 18 and everything that goes along with the diagnosis.  I couldn't breathe.  I couldn't speak.  My heart ached in such a way that is indescribable.  Whispering because I couldn't get a full breath, I called Pastor Jerry from our church.  I didn't know what I needed except to hear about God's hand with what we were living.  I was so relieved he answered even though it was late that night.  Probably the most important phone call I had ever made.  The overwhelming feeling of being distraught.  Truly distraught.  It is something only God can truly help  with honestly but I will forever be grateful to the pastor for taking my call at that moment in time.  I have never felt such horror and shock.  It is like nothing I can even describe really.

I love my bath!

He offered to come to the hospital then but I was so physically and mentally drained, I knew that I would most need pastoring in the morning.  He and his wife, Jeanna, arrived at the hospital Wednesday morning and spent hours with us, listening to me cry out why and not understanding how this could happen to us.  We read scriptures and talked about God's plan and that we won't always know the answers here on earth.  They prayed over us and over Everly.  They left me with scriptures to study, to help with the grief I now felt.

For days starting that Wednesday we had a constant stream of official visitors...geneticists, social workers, counselors, child life specialists, and an assortment of doctors, you name it and they appeared.  It was completely a blur.  I don't recall much from the rest of that week and weekend.  We told the boys Wednesday night.  Using advice gleaned from the child life specialist, we broke the news as "gently" as we could.  Garren knew what the diagnosis was immediately before we even told him.  Kendan began to cry.  It was a night of pain and of broken hearts, shattered dreams.

Daddy about to insert her NG tube (see it to the right) while she's sleeping.

I spent the night composing the email that would inform our friends and family of the news.  I posted the announcement that Thursday morning.  My birthday.  February 27.  One I'd rather have skipped.  We were still in such shock by the news and the gravity of the situation that we really had not had time to digest it for ourselves but wanted to share because we had been rather distant that week from everyone.  It's odd but by telling people it made it so much more real that the distraught feeling came on stronger than ever again.  It was as if it was a literal black hole that we could not escape.





Distraught.

Foggy.

Exhausted.

Drained.

Angry.

Removed.

Words to describe our state of mind that week and the weekend.  Life would never be the same for us, for her, for the boys, for our family.  From what we were told, her death would be imminent.  How could that be?  She looked so perfect, so peaceful?  After 10 months of highs and lows, of emotional doctors visits, of thinking things are okay, I felt like I couldn't bear anymore.  I wanted to be by myself, not have to face the world, people.  I wanted no one to touch my daughter.  She was mine and I needed her as much as she needed me.  Her time was limited and I needed every second with her, touching her, smelling her.  I had a difficult (absolute understatement) time sharing her with even Jimmy and my parents and to be honest, I still do.  She was mine and I needed to be with her.  I carried her for 38 weeks, knew everything about her, I didn't want to play nice.  Most certainly didn't want to share her.  What if today was her last day?  Indeed, it was a very difficult period of time.

So, how does Medicaid/Social Security have anything to do with what I just wrote about?  Simply this:  our daughter was denied coverage for Social Security which would have given her Medicaid because we did not apply for it by the end of her birth month. That's right.  We were supposed to have had the wherewithal at that time of grief to apply for something we didn't know we'd need all before the end of February.  Do the math with me.  Birth on February 20, diagnosis on February 25 and there's only 28 days in the month.  The shortest month of the year.  So, let me get this straight?  We should have been already thinking about needing Medicaid to help cover medical bills for a baby we were told would not survive?  Never mind the fact that we didn't even know that by qualifying for Social Security, she would have automatically qualified for Medicaid.  Never mind the fact that with ALL the hospital staff that visited with us, we were never informed of this oh so small but important detail.

Is this a joke?

So, we're dealing with a life-altering, devastating diagnosis with our newborn daughter and now we have to contend with SSI and Medicaid bureaucracy, too?

Nope.  Not a joke.  This is our reality.

That is where we stand today.  Denied for Medicaid based on income and denied for Social Security because we loved our daughter more than we loved the need for money.  Oh, that's right, we didn't even know we were supposed to apply for SSI at that time.  Oh, and in case you were wondering, just because one might be 100% disabled, it does not mean they qualify for Medicaid like I naively thought.  Regardless, we are all just appalled that there is no special consideration given the circumstances surrounding our daughter's birth.  We know that for a fact because Jimmy and my mom went in to appeal our denial and explain the situation.  Still the answer was an emphatic no.

And, unfortunately, we don't qualify for a write-off from the hospital for her NICU bills either. Zip. Nada.

We do have private insurance which covers a portion of each bill.  However, as is with most insurances, we are still responsible for our part.   And still responsible for the co-pays at each specialist visit.  Unfortunately, this is the cold hard truth of the situation.  There are bills, lots of them that continue to pack our mailbox, waiting for our attention.

C-Section

Hospice

Medicines

Machines

Specialists

Supplies

Testing

Therapy

The whole kit and caboodle!

We are continuing to focus on the here and now with Everly while in the background worrying about the financial stuff.  It's challenging.  It is a strain and with my unexpected loss of income as well, it is difficult.  I pray that God will sustain us and will provide for us as we care for His baby girl for as long as we are blessed to have her.

A very special shout out to my mom, Kathy, for her countless hours of research in an attempt to help us with this situation.  She worked all day and then would come home and research various waivers, laws, policies, etc.  She would work all day, come visit Everly across town and then go home and still research on our behalf.  She even took off from work to accompany Jimmy to the SSI office as well.  Thank you, mom, for all of your hard work and effort!

Patricia and Michael came to visit...brought lunch and dinner! Nice to meet you both!

We continue to look forward to comments, emails, mail and packages we get.  They are such day brighteners for us all!  We thank you for taking time to respond and reach out to us.  Some days are better than others.  Some days when we learn of our other Trisomy baby friends not doing well or their premature death, it strikes a very sensitive chord in us.  We feel sadness for those families and pray for their peace.  So, having those bits of sunshine is a blessing! 

Everly's address:

Everly Hopkins
3905 Tampa Rd.  #2696
Oldsmar, FL  34677

Thank you all for your continued support for our family and especially our precious sweet pea, Everly!  We love and appreciate each of you.  Please keep praying for her good health and continued growth! 

With love and appreciation,

Crystal

Reality Bites

Sweet sleepy baby

 
February 25, 2014. It was the day we were told of Everly's diagnosis. A day we will never forget. A day we were told that sooner rather than later we would lose the daughter we had grown to love the past nine months. The doctors tried to gently prepare us for this imminent death they were expecting. We wanted to take her home so she could be surrounded by the sounds of our household...noisy boys, barking dog, mom and dad's voices...rather than the incessant beeps in the NICU room. We signed on with hospice, in shock that there even was such a thing for babies. We briefly spoke of wishes for "after" and answered questions about our plans. We were being prepped for the probability of death.
 
But what we were never prepared for when we left the hospital was the possibility of living. No discussions were focused on the how to live with a medically fragile baby. No advice on how to handle the nuances of multiple machines and tanks. No tips on what to expect for development as she aged. No guidance was given for how to navigate this unchartered territory. What could we do and what couldn't we do. The hope of Everly being able to defy the odds was certainly our prayer but most certainly not in the minds of most of the medical community.
 
So, here we are 102 days later and our baby girl is thriving and so is our family. Every member of the family, including our furbaby, make tracks to see sweet pea the minute I wake her up. They seek her out even before the bathroom. Really. She is so incredibly loved by not only our family but our friends, extended family and by so many who haven't even met her but have just heard her story. We are so encouraged by the messages of hope and faith we receive. She may be little but she's making such a difference all around her! How proud we are of this tiny miracle!

Playtime for all three kiddos!

We are asked quite a bit "How is Everly doing?" and I post frequently on Facebook pictures of her happy and enjoying herself. I, thankfully, am able to answer that she's doing "well." And thankful we are. But we do not have our heads in the sand and we know that in a split second it could change. Even the "well" is relative to her condition and her specific physical ailments. I make this point so that we can avoid any confusion that her "well" doesn't change her diagnosis. Her therapy will not completely change her clenched hands or that she will be able to ditch the obnoxious NG tube and fully feed via a bottle. Hopefully, it will help, will lesson the tightness in her joint contractures in her hands but won't remove that characteristic of a Trisomy 18 baby. The feed therapy will help hopefully with non-nutritive sucking if successful and possibly any oral aversions when baby food can be introduced assuming she can swallow it. Her "well" means that her pulmonary hypertension is still being offset by the massive VSD (Ventricular Septal Defect=hole) in her heart; either of which without the other would have devastating effects on her body. As she ages, that balance is expected to change. Her "well" means that her numerous daily choking spells haven't increased and are being managed by her own alertness, strong gag reflex and oxygen "blow-bys" we give her. Her "well" means that her desats at night aren't resulting in her turning dusky or needing to be bagged again. Her "well" can be read in so many ways but for her and for us, it means that we are still able to enjoy the privilege of being her parents.

Little Everly getting a foot massage and listening to Papa tell her how pretty she is.

It really is a confusing dynamic...the probability of dying and the possibility of living. We want to put the first thought out of our minds when things are smooth and seemingly okay with her. However, the reality is that we must be prepared (can you be??) because her body is just not working the way a body needs to and at some point it will be too much. Maybe not this month, maybe not this year and maybe not in five years, but eventually. While that is true for all of us, we know that she will be called home sooner than should be expected for a child. But, again, in the meantime we are trying to live day to day with what we have at the moment. We are now thinking further out than we did before. We are now trying to make some plans the near future. We are doing what we can to have a normal (is this even possible?) life with our three children.


SOFT (Support Organization For Trisomy 18) just updated their book entitled "Care of the Infant and Child with Trisomy 18 and Trisomy 13" for 2014. It contains valuable information for parents of children with these conditions and is a great go-to source for us. As I read it a few days ago, I was struck by a few statistics. As one can surmise, I've done my fair share of reading on this subject over the past three months as most Trisomy parents do. However, a new piece of information was given that was new to me. Before I give that info, let me recap some numbers and facts regarding Trisomy 18 babies taken from the SOFT website. Feel free to visit trisomy.org for more information or the Trisomy Foundation. Trisomy 18 is a chromosomal disorder that occurs in 1 out of every 7,000 live births. Previously that number was 1 out of every 6,000 but more families are choosing to terminate upon hearing the diagnosis. With this diagnosis, babies are more likely to have a number of other birth defects and a shorter life span as well as profound physical and mental delays.Testing can be done in high risk pregnancies by using the Maternity 21 or Harmony screen which looks for the three Trisomy conditions (13, 18 & 21). I did take this test at 10 weeks and it was found to be negative. Ongoing treatment, support and care for babies with T18 is lifelong. 50% of babies with T18 will not survive to birth. Out of those that do, most pass between hours and a week after birth.Only 5-8% of babies with T18 will live to see their first birthday.90% of babies with T18 are born with Full Trisomy which means the extra chromosome is present on all the cells in their body. Those with partial or mosaic only have the extra chromosomes on some cells; therefore the prognosis varies (better typically) for them and their lifespan. Everly has Full Trisomy 18.The one number that was most shocking to me and was also new information is that there are only around 200 babies who are currently living past their first birthday in the United States currently. Wow! That just took my breath away. I know that Trisomy 18 is rare but certainly expected the number to be so much higher than that. I will continue to be thankful for each day we are blessed with and be joyful for that time.

Nana rocked baby girl to sleep.

As we are approaching 3 1/2 months with Everly, we are trying to see ahead as we walk the path of her living and not dying. There are no guarantees. There are no promises of tomorrow. For any of us. We only know that she is with us today and while we don't know what the future holds, we do know that living like she's dying isn't helpful to anyone, especially her. We will continue to plan for the future. Continue to look forward and upward for only God knows the plans He has for her. We are only her earthly parents and will do everything we can to give her the very best life possible, regardless of how abbreviated her stay.


"Trust in him at all times, you people; pour out your hearts to him, for God is our refuge." Psalm 62:8

Biggest brother getting some snuggles from sister while doing his reading.

Don't forget to check out her Facebook page for frequent quick updates and pictures at Love For Everly!
 
With love and appreciation,
 
Crystal

Little Sweet Pea

Listening very intently to her Nana singing to her.

Since we are still following the advice of our doctors in keeping Everly away from indoor spaces and large crowds, many of you haven't had a chance to get to know her personality as of yet. Still others are a distance away and aren't able to meet her. So I thought I would take this journal entry to give you an insiders view of her personality, complete with a video clip.
 
She is the cutest thing I've ever laid eyes on. I can hardly wait to wake her in the morning. The way she stretches and scrunches her whole body when I lift her from her bassinet. The way she opens her little eyes and focuses on me just melts my heart. I love to nuzzle her cheeks and her chubby neck. Her big eyes look at me when I bend down to kiss her and it just makes me smile. Some mornings she will just rest in your arms and stare at you as if she's memorizing your face. She is in deep concentration and you don't want to break the stare. It's so special! I can't get enough of her!

Such a sweetie pie!

She has become so expressive in the last few weeks. She is starting to make little sounds. We've also begun to notice that her face changes depending on the activity or even how interested she is in something. She has the faintest smile on sometimes when we are singing play songs with her. That is the newest thing and it has been so fantastic to see her change. I love to count to three before we start a song to give her "heads up" and maybe teach her a cue of what is coming. Just today we got lucky (well phooey on that...God blessed us) with capturing it on video!! I'm going to try to get it uploaded at the end of this entry. I gasped out loud when I saw the little corner of her mouth move upwards. It was a magical moment!


She has taken a great interest in her toys and surroundings the last couple of weeks as well. We are working on tracking with toys and helping her to turn her head and follow them left and right. She waves her arms and moves her legs while having playtime on the floor. This is great for her physical development so it's thrilling to see. She has favorite toys that clearly prefers because she focuses on them for great periods of time, like her cow, a pink dog and a baby doll (thanks Melissa, Sandy, and Susie!). She is so much fun! She is a curious being and loves to be carried around to check out her surroundings, too. One of her absolute favorite things currently are lights. Flashlights, fan lights, ceiling lights and now we have her two projector lights. One I bought with ocean waves and one we were gifted (thanks Cindy!) with stars. She can fall asleep just staring at them.
 

Love the little tongue sticking out!

She is a very happy and easy baby. She rarely cries and the times she does we can predict because we know what she doesn't like. For example, you can put money on the fact that she will cry when you take her out of the tub. She is wrapped snug in a thick towel the second she leaves the water but she will cry anyway. She goes with the flow typically and seems to be content with most things.
 
We have become very comfortable with her after twelve weeks. A couple of weeks ago, we decided to remove her from constant monitoring with the pulse ox machine. The beeps were stressful and we know her well enough to see when she needs oxygen or stimulation. She does still have the monitoring in the car, during naps when she's not closely attended and throughout the night, though. We have enjoyed the flexibility we all have without the machine so much more. She can be moved throughout the house with ease, can be lifted without setting off the sensors and does not have the cords attached 24/7 now. We are all breathing a sigh of relief!

Everly swimming in her tub at the pool. Look at her cute swimsuit!

As the mommy of a special needs baby, I am seeing how little milestones like smiling or recognizing faces are huge! Everly because of her Trisomy is cognitively and physically severely delayed so to see this progress is so exciting! The little things I know we as parents with healthy children take for granted...first smiles, recognizing family, holding her head up, giggles. But it makes those moments all the more special when they happen because for us since they aren't guaranteed to happen. So, it's like a Christmas present when they occur! 

We continue to be amazed every day as she thrives and defies the odds so very clearly set for babies with Trisomy 18. We are just in awe of this little girl!
 
Please continue to share her Facebook page Love For Everly and her website to spread awareness about Trisomy 18. Let's help the medical community see that their research is not everything!
 
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17
 
With love and appreciation,
 
Crystal

Perspective From Nana and Papa

Nana & Papa talking to sweet pea and Ala looking on for good measure

As we anxiously awaited the birth of Everly, we were very thankful to GOD that he had allowed Crystal to carry Everly to 38 weeks.  We knew and were prepared that Everly would be staying in the Nicu because of her size and her congenital heart defect.  We were not prepared for the diagnosis of Trisomy 18.  Although it was devastating news, I felt a calming peace knowing that this was and is GOD's plan for Everly.  I knew/know he loves her and will do his very best for her. Everly is in a "Win Win" situation.  Should GOD carry on his plan for Everly, she will sit on JESUS's knee as one of GOD's angels and should GOD answer all of our many prayers, she will be with her family and friends who dearly love her.

 Nana & her granddaughter having some snuggle time

We have been so blessed with family, friends, acquaintances, and people we don't know who have supported us on this journey.  I am so proud of Crystal,Jimmy, Garren, and Kendan who have unselfishly given all they have to ensure Everly has a wonderful life here on Earth for however long it is in GOD'splan.  Garren volunteered to learn how to operate Everly's feeding machine so he could share in feeding her.  This is a young man, typical teenager, and before Everly was born, who complained when he had to pick up his clothes in his room.  It is amazing the transformation that one little tiny girl, 4 lbs2 oz, can make on a teenager.  It is hard to wrestle her out of Garren's arms so the rest of the family gets a turn.  Before Everly was born, Kendan would cover his face when a commercial would advertise Barbies or girl's toys.  He would say he didn't want to see girls' toys.  And NOW, he holds Everly and reads"Princess" stories to her. Love conquers all!

I see GOD at work in so many ways since Everly was born.  Your comments, meals, donations,and "Love for Everly" has been very comforting.  I experienced another example of GOD's plan yesterday morning.  Everly has been using, since birth, petite oral swabs to moisten her mouth.  We call them lolly pops because they are moistened with Mama's milk and she sucks on them.  The NICU nurses at St Joseph's provided a small amount for us to take home for Everly, however, she is getting down to the last few and I have been trying to get her some.  The Hospice nurse said they don't carry this particular size for infants.  I called the company this morning and spoke to a gentleman who said they don' t sale the swabs to the public.  He asked me why I needed them and I explained about Everly. He then offered to send a BOX of samples free of charge.  I thanked him and he said not to thank himbut the power of above.  I told him that I was sure GOD directed him to me.
Everly smiling at her Nana


Thank you for your love and support,

Kathy & Garry Mullins

 Rockin' her feather headband!