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

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 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