Everly's Celebration of Life

Saturday, January 31, 2015

What a better day to celebrate our Sweet Pea's life than on her 1st birthday!   Everly's Celebration of Life will be held on Feb. 20, 2015 at 4 p.m. with visitation prior beginning at 2 and visitation also after the service.  It will be held at Grace Family Church, Van Dyke Campus in Lutz, FL. 

We would love to know how Everly impacted your life, it would mean a lot to us! The address to mail cards and letters is 3905 Tampa Road #2696 Oldsmar, FL 34677.

Monetary gift can be mailed or taken to any Wells Fargo bank and deposited in the name of the Everly M. Hopkins Donation Account.

If you plan to physically attend her celebration, can you take a second to comment?  Thank you! If you will be attending in spirit, please just leave a comment so we will know. **We are trying to see about live streaming the service and will post if that is able to take place.**

Your love and support during this time is so much appreciated.

The Hopkins/Mullins Family


Thursday, January 29, 2015

Psalm 116:15
Precious in the sight of the LORD is the death of his faithful servants.
I still have no words.  The pain takes your breath away.  Literally.   There will be a time I can read your messages, talk with you, leave the safety net of my house, etc.  Not now.  Not yet.  I have to relearn how to breathe.  Just to breathe.  I thank you for your deep love for my daughter.  I mean that from every fiber of my being.  I would love to read how her life impacted yours.  I want to remember that.  I need to know that.  Please inbox me your story with a photo.

Updates: Tuesday 1/27/2015 and Wednesday 1/28/2015

Wednesday, January 28, 2015

**These updates were posted on Everly's Facebook page by Crystal's friend, Courtney.**  PLEASE NOTE THAT TRIBUTES DO NOT GO TO EVERLY OR HER FAMILY>  ONLY DIRECT DONATIONS TO THE WELLS FARGO ACCT DO>  Thank you!

Dear Team Everly,

This is an update I never wanted to write, but as Crystal's self appointed bulldog, it's one I must.

As I'm sure you can imagine, the pain that Crystal, Jimmy, Nana, Papa, Garren and Kendan are feeling is insurmountable. Though they were always aware that Trisomy 18 would take Everly from them early, no amount of preparation or knowledge can brace a human for the raw pain of losing a child. It's just not the natural course of life to lose a child, so this is a pain that strikes each nerve in the body.

Jimmy, Crystal and Nana are now back home with the boys and Papa. Everly's earthly body is with them as well. It was important to the family to bring Everly back home with them, and they did just that. She was held lovingly in their arms during the trip from Atlanta to Tampa.

At this time, no arrangements for a memorial are being made, but one will be arranged in due time. I promise to update when I have more information.

While I know it is human nature to want to offer support, at this time, and until further notice, please refrain from visiting or calling the home or cellphones. They need to be a family, and start the first steps in what will prove to be a lifelong process of grief. There is a cooler at the front door, if you signed up to bring a meal; thank you. Please put it in the cooler without knocking or ringing the bell.

The family appreciates all your words of comfort, support and gratitude. At this time, they do not have the strength to read any messages, in fact, they have not read any messages, texts or emails. I know these words will one day bring comfort, but for now, it's just too overwhelming.

I know many of you are heartbroken, as we who know the Hopkins' are- and have nothing but positive intentions- but again, I must beg of you to respect their privacy at this time.

A trust is set up at Wells Fargo bank in memory of Everly, where 100% of all donations and gifts will go directly to the family. If you'd like to make a gift in memory of Sweet Pea, you can visit any Wells Fargo location, or set up an online transfer. The account is Everly M. Hopkins Donation Account, and the account number is 7616853227.

On behalf of the Hopkins', thank you for the continued outpouring of love you have showed them. Please continue to pray for their peace and healing. Your words will one day be read and cherished.

Much love to all, Courtney



Hi again everyone,

Thank you, as always for the continued love and support. The Hopkins' are still taking things minute by minute and just being. They are meeting with the church and the funeral home together today, so please say an extra prayer for their peace as they take the next step.

We've had a lot of requests for the meal signup, and appreciate the offers. If you need the link, and are ...a local friend of the family, please let me know
(Courtney:  thenettas@gmail.com) and I will be happy to private message you.  If you are not a local friend of the family, but would still like to help, there are options, and your gifts are greatly appreciated. You can mail gifts, gift cards or cards to:
Everly Hopkins, 3905 Tampa Road # 2696, Oldsmar, Florida 34667

You can also make a monetary donation at any Wells Fargo location. Using Everly M. Hopkins Donation Account #: 7616853227.  The funds will lighten the load as the family takes care of final arrangements, remaining medical bills and day to day expenses as they heal. 

Details on a Celebration of Life will follow soon.

Love and light to all - Courtney

Everly Marie Hopkins

Monday, January 26, 2015

Everly went to be with Jesus in the arms of mommy with Nana and Daddy next to her.


Sunday, January 25, 2015

Thank you so much for the wonderful prayers last night. I read each and every one from that and previous posts to her bedside. (This was on Facebook but if you would share with me, I will read yours to her from CB as well.)

Unfortunately, she had a rough day and night. Waiting for rounds to discuss today's plan. She was given paralytic and sedation meds yesterday because she was very agitated. Then her SAT's would drop. It is painful to see her jn this state.

If you would like to continue to post your prayers, I will continue to read them to her.

With love and appreciation,

Crystal and family

Prayers Needed

Our sweet girl needs your prayers again!

She coded yesterday morning.

We had just arrived at the time families are allowed in but they wouldn't let us in. They bagged her for a long while, have her on all sorts of meds, and finally now intubated. Since being intubated, she had to be manually bagged 8+ times already yesterday with 02 SAT's down in the single digits.

I don't know what the future holds for her and for us, but I know that even through this He is present. God is NOT dead. He loves her infinitely more than we can ever grasp so we trust Him with her.

Specifically praying for being extubated, as healthy as she was when she came here and we want to get her back home with our family complete again. We love and recite your prayers you post so if you'd like to do that or post something else that speaks of "Everly" to you especially, that would be comforting.

Thank you for your continued love for our family! This has been an incredibly difficult time for us and continues to be.

I will try to post updates but please know they might be short and basic for now.

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

They Just Took Her

Friday, January 23, 2015

Well, the cath dr, Dr. Kim, put Everly as high priority for today and was able to manage a bed for her. He actually came into our room and told us that he was working on that.

They just came and took her away. We kissed her and prayed over her and the team before they wheeled her back.

I will update as I know more myself.

Thank you all for your continued and fervent prayers for Everly. No doubt she is loved by many.

With love and appreciation,

Crystal and our entire family

Holding Pattern

 Isaiah 41:10

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

We are in a holding pattern right now because there are no ICU beds available which is necessary for after the cath. The plan was to take her back at 10:00 a.m. So we are still praying that can happen.

Please be in prayer that the cath doctor, Dr. Kim, Dr. Nicholson and the Anesthesiologist, Dr. Kaiser are guided by God's loving hands today. Pray for a safe AND successful surgery. Pray for our peace as we wait.

I will post again as soon as they take her back so we can all be in agreement for the surgery as we pray.

We are at peace today with our decision to move forward. A peace offered by God.

Matthew 18:20 "For where two or three have gathered together in My name, I am there in their midst."

God's Timing: BIG NEWS

Thursday, January 22, 2015

"Lean on, trust, and be confident in Me with all your heart and mind."

This was the message in my devotion this morning. I stand amazed at how just when you need something the most, God is one step ahead of you putting everything into place. Just like this message I needed to see today, he perfectly orchestrated the events that have led up to this post.

We have known all of Everly's life that her pulmonary hypertension was balanced...

...until last week.

Whether the change occurred due to her ongoing fight with rhino then with the bacterial infection, her new medicines or even her age, the fact is that her balance has changed.

And with that change comes ramifications for Evelry's body and quality of life. We have already begun to see the changes: excessive sleepiness, irritability, excessive sweating, lack of energy, color changes, lack of interest in playing and interacting, basic personality changes.

Even when we returned home, she continued to exhibit these new behaviors, or rather lack of in some instances. It is unsettling for us to watch her now. Her bursts of personality are so fleeting now that we knew that action needed to be taken.


Because her biggest issue is the Pulmonary Hypertension, we decided to contact the team at the Pulmonary Hypertension Clinic at the Children's Hospital at Eggleston in Atlanta. They were able to get us into their weekly clinic at the crack of dawn Wednesday. So, myself, my husband and my mom packed up Everly and ALL of her machines, meds, and assorted other accessories which may or may not have included a few headbands and left for GA at 5:00 p.m. Tuesday evening. We arrived at 2 a.m. to the hotel got her set up and settled in by 4 a.m. and up by 6 a.m. to go to the appointment.

We were in clinic all day Wednesday, complete with echo, EKG, blood work, x-ray, and a collaborative meeting with the PH team. We expected, honestly, for them to say the plan of action in Tampa is exactly what they would do; however, that wasn't quite how it played out. The cardiologist recommended at the end of our first meeting that she be admitted into the hospital right then for a heart cath today or tomorrow. To say we were shocked would be an understatement. We said we needed to stop and think about this given all the risks involved but also all this could mean for her. This is a big procedure for her and she would need to be intubated. Of course, the fear is being extubated or even worse during the procedure.

We took a break for lunch and to discuss everything before we committed. We had some pastoral support from our Pastor's wife at that time and just had a family huddle including input from my dad back in Tampa. It was decided and agreed upon by each of us that this was a God-given opportunity, one that we had prayed for and one that we knew was appointed by God. With the information gleaned from the heart cath, the surgeon can determine if closing her VSD would be possible. They are very concerned that the window of opportunity has been missed (typically 4-6 month range) but are optimistic to move forward to see. We have been very encouraged by the aggressiveness of the team and the care they have taken to put everything into place for us. They have spoken to us about an aggressive treatment plan, while scary, that should ensure Everly would be the best surgical candidate she could be in preparation for open heart surgery.

We met with them again in the afternoon and we agreed that we would admit this morning rather than last night because we really wanted to spend a quiet night with Everly. So, today we have been waiting for the "the call" that they have a bed ready for her. This place is packed to capacity! No open beds, rooms or the like here at all.

Part of me is scared because we are not with our "home team" but I know that if we don't follow through with this plan today, right now, we might not get this chance again for her.

I know that we are doing the right thing by her and that this all fell into place literally within 36 hours with no effort on my behalf other than getting her here. In that and in all the arrangements just "falling" into place, we know that today, at this time, it is God's timing. We will be obedient to Him and cast our fears which are MANY onto Him as well. Without our faith and our complete and utter trust in Him, we have nothing outside of empty hope.

At the VERY moment we received the phone call saying there was a bed available and to head over, the PH team nurse called and said that they were able to accommodate getting Everly onto the already full cath schedule for tomorrow. God's timing at its best!

So, friends and family, we ask that you go to bended knee for Everly and for us as we go through this together. Pray for positive results and for successful extubation quickly. Pray that the staff, doctors and her team will be wise in their decisions. Pray that she remains healthy while in the hospital. Pray that she is comfortable and is surrounded by love at al times. Pray for her please.

I have so much more to write and may later but for now we have to take Everly over and admit her. Such a hard thing to do.

With love and appreciation,

Crystal and Family

P.S. We, as everyone knows, were thrown another curveball last Friday with the Lasix overdose and subsequent overnight hospitalization. I don't plan to do an entire update on just this right now because of my lack of time, so I'll do the best I can now. The update since then: I went to the pharmacy Monday not knowing they were already aware because of the cardio's call to them Friday. They had filed an internal incident report and told me that a district pharmacy manager would contact me. On Monday afternoon, the actual pharmacist responsible phoned me and apologized and asked how Everly was doing. Today (Thursday) the district pharmacy manager did call me and told me that someone would follow up with me. So, that's where we are with that.

Is this for real?

Monday, January 19, 2015

That is exactly what I asked myself on Friday afternoon.

You see Everly was overdosed 10x the amount of a new medicine. The pharmacy wrote the label with "6 ml" instead of the prescribed "0.6 ml" for Everly. Big difference!

The cardio's office told us to get her to the ER via ambulance right away. All sorts of hysteria and panic set in with me as I thought this mistake could take her.

After she had come so far.

Once in the ER, it was obvious the overdosage amount would need to be monitored longer than an ER visit and inpatient would be required.

Another bombshell.

Back to the hospital. I'll be honest and tell you that I didn't accept the news too well. I told the doctor that we wouldn't be admitted that we would be treated in the ER and then we would go home. I believe my absolute shock and disbelief had taken over my normal sensibilities. Luckily, they came back quickly and I was able to accept the need for Everly to stay (hopefully) just one night.

Everly had a rather rough night...restless, uncomfortable, not sleeping until 3:30 a.m. Then off and on throughout the night she was up and restless. Desats, crying and the like.

However, in the morning, it seemed that all the medicine had gone through her body. So, we were discharged around noon to head home. Again.

This was one of those "I can't believe this is happening" moments. I mean, really, how often has this type of situation happened to you? Never to us AND to our fragile baby who just spent the better part of two months in the hospital. I had to pinch myself. Just truly mind-boggling.

Even in this time, I must trust in God and trust in His care for Everly. I know He loves her infinitely more than I could ever and in that I have faith.

Thank you for your continued prayers and support for Everly and our family!

With love and appreciation,


Everly Update January 9, 2015

Saturday, January 10, 2015

Sister love!! I know I haven't touched base here since shortly after Christmas. Busy, busy. So, to get caught up with our current status, here's a quick update. Everly was finally discharged on Friday, January 2. We were able to discharge with the necessary cpap after two successful nights using it in the hospital.

Unfortunately, our stay at home just wasn't to be. We ended back in the hospital as of this past Monday afternoon. Here's why:

Friday through Sunday evening, Everly was quite congested but jovial at times and pretty laid back. However, Sunday night when she went to sleep, she began a several hour stretch of almost non-stop sneezing and coughing. It was so bad, so intense that we eventually turned off the cpap machine because the nasal prongs were blocking the secretions. The concerning part for us was that her oxygen needs slowly began to creep up. 1 liter, then 2, then 3, then 4. It was an easy decision to call the pediatrician Monday morning to see what was going on.

Side note about pediatrician: As of that Monday, we actually had not confirmed a pediatrician yet. I had called this particular one on Friday but had not heard back if she would take Everly on as a patient or not. So, that morning when I phoned, I wasn't even sure we had a pediatrician anywhere to go to! Luckily, the office welcomed us and allowed us to bring her in right away and let us head straight back to a room, bypassing the waiting area. Once there, the doctor ran a couple swab tests and an RSV screening. The RSV screening was negative. However, the doctor was able to extract gobs of secretions and the thickness and color made her suspicious so she ran a viral/bacterial panel. While we wouldn't get the results showing a new bacterial infection until the following night once we were already in the hospital, she was concerned at this point.

She advised us that we should head into the hospital right away with Everly because she was worried her respiratory needs would progress throughout the night. I really DID NOT want to go anywhere near the hospital AGAIN so I asked her about just treating her at home. She said we could be she was concerned and didn't advise it at all. So, in keeping with my not wanting to go to the hospital, we headed home to try to ride this out. Well, I guess our pediatrician is THAT good because she called it. Everly's respiratory needs quickly became too much for us to be able to support at home. Our machines literally could not provide her the oxygen her body desperately needed. So, we knew the only decision we could make was to head to the ER which we did. **Her bacterial infection affected her respiratory function. It's common in most of us but for Everly, NOTHING is easy.)

Everly seemed "okay" in the ER and even up in PICU for the first few hours on the high amount of O2 she was on. However, as the night wore on, she most definitely was feeling the way her SAT's were looking. Mom was with me at this time and we knew how serious her situation was becoming. The room quickly became a hotbed of activity and the doctor was intense and then the next thing I knew we were having serious conversations about our wishes.

I will skip all the details at this point because I would rather not relive the gut-wrenching angst and emotion that came with the night and the following day. There was no one moment of life-saving techniques but rather a continued worry that she was nearing her end, like her body was giving out. Because of her Trisomy 18 and all that goes with it, it is impossible to know how she will respond to various situations. The various doctors that saw her weren't necessarily bubbling with excitement at her prognosis at this point either. The situation was nothing short of terrifying. That 36 hour period of time is one I'm just happier to leave behind. For good.

We are so blessed and God is so good...all the time! Even in the midst of this night that I would rather not have experienced, God orchestrated a team to be in place to best care for Everly AND US. So much of what happened was a blur. But one thing I do know is that we were supported not only by God but by those dedicated professionals in our room. One of my all-time favorite nurses, Joey, just appeared out of nowhere with an arm around my shoulder, a hug, words of encouragement. He was not even our nurse that night, though he has been so many nights before, but he made it a point to be there for us...not to deliver medicine, not to check vitals...but to solely stand in support of Everly and us. Others, including Kelly, the PA, offered those reassuring smiles, glances and hugs to let us know that we were all a team working for Everly. Kelly had the whole floor to be concerned about but she was there as often as she could, answering our questions and even offering info when we couldn't think to ask. Dr. Chapados, the intensivist on call, jumped in feet first with the hard conversations for us and then even went for an IV line herself when others couldn't get one. She worked arduously to stabilize Everly and assist her within the guidelines of our wishes. She never gave up on her and continue to move forward. This team included many others as well who, though I have not specified here, were instrumental in our life that night. We thank each of you for your part.

Fast forward from Monday night to Wednesday morning. She looked a smidge better clinically, though physically she was in need of a nice bath and fresh clothes. She had been in the same sleeper, same bloodied (from IV) sheets, same everything since Monday due to the seriousness of the situation. But it was time. Our sweet dayshift nurse Lauren, assisted by a PICU nurse in training Maylin, stepped up and offered to bath and change Everly, change the linens and just start the day fresh, erasing all reminders of the night before. I am so thankful for that because I didn't even know where to begin and was just at a loss. Wires, cords, beeping machines, a fragile baby tethered to poles on opposing sides of the bed...not a clue. It changed the whole mood of the room and of our spirits. Thank you ladies! I'm so glad you know when to just take the bull by the horns! lol

It was obvious that this admit was different than before however. The doctors did not sound hopeful that she would/will make a full recovery. They wanted her to, of course, but given all that she's gone through for the past two months, they just weren't/aren't sure. This time it was a culmination of all this time, energy spent working hard, changes in her PH balance, the changes to her body working...any one of these things could cause her more problems now. But we remained/remain hopeful.

On Thursday morning, the topic of discharge was discussed. The doctors, we think, were encouraging discharge because if it were her time still, they would rather us spend it together at home. I brought up discharge because for me it was important to keep her away from as many of those yuck germs as possible. And the best place for that is at home!

Our beloved Nurse Joey! Always happy and fun to be around!

In the midst of all this, our angel doctor, Dr. Niebauer visited us again and was such a ray of light for us at a time when we needed it the most. She was not downtrodden but rather hopeful, like us, that this was just the case of a baby trying hard to overcome a lingering cold and a new bacterial infection. With proper medicine, rest and the hands of God to bring her through, we felt that her recovery was/is just around the corner. We thank you, Dr. Niebaur, for being there and for believing in Everly! May blessings be always upon you and your family!

The doctors were agreeable and working towards that goal as well. Knowing she had picked up this new bacterial infection while inpatient was all the more reason we needed to be at home. This time going home was not about me being sick of the hospital but of keeping Everly in the safest place possible. So, by mid-day, we had our walking papers and were heading home!

So, as of today, 1/10, we are home and she is doing SO much better. I would not dare to say great but getting there. She can go short periods awake without 02 but sleeping is still on 02. At night, she uses the bipap (doctors changed the setting to this rather than cpap) at night now. She's resting well and has several awake, alert and happy smiles throughout the day. She still requires much suctioning and her nose runs more than a marathoner but drainage is a good thing! She is on continuous feeds (meaning small feed running 24 hours a day) to keep her body from having to work too hard to digest a larger amount in a shortened amount of time.

We love you, Lauren!

It is at these times that I am reminded of the poem "Footprints in the Sand" when the man, who only sees one set of footprints in the sand asks why The Lord is not with him during his times of trials. The Lord responds that is the time when He has carried you. I have read and seen this poem my whole life but never before has it been given personal meaning...until now. I know that in these past ten and a half months, The Lord has no doubt carried us. We as humans alone can't do this life by ourselves. I'm so uplifted to know that He is there to carry us through. He provides for us on earth...people, opportunities, knowledge...in ways that only He can.

With love and appreciation,


P.S. Do you know that Everly is turning ONE NEXT month?? I am in awe of her superhero strength and so with that in mind, that will be our theme for her party: superheroes! If you are interested in attending, the date is February 21 from 3-5 p.m. in Westchase. More details later.