What's Next?

Today marks seven weeks since Everly went to Heaven. 

No, today isn't any easier than it was before but we've learned to cope better. 

Everly at 4 months old.

Right away we knew that keeping busy would be beneficial for us.  Necessary even.  And busy we've been!  So much so that I'm having to carve out this time to write much like I did when I would hold Everly in my lap and write in previous posts.
So, here I sit trying to encapsulate our life for the past few weeks since Everly's Celebration of Life February 20 and the only comparison I have is that it's like a roller coaster.  It really has been. 

We've had a touring-like schedule during the day, with Jimmy working long hours and me with the boys, school and catching up, but each night ends the same for Jimmy and myself:  tears of sorrow and hearts hurting an unspeakable, unimaginable pain that is our now constant companion.  

Please understand that I share this not for sympathy but because I know it's hidden well. I know  we have disguised it. 

It's there.  All.  The.  Time.


Love in daddy's arms

Know this when we are out.  When we are working in the yard.  When you run into us at Publix.  When you see us at the gym.  When we are at church.  Yes, even when we are laughing.

During the day, we are consumed by work, activities, functions, workouts, school and just the normal humdrum of our daily lives.   

But when the sun goes down and the children are all nestled in their beds, visions of sugarplums, unfortunately, are not what's dancing in our heads.

Simply put:  we miss our daughter.  We miss holding her.  We yearn to hear her, smell her, to kiss her, to see her smile.  It is still to us, 7 weeks later, unfathomable that we will not have that again while on this earth. 

It is every parent's worst nightmare.  To lose a child. 

But here we are living it.  Having to go on and move forward.  Having to figure out how to live when you have a hole that can not under any circumstance be filled. 

How does one do that?

That is what we've been trying to figure out for the past 50 days, 7 weekends, 1176 hours and 70,560 minutes.  

But, just like a modern day fairy tale, this story does have a happy ending. 

We have to make it so.  We are responsible from here on out with how we choose to live.  We have free will for how we handle our sadness.  We make decisions daily to live with intention in our grief or to let it get the best of us. 

Everly would want us to be happy.  To make others happy.  To encourage active living. 

 We desire to take our love for Everly and to love others.  We long to share how she lived life to the fullest and help others do the same.  Diagnosis, limitations, predicaments do not have to be barriers.  We hope to share these messages. 

So with that Everly's Angels was born.

Everly's Angels is still in its infancy with planning, goals and how it will impact others.  However, our heart is and will remain to share love with all and to help others live life well. 

We do not know right now where it will lead but we have taken the first few baby steps...

Everly spent much time in the PICU as well as some time in the NICU at birth.  I was fortunate that I could spend every night there while Jimmy or my parents were with the boys.  However, not all babies and children were able to have a caregiver remain in the hospital with them.  Some parents both work full-time, some have other children to care for at home and still others just live too far away to make it a feasible option to commute daily.  As unbelievable as it was for me to accept, there are other situations where one or both parents were not allowed to visit the child in PICU. 

After spending time contemplating the experience we had in the PICU even though it was a "hospital" stay, we realized that two things made it so...the nursing staff (y'all already know how we feel about our friends there) and how we chose to spend our time.  We chose to make the most of each day we had with Everly, including those hospital ones. 

Our heart has been touched that one of the ways we would like to help is with our time.  God wants us to give of our time, talents and treasures. 

And so we shall.

I began the process last week of becoming a Pet Therapy volunteer with Ala, our 5 year old malti-tzu, at St. Joseph's Children's Hospital.  Some of you may know that Ala has been making therapy visits to nursing homes and in elementary schools for the past 5 years now.  So, we are thrilled that we will be able to bless those children in the PICU with what might be there only non-medical visit of the day.

The babies in the NICU sometimes aren't able to have a caregiver stay with them 24/7 for the same reasons as those in the PICU.  We would like to fill in some of the gaps.  So, my parents, myself and Jimmy have a heart to become "cuddlers" there...feeding, changing diapers and providing another set of arms to soothe a crying or fussy baby.  Right now, they have no openings for this volunteer position but the application is in :-)  Prayers that a spot opens up when God deems it the right time.

Our almost 16 year old son also was touched by his sister and has a heart for special needs children.  He volunteered this past weekend at a local church's respite care day for parents.  He enjoyed it so much that he has decided to continue to go back. 

Jimmy and I also were asked to participate in a NICU Parent Support Group to assist other parents.  Some of these parents, like us, will be entering this new world of machines, tubes and special needs like we did.  Some just need to know that living outside the NICU is possible.  And others just need someone to talk with who understands.  We are so excited about this new project! 

These are just three examples of ways we are beginning our new "next."  Our heads are buzzing with ideas for the future of Everly's Angels and our hearts soaring!  We now have an open Etsy store with Team Everly t-shirts, sweet peas and even specially designed bookmarks.  All proceeds will go into future plans for Everly's Angels. 

We do not know where this new path will lead us, nor who will be touched by it but we do know that the way Everly touched us is how we would like to impact others.  If you have a heart to get involved or just would like to help us brainstorm with us, we would love to hear from you!  I know many of you are much more experienced than we are and we need YOU. 

Thank you, family, friends and complete strangers, for walking alongside us on this walk.  Thank you for taking the time to get this far down in the page, too.  We appreciate every single thought, prayer, call, message or kind gesture toward our family and on behalf of our family. 

With God's love and with your support, we CAN continue and not only continue but to share Everly and her message with ALL!

Matthew 5:16  In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

Life in NICU

 

Every girl needs a little decoration, even in the hospital!

We are home!  Finally home!  However, with this new sense of "freedom" comes big responsibility.  Before I share with you in another update how life is at home, I'd like to show you life in the NICU for Everly's first 15 days.

Because we knew that she would be going into the NICU, we were able to take a tour and have the children take their NICU class so they could also come visit once Everly was born.  We all learned so much during our respective classes and tours.  As much as I thought I was prepared for the NICU, I quickly found that I was not.

 

A little girly decoration I pre-made to spruce up her temporary digs. Matches her big name banner in her room. Thank you Susan for all the die cut letters.

No one can prepare you for all the doctors who visit.  No one can prepare you for all the vital checks done around the clock.  No one can prepare you for all the lab work that must be done on your baby. No one can prepare you for the lack of sleep everyone will get...or not get as the case may be.  No one can prepare you for all the tubes, leads and monitors your child will be hooked to there.  No one can prepare you to see your child in such a vulnerable position.
 
Although the mechanics of being in NICU were scary and unfamiliar, we were blessed to have the best nursing staff around!  These ladies took care of Everly's needs, found better ways to make her comfortable and even helped us out as we lived there 24/7 for 15 days.  With one couch and a non-reclining chair, sleep and comfort  were miserably lacking but knowing she was receiving excellent care made it worth it.

 

Sweet pea's birth sign and weekly stats board we took to the hospital.

When our diagnosis changed during our stay, the nurses showed compassion and care towards us and even more so towards Everly.  Only 1 in 6,000 babies born are diagnosed with Trisomy 18.  We are lucky to have this sweet pea and even luckier to have been given teams of nurses who loved her, too!!  The nurses were amazed daily at how alert, aware and strong she continued to be.  Most of the nurses had had limited or no experience with babies like Everly.  But that didn't stop them from researching her condition and finding ways to make her comfortable.  What a testament to their dedication to nursing!

Almost before it was too late, we decided to photograph the nursing staff who cared and loved our sweet pea while in NICU.  So, if you're reading this and we missed your picture, please forgive us as we didn't think about it until days before our discharge.  On the flip side, if you appear in a picture and you would rather not be on our journal page, please let me know and I will remove it.  I will forever cherish the faces of those who walked with us on this journey the first two weeks of Everly's life.  Every nurse, every respiratory therapist, the doctors, the hospital support staff and even a security guard or two made a difference in our stay.

With love and appreciation,

Crystal & Jimmy

Dr. Mendoza...the doctor who broke the news to us and the most compassionate doctor I know! Love her! This picture was taken the night before we discharged...she was not even the attending doctor for us that night but wanted to come by and see us one last time. Spent 1/2 hour just hanging out with us!

Charge Nurse Felice...there are no words adequate enough to describe this woman...she was given to us from God above I know for sure. Love this woman!

Nurse Flo...stayed with us for a record 3 nights in a row. Loved her spirit and motivation!

Nurse Kristina...our night time Primary nurse. Love this lady! 

Nurse Kristy...had probably the toughest night with us...the night the Everly had to get a new IV, then umbilical catheter, then two PICC line attempts.

Nurse Melissa...smart and on it!

Nurse Elizabeth...sweet and caring!! An amazing woman of God!! 

Nurse Beth...didn't get an individual shot before her rotation ended...all around award winner! Helped in more ways than I can count!!!

Spread a Little Sunshine

There may be no sun outside but there is inside our NICU room! Little Everly went on light therapy yesterday for low bilirubin count. That severely limited the most important part of the day...kangaroo care...to three short 20-30 min sessions.

Our neonatologist just stopped in for our daily check up. Guess what? We received the go ahead for kangaroo care and light therapy simultaneously! So, no time limits! Just has to go to "bed " to get her hands on checks and feelings. But other than that can be skin to skin with us! So exciting!

She also increased her feedings to every three hours from every six. So, mama's going to become a pumping queen to keep up with her. But that is also good news that she's able to handle her tube feedings so that's good.

We've not had any other major breathing issues that required outside intervention since a couple of nights ago. She does struggle at times but has been able to "fix" it herself for the most part. Praising God for that!

Still waiting for answers for a few lingering questions, though. Hope those come soon but in the meantime we will continue to focus on her and the boys.

More later,

Crystal

Update #2

First, thank you for all the comments and words of encouragement. They have been the source of hope these past two days. And with that, let me apologize for not getting this out sooner. Didn't realize the energy that would be gone and the many interruptions we have daily between doctors, tests and just monitoring her.

Once I was moved out of recovery on Thursday, they did take me on the stretcher to the NICU to see Everly. Jimmy was already there and had been with her since leaving the delivery room. During that time, he was texting me pictures of her and giving me some basic info on how she was doing. Unfortunately, I wasn't able to stay with her more than a few minutes, just long enough to kiss her and see with the cpap on and a tube in her mouth. Then I was taken to my room. According to Jimmy, her vitals were checked hourly, they took an x-ray, an EKG and an echo of her heart. My mom was also in the room with Jimmy and was present when the cardiologist updated them on his findings. It was then that they were told of another heart defect that was found...Bicuspid Aortic Valve. In a nutshell, it means that this valve that distributes oxygen-rich blood to the body has two flaps instead of three. Following the cardiologist visit, the neonatologist visited and instructed the nurses that they could remove her cpap machine. Later in the evening, the boys and my dad arrived and we all went to the NICU together and joined Jimmy and my mom. Jimmy was able to sponge bath her later that night after I had returned to my room and my parents/boys left. Much later, Jimmy was the first lucky one to hold sweet Everly in the quiet of the night. He texted me a photo to my room and I was so glad that one of us was able to hold her the first day.

On Friday, it was the routine of vitals, echos, EKG and few blood draws. The excitement for me was that after breakfast, I was allowed to offer her kangaroo care which is skin to skin contact. That was so comforting for both of us.

Unfortunately, the IV she received at birth started to leak and they had to replace it. It took 3 pokes to get the new one. But, five hours later, that one leaked and they needed to find a new IV site...3 more pokes. I received another opportunity to do kangaroo care with her. It was then that our nurse noticed that this new IV was leaking. It was then discussed with us the idea of starting a PICC line instead. The benefit to this is that it lasts longer than a regular IV. The downside is that it is a central line straight to her heart and comes with its own risks. Unlike the IV line, this one requires parental consent. Seeing that she had already lost so may vein up to this point, we both agreed it was necessary since we are looking at a bit of a stay in NICU.

So, at 10:45, we left NICU for my room while they prepped the room and Everly for the procedure. After a couple of hours we still had not heard anything, so we called up to the room to find out that they were not successful in starting the PICC line. One thing about that is because she had already lost her IV earlier in the day, they were unable to give her the customary sedation medication used during the procedure. After much discussion, they decided to try to do another regular IV line and tried almost every other vein...arms, legs, wrists and even twice on the scalp. Still no success after two more hours. Then it was decided to try to go in through the drying umbilical cord which is usually done right after birth. However, it was very dry so they weren't sure they could do it. After another long three hours, it worked. She was in need of fluids at this point since she had bee IV free for about 8+ hours now. Shortly after they decided to try another PICC line under her arm because the umbilical cord line wouldn't last for too long. So another hour and a half of work and the PICC line was inserted. She is a tough cookie and really had a lot to endure during this time.

Fast forward past two more days (Saturday and Sunday) and we are here today just waiting for answers. Her medical episodes aren't following along with what the doctors would expect based on her gestational age and her heart condition. So, we are in a wait and see pattern until the tests come back and then the doctors can make decisions based on that.

Last night (Sunday), was challenging because she had many episodes of her breathing stopped but she wasn't able to recover on her own. So, the respiratory therapist was essentially planted in the room for the night. It was a night of worry and no sleep to say that the least.

Garren will be taking over updates and posting for us as things come up. Thanks for checking back.

Crystal & Jimmy