Today Is the Day

There are certain days in your life that can't be forgotten.

This is one.

This photo captured the day we told the boys their sister had a life-limiting genetic condition called Trisomy 18.  This photo was taken just moments before our lives as we knew it would be no more.

Everly was born in February 20, 2014.  Unlike most, we did not have a confirmed prenatal diagnosis of Trisomy 18.  At our 20 week check up, there was a concern and then at 23 weeks, there was a suspicion of T18.  However, in the subsequent weeks, that concern went by the wayside and it was thought to be a congenital heart defect alone. 

Nothing more.

On Everly's 5th day of life, our doctor sat us down and gave us news that would forever change our lives.  Our perfect little girl had a chromosomal defect that the medical community considers fatal.  That day we began to grieve the loss of the life we thought we would share with her. 

The news shattered us.  Devastated our family.  Brought to light fears we never even knew existed.

We spent one full day letting the news soak in before we had the boys come to the hospital to share with them as well.  How do you prepare to tell your children something so awful?  Garren, at age 15, knew as soon as we started to speak what we were going to say.  He remembered the 3 week period early on in my pregnancy the doctor suspected Trisomy 18.  It was such a difficult day to watch the agony, the questioning, the confusion and to know not only could you NOT do anything about it but you felt the exact same way as their parent. 

I look back and remember the anxiety we had as adults thinking about telling the boys their sister may not make it home.  To us, we only knew what we were told...most babies don't make it but a very brief time after birth. 

So, we had no expectation she would then spend 11 glorious months with us...experiencing the BEST life!  No, on this day, we thought we should begin preparing for the end.  We didn't reach our point of hope until we began to listen to HER and let HER lead us!  It was then that we began to look toward our newly created BUCKET LIST for her with excitement, hope and joy!  Our list started with just riding in the van, feeling the sun on her face, sleeping in her house.  Who would EVER guess this special BABY BUCKET LIST would include riding in a BOAT, visiting the MOUNTAINS, and meeting SANTA CLAUS??  Not only did we get to do her first little list of three things but her list grew to eventually top 100 AMAZING experiences we shared as a family!

 
What is a challenge for us is why other families do not get this chance?  Why even our family didn't get to see one year?  Five years?  Or her lifetime?  It's impossible to not ask this difficult questions.  I can only answer that it is not us in charge and our God does turn ALL things for good.  Why do we need to experience what seems like the depths of HELL to get to the GOOD?  We will not fully understand in this lifetime.  That I know.  Common platitudes given in times of crises fall on deaf ears when you've lost a child.  Ask who has experienced it.  However, I can tell you that the peace we feel comes from knowing that He is in control and that He walks beside us, carrying us as necessary.  It is not true that God will not give us more than we can handle.  I can tell you firsthand that losing my Everly was 100% no doubt, absolutely more than I could handle alone.  Without Him, I would not be able to get out of bed, function for my two boys, move forward.  No, it IS because of HIM that I CAN choose JOY each and every day. 

So, I look at this picture taken when Everly was 6 days old, 1 day before my 41st birthday, and I am so grateful that our family CHOSE life for Everly. 

We chose to spend each and every day living in the moment, being intentional in our time.  We made this choice on good days and on bad days.  Our Sweet Pea's diagnosis would not stop us from LIVING, from experiencing.  Yes, it was hard and yes, there were challenges.  But our desire to be purposeful with our hours, days, weeks was a conscious decision. 

One that we remain so grateful for...each and every day. 
 
You might not be in the same situation we were in, you might not have a medical diagnosis.  But if you are not living your life to the fullest, today is the day you can make a change.  Small steps. 

Enjoy this moment.  Do something you love.  Live with purpose. Strive to make a difference.  Have no regrets.

Be intentional in your interactions, plans, life, relationships. 
 
Today is the day.  Do it for Everly.  Do it for yourself. 

 

I'd really love to hear from you so feel free to leave a comment.

With love,
Crystal

Everly's Bucket List

From the moment we were told the devastating news of Everly's diagnosis of Trisomy 18, we knew we wanted her to experience "life." Our goal from that very day was to get her out of the confines of the hospital and home with her family.

While we waited for all the necessary requirements before being able to leave, we began to think about all that we would not get to do with her. The thoughts were overwhelming. Debilitating. Depressing.

As the days went by, however, our mindset changed to suddenly what things we wanted her to experience and not what she could not do. We knew we could give her a taste of our life...the one she was born into and we wanted her to experience as much of it as we could. Everly's Bucket List was born.

See, we have been lovers of the "bucket list" for a long time now. For us, it's something to look forward to, work towards, embrace with joy and aspire to complete. It is not nor has ever been synonymous with death or anything of the like. We had a bucket list, and still do, for our marriage. For example, we'd like to hike the Grand Canyon together. We have a bucket list for what we would like the boys to experience or be taught before they leave home. We have a family bucket list of experiences we would like to complete together, like getting scuba certified. So, while we may be loosening the constraints of the title, bucket list, we have used and loved them for years. Several years ago we found tiny silver Dollar Store buckets that we have put slips of paper filled with the list items that we use to actually symbolize the proverbial bucket.

Now, I know what some of you about right now are thinking...how can a newborn or infant have a bucket list? Am I right?

Well, it's simply like this: part of Everly's Bucket List is the experience she would have doing various activities, like feeling the sunshine on her face or hearing the sound of the waves. But other parts of her list, like being in the midst of her brother's nerf fight or hiking on the AT, is important to us because it's a important to someone in our family. And in those cases, we get joy from having those moments with her.

At the end of the day, this Bucket List is about creating memories of our life with Everly. It's joyful. It's life-affirming. It's anything but sad.

When we left the hospital we had a very short list, maybe 6 things. One at a time, we checked them off the list. Feel the sunshine. Check. Go for a walk. Check.

Until those things were all completed.

We added a few more things. As it was now Easter, we added some new Bucket List items like get an Easter basket and go to church. Check and check.

And so it continues to go.

We discuss as a family what will be placed on her list and then we proceed with checking them off.

I still remember the giddiness I had late summer when I realized I was actually thinking about her Halloween costume, then Thanksgiving and unbelievably, Christmas!

So, more list items were added for each of those holidays and seasons. I never thought in a million years based on what the doctors predicted (congestive heart failure at 2-3 months with no option of a heart repair due to her diagnosis) that I would be looking ahead to these holidays!

So, Everly's Bucket List continues to evolve. And for that we are grateful.

Everly's Bucket List: Completed Items

Ride in the van to the house

Feeling sunshine on her face

Walking neighborhood

Go on a bike ride

Walk on the beach

Get an Easter basket

Go to Adventure Island

Hike Lake Rogers

Lay in each boys bed (they added this one)

Go Nana & Papa’s house

Look at a Mylar balloon (Daddy's wish)

Participate in boys nerf war

Taste whipped cream

Daddy/daughterdance (at her party)

Go“swimming” (in her bathtub at the pool with our water)

Go the mountains

Hike the Appalachian Trail

Hear rushing of a mountain stream

Have her nails painted

Play dress up (check, check AND check!!)

See Halloween decorations at our house

Go to family’s favorite restaurant

Attend church

Go to the zoo

Visit beach and dip toes in sand & water

Have a birthday party

Listen & watch the rain

Ride a ferris wheel

See fall colors

Everly's Bucket List: Not Yet Completed

Visit Atlantic Ocean

Go camping (may have to cabin camp or camp on our back patio this time) (Camping has always been a family favorite and one we do monthly between Oct-Mar.)

Have brother drive van with us in it (our newest driver!)

Go for a train ride

Have a tea party

Celebrate all family members birthdays (only two left on Nov.8 & Nov. 10!!)

Celebrate1st birthday!!!!

Ring in the New Year

Taste Nana’s Thanksgiving turkey gravy

Watch Christmas movies

Watch Macy’s Day Parade (It officially begins the holiday season in our house. No football here. Just the parade in all its glory! We are always glued to the TV.)

Pick a Christmas tree together (We buy real and it’s a very big deal when we go pick it out…we call Lowe’s days ahead and arrive when the truck from NC is due to pull in. One year, we were there when the doors opened and SNOW was still on some of the trees! So, it’s AN event to get our tree.)

Put up Christmas Decorations

Go see Christmas lights

See snow (maybe a white Christmas)

Go golfing or at least ride in the cart (for Papa)

Go to Disney World and be where everything is wonderful!

Have a meal with the princesses at Cinderella’s Royal Table at Disney (Very cliché but Disney IS the happiest place on earth.

**List subject to change as needed :-)

With love and appreciation,

Crystal, Jimmy, Garren, Kendan, Everly and Ala

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!

On the Road

Okay, for all my non-Facebook friends and family who didn't see my announcement earlier...we've hit the road! Yup, decided to go on a bit (can you say understatement??) of a road trip.

This isn't just any road trip, though.

No, siree!

We are checking off another special event from Everly's bucket list! We are sweeping her away to the picturesque mountains of North Carolina compliments of my parents.

Annually, our family visits the mountains and this year, as surprising as it is, is no exception. I mean come on, a trip to the neighborhood pool takes us 40 min to prep and pack for alone! Who would think then that crossing three, four if you count leaving Florida, state lines would be doable?

Well, like the statement goes: "Where there's a will, there's a way!"

And WILL we had! And determination. And excitement. And just about anything else we needed to make this happen.

Starting with the fact that this was the first time we needed to take two vehicles for the trip. In one pic I posted, you can see our van and their RAV side by side loaded.

So, here we are in Savannah, our pit stop for the night. I must say that I am pooped! I have had a very hard time turning "off" my brain to sleep or rest the last two nights. I'm overly concerned that I will overlook something that needs to be packed and then Everly will be without. Talk about guilt!! And let's face it, an Ambu mask and 10ml enternal feeding syringes aren't on the shelves at the local Target. Just sayin'. So mama's gotta make sure it's all packed! Hubby's great but he's been very busy with work and the boys are going off their pack lists I gave TO them. Haha!

Sweet Pea is likewise out for the count! She didn't have a restful sleep in the van as kept being disturbed and never hit a deep sleep. She wasn't overly crabby just really letting us know that she wanted some quiet. A bag opening, a chuckle, stopping for gas. You name it and it jarred her.

Shortly after arriving at our hotel for night, she had her feed (side note: I dislike strongly that term "feed" referring to my daughter's meals but that is how they are named in the GI world.) and conked out! That was about 6:30 and she's still out now about 9:30. She's out for the night! We are all right behind her! Traveling is tiring!

So...in my estimation, packing and preparing for this "road trip" is equivalent to the packing and preparing for a month long backpacking trek across Europe. In the winter.

But you know what?

Every single wrinkle from worry, every lost minute of sleep, every careful precaution is worth this trip to the mountains as a complete family of seven.

Stay tuned...lots of updates this week!!

Home Sweet Home

Home from the hospital...Friday (3/7). Just all watching America's Funniest Home Videos together.

Friday we made the slow journey home from the hospital. It was surreal and unnerving at the thought of bringing sweet pea home. We would be solely responsible for her care...her feeding pump, her og tube, her pulse ox machine, her heart monitor, her oxygen tank and most importantly the ambu bag in the likely event it's needed. Not typical newborn care as I recall. But none of this could deter us from the desire to bring our daughter home.

Through hospice we were to have a nurse with us 24 hours a day from Friday to Monday. So, when we arrived home, a nurse was waiting for us. We had already spent so much time training and were almost solely caring for Everly (our choice) in the hospital that at home we planned for it to be no different. So, it was a bit awkward to be home with a nurse essentially just watching us all day and all night. To be fair to them since they were there to do a job and for us needing private family time, we informed the nurses on Saturday that we would be fine alone. We officially could begin our lives as a family of five. We were as ready as we would ever be!

We quickly figured out that moving Everly around and even basic things like diaper changes would require a bit of planning and coordinating. Getting her from one room to the next requires octopus-like skills to hold her and a couple machines simultaneously. The first time we moved from the living room to her room, laughter quickly ensued at the sight. We've since streamlined the procedure and now we look less awkward moving from place to place. She eats via her feed pump every three hours around the clock which requires planning alone since the pump is electric. So going out is planned according to when she needs to eat. I pump every 2-3 hours around the clock as well so that timing also has to be taken into consideration when heading out. Suffice it to say that every outing is a well-planned out event!

First time outside in the sun...she pursed her lips and tightened her eyes and hands initially but just seem to bask in it!

When talking about our desire to bring Everly home, we began to talk about the things we desired for her to experience. So beginning Saturday, we started to check off things we dubbed "The Baby Bucket List." We keep adding things to this list and each member of the family has added items of their own that they'd like Everly to experience. Here's what's on the list thus far: 

* Walk around the neighborhood in the stroller Saturday...check!

* Feel the warmth of the sun Saturday...check!

* Go to the beach and hear the waves Sunday...check!

* Listen to and watch the boys have a nerf war Monday...check!

* From Kendan: Snuggle with her in his bed

* Visit Nana & Papa's house (instead of them coming to ours)

* Hike Lake Rogers (our favorite nearby hike trail)

* From Garren: Watch a movie with her in his bed

* From Daddy: Take her for a bike ride

* From Papa: Take her golfing

We'll continue to add to our list and check off as she experiences . For us, a bucket list has always been something to look forward to and to work towards. So, we are approaching the "Baby Bucket List" with the same zeal and excitement. We are showing this baby a lifetime of love now and if we are so blessed to be able to have more time with her than we can even imagine, she'll just be lucky enough to get a double dose!

 

At the beach with our sweet baby on 3/9/2014...17 days old. Beautiful day! Her heart rate was the lowest we've ever seen it...in the low 120s!!

Sunday we went to the beach and while crossing the sand, I noticed a mom with a toddler and dad sitting near us. While her child played next to her, this mom had a pile of papers pulled out and appeared to be doing work of some kind. As we left the beach, I saw the same family again at the play equipment but this time mom had a laptop opened at the picnic table consumed. It struck me in both instances that it could very well have been me just 18 days before...trying to multitask and more than likely shortchanging my boys so that I could just get one more thing done. Rarely was I anywhere without "something" to do lest there be 5 minutes of unaccounted for time.

Everly has already taught us to appreciate and not take time for granted in general. Every moment is precious and is a gift from God. None of us know when our last moment will be here on this earth. She has taught me in particular to be present...really present...with my children. I have enjoyed so many great conversations and had such positive interactions with the boys since the diagnosis. We all are looking at our lives through new lenses compliments of our sweet pea! No longer will I shortchange my children to get one more task accomplished at the expense of being fully present with them.

Ala is protective of her "baby"...when the visiting nurse tried to look in on Everly, Ala jumped up and planted herself between the nurse and Everly! As if by instinct, Ala is Everly's personal guard dog.

I encourage you to be present. I encourage you to be in the moment. I encourage you to not take anything for granted.

"Life is not measured by the number of breaths we take but by the moments that take our breath away."

Awake and alert after her first bath and baby massage. She loved getting her hair washed and combed.

Please continue to pray for Everly and for our family for continued good health and strength. Please continue to post your comments on our journal because they are sources of strength for us. Please continue to share her FB page and her website. We'd like for everyone to know that babies with T18 are beautiful, loved and living.

With love and appreciation,

Crystal