Introducing Tracy...

August 7, 2011 was a day that changed my life...literally.  After one really HORRIBLE weekend in the NICU with Charly (remember this post here), I received an email from a sweet lady named Tracy.  I didn't respond to her for a few days, but I read the email the day she sent it and I knew that I had to reply soon.

I was doing okay that weekend, but really needing a little extra "oomph" if you know what I mean.  In her email she introduced herself briefly and said (speaking from her own experiences) "know that no two experiences are the same but I do want you to know I think of you and pray for you daily.  I have been blessed with little miracle babies  and I know all the prayers people sent me helped our family so much.

I read your blog as often as I can. I smile with you and cry with you. I wish the best for you and your family.  Your are a beautiful mother doing so much for little Charly...It is a blessing to learn what miracles all little babies are."

Since that day...Tracy has become one of our BIGGEST "silent" Angels.  I say "silent" because she has been doing, helping, rooting, praying, hoping, giving, and encouraging me for the past year and a half from a distance.  Luckily, we live in the same state, but far enough away that her emails, kindness and gratitude has been felt hundreds of miles!

I have been OVERWHELMED by the love and support I have been given by so many.  I have hard time singling people out and giving them credit because I don't want "others" to feel bad.  

Tracy is LONG overdue for a HUGE "THANK YOU" and she has a story that I know will inspire you as much as it inspires me!  She has done multiple acts of kindness and compassion for my family, including but not limited to: driving 200 miles to bring items for Charly's Yard Sale donations, spending time with us in her hometown and letting us into her world (insisting on paying for our hotel and other things...which in her home town...was more than I paid to stay in New York City!)...and so many other acts of compassion.  Trust me, I could go on and on.  Really, I feel that words can't really express what is in my heart, and my heart is so full...I know this post doesn't do it justice!

But before I posted her story (which is coming tomorrow...trust me...you don't want to miss it)...I wanted to introduce Tracy and let you know how much she means to me.  Tracy is the kind of person EVERYONE needs to have in their lives!  She is so positive, hopeful, and is one of the most GIVING people I have ever met.  Her and her husband own a Cafe and work hard for what they have.  She is a dedicated mom and wife, and uses her spare time helping others, her family, and her community.  She is beautiful on the inside and out, and I feel so privileged to call her friend (and sister!).  So tomorrow...make sure you come back and read Tracy's Story.  She is one STRONG, AMAZING Woman, and wow, does she have a story that will melt your heart.  Love you Tracy!

 Pelican Lake Cafe - Tracy & Garth's AWESOME Cafe!

My sweetie Pies eating some of the BEST FOOD EVER (at Pelican Lake Cafe)!

Charly, Me & John (photo courtesy of photographer Jaxon...lol).

"Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to a new understanding with the passing whisper of their wisdom, and make the sky more beautiful to gaze upon. Some people stay in our lives awhile, leave footprints on our hearts, and we are never, ever the same." ~Unknown.

***I also owe a HUGE "THANK YOU" to Angie S, Owner of For All Time Clocks!  Angie posted Charly's blog on her business facebook page, which is how Tracy read the blog and got in contact with me (and several others too)...for that I will be forever grateful!  

Angie...you are a guiding light! 

Hugs to Tracy and Angie S!

Pulling My Socks Off!

Being on "RSV/Flu season lock-down" means that some days...there's nothing to do...but pull your socks off.

Up & Running Soon...

Thank heavens for more miracles!  I found my CAMERA!  Now...if I could only find my keys (really, you have no idea how the synapses in my brain are NOT connecting).

And...drumroll...Jen gave me her laptop to borrow until I can get mine fixed or get a new one!  So...you should start to see some blog posts rolling in!

So Much to Share...but I'm Stuck!

I am very sorry I am so behind on the blog! I lost my camera and my laptop decided to die a few months ago. I have a renewed want to blog....and can't do anything right now.

I'm using my phone now, but my other posts and pictures won't attach.

I will be back soon. A few more road blocks, but I have so much to share....can't wait! If anyone has an old computer or camera they are getting rid of (working)...I will be glad to take it off your hands. :-)

Thanks again for all your continued faith, hope, and support for us and our little Charly Bella! Hugs!

Gettin Pickled at Peggy Sue's

Charly went on her first airplane ride! She was a champ (besides the blowout pre-boarding). Other passengers complimented us so much because she was so quiet. She slept most of the way and played with Grandma Phillips the other half! We are in San Jose for the "Ability Expo"!

Tooth Happiness?

 

Teeth 4,5, and 6 are on their way! What a hair raising experience it's been at our house the last few weeks! 

Thank heavens...so far...all teeth are white (as opposed to Grinch green preemie teeth)!

I'm Thankful!

Today I'm...

Thankful for family and friends who don't expect "Thank you Cards" or praise for the countless (and I really do mean countless) acts of kindness and service that they have rendered. Words can't express the thankfulness in my heart for the blessings and Angels that have been in my life (especially since Charly). 

I'm not always "thankful enough" and "deserving enough", but you are in my thoughts and prayers of gratitude for all you have done for me and my family. It hasn't been easy being ME, and I'm harder on myself than anyone I know. 

I've needed your strength, your encouragement, your love, and most of all your optimism. My sweet friend said once "Poor is a state of mind", and it has been one of my foremost thoughts...especially this past month or so. Thank you friends and family for the meals, the treats, the kind words, and for going without so that you can give to someone else. 

I am truly grateful for each and every one of you...and know that I am better for knowing YOU!

Time for Change...

I'm sitting on my bed with tears rolling down my face.  I've been wanting (and ready) to announce a few things that need to "Change" on my blog.  First, I need to explain something, but I can't say it all right now, not in this post anyway.  But I need to start somewhere...so here goes:

When Charly was born I had an INCREDIBLE amount of miracles happen.  So many, that even through documenting this blog, sharing them with friends/family, and writing them down in the kiddo's journals...I still can't keep up with all of them.  I know that some of you may not understand what I'm about to write, but I hope you can at least feel in your heart what I'm about to tell you.

I have experienced the same "miracle" with the births of both of my children.  When Jaxon came into the world...it was a brisk fall Saturday morning.  I had been in labor nearly 24 hours and was completely exhausted.  There is not a way for me to put into words the feeling of giving birth.  I'm not referencing the "physical" description.  I'm talking the "spiritual".  What I do know...is that the veil between this world and the next was extremely thin.  (President Smith in the April 1916 LDS General Conference, said this: “Sometimes the Lord expands our vision from this point of view and this side of the veil, that we feel and seem to realize that we can look beyond the thin veil which separates us from that other sphere.”).

So Jaxon was born and the veil parted for a time.  Tears, love, hope, happiness and spirits on earth and in Heaven rejoiced.  And within a few moments...the veil closed, and we were left as earthly family members celebrating the arrival of our sweet little boy.

With Charly...it was VERY different.  When she was born...it was scary.  I was in shock for several hours.  My body was tired, medicated, and hurting.  My heart was broken and afraid.  Although I had a wonderful husband by my side...and family that raced to our rescue...the veil did not seem to open.  I knew that I was a daughter of a loving Heavenly Father, and I knew that no matter what...I would be okay.  BUT...I could not "feel" the VEIL.  Not like it felt with Jaxon, anyway.

It must have been a few days before I really started to recognize the opening of the veil.  I did a few "unusual" things.  Friends and family that immediately came to see me...were immediately re-directed to the NICU to see Charly.  I felt such an INTENSE feeling that I needed to share her...that people needed to witness her sweet little body with their own eyes.  I didn't think about contamination, or over visiting, or perhaps I didn't screen my visitors’ health as closely as those later NICU days...but I had never seen anything so small and beautiful in my whole life...and how could I NOT share her?  She was ALIVE.

It wasn't until the day Charly was blessed (July 24th) that I felt the veil completely open.  I could feel outstretched arms of family members who have passed away...wrapped around me during the day of her blessing.  I knew my Dad was there.  I could feel him (he passed away in 2008).  I could feel "physical"' hands of my friend and family who were there to love us and support us during her very spiritual baby blessing.  Tears of love, hope, and happiness filled the room because we KNOW we have a plan.  I had other amazing miracles that took place that I don't feel ready or perhaps that it's too scared to share...happen to me during those early weeks of Charly's birth.

The veil remained open for some time.  I could feel it last year at this exact same time.  I could feel it when she had her surgeries in the NICU.  I could feel it when we brought her home...and then again at Christmas.  The veil had remained "OPEN" for several months.  I could feel promptings and whisperings on and off for a long time.  And then...slowly but surely...the veil began to close.  It wasn't until a few months ago...when I seemed to start feeling like I was in a "RUTT"...that I finally recognized what was happening.

Charly has decided to stay with us here on earth.  We have promised to love her no matter what.  The time of easy gentle whisperings are more few and far between, and the veil is now completely closed.  I am amazed and blessed to have had such a special experience.  But, it is harder and harder for me to find some of those "precious" feelings.  I'm living my everyday life now.  I LOVE IT.  LIFE IS GOOD.  But, it's definitely different than before.  I have to strive harder to fight back feelings of doubt, of self worth issues, and it's harder to feel "peace" when trials come and go.

I am doing great though, our family is doing awesome, and we are so blessed.

I'm grateful for all that I have, and so it's time for a slight change, and a little bit of a new direction.

I felt inspired to ask a few people to write posts on the blog.  Not because I don't want to do it, or because I can't do it.  I'm going to keep posting as well...but these folks are special parts of Charly's story, and I want this documented for her.  I also have been so INSPIRED and changed forever by the "Angels" that I have had on "THIS SIDE" of the veil...and I want to share some of them with you.

I hope you find their stories and posts just as inspiring and uplifting as I do.

Love,
Angie

Charly's 1st Tooth!

"EVERYBODY...I HAVE GOTTEN MY FIRST TOOTH!" (...Said Charly Bella! I can't "see" it yet, but I can feel it coming in on the bottom. I'll keep you posted if it turns out to be green. :)

Still...No Shunt Needed!

Thank you all for your thoughts and prayers. Charly's CT went great. The technician was very sweet, and Charly was a good girl and held very still. 

At about 3 the Neurosurgeon's office called with an update. 

They don't know why her head is growing...but the good news is that her ventricles are still passing spinal fluid, and there is space between her brain and her skull (which means that they don't need to do surgical intervention at this time).

Her regular Neurosurgeon was out today, but he will be following up when he gets in. At this point we are relieved and still a little confused. We won't stop believing in the power of prayer, and miracles...so THANK YOU for supporting us!

Another CT Scan...

Hey Everyone! 

Little Charly Bella had some bad news last week about the rapid growth of her head. She is having a CT scan tomorrow and we would love a few extra prayers for her. 

Thanks again for all of your love and support!

"Got Preemie?" Fundraiser!

Today was the "Got Preemie?" Fundraiser for the Parent Support Group (Common Bonds) for the Hospital that Charly was born at.  John and I feel so strongly about giving back to other parents and families who are going through the NICU world.

Me & Charly Bella...I ran a 5k earlier today...so I look a little ragged.  But that's another story!

 This event was AMAZING.  It was put together by a man named Brandon...who's baby was in the NICU when he started the planning process.  He did what so many of us NICU families longed for...an opportunity to say "thank you" and to give back for all of the love and support we were given during our NICU stay.  

Many people in Utah are not aware that hospital's need donations for babies (blankets, clothing, etc) and families (treats for the parent lounge, support packages, etc).  Many of the Donations in Utah are directed to Primary Children's Medical Center.  Although I would NOT discourage donations to that facility (Charly lived there for 4 months), they are constantly BOMBARDED with donations.  I had a security guard tell me once that they have a "store house" full of donations.  I saw hundreds and hundreds of donations going into that facility during our stay.  We also donated, continue to donate, and will continue to donate occasionally.

What I do want to say is that...there are OTHER HOSPITALS, and community hospitals with NICU's (Neonatal Intensive Care Units) that NEVER, EVER see hardly any of this type of donations.  They too are in need of blankets, baby clothing, and parent support items...yet they are constantly overlooked (I believe due to the fact that there is a LARGE children's hospital in the same valley).

This fundraiser was a great way to earn funds and help a hospital that NEEDS to help families and parents in the NICU.  Many, many families LIVE there for several months, and it is so important to treat the family as a WHOLE as much as possible when this happens.  I know that is one thing that I appreciated so much about IMC...that they treated us like FAMILY.

I decided to help by putting together a Baby Utes basket, and an "Ultimate Utes Fan" basket.  I had a few items already, bought a few more, had help from other donations (thanks Des, Brenda, and Diana), and had a sweet friend Jody get some of the merchandise signed by the Utes Foot ball coach.

 

Baby Utes Basket for the "Got Preemie?" Fundraiser! Included 2 Utes onesies, Utes baby fleece blanket, 4 custom made ClipBees hair pins, Utes lanyard, and a university of Utah Sticker.  I believe the basket auctioned for 80$

Ute Fans "dream basket": a autographed hat and football by Coach

Whittingham, Utes chips, Utes wallet, Utes lanyard, Utes wristband, Utes cup, Utes T-shirt, Utes decals, and a red/white para-cord wristband.  I believe this basket auctioned for $150.

 Again, we also had the opportunity to meet and greet other NICU families who were there bringing their items to donate to the fundraiser.  It's so amazing how many families have so little to give...yet they constantly keep giving and giving...so others can have.

  

Charly Bella fell in love (again) at the fundraiser...she sure has a lot of boyfriends. I do have to say...I'm so impressed that the lead singer of Royal Bliss (Neal Middleton) took time to come and show support, and sang! I will definitely be telling my friends and family! He sounded AWESOME!

 Thank you, Thank you!

 He sang a "private concert" and I am telling you...I have NEVER had so much love in my heart for a concert like that!  (John, Neal, Charly Bella & Me).

I think EVERYONE should run out and buy a Royal Bliss CD NOW!  Seriously, how else can I ask to pay it forward to someone who was so awesome to come and support us!  LOVED IT!

By the end of the afternoon...I think John was literally star struck because he got super sick.  Poor guy!  What an incredible day.  I hope ALL of you make it to next years event!

Paying it Forward...

This is going to be fun! Everybody come on out!

Survivor's Guilt

Lately I've been struggling.  I know that this post might not make sense to some, it may offend others, and it just might break your heart...like it does mine.  

When Charly was in Primary Children's hospital I was so enamored with her, her medical issues, the stress of living with a sick baby, and dealing with so many issues...I occasionally didn't (or couldn't) see what was happening around me.  However, on occasion, when the weather was just right, or the wind blew East, or the NICU was a little silent...I paid close attention to my surroundings and the pain of others surrounding me.

I remember very vividly the first week Charly was there.  There was a little baby boy - extremely sick.  He never had family visit (at least when I was there).  I don't even remember his name.  I do however remember how I overheard the nurses talk about "withdrawal" (meaning they were going to take him off the ventilator) and my stomach was sick.  I wanted to scoop up that baby boy, hold him tight, and slide into the incubator next to Charly.  Here I was...a total stranger, completely in love with this baby boy, whom I never met.

I  never did see any family come to see him.  I don't even know for sure what exactly was wrong with him, but I do know that he was taken into one of the "family rooms" later that night, where whomever he belonged to...said their last good-bye's, and I never saw him again.

During the course of my NICU stay...there were a few babies that shared a room with Charly...that never went home.  They became little Angels in heaven, and I can't quite explain the love in my heart I had (and still have) for Charly's little roommates.  My heart grew at least three sizes larger those months in the NICU.

Occasionally I find myself thinking of those babies.  Sometimes I even feel guilty that we made it out.  We came home.  We are sitting here together at this moment loving and holding our little Charly Bella.  We are so blessed, thankful, hopeful, happy, believers of Miracles, thankful for a loving Heavenly Father, increasing our testimonies, moving forward with faith...but NEVER forgetting who we left behind...NEVER forgetting those precious little miracles that were wrapped in the arms of the Savior and taken home.

As the fall season begins...my mind is flooded with memories of last year.  Occasionally there will be a familiar sound, or smell that will instantly take me back to the NICU...or take me back to that special little boy who died that day last September, or remind me of Stacey's story....and so many others.

I find myself opening my heart even more to try as hard as I can to help others.  I fail at so many things.  I am sometimes easily overwhelmed, but I feel like I have been given a unique responsibility (a mission you could say) to help share others stories, to ask or share help that others need, and in this process...my heart is growing, growing, and growing...might even be 4 times it's usual size.  

I came across a blog today...one that I hadn't ever seen or heard of before.  It struck me how much faith, love and hope families have...the families who have little Angels in heaven.  Families who long for their little ones, but move forward with incredible faith.  I am learning so much from these families...and am so thankful for their stories, and for the love that they are teaching me.  Learning and loving these stories, and these families...helps me hold tighter to Charly each night.  When I have to wake up every 3 hours to fill her feeding tube bag, or worry about her oxygen saturation, or hear her heart monitor go off constantly because of her bradicardic episodes...I will remember how thankful I truly am for what I have, and how lucky I am to have had the experiences I have with Charly.  Without her...I would have never learned some of these life lessons, or met some incredible people, or felt the love of my Savior like this little girl has taught me.

So this week I'm grateful for Gracie, I'm inspired by Paul Cardall, and I'm praying for my dear friend Kellie.

Hope your heart grows too:

  

Answer

SARAH MCLACHLAN - "Answer"

I will be the answer
At the end of the line
I will be there for you
While you take the time

In the burning of uncertainty
I will be your solid ground

I will hold the balance
If you can't look down

If it takes my whole life
I won't break, I won't bend

It will all be worth it

Worth it in the end

Cause I can only tell you what I know
That I need you in my life

When the stars have all gone out
You'll still be burning so bright

Cast me gently

Into morning

For the night has been unkind

Take me to a
Place so holy

 

That I can wash this from my mind
The memory of choosing not to fight

If it takes my whole life
I won't break, I won't bend

It will all be worth it
Worth it in the end

 'Cause I can only tell you what I know
That I need you in my life

When the stars have all burned out
You'll still be burning so bright

Cast me gently
Into morning...

http://myplay.com/audio_player/sarah-mclachlan/6103/103631/123558?allowBrowsing=1

Best Yard Sale EVER!

Thank you ALL for making the Yard Sale last Saturday a complete success! A special thank you to all who donated items, volunteered at the sale, baked the baked goods, and so much more. 

We had a great turn out! 

 Because of the kindness and goodness of so many of you...today was a total success.  My heart is full of gratitude to you for so much! Today is another example that mankind...really is that..."kind".

 Charly has some "sweet Angels"!

 These beautiful clips were donated to Charly's Yard sale by John’s beautiful cousin Brenda! They were a HUGE success!

 Brenda donated over 150 clips! Please take a minute to shop for more clips online. Use code charly10 for 10% off and she will donate 1.00 per item :). It’s also a GREAT way to pay things forward to someone who has a HUGE heart! 

Thank you Brenda! http://www.etsy.com/shop/ClipBees

 We have so many people to thank for the great turn out, the many awesome donations, the tasty baked goods, and those of you that set up, and cleaned up.

 Thank you Emily for all the YUMMY cupcakes, and for taking the time during your busy week to help us (Emily moved into a new home, and still made time for her bestie...Love you EM!)

 A LARGER THAN LIFE "THANK YOU" to the Lloyd's for all of their work!

 Thank you Grandma/Grandpa White for the awning, for helping at the Bake Sale, and for buying so many cookies!  We recognize your efforts in helping us today!!

 We had some special visitors.  One of Charly's Primary Nurses (when she was born...) came to support us.  We also had so many other friends and family, and many NICU familes that came.

 Here is Charly with one of her boyfriends, Callen.

 Charly and I with some NICU families.  It seriously brings tears to my eyes thinking that some of the families with HUGE medical issues/bills of their own are always some of the first ones that come to our rescue.  Thank you so much Paula, Mirjeta, Monica, and so many more!!

 Also a special "Thanks" to "Aunt Jen" for being the Yard Sale "accountant" and for putting in hours, and hours of time in preparation and planning (thank you Kathleen too).

We learned a lot about what

worked and what we would do differently. We want to share this information and help other NICU families bombarded with medical bills and challenges have yard sales as well. 

 

We have A LOT to PAY FORWARD!

 

Charly sends her love and promises she's being a good girl...and will continue to be thankful for MIRACLES. Thank you all for being a part of Charly's Miracle!

 THANK YOU, THANK YOU to ALL!! Love Charly and Family!!