Update on Charly Bella

In our last post we wrote about a great opportunity for Charly with a nonprofit organization called Children and the Earth, and a gofundme page that a great friend has set up to assist Charly and her many needs.

Charly has been regressing in some ways.  Charly is now falling down more than she ever has.  This brings up two problems, first she is much taller so when she hits the ground it is with much more of an impact that can break an arm or a shoulder, and second her head can hit the floor and cause more damage (as she doesn't put her arms out to catch herself when she falls...so she falls sometimes stiff as a board).  We began to notice that Charly was not eating as well, and all of a sudden she stopped being able to take small sips out of a straw.

Put the two together and it is a recipe for disaster.  We also remembered what her neurosurgeon told us that those are signs of hydrocephalus.  We immediately called and booked an appointment and Charly's neurosurgeon ordered a CT scan right away.  We drove back and forth to primary children's hospital for several days while we waited for results of the tests.  We received mixed results from the CT Scan.  And we also found out that Charly had a small stroke.  This news explains some things but brings up more concerns than it does relief.  

The surgeon told us we need to get with the Opthomologist as soon as we could to see if there was pressure in the back of her eyes.  Angie knows the proper name but I am just winging it here.  The Opthomolgist tried but Charly was not cooperative and he could only get a good look in one eye.  The one eye looked good he said but the other he got an okay look in but not the best.  We will try again in a while to make sure.  

Charly is still walking, but differently, than she did before and she is not as fast as before.  It crushes your spirit as a parent to see these things happen to your child.  

Many thoughts of "she does not deserve this and why would it happen to her" have crossed our minds.  When I saw the picture of her brain I was amazed that she can do the things she does.  Charly has less than a half of the normal human brain.  On Charly's right side of her brain she has a large cyst...on the scans we've seen...it looks like the only brain tissue is about the size of the outside of an orange peel.  The rest is a huge cyst that occupies the empty space.  

The left side has more brain matter but there is a cyst there as well to occupy the space.  With Brain bleeds, brain matter and blood do not mix.  When they mix the blood always wins and kills brain matter immediately when it comes in contact.  That's why brain bleeds are devastating to anyone.  

I know the power of prayer is real though.  I know that there are tender mercies that are given by our heavenly father.  To our surprise Charly is drinking out a straw again (only a few sips...she relies on her feeding tube for 100% of her nutrition) at least the little juice box straws.  That took almost 2 months to achieve.  

I think sometimes we are tested here on earth to see if even under extreme circumstances would we still worship and have faith in our heavenly father.  Even though it has been very tough to watch Charly go through this, her little victories are reminder that we can never give up hope for this little girl.  

Here's a video of Charly swinging at the park just the other day.  She is truly our miracle!  Thank you for reading and listening to me.  This is good for me to write and put my feelings on paper.  The last 2 nights we have gone to the park as a family and it has been so amazing but hard at the same time.  Charly wants to do so many things but she is still not ready for, like climbing up and going down the slide by herself.  I watch her as she looks at the other kids doing it so easily i can tell sometimes she is a little sad but we do our best to let her do as much as she can by herself.  I know that with more therapy and professional help she get more practice and do better.  

Please help by registering under team Charly Bella for the 7th annual Ride the Brainwave fundraiser that she is a part of.  We would love for you to participate in the 5k, concert, or volunteer.  PLEASE make sure you select TEAM CHARLY BELLA.  Otherwise Charly does not get the credit or receive funds.

Again if you can't be there we can mail your shirt anywhere and we will have someone walking for you there at the event.  If you don't want to do that you can always go the the gofundme page as well.  Thank you so much for your thoughts and prayers.

~John, Charly's Dad.

Breaking the Silence.

This blog has been silent for a long time.  Does it mean that our little Charly Bell no longer has special needs or challenges?  I wish that was the  reason for the silence, but unfortunately it is not.  The silence has been there for many reasons but Charly's constant battle to thrive is not one of them.

  Don't mistake the silence for loss of hope or lack of progress because there have been successes.  Many challenges that surround Charly are not hers alone.  Our family has many struggles of their own and it affects Charly's care.  Lets start out with me, Charly's Dad.

I have worked 6-7 days a week 10 to 12 hours a day for the last 3 years trying to make ends meet.  I am not complaining, and in all honesty I am so great full for the opportunity to provide for my family.  Unfortunately, it has negative effects on our family.  Working this much means that I am not home to help as much as I should.  My dear wife, Angie, has really been alone while I am working so much.  Our amazing son, Jaxon, has taken some of that burden but it is not the same when he is only 12 years old!  He needs to enjoy his time as a teenager...I say teenager because he definitely knows everything and talks back with no regard to punishment or reward.  This only makes him normal and it makes the good things even sweeter.  He helps his mom watch Charly and his other sister Addyson.  He does a great job but it is not the same as having Dad around.  

My wonderful wife has had her fair share of trials.  She has been diagnosed with severe arthritis in her back which makes caring for Charly very painful and many times unbearable.  Charly now weighs over 35 lbs and each time she gets into the van to go for a ride, or go to the Dr office, to go up stairs, change her clothes, bathing her or get her in the stroller...is taking it's toll on her physically.  I am not complaining but simply trying to paint the picture for those who may not see or understand raising a child with disabilities.  Charly is doing really well considering the alternative, but lets be honest, she deserves more than we can provide.  She needs more physical therapy,  more braces for her little legs and more feeding therapy.  Charly is so amazing and I know she can do so much more that what she doing right now, but we need help!  

The way the system works now, it will take months to get her the dappo braces she needs for her legs.  The last 2 sets of braces that we have gotten, Charly was pretty much grown out of them before she got them.  She is growing really well and it is a blessing and a curse.  The system takes so long to process and approve and give consent and make payment and so on and so on.  We have learned the insurance and the health care providers are not really there to help but just make sure you stay in the rat race of chasing your tail and they hope you just give up and go without.  Well that is kind of where we were at.  Angie has spent more time on the phone than i would ever want to.  She has been lied to misinformed and misdirected.  It is a good thing she stopped working because it has been a full time job just trying to understand what we owe for our portion of the services.  

I think we had a really bad insurance company before and we have switched and so far they have been so much better to deal with.  Unfortunately, it has not come without a heavy price.  Our previous insurance made it a common practice to pay a provider then 6 months to a year later they would say ooops we over payed so they would take it back from the provider and we would get a bill that we had no idea what for.  Our insurance was good to us the first year we had Charly but then they switched to being managed by united health care who is the worst you could possibly have running the show.  They are known for their shady practices and really their dishonest way of handling things.  We were concerned but was promised by our insurance company that nothing has changed and it would be the same.  We were wrong!!  Even now that we have switched providers they have refused to pay any outstanding billings that were processed after we switched and now surprise surprise they have over payed on everything.  It is like an ex girlfriend or boyfriend who just cant get over it and try to make your moving on impossible (LOL).  Now lets put the cherry on top, the final piece of straw that broke the camel's back, the stumbling block, the final blow to deliver the knock out.  I have been injured at work and have been on limited duty which means limited hours and the last 2 weeks I have not been at work at all due to my surgery 2 weeks ago.  I will be returning to work soon which is good but again on a limited status which means no overtime.  Going 3 months with no overtime takes its toll. 

Our bank account is so pathetic that it depresses me.  We have taken a loan out of my 401K we have tried everything over the last 3 years and we have ended up like this.  Last year we made a pretty good income but there is nothing to show for it.  I have often looked in the mirror and have asked why work so much there is no reward.  My sweet wife has to remind me to look beyond the mirror and look at our children's faces and see what it was for.  Jaxon is growing into a fine young man and I could not ask for anything more than who he is and who he wants to be.  Charly is so smart and knows so much.  Her name of Charly Bella seems to be replaced by the name of Charly Chicken.  It makes us all laugh and Charly just smiles ear to ear when I call her that.  There are good days and bad days and I can tell there are times when she struggles so much or she is so uncomfortable.  It literally rips my heart out of my chest when I see her struggle.  She never quits though and neither can I.  Our little trouble maker Addyson brightens every day with her energy and desire to explore.  

Now that you have taken the journey through our lives I would hope that you would feel the desire to help.  We have been contacted by a  group who helps families like ours.  They are having a huge event and they have chosen Charly as one of their kids to sponsor.  We need your help and the great thing about this event is that it will not only help Charly but it will help over 50 other kids as well.  The event could not be called anything more suiting for the cause.  It is the Ride the Brainwave.  It is a 5k run/walk along with a motor bike rally with a kids fair to follow and an awesome concert to cap it off.  Royal Bliss has truly earned my highest mark in the area of giving back.  They have played for so many charity events especially those that deal with helping kids.  I had the privilege of watching the lead singer perform solo at another event that helped the NICU at the Murray IMC and he was amazing.  We got our pictures taken with him and it was truly an honor to meet that man.  I am going to wrap this up now and if you are still reading thank you so much for the taking the time to find out more about our experiences.  

If you want to sign up for the event go to the Children and the Earth website to register.  It is important that you sign up under team TEAM CHARLY BELLA.  If you cant walk or participate please still register and pay, and we will find someone to walk in your place.  How it works for us is that each person who registers a portion automatically goes into Charly's fund.  The rest goes into the middle to cover any costs associated with the event such as t shirts and equipment rentals.  If you look at the website the stage looks pretty legit for a great concert and I am sure it is not free but a great deal.  So the money raised that goes into the middle after expenses are paid, is divided into every ones account based on participation. That means that the more people who are for Charly the more she will get back.  The great thing about this organization is that they are have a non profit status so everything is tax deductible for you, and the funds are not given back in cash but it is given back as we submit expenses that Charly has.  There is no expiration on it and we do not have to get approval to get the help she needs.  We can hire people to come into our home without limitations or red tape from the insurance companies.  It is truly an answer to our prayers so far and offers hope for getting the help that Charly needs.  We know that so many have already helped and we are hoping to expand this to everyone regardless if they know Charly or not.  It does not matter if you are here in the United States or Germany.  We want to be global so please share this with friends and family and help make this thing as successful as possible.  Thank you so much and may your lives be touched or inspired by our little miracle that has given faith and belief that miracles do happen and they have not ceased to exist. 

Go to Children of the Earth and register for TEAM CHARLY BELLA.

If you would prefer to donate directly to Charly instead...a good friend has set up a gofundme page for our family.  We will also add the gofundme page to the donation tab on the main page of our blog.  Thank you all for the friendship, love and support over these last few years.  Your encouragement means more than you know.  Thank you for understanding our situation.  If you are unable to help with donations...all we ask is for prayers in our behalf. 

Thank you for all that you do for us, Love...The White Family.

We are BACK!

After a very long year and a half...and many changes in our family...I'm finally back to BLOGGING!  I will have updates posted soon!  

Charly is doing FABULOUS!  Here she is in her new wheels for her first day of pre-school.  She is learning to walk by herself and can do great going short distances and walking around the house!

I have a lot of back posting to do...so be patient with me.  Also we are all doing fine.  BUT...please keep our family in your thoughts and prayers.  We sure need them right now (more info coming soon).

Much Love!

Addy's Birth Announcement

27 Weeks and Cardiology

I've made it 27 weeks! It's exciting and nerve wracking at the same time.  I'm having some pretty serious anxiety about the possibility of going into labor any time, any day.  So far, no contractions, and according to Dr E..my cervix "is a champ".  I'm starting to have lots of problems sleeping.  Lots of pain in my legs, and it's hard finding ways to relax since baths are not an option.  I've also been having pretty MASSIVE migraines.  I've never had them like this before.  My MFM (Maternal Fetal Medicine) Dr is sending me for all sorts of tests to find out why.  This week I had to see a cardiologist for a few tests. 

 

Here I am wearing a Holster Monitor (it records heart activity).  I had to wear it for 24 hours, and by the end of the test...my skin was so irritated from the tape...I was revealed to finally have that test done.  The results came in pretty quickly...and seems like my ticker is doing fine.  So..on to more tests.  There is a small possibility that my migraines are being caused by the Progesterone Injections I've been getting on a weekly basis...so that also might be the cause.

I'm starting to get pretty huge.  I'm uncomfortable, but loving my big round belly!  This is something I missed severely after having Charly so early, so I'm trying to enjoy having a large figure.  I've gained 25lbs so far, and am feeling it.  I'm still on modified bed-rest and not allowed to exercise or stand more than 5 minutes due to my incompetent cervix/cerclage. I was really sick when this picture was taken, but I figured I would post it anyway for documentation purposes. Morning sickness...24 hour sickness is more like it.

Charly is enjoying her "feeding therapy" session today.  She is learning to lick and like CHOCOLATE!  The poor Chocolate Bunny was attacked by Charly!

20 Months Old!

Charly is now:  Rolling, moving, shaking, dancing...and piggy tales!
Words: mama, dada, buba (Jaxon), gaga (grandma), papa (grandpa) Alli, mimi, kk, manda, jadun (jason), baby (lexi), ack (zack), up, out, no, stinky, pee pee, poopy, moo, meow, ooh ooh (for monkey), rar (lion), yum yum, tickle tickle, book (or booka booka), peekcumb (peek a boo)...and can mimic many other words if asked to say them, such as bird, or apple.

She is such a good sleeper.  She's sleeping through the night, and usually 10 hours or so each time!  It helps me immensely!  We've put her Physical Therapy on hold for a while because I'm just too sick to handle it, but she is wanting to MOVE!


Keep growing Charly!  Keep going!

23 Weeks...

I'm not very good at taking pictures of myself, let alone belly shots in the bathroom..but at least I'm trying.  It's fun seeing my progress.  I NEVER took any pictures of me pregnant with Charly, and I have very few pictures of myself when I was pregnant with Jaxon, so I'm just having fun with it. 

I've made it 23 weeks!  Only a few days away from the time that I delivered Charly.  I think about it ALL THE TIME, but I try not to.  I know this pregnancy will be different.  I'm taking ALL of the precautions and I can feel a huge difference.  Right now my body is definitely not my own.  I look HUGE in this picture.  Mostly because of the style of the shirt, but I have started to pack on the pounds.  Sitting around doing much of nothing sure makes my body feel different.  I wore this same shirt when I was 24 weeks with Charly.  Mind you I was about 20lbs thinner, but I had co-workers that didn't even know I was pregnant when I delivered her!  Here...you can see the belly!

I'm doing a little better this week.  Still tired.  Still sick, but doing OK.  I can't believe it's March already.  The weather is starting to get a little nicer and I'm feeling the excitement of summer coming. 

Charly is still spending a lot of time at the LLoyds, and is having a blast.  I think she's getting used to Mommy being sick.  Allison tried putting Charly in piggy tails and her hair was long enough to try!  She looks so cute.  She always comes home with her hair styled, and her toes painted.  She LOVES IT.  She's growing fast and sitting up so good all by herself!  I have a feeling it's not going to be long before she starts scooting around.  She is even starting to use her left hand a little bit more...it's not in a fist all the time.

 

 

21 Weeks and a Fussy Mussy Charly

 

I had a slight breakdown at Walmart last night.  I'm starting to feel a little overwhelmed by everything that's happening.  Pregnancy sickness has been so hard.  I'm starting to feel the isolation from keeping Charly indoors all Winter and away from the sickies, and I'm starting to get a little lonely.  It doesn't help that I feel sick nearly 100% of the time.  Charly has also been pretty fussy.  I think she's getting a little sad that her Mommy doesn't play with her as much, and I sure am not as animated as I used to be.  I have spent many nights already...just laying on the floor next to her...so sick...and trying hard just to lift my head off the floor to hand her another toy.  Today she has been unusually fussy.  I'm not exactly sure why.  I think she's extra tired, and she's getting her Molars?

I saw Dr E today....finally! So far everything is looking good. The ultrasound tech remeasured the baby and so far so good. She's looking good, measuring good and her heartbeat was 157. I had a long talk with the Dr about my anxiety. He listened to my heart and gave me info to watch for...
John was a good sport and stayed awake the whole time...despite the dark relaxing mood of the ultrasound room.  I've spent a lot of time already on partial bed-rest and my nerves are starting to get the better of me.  I have good days and bad days.  The bad days are worse when I have morning sickness.  I've also started to get migraines.  I'm so thrilled to be pregnant now, and I am so thankful for my family and friends that help so much. John took me out on a date this week, and we had a great time getting out of the house.  I figured sitting in the movie theater was just as relaxing as sitting around at home, and I got to spend a little time with my sweetie.  On the way home we stopped at Harmon's.  John had to run into the store to get something and I INSISTED that we park in the "Expectant Mother's Parking".  Although I'm only 21 weeks and barely showing...I really, really missed out on parking in this spot when I had Charly so early.  So...here I am!  John even tried to take a quick picture (he's not the best with pics, but I still love you dear).

Charly's Vacation to Lloyd-Land

I'm SUPER lucky to have a few friends helping out with Charly.  Megan (who's been in the blog before here) has been helping since the first week Charly came home.  Meg is a CNA and working towards getting into the nursing program.  Charly LOVES her.  She always has.  Meg is affectionately known as "mimi" to Charly.  Charly can say her name and everything.  Kristen has also been a HUGE help coming over to help me with Charly a few times.  She calls Kristen "KK".  Charly can say all the names of the Lloyd family!  It's so cute!  My friend Allison (is Meg's mom) has been on this journey with us since Charly was born.  She came to the hospital the day she came so early.  It's neat to have friends that have been able to see how far Charly has come and truly what a miracle she is!

The Lloyds have always been so helpful with us...taking care of Charly.

Left to right with Charly's version of their names: Meg (Mimi), Allison (Alli or "mom" in the back), Jason (JJ), Amanda (Manda), Lexi (Lou Lou), Zac (Ack, in front left), and Kristen (KK).

They sit by us at church (when and if we ever dare to take her...so many germs), and are always offering help and kindness to our family.  

Lexi, Charly & Meg...Charly's giving Meg a kiss for her birthday!

Lexi, Charly, Kristen & Amanda behind the flowers

Lately, I've been sick, and a little down in the dumps.  Poor Charly has been a little bored with me.  Allison volunteered to take Charly to their house for several hours (for a few days each night!), and it's been WONDERFUL.  Charly is learning new things, and I'm sure she's winning their hearts as much as they are winning hers.  She comes home each time doing something new, saying a new word, and feeling LOVED!  Jason even said something on facebook like "being in the presence of Charly Bella...is like being in the presence of Angels".  SUPER CUTE!  She LOVES her LLoyds!

Charly playing "dress up" with the Lloyd's, Meg on the left.

Meg, Allison & Kristen all know how to hook up Charly's feeding tube.  That is so nice and reassuring in the even that we have some sort of an emergency.  It's also super neat...that I've been able to have help with Charly a few times that I've been sick and needed rest, or even just to take a quick date with John somewhere close.  It's so hard to leave a regular baby with somebody...let alone one that has special needs...and the Lloyds (along with a few others like Family and Jen) have enabled us to get out and feel "normal".

Meg, Andrea (Andrea is not a Lloyd, but pretty much a Lloyd...lol ), and Charly Bella

This last week was Megans 20th birthday, and Charly decided that she wanted to go to the party.  She HAD A BLAST!

I thought after that night that I was experiencing a miracle...when I tried sitting Charly up by herself (like I do several times most days...but she falls over), and SHE STAYED SITTING UP...ALL BY HERSELF!

Lexi and Charly sitting up reading Seventeen Magazine...lol.  Super Cute!

I immediately text Allison to tell her, and her response was something like this "yes, we know...we have all been practicing with her!".  LOL!  Charly is getting some good therapy at the Lloyds!

THANK YOU LLOYD FAMILY for all that you do for us, and for all the LOVE you give CHARLY BELLA!

Sitting...ALL BY MYSELF!!!

Charly...our little 24 weeker (born 16 weeks premature) just sat all by herself with NO assistance for 30 seconds! This is a HUGE accomplishment for her! She has Cerebral Palsy, but that's not stopping her from showing us she CAN do this!

 Keep up the MIRACLES Charly!!

Happy Valentines Day!

Will You Be My Valentine?

A New Fashion Statement

Charly has a new fashion statement. She prefers the box to bows right now...lol.

19 Weeks...and NOT counting!

19 Weeks and SUPER SICK today!

So far so good.  We've made it 19 weeks...and we are NOT starting to COUNT!  I really want to make it to my goal delivery date of 36 weeks.  These next few months are going to be very scary and critical to us!

I've been having a really rough go with morning sickness, and I wake up each week thinking "this week I will feel much better," and then I don't.  I am taking solace in the fact that the "wives tale" says the sicker you are in pregnancy...the healthier the baby.  Well, something of that nature.  My poor family is dealing with my horrid gag reflex.  Sometimes It's so bad I can't lift my head up off the sofa.  Jaxon has decided he would rather change Charly's messy diaper...than watch me gag and get sick while doing it (although, he has yet to change a stinky one...lol).

I started my progesterone injections last week.  They aren't so bad.  The needle is really long and scary looking, but I just don't look.  I'm going in to see Dr. E every week anyway, so I haven't had to "learn" how to give myself the injections...which is a bonus right now - being so sick and all.  

I had an ultrasound this week too.  The baby looks good.  They couldn't see her spine very well so I will need to go back to have it repeated, but everything else looked great.  I had SO MUCH anxiety during the ultrasound.  I know for sure...that I have Post Traumatic Stress Disorder (PTSD) from Charly's early delivery, and my 5 month NICU stay with her.  I think Primary Childrens gave it to me the worst.  I found myself counting things off in the ultrasound.  Does she have 4 chambers of the heart, can we see her ventricles, does she have a stomach, etc, etc... I know for a fact that I would have never thought about any of these things if I didn't gain some experience from other babies and their developmental deformities I was exposed to at Primary's.  As I laid there...I started having flashbacks of babies and their medical problems...not just the ones that I was familiar with that Charly had.  I can't even begin to describe the anxiety in my heart, head, and body.

Charly celebrating the Superbowl! (Dr. Pepper used for a Pork Recipe you sillies!)

'Today was the Super-bowl.  I didn't feel all that great, and wow, I feel like I've become a horrible mom.  I've tried so much to do everything that I possibly can to keep Charly busy, but some days are just not the best.  She's starting to get annoyed with my laying next to her chair on the floor.  She looks at me like "why aren't you picking me up or playing with me". 

Poor Jaxon has been helping me more than I know he should.  He has been SO GOOD.  He picks Charly up and holds her when she calls him, and Charly is starting to call Jaxon "buba" more than she calls "mama".  In fact...the other night Charly woke up in the middle of the night.  I went in to check on her and she looked at me like "who are you?"  She immediately started crying and calling "buba".  Jaxon woke up and came into her room and held her...and PUT HER BACK TO SLEEP...in the middle of the night!  What an AWESOME kid!  I sure love my Jaxon!

Despite feeling SUPER sick and eating mainly a diet of carbs, (yes, that would be like 6-8 pieces of bread per day, crackers, tortilla's etc, etc...it's horrible - but I am keeping down my vitamins!) John has been cooking up a STORM.  I'm so lucky that he's such a good cook.  He makes me pretty much anything that sounds good at the time!  This week...it was coconut shrimp...

And pressed shrimp sushi.  I've already started gaining weight...so that's a bit depressing, but I'm doing the best that I can feeling so sick and trying to keep my body with the calories it needs for the baby.  I am already planning my VERY INTENSIVE weight loss regiment after the baby comes.  So, for now I'm indulging when I feel good enough.  It is taking a bit of emotional toll on me...I gotta say.  But, I really will do anything to get this baby here fat and healthy.

Charly is getting more teeth.  She sure doesn't like teething, and I sure don't like it either.  Last night I gave up and put her in my bed in the middle of the night.  She wore herself out by playing with my box of tissues.

A Car For Callen...

This is little Charly Bella's first boyfriend from the NICU! His family has had lots of challenges to overcome too...and are in desperate need of a car. Please read and consider helping. And please SHARE! :)

A Car For Callen

Pregnancy after a Micro-Preemie: 18 weeks

18 Weeks - I'm already bigger than I was when I had Charly at 24 weeks!
I'm not thrilled with this picture...John really wanted me to "pose" for this one...and I felt silly.
But...I didn't take any "tummy" pictures with Jaxon or Charly...so this is new for me!

Well, we've made it this far.  It's such a relief that everyone knows our exciting news.  We found out before Halloween and it's been hard to keep quiet, and not share the news.  At the same time...it's been very scary.

Having a baby after a micro-preemie is a very unique experience.  We know we have a lot of statistics stacked against us (30-40% chance of pre-term delivery), and we are taking every possible precaution.  I'm seeing an awesome Maternal Fetal Medicine specialist and I know that we are in good hands.  On top of the statistics...I will need to have a mandatory c-section at 36 weeks due to the type of c-section that I had when I had Charly.  So...another baby that is coming at least 4 weeks.  

At 14 weeks (around Christmas time) I had a cerclage placed.  Because we don't know "exactly" why Charly Bella came at 24 weeks...the best guess is that my cervix thinned and my water broke.  It wasn't the funnest surgery I've ever had (hey, who said surgery was fun anyway), but it sure helps give me peace of mind that we are considering everything in order to keep this little miracle inside as long as possible!

I am pretty much on moderate bed-rest.  Which means...I can do normal household duties with NO lifting, and NO exercise.  I go in weekly or bi-weekly depending on how I'm doing to get checked and meet with the Doc.  So far so good.

I've spent many nights with anxiety over having this little one.  She wasn't "planned" so it took us by surprise in so many ways.  We really do feel that we are being blessed by Heavenly Fathers will and that this baby...just like Charly has a purpose.  I've been suffering from morning sickness since about 5 or 6 weeks.  It hit really early on.  With Jaxon it didn't hit until 9 weeks, and with Charly it didn't hit until about 8 weeks.  This one hit hard and I've felt pretty miserable since.  I have a gag reflex that just won't stop.  Some days I feel like I can't lift my head off the pillow because gagging 200x just takes everything ounce of energy that I've got.  I console myself with the reminder of how I felt after I had Charly.  I wanted to have a big uncomfortable belly so bad.  I would have traded a thousand sick morning sickness days than to watch her struggle and suffer...so if sickness means that I have a chance at a healthy baby...then bring it on.

I also try and stay positive about the outcome.  Some days it's hard and I relive moments and fears of Charly's early delivery.  I also fear for my own safety much more during this pregnancy.  I have two other kids who rely on my and I want to stay healthy and be able to take care of my family.  I have much more of a "pregnancy reality" than I have ever had before.

I'm thankful for John, my Mom, and for my friends and family who keep supporting me and helping me through this.  Jaxon has been one of my biggest helpers with all of this.  He is such a WONDERFUL big brother, and I know that this little baby inside my tummy is one lucky little lady because she gets to have Jaxon and Charly as her brother and sister.  

I'm just being careful and trying to do my best.  I start progesterone injections this week...so I hope those go alright.  One more step in the process of strengthening my body to handle this pregnancy.  

I am thankful for this experience as hard as it may be and I relish these moments of my last pregnancy.

Charly's Gonna Have A Little...

SISTER!

Guess What?

That's RIGHT...Charly's HAIR...SAYS IT ALL!

Poor Jaxon...Overworked by one little sister already!

John & I are VERY SURPRISED TOO!

MIRACLE #3 IS ON THE WAY!

18 Months Old!

I can't believe that Charly is 18 months old today!  It's gone by really fast, and VERY slow at the same time.  We've learned so much from her and have been so inspired by her strength and abilities.  She still has a lot of challenges, but WOW, WHAT A MIRACLE.  I keep thinking back to the day we had her...when we were told she was really more like a "23 weeker" and that "she is not expected to live the night".  I count my blessings every day that I have little Charly in my life!

Here are her current 18 Month stats:

* Charly is sleeping through the NIGHT! Yeah!  She sleeps sometimes up to 10 hours and no longer takes melatonin.  She sure is a cute LITTLE ZEBRA when she's sleeping!

*Feeding: Charly is OFF her continuous night feedings! YEAH! ALLELUIA, HAVE MERCY!  I no longer need to wake up every 3 or 4 hours to fill the formula in her feeding tube pump.  I still wake up quite a bit these days...but that's another story.  Right now Charly eats 5 times a day (usually 9, 12, 3, 6, and 9) and is taking nearly 8 oz each feeding of regular Similac Advanced formula (we are off the Neosure...another Yeah!  She runs on her g-tube Joey Pump at 230 ml per hour and gets 230ml...or approx 8 oz).  Her little tummy is growing up!

*Feeding Therapy:  Charly still gets 100% of her nutrition via her gtube.  She is learning to sip from a sippy cup, and can take very small bites of some types of foods (very soft foods, breads, soups, etc).  Really she can only tolerate chewing a tiny piece of bread about the size of your small pinky finger.  She has been working though.  She likes to eat food off of a fork, but not a spoon.  She likes freeze dried yogurt bites, but won't eat the real stuff to save her life, and she now HATES spoons.  Poor kid.  She really just has her dads taste buds and wants to eat small bites of Cheetos puffs, easy cheese or lick the chili off of his chili dog...lol.  

*Occupational and Physical Therapy: We had to put her therapy on hold for a few weeks.  Charly just screams every time her therapist comes.  We all just couldn't take it anymore and so we gave her a break.  In the next few months her therapy will be picking up more aggressively, and we will be working more with Primary Children's Pediatric Rehab.  Charly was diagnosed with Cerebral Palsy, but we need Primary's to diagnose the "type" and "severity".  Once we have that information...we can really start giving her what she needs.  And we love our Early Intervention Therapist and all of the idea's and help that she offers Charly too.  Aside from therapy...Charly is MOVING more.  She can now roll from one end of the room to the other...going back and forth rolling on each side.  Her left arm is still pretty limited and she won't use it much, but she has gotten the "rolling" down.  She also LOVES to be in her jumparoo.  That poor thing has seen better days.  She likes to jump, swing, and turn herself around in it.  

* Charly is saying more words.  She can say the following: "buh-buh (Jaxon or brother), mama, dada, booka booka (she loves books), mimi (her friend Megan), Kaykay (her friend Kristen), gaga (grandma), yum, yum (means I want a drink from my sippy cup, or she says it when I'm hooking up her feeding tube), and a few others I can't think of at the moment.  She really is a smart little kiddo.

* Charly's favorite people in our house are in this order (and I'm not kidding): Buh-Buh (Jaxon - She says his name probably 200x a day when he is at school.  She watches and looks frustrated that he isn't walking in the door when she says his name.  He is the ONLY person that Charly smiles when she says his name...whether he is there or not at the time...it's so cute), Da-da (she is her daddy's girl), and last but not least Ma-ma...or me.  I wouldn't have it any other way.  Charly sure has these boys in the house wrapped around her little finger!

At Charly's 18 month appointment...things went pretty well.  She is growing along the curve, but is slightly underweight.  Here are her 18 month stats:

Our little Monkey has gone from 1.4lbs to 18.7!

Weight in pounds..is following the chart, but only at 5th percentile.

Length in inches...10th percentile.

Poor little Hydrocephalus head is already at the 50th percentile.  

But she sure does have a CUTE head!

Charly is SO MUCH FUN!  She Loves to be the center of attention.  And some days no matter how hard I try to give her the Donald Trump "comb over"...her hair still stands up (I helped it a bit in this picture of course).

Happy 18 Months Charly!

Tracy's Story

What you are about to read is Tracy's Story. 

It is worth reading from TOP to BOTTOM.  Please grab a Kleenex with me.  Here goes:

"The first time I saw Charly Bella’s blog I fell in love with her and her family. Sometimes I think we go through hard times to have our hearts softened so we can be there for others. You see I have been in that situation with a baby you love more than life itself, hoping, and praying for a miracle. I’ve been there four times hoping against all odds my babies would make it.

I married my high school sweetheart; he was and continues to be my prince charming.

We found out we were expecting a few years after we were married. We made it past the 12 week worry of miscarrying and just though we were home free. We began buying and decorating for our new baby. The thought of anything bad happening had never crossed my mind...up until this point in life I had lived a very “normal” life. 

At 20 weeks we found out we were expecting a baby boy! We couldn’t have been happier…. But just a few short weeks later at a routine doctor’s visit our dreams were shattered. They could not detect a heartbeat and a few moments later an ultra sound confirmed it our little boy lay there lifeless inside of me. They induced labor and about 24 hours later I gave birth to a beautiful boy, ten toes, ten fingers, and a little bit of blonde hair that curled around his neck. 

My doctor at the time said he didn’t see anything concerning that this is just “something that happens” and “every women loses at least one baby”. Young and new to this world I took his words as fact. It turns out there were so many women out there who had lost a babies too, way more than I realized. I went into a severe depression; the whole world seemed to have changed. I didn’t want to get out of bed in the morning. Our lives became a little obsessed with death we visited a lot of cemeteries and would read all the headstones of little lives lost. We buried our baby in a nearby cemetery in an unmarked grave.

A few years later we became pregnant again. It wasn’t planned but we were happy. I was so scared to get past that dreadful 24 week mark that we lost our last little guy. Every doctor’s appointment my heart would race and then almost stop completely as I laid in silence waiting to hear that heartbeat. The doctor ran a few routine blood tests and things seemed normal. He assured me it was going to be ok this time. It appeared to be a text book pregnancy. Not realizing I was high risk I continued to see a family practitioner, only one ultra sound at 20 weeks…. Again a beautiful, healthy boy. Everything looked perfect. 

I didn’t dare buy anything for him yet, I didn’t think I could handle the pain of putting it all away again. I was extra tired, but what pregnant women aren’t right? I thought I was just a bad pregnant person and I told myself “buck up push thru”. I changed jobs this pregnancy to have one with less stress where I could rest a lot throughout the day. A baby clothing store.  I would look at things and get too scared to get excited of having a baby to actually take home. 24 weeks came and went and the baby was doing great! It was the Holiday season and Christmas came and went as well. 

The night of December 29^th we had spent the night at my mother in laws house. I hadn’t felt the baby move a lot through the night and was scared… was it happening again? Early on December 30^th I had a strong pain right below my ribs and called my doctor. He was out for the holidays but they instructed us to go the the emergency room. They assured me I was just paranoid but better safe than sorry. I was so thankful when we got to the ER and they found that little heart beat right away. I thought we were in the clear. But within moments the room was racing with doctors and they all looked scared….some of the other tests were coming back and things weren’t good.

My husband looked scared and asked the Doctor  “my wife, shes gonna be ok right?” The doctor kind of just shook his head and said “on a scale of 1-10, 1 being dead, your wife is a 2” . I saw the tears in his eyes and was shaking with fear. They had called for life flight to come get the baby. I remember watching my legs shake as they put a catheter in. Scared to death we had not had time to call family. I asked my husband to call my mom. In the meantime his mom had called to check on us and the hospital told her they couldn’t give info over the phone but she should just get there. They asked if I would rather be awake or asleep for the birth. I said “if I’m going to die I would like to stay awake as long as possible” The doctor nodded and said he would keep me awake as long as possible. 

Our little boy was born on December 30^th. I was 32 weeks gestation. Our baby suffered from severe growth retardation and weighed only 2lbs 1 oz. He was taken by life flight to a hospital in Provo my husband left with him. I was still unstable and stayed in our local hospital. It was the millennium and our family was apart….But our “Trey” was alive and his prognosis looked good. On January 2^nd 2000 I was allowed to make the trip to Provo to be with my baby. I was pumping milk but he couldn’t have it yet. His numbers didn’t look good his white cell count was very low and our little guy was struggling. I didn’t wanna leave his side but on the morning of January 3^rd we left for shift change and walked across the street to the Ronald McDonald house to brush our teeth and freshen up when we got the call. 

“Mrs Jarman? Your son isn't doing good…" I’m not sure what all was said but he urged us to come back to the room. We walked in just as they were resuscitating our son. He was breathing but the doctors felt he was brain dead and we made the choice to allow them to stop life support. 

They removed his tubes and handed him to us.  He died in my arms in just a short time.

Greif counselors made molds of his little hands and feet and took pictures of us with our son…. Pictures I can’t look at to this day. We were able to dress our little man for his casket, I wanted him to wear little socks on his little feet. We had a small service for him later that week. He remains forever in our hearts.

This took such an emotional toll on us. The doctor on call that day took a lot of interest in me and sent the placenta off for testing. He told me this was not normal and should not keep happening. He consulted with specialists around the state and asked me to come in for testing. The test they ran they didn’t even know how to in the lab and had to look it up first. 

The doctor recommended me not getting pregnant again.. Possibly ever. 

A short time later he called me at home I had tested positive for antiphospholipid syndrome. He told me to stop taking my birth control immediately as it could be fatal to me…but again highly recommended I not get pregnant. I began studying a lot about this disease and found many stories where women had healthy babies with treatment. There was hope...but the pain was fresh. 

The thought of having to bury another baby was unbearable. So I became a workaholic and tried to hide my pain and cried almost daily for the babies I lost, what could have been and the desire to have a baby.

On a beach in Hawaii in March 2008 I told my husband in tears that I wasn’t happy and didn’t think I would ever fill fulfilled without children. I wanted to try one more time for a biological child. He agreed and said “who knows we could even have one before the end of this year” . That’s not even possible I told him. We laughed but were scared and excited to finally face our fears and go again. 

We never really “tried” to get pregnant but in early July 2008 we were expecting. We immediately saw a doctor who immediately put us in touch with a maternal fetal medicine team at St Marks hospital in Salt Lake City. It was a bit disappointing when the doctors told us it was up to God to get it to 20 weeks and they would do their best to help me after that. 

My local doctor was amazing RIP Dr. Thomas. He saw me weekly to assure me that me and baby were doing fine. Monitoring everything closely! I received two shots a day of blood thinners in my stomach, took extra folic acid. Had blood tests weekly and monthly. Everything was going ok. At 20 weeks we returned to St Marks. The 20 week ultra sound looked good… It was a girl! Which was good news cause little girls are stronger we were told. But at 24 weeks things weren’t looking so good. The blood flow through the placenta was restricted. Again it was the holiday season. Thanksgiving weekend, they sent me home asking me back in 4 days instructed to plan on not going home. And sure enough on December 5^th we were hospitalized. 

The NICU doctor immediately visited and told us all the roads we were facing with a baby that delivers at 24 weeks. They expected me to deliver in the next few days. We proved them wrong! I cried everyday and was so scared. But our little angel held strong. We lived in labor and delivery at St Marks hospital for the next 4 weeks. The doctors were not sure if or when but knew our daughter would have to be taken out to save her life and mine at any given moment. But wanted to leave her inside as long as possible. We were able to have steroids for her lungs when I was 24 weeks pregnant. Her little heart rate would drop to almost a stop on the monitor and we would panic but doctors assured us she would let us know when it was time to get her out. 

On the night of Decemeber 27^th her little heart rate drops became more often and she had one that took over 5 minutes to recover...It was time. She was born at 9:09am December 28, 2008. Weighing only 2lbs 2oz. She was 29 weeks gestation.

We were warned of all the problems she would be facing we didn’t care we just wanted her to live! Having spent many days in the hospital room together my husband and I had a lot of time to talk and we decided this was too hard we couldn’t keep going through this and live or die this was our last attempt at a biological child. 

We decided to have my tubes tied. My doctor warned me of its permanence and we decided we were done. Our little miracle Brinlee Lapriel was a fighter from the get go. She was off the ventilator in just 14 hours. We lived the NICU rollercoaster for nearly two months. But on February 12, 2009 we brought home our little 4lb baby girl. What a miracle! I was pinching myself! Thankful for our little angel!

I can’t even explain what a relief it was to be done with the pregnant, baby rollercoaster. I was happy and complete. When Brinlee was about 11 months old I started having dreams of this little boy. I told my husband “someone in our life is having a boy”. To our surprise it was us! When Brinlee was just a year old we found out we were expecting…tubes tied and all!

Again we had immediate medical intervention. Two shots a day in my stomach, lots of pills and monitoring. There was something different this time I believed it could happen.. I believed we deserved to be happy! And I had seen it happen before. Much to the disbelief of doctors and myself my body cooperated fully this time and the baby grew normally and we were able to carry him to 37 weeks. Us along with a team of doctors just waiting for the inevitable decided to take the baby early to avoid the possible dangers that had happened three times before.

After three babies, I finally got to have one in a happy setting. My husband by my side Oaklee Raines was delivered at 4:13 on September 29, 2010. He was wrapped in a blanket and we were able to hold him and everything. I felt like I was living a dream! Shortly after birth our little man was having troubles breathing and was rushed off. I panicked and cried all those feeling you thought had gone away were there again. How can I be here with a baby in the NICU again?? As it turns out by taking Oaklee early by c-section he was unable to push the gunk out of his lungs and had a lung infection. Luckily he was only there 10 days and we were able to bring him home.

Now with a two year old and a almost 4 year old...healthy kids, not a day goes by I don’t thank the Lord for my beautiful babies! 

I feel unbelievably blessed every day of my life.

Those feelings are still there though.. 

When I read Charly Bellas blog for the first time, my heart broke for that family and their long journey ahead. I too was there when I just wanted her to live. God is good and miracles happen! Our beautiful Charly Bella is proof of that. God Bless her and her amazing family!"