Terrible 1 1/2's ??

Well the day has come when my perfect little angel has become that kid. The kid you hear screaming at the store lol the one you think to yourself thank goodness that's not my child. Well don't worry that screaming kid in the store is mine. We've entered the almost terrible twos maybe its the 1 1/2 year old crisis what ever it is Cole has lost his marbles he is a ball of emotions that is bouncing from wall to wall while screaming at the top of his lungs. I am looking forward to 3 because well let's be honest who likes the terrible twos and what ever else Cole is acting like these days. Still love my boy he is growing into his own little person moody and full of spunk. 

    He doesn't want to listen to my music so he plugs His ears. LOL this child of mine. 

Little Brother Cole

Today is a bittersweet day. All who know me know I love being pregnant and having babies. That moment when they turn on all the lights in the birthing room and you feel the lights warmth and see the fuzz rise as they get the blankets ready. The over coming of every emotion possible when your baby is first welcomed into this world.  The smell of sweet newborn breath, the new baby smell that you just cant get enough and wish you could bottle that smell because it doesn't last long the feel of their soft hair on your lips or cheek and most of all the walking on clouds for the first few weeks of your little ones new life. I've got to experience all of those glorious moments 6 times, 6 amazing times.  I will miss those moments but the memories will be forever embedded in my mind. After tons of deliberation it was decided that Cole would be our last baby. With that decision lots of fears surfaced, what if we lose his to this CHD monster. Really all those what if's are just that. Tonight as I look at him playing in his carseat as we waited in the car it all made sense no other baby could ever replace Cole ever. The way he is totally obsessed with frozen is a little crazy I gotta admit but it's his thing and I wouldn't take him any other way broken heart and all. I know I am making the right choice in getting this done. It doesn't hurt to always be excited of all the grandkids I will have some day either ;-)

Cole you are my baby and always be your siblings little brother I think that is a special thing for a special little guy.  

                  

                                               Cole loves bath time with his big brothers 

Video of Total Anomalous Pulmonary Venous Return

 Spreading awareness of Congenital Heart Defects !!!!

I want to show you what TAPVR looks like. I found the perfect video on YouTube please click to watch.

Insurance is a Joke!!!!! Thank you to employers that mess with your employees like this !!!

BIG RANT  so move along if you don't like what I have to say. Keep your negitive comments to yourself if you have anything rude to say about my post.

 Cole will not be seeing the Speech Pathologist right now till I figure how to pay for the visit. $500 is due for each appointment till his $4000.00 deductible is met, which they will take payments for but still. Why do I have insurance it's just some discount and why is it I am living paycheck to paycheck but don't qualify for jack squat. Affordable health care don't get me started with that. If my Husband goes to get a better job with a friend he knows it would be amazing financially for our family BUT the job has no health care offered. No biggie I will apply for affordable health care UMMMM $1000.00 a month to cover our family how is that affordable?????

I am at a loss of what to do. I just had to cancel the appointment for Cole what a sad world we live in my baby needs help but can't get it because I can't pay the deductible!!!!!



F-U employers that mess with your employees like this !!! Because of my husbands company our deductibles and insurance coverage has changed to save the company money.


NICE and F U OBAMA affordable what????? Guess I should have my husband quit his job and then I can go on welfare and milk the system and go to the ER for FREE on the tax payers dollars every time my kid coughs. (I'm really not going to do that just figuratively speaking)


 What's the world coming too? RANT OVER

Speech Pathologist Appointment

 It has been some time since I've gotten a chance to blog. Busy busy summer, we had a great visit from my daughters who live in Georgia. Catching up with family since we have been gone from California for almost 2 years and oh the one kid sick after another. This summer has been a whirl wind of cold flus and more. So here is an update on Cole. 

Cole is now 15 1/2 months old  23.6 pounds and has 7 teeth he can walk and somewhat run. He is very bowlegged but its okay we will fix that. Meals are a bit of a challenge as Cole is lactose intolerant that makes milk pretty pricy depending on who has lactose free vitamin D milk it can run almost $10 a gallon.  Let me tell you this boy can put down some milk. Cole is still drinking from a newborn nipple as anything else chokes him. This is very frustrating and makes me worry every time he drinks or eats certain foods due to the danger of aspiration and choking to death. 

We have the best sippy cups, I've tried it all but the same outcome chokes until he throws up and turns blue. So we will be seeing a speech pathologist on Monday and get Cole the help he needs. Cole also doesn't say many words.  He doesn't say mama :( he tries so hard to talk but just gets frustrated and it makes him so angry. I'm sure the dr will be working on this as well. 

It's almost time for RSV shots this is the time of year I'm sure Cole dislikes monthly shots but its for his own good. November is his Cardiolgy appointment with Dr. Punn at LPCH. I'm excited to see his echo.  We've had less blue and low o2 spells but it still does happen from time to time. Coles skin is still a crazy mess by his scar he just breaks out in random hives these days. Creams washes and more creams, we will find the groove in that soon. 

Cole is a grouchy grizzly bear a lot but I love him to the moon and back. One thing that makes Cole extremely happy and very excited  is the Disney movie Frozen he is totally obsessed with this movie we watch it about umm 3 or more times a day lol he loves Olaf and we love our Colaf. <3

           

365 Days Post-Op

 I am a little late blogging but 365 days can you believe it???

On July 5th 2013, I wish the me today could of talked to the me 365 days ago to let me know everything would work out just how it should. I am so blessed to have my baby healthy and walking yes walking even trying to run.

Cole's Heartiversary celebration was AMAZING !!! I thank each and everyone who attended. My special thanks was to Icing Smiles and my Sugar Angel Jessica who created a special Super Cole Cake and my friend Gia with Sweeties for all the awesome superhero decor she created for Cole. My heart was so happy it was overflowing with love, excitement, and I was so proud of my warrior he ran played laughed it was a great day to say the least. We celebrated in the coolest private play room ever.

I can't wait to see what the future has in store for Cole and I am truly blessed which I can't even say that enough. 365 day's I am still in a haze a whole year has gone by so much has happened and with faith when it was hard Cole is still with me. Little by little I am becoming me and less paranoid with Cole. Not completely gone with worry but it's a lot better.  God is amazing.

Here are some pictures from the party.

My Sugar Angel Jessica

Cole's Dream Cake

Decor by Sweeties

Cole Loved the Cake

Happy Birthday/ Heartday  

Cole the Fireman 

Cole being Serious as Usual 

 My Bow Tie Baby 

Miracle Baby

Cole Really LOVED LOVED his Cake :)

The Day I Became a Heart Mother - Author Unknown

A beautifully written poem I found written by a Heart Mom. 

I just had to share it's to beautiful not too. It explains exactly the way I felt and still feel.

The Day I Became a Heart Mother

One day my world came crashing down,

I'll never be the same.

They told me that my child was sick.

I thought, "am I to blame"?

I don't think I can handle this.

I am really not that strong.

It seemed my heart was breaking.

I have loved him for so long.

I will not give up on this child.

I will listen to your advice.

I will give my child any chance.

No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube.

My child must survive!

Will he need a lot of therapy?

Will he gain the needed weight?

Please God, help me do this.

I will accept our fate.

When the monitors beep at night, it serves as my reminder.

How many parents would love that sound.

Tomorrow I will be kinder.

As another Angel earns his wings,

I run to my child's bed.

I watch him sleep for quite a while.

I bend down and kiss his head.

I cry for the parents whose hearts have been broken.

I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.

My mind says savor each moment he's here,

but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "will he be alright?", to watching him reach out his hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.

I look to them and smile.

You see my child is loved so much.

I would face ANY trial.

That scar I trace with my finger (It's the door to his beautiful heart).

God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.

Now wise beyond her years.

For those who have angels in heaven,

Our hearts share in all of your tears.

Every day I will try and remember,

I was chosen for him (and no other).

I will always embrace that beautiful day.......

When I became a "Heart Mother".

- Author Unknown

The Day I became a Heart Mother 5/17/2013