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

Here in this moment

As I plan out Cole's 1st Birthday/Heart Birthday party I am just amazed at how so much has changed. At this time last year I was not planning a party I was making arrangements for something no parent should ever have to plan.  I lived with my heart in the pit of my stomach 24/7. I can remember holding Cole all day, I don't think I put him down much at all. Cole still has his struggles but we will get to the root of the problem soon enough. I want so bad for all my fears to disappear but for now I will remember I am blessed to be here at this very moment in time with Cole. I cannot wait to celebrate with my Super Cole. My amazing gift received received from God.

Now faith is the substance of things hoped for, the evidence of things not seen~ Hebrews 11:1

Lucile Packard Patient Now

Cole's birthday has gone and past but not with out him getting the flu first.  We are now back in our home town in California and have a new cardiologist at a new hospital Lucile Packard Children's Hospital. We are very excited for this change and love love love our new cardiologist his name is  Dr. Rajesh Punn. Cole's first visit to him was Tuesday 5/20/14 we arrived very early to ensure we didn't miss our appointment.

Cole's echo showed many great things one of which I HAD NO IDEA WAS STILL A PROBLEM. Our new card informed us that from Cole's medical records it states that his ASD was repaired along with the TAPVR but that there was still a residual hole. Nice we thought the hole had been closed I'm wondering why are last card decided that I should not know that my son still had a small hole in his heart. Jan Cole had an echo and the hole in the notes stated that the hole was closing so on Tuesday Dr. Punn confirmed that the hole is completely closed now. You can only imagine how furious I was after finding this out.

Cole's repair is healing beautifully but he is still having his low oxygen spells accompanied with grayish blue skin about twice a week. All the Dr. can think that is causing these spells could be an arrhythmia so Cole was sent home with a halter monitor and a 30 event monitor to record these spells. If in fact this is not heart related we will be referred out to a few more specialists to determine the cause. I am so happy to be getting the medical care we are now that we are at a place where my voice for my son and someone will listen to me. Not to talk bad about past physicians Cole has had but because they had a MD in front of their names they could care less what I had to say to a point. They treated me like a crazy overreacting mom. Well this mom is right something is going on with her sweet boy and Lucile Packard Children's Hospital will be the ones to figure out the cause.




Cole is happy and trying to walk he is growing and we couldn't be happier for the gifts the Lord has  blessed us with. I at one point never thought of Cole walking or getting into mischief yes Cole can be a trouble maker at times and I love it.

The Night of Cole's 1st Birthday @ Stanford's Pediatric Emergency Department

Mr. Cole Waiting Cardiology Appointment 

Happy 1st Birthday My Little Love

My Darling Cole Anthony,

Today is your 1st birthday. I can not even believe how fast this roller coaster of a year has went. I want you to know a few things.

You had my heart from the moment I seen your tiny heart beating on that screen. The Dr. couldn't believe how a 6 week fetus could have such a strong heart beat that would show up on the screen. My biggest fear from day 1 of finding out I was pregnant was to loose you. So when I seen your tiny heart pumping I was over joyed.

I went through lots during my pregnancy with you I was on bed rest for at least 2 months due to being preeclamtic Weekly special injections formulated at a hospital to keep you from being born early along with a special diet from gestational diabetes. I went to the Dr. 2 times a week to be monitored and have ultrasounds of you blood being taken from me. At one point I wasn't even sure if I would get to meet you. I would tell Daddy I was in so much pain that I felt like I was going to die. I would sit and cry and say how much I loved you

The day you were born we had some scares, mommy was admitted as an emergency induction as I developed preeclampsia mommy's blood pressure was very high along with my heart rate 139. My labor went pretty smooth although  your heart rate dipped down very low 2 times and the nurses said it was time to get you out NOW!! At that very time I heard a voice in my left ear whisper I love you I pushed a few times and you were born.

When you came out they laid you on my chest and you looked up at me. Not a cry or whimper from your precious little lips just calmness. You were small 6 lbs. 5oz 17 in long. Daddy and I were in love the moment we laid eyes on you. You looked like a mix between Gavin and Matthew and now Daddy had 3 boys his face was priceless.

 The next day when were getting discharged from the hospital sure didn't go as planed and when the Dr. told me about your special heart my world stopped. I had never been more scared in all of my life of loosing someone I just had met. To think about that day stick makes my heart sink to the pit of my stomach. To watch Daddy completely shut down as we held each other takes my breathe away we both felt so lost words could never begin to explain what we felt the tears alone were enough. We prayed cried and looked at your little face and it eased the pain of the journey we were about to face together.

You will always be my special boy. You amaze me everyday and surpass my every expectation. God hand picked you for me entrusting I would be able to take on this special job of being your mommy. You were born with a broken heart but to me your perfect in every way . Your smile lights up the darkest day and your little laugh brightens my life with each giggle.

You have more determination than I've ever witnessed in such a little guy, you're always striving to do more and prove you are here on this earth to do something great. You're my super hero my angel sent from above the baby I prayed for day and night.
You're my precious boy, my inspiration my strive to not give up and always keep going.

 I thank you for opening my life up to Jesus to become a better person for you daddy and all your siblings. You are the reason I do some many things. I no longer take life for granted and view it oh so preciously.

I can now stop to smell the flowers or watch the beauty in the sky your journey has taught me to know that there are more important things happening in life than the little things we let bother us daily. You've taught me patience when I've wanted to give up the hope that tomorrow will bring a new day and brighter skies. The trust in The Lord that prayers are answered in ways I sometimes don't understand.

  You've been through more in you short time on this earth than most people ever experience in a life time.

 I  want you to always be proud of your scars because they tell your special story that is your journey and no one can ever take that from you. you're such a fighter you continue to fight this disease everyday.

I love you my baby boy my fighter my heart and soul my happy boy with a determined heart.

Happy Birthday my little love

How God Chooses a Heart Mom

I found a beautiful post on Facebook and thought I would share this. I am not sure who wrote it but in touched my heart and brought tears.

 

Did you ever wonder how the mothers of heart babies are chosen?

Somehow, I visualize God hovering the earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

Finally, he passes a name to an angel and smiles. “Give her a heart baby.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God. “Could I give a heart baby a mother who knows no laughter? That would be cruel.”

“But does she have patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.

Once the shock and resentment wear off, she’ll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother.

“You see, the child I am going to give her has a world of his own. She has to make him live in her world, and that’s not going to be easy.”

God then smiled. “This one is perfect. She has just the right amount of selfishness.”

The angel gasps, “Selfishness!” Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says “momma” for the first time, she will be witness to a miracle and know it.

 I will permit her to see clear the things that I see- Ignorance, cruelty, prejudice-and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surly as she is here by my side.

 

Here is my precious gift sent from above Cole Anthony

2 Teeth and Counting

It's official Mr. Cole has 2 bottom teeth. A bittersweet moment still a baby but not so much. Although he will always be the baby :) 1 more tooth is on the peak of popping through an eye tooth before the front teeth LOL.

SLOW DOWN SWEET BOY

Oh the worry of a worrisome mama

Worries oh worries can calgone take me away LOL. Tomorrow is Cole's 6 month post-op Echo I am worried but its natural. I am sure everything will look great just have that wrenching pit aching worry in my gut. I am hoping that will ease over time.

 I will keep you update on how the appointment goes tomorrow.

~When I am afraid, I will trust in you~ Pslam 56:4

TAPVR HEART

I have never posted a picture of how TAPVR looks opposed to a normal heart or much information of what TAPVR entails. I will soon until then  check out the picture I looked up from CHOP.

The Change up

So LOTS going on. Can't say much as of yet but lets just say soon all of our family in California will be meeting Cole here very soon.


To be continued.........................

Happy 6 Month Heart Birthday Cole

January 5th 2013 we celebrated Cole's 6 month heart birthday. It is so hard to believe 6 months ago my baby went through OHS. We have come a long way to where we are now. To say life after OHS is easy and worry free is not true at all. I still have so many concerns about Cole and am in constant worry over him. He gets dusky often as well as grey and his lips and inside of his mouth are icy blue at least 3 times a week.  He is getting big now 19lbs 10oz and 26in wow has my guy grown.

He loves to watch football with Daddy and he wears his jersey every time our team is playing. He loves, loves, loves Mickey Mouse he watches that show daily and has a stuffed Mickey doll as well. Cole can say Dadda and boy does he say that a lot along with baba (bottle) and hi. I wish he would say Mama LOL . He tries to say other words but so far its just baby babble. Still on formula but eating solid foods now too. He loves his veggies and applesauce.

Crawling forward is about to happen in the Pombo house. Cole can crawl backwards and working everyday to go forward, although the he can't go forward he sure gets around. No teeth yet but one is about to pop to the surface.

We still have severe acid reflux and our dealing with that with medication and watching what he eats. We have our 6 month cardiologist appointment in late January. Praying the scar tissue is not interfering with the repair and that the left ventricle is doing better than it was in September when we were admitted to SCH when Cole stopped breathing. More to come after our cardiology appointment. For now Cole is smiling, happy and we are loving every minute and day we are blessed to spend with him.

Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

 You're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start
It's where I'll start