Letting Cole be COLE

This post I'm sure will cause all kinds of emotions and everyone's opinions ​to flare. I've put this off for way too long and well I don't feel the need to hide this any longer or make excuses. As everyone knows I've procreated like a bunny. Out of my beautiful children I have my last baby Cole. Some of you know​ Cole’s special heart story and why he is so special and others may not if not check out some of my previous blog posts to catch up on Cole and his journey. 

Cole is a heart warrior with a lung disease that's left his veins in his lungs malformed and under developed. Through all of Cole's struggles he has overcame each of them. No oxygen 24/7 anymore only when very ill, no ICU stays these days, I thank God every day for this boys strength. Cole's life can change in a blink of an eye but we live day by day.

He will be 4 years old on the 17th of this month. We all love our children and want the best for them and it hurts us to see them hurt. So with all that being said why do people feel the need to say what a little boy should or should not play with???

Cole loves Frozen this love for Frozen came from our many stays at Lucile Packard Children's Hospital and it being on demand at the hospital. The movie Frozen kept Cole entertained while having procedures and just having to stay cooped up in the baby prison crib. With that love for Frozen came a love of dolls, crowns and singing lots of singing and most things process related. Hey if this makes him happy so what?? What does it hurt if my son carries his Elsa Barbie around town while we run errands??? Why do complete strangers feel the need to make ​rude remarks about my doll carrying son?!? Cole's reaction to anyone ever saying anything negative around us about boys and dolls is "isn't my doll beautiful I love frozen" if they don't answer he just smiles and continues and says I love dolls and I don't care. I love Cole no matter if this is or isn't a phase. If you see a boy carrying a doll or wearing a crown so what, who are you to judge anything.

Keep it moving people there are more serious matters in this world than my son who carries his baby doll or Barbie who may or may not have worn his coronation crown out that day.

This is my Cole and I love him just the way he is.

Some Things Just Can't Be Fixed

Some things just can't be fixed no matter how much we want them to.

 When something breaks our first instinct is to fix it whether it be the kitchen sink or the car a broken plate a relationship we WANT TO FIX IT. It's human nature to want to fix things when they're broken. Now when our children are sick that is a whole other kind of broken that no one ever wants to face but some us us have to.  When you find out your child is sick yet again you feel it in you to fix him/her no matter the cost, you would give your soul if it was an option just to fix what ever is wrong with your precious innocent child. Well here we are at the non fixing point.Yes it's true some things just can't be fixed not even by medicine and brillant doctors. Its just the way it is and all you can do is keep going move forward and keep going because what other choice do you really have?

What do you do when you have tried all your options and and done all you could do. You've had your child poked and prodded tested over and over. Countless arguments with your spouse about enough being enough and if we should just give up or stay to figure what is wrong. So we stay at Packard it took about a week lot's of test invasive test,procedures and lots of brilliant Doctors working to find out the problem and FINALLY a the discovery was made.

A lung profusion scan along with nuclear medicine shows that Cole has several tiny AVM's in his lungs and abdomen. He was sent home on 24/7 oxygen at 2 liters as this helps his o2 levels so much and puts him from low 60's to 98. Yeah its hard but no more baby blue!!! So what I trip on a 50 foot cord every now and then and we haven't figured out how to go to the park yet but we will get there. The part that hurts the most was our 1st pulmonary appointment.

I sat in a room with Cole along with his 2ft tall o2 tank and stroller must of been a sight lol anyways Dr. C came in and said she could see the AVM's and is 100% certain that he does have HHT AVM's that will spread over time because I genetically gave this to him. I'm learning to deal with that and it will be a different blog post. Moving on I said good we know where the AVM's are located when are we fixing him with a smile, she looked at me and said " we aren't" just as simple as that and then said sorry I looked at her and all I could say is okay then what do we do? She said let him experience life be a boy and wear his oxygen as much as he will wear it since it helps him he will be smaller than other children and this is a disease and it will spread and we will do scans yearly if the AVM's ever are big enough to fix we will fix them till now enjoy your baby love him and don't limit him. My face was still in shock at the fact that my baby could not be fixed that there is nothing but oxygen that could be given. He is not in pain he is happy and with the oxygen he grows and develops we see a change in his daily.

Cole is such a fighter he is so mean lol well tough, he can be mean at times and so so loving he loves babies just loves them and boy does he love musicals he loves music and LOVES to sing. He is so full of spunk but I think without that fight that is what keeps him going we have so much still ahead of his his journey has just began and to think this all started with his heart defect. By the way his heart is look amazing pumping great and scar tissue growing just as is should. Cole will be 2 years old May 17th he is getting so big we all love him just the way he is and couldn't imagine our lives without our miracle boy.  

My Crabby Patty Cole he was Mr. Happy today :)

Cole and Brother Gavin 

1st time out on portable oxygen we had lunch he was happy to be out

Easter Day 2015 all dressed up 

Cole didn't let anything stop him from finding all the hidden eggs at Aunt Nita's and Unlce Ralphs

Our New Home Life

So Stanford let us go and boy oh boy we couldn't be happier especially Cole.


 A lot is different now that Cole is on oxygen 24/7 my how things change in a  blink of an eye. A toddler on oxygen is a challenge let me tell you, praying for strength daily. I will have to finish this post later just know we are home and learning and I have had highs and lows as so has Cole.


To Be Continued .........

Zofran Lawsuit Did you Take in your 1st Trimester?

So this has been a topic on my blog once before and it caused an up roar which resulted in me taking it down. Here we are again, did you take Zofran during your 1st Trimester and your baby was born with a birth defect?

 Well guess what, I DID take this crap the real Zofran because I was extremely sick and couldn't stop throwing up I was only 6 weeks pregnant with Cole at this time. Today I seen this ad so I called the number and spoke with a Lawyer. This isn't about searching for money this is about the principal that these doctors throw us meds that they don't know what it can do to our unborn fetus's. If you think you have been effected by this drug click on the link below. With all of us we can make sure another baby doesn't result from a birth defect by a sick mama that has been prescribed this drug.



http://zofranresourcecenter.com/

Cath Lab

Yesterday March 2nd we went to the cath lab with the amazing Dr. Perry. Well guess what Cole did great but no answers so back to the pulmonary team we go. To see such a brilliant Dr. sit before be scratching his head in utter disbelief was something else. You could see his wheels turning and you could also tell he wished he could of given me some sort of answer as to what is going on with Cole. There is still a residual ASD but its so tiny it's doing no harm and will close on its own.

The recovery went well, Cole was on light oxygen in the recovery room and wanted his mama which hey as exhausted as I was I wasn't complaining. I held my baby so happy all had went well frustrated we still have no answers but I have my baby. The night was ruff heart rate was super high or super low his sats were low throughout the night and he started to run a pretty good fever. By morning he has been fantastic and his leg where they went in a little sore, which hasn't kept him from being ornery not one bit. Next step back to pulmonary for more testing this afternoon. 

By the way what ever they gave Cole to calm down before they put him under made him laugh hysterically I wish I could of got it on video. LOL my poor baby he is so tired of getting tested, poked and prodded. We are on day 5 of being at LPCH. 

        Headed to the Cath Lab 

       Not too low I think we can go home

            Cole is ready to escape

The Waiting Game

So yesterday was filled with lots of unanswered questions. We sit here and wait. All I can say is hopefully later today we have answers to what our plans are for Monday and I am in hopes we get to go home. Possible heart cath tomorrow. Praying for answers as Cole is now on assisted oxygen when out of bed as his sats drop between 68-70 I have no idea what is going on in that little heart. Praying for strength daddy had to go home and work we are NPO at 2am and an add on case in cath lab tomorrow. Cole is sleeping peacefully right now and I think I will get some rest too.

To be continued......

          My Cole, Baby Wild Sunshine

       IV team trying to start a new IV

Stanford Children's aka LPCH Sleepover

So we were admitted to LPCH last night. Just so you know nothing serious his pulmonary Dr. thought it would be best to stay and have his testing done today because Coles blue spells and o2's have been crappy these days. So here we are watching Frozen for the hum-tenth million time. I have to say I don't mind although the nurses might when I belt off into Elsa or Anna singing voices lol. Enough joking lets get to why we are here. Cole needs an angiogram and bubble echocardiogram today and will be completely put under. These test will ultimately determine what is going on and what course of action will be taken to fix the problem and or problems. IV team came to prep for Coles iv should be about 30 mins he had numbing patches on his hands right now to lessen the pain of getting poked.

I know one thing is certain Cole is so strong and happy. He makes me melt and well some people are worth melting for as the great Olaf says. I'm not sure what time the tests will take place put I'm sure it will be by mid afternoon. Hubby and I will not be with Cole during these test since he will have two anesthesiologist teams cardiac and pulmonary in the surgical room. Has to take place in there since he will be under general anesthesia. Praying is all we an do and I can feel it in my heart all will be okay. 

To be continued........... 

               The Pombo's are back 

     Cole last night with baby (his blanket)

       Daddy and Cole deep in thought

       Cool numbing patches. He thinks?!?