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?!?

Adventures with RSV & Pneumonia

So February 16th was my Birthday, I turned 34 yay!!!! Some very troubling events happened that day and well lets just say the best gift I got was COLE :)


And here is the story...........



February 13th I noticed Cole's cold just wasn't getting better so a call to his Dr was made. All the boys in the house are sick so I just thought they all had this nasty cold that is passing around the town. Dr. said Cole was weezy and maybe he had asthma along with a cold. I went to 5 different pharmacies to get the breathing meds and nebulizer I felt defeated that Friday for sure. As we went through the weekend, Cole kept spiking a temp of 102 every time it would go down it would just come right back his o2 was in the low 80's. Low o2's are nothing new for Cole but that will be on another post. Monday was here and it was my Birthday Presidents Day so I had ALL the Boys at home as school was closed. I called Hubby and let him know baby was still sick and burning up about 103 meds were given and I undressed him and gave him a breathing treatment as he had labored breathing. Auntie Misty came to visit with Cousin Rocco to deliver Auntie Chell (that's me) a birthday gift. Auntie Misty helped give baby Cole his breathing treatment as asthma is not something new to her, Rocco has severe asthma and has had it since 9 months of age. Breathing treatment was over and Cole was still struggling to breathe at that time Hubby came home and we started packing a bag. We knew birthday or not it was time for Cole to go to our local ER. I must of called his pediatrician 17 times I was furious no one ever called back!!!!!!! Despite no calls from the pediatrician we headed to the local ER, I kept saying they will just send us home and Hubby looked at me and said "better they look at him and check him out then to keep him here and he get worse."

We arrived at the ER about 5:40 pm 2/16/15 did the whole check in thing and we waiting only 2 short minutes before the triage nurse called for Cole. His temp was still high 102.5 and his o2 was 88 yikes, what is going on I was thinking. We went through with the nurse he has labored breathing which was apparent because his little tummy was going so fast to get air in and out of his lungs it was more than noticeable. At that point I looked at her and said I bet he has RSV!!!! We were taken to a room immediately. By the time we walked to the room and sat Cole on the bed the ER there was a Doctor and 2 nurses by his side checking him out tests were order and breathing treatments were given again. I have never been helped that fast in the ER EVER!!! At that time by the look on the doctors face I knew something was wrong. Chest X-ray was ordered along with tons of blood work IV was started, I knew we weren't going anywhere anytime soon. We notified all family via social media and text to let everyone know what the status of Cole was. 2 hours later the ER Doc confirmed Cole had pneumonia and an RSV test was ordered as well. I knew in my heart that Cole did have RSV which was unsettling because the year before he had the Synagis vaccine and this year's dose was approved but his cardiologist and pediatrician didn't think it was necessary. 2 more hours or so and it was confirmed Cole did in fact have RSV and we would be going to Stanford where his cardiac care team was. Lucile Packard is the Children's Hospital for Stanford and they sent an ambulance to transport Cole. 10:30 pm LPCH showed up to get Cole and make sure he was stable enough for our ride.

We arrived at LPCH around 12:16 am 2/17 in the PICU not a place we wanted to be again but it was necessary. They got a co-sleeping bed for Hubby and Cole and I went to a sleep station to get some rest once he was all hooked up and situated.  Around 4:30 am Coles oxygen dropped in the low 70's to 80's a place we haven't been since pre heart surgery, Cole was place on oxygen a low amount but it helped. Also Coles blood pressure was pretty high. Rounds were next and as a heart mom or a mom that has been through these rounds you notice your child may show off and be extra awesome looking during these rounds Cole did just that and was kept in the ICU till that evening then transferred to the step down unit. Still on minimal oxygen his o2 levels went back up great. During rounds it was mentioned about Coles history of his low o2's with his bluish and grey spells that started happening after his repair that was done 7/5/13, Pulmonary was called for a consult.


We were put on the 3rd floor on the East wing in an isolation room as RSV is highly contagious, the bright side to this we had a room all to ourselves which was awesome. Did I mention that LPCH has a movie on demand for the kids and Frozen was an option, it's safe to say we watched Disney's Frozen over 20x's. It kept Cole occupied and for the most part and very content thank GOD we brought baby which is Coles security blanket ( by the way he named this blanket himself)

 Pulmonary came for a visit and Dr Conrad was the Dr she is noting but brilliant and a genius!!!! She may have even determined a problem that I have that I could of passed down genetically to Cole.
Cole had worn a 24 halter monitor months previous to record these blue spells ordered by Dr. Punn his cardiologist, in those 24 hours 3 low o2's were recorded in the low 70' to high 80's it have these episodes recorded makes a parent feel less crazy and overly dramatic trust me and all of those episodes are in Stanford's computer system in Coles chart. At some point the referral to pulmonary had been lost from that last visit but all that mattered was that we were being seen now. 2 test have been ordered a Chest CT Scan with Contrast and a Bubble Echo all will be done while Cole is sedated with he will need a Cardiac anesthesiologist to help with the sedation. This will be a team effort and should hopefully be happening sometime next week. What ever the test uncover some procedures will need to be done to fix the problem and or problems. I really don't know if I want to get into the what if's at this point it will just make my head spin,  that will be another blog post so be on the lookout. Cole was released from Stanford late Thursday evening and seems to be doing better despite his low o2's . He is happy today and I am blessed to have him home running around back to his ornery self LOL. Now we wait for the testing and the out come of how to fix Cole so he can get back to his self and keep growing. Praying is all we can do and trusting that the Lord knows what is best for Cole and that having faith that Cole will be fixed.

    Lucile Packard came and got Cole

               Cole in ICU at LPCH

                Cole and Mommy

      Nurse Veronica was Coles favorite

        Kiss me mama I'm feeling better

 Beautiful quote sent to me by a wonderful colleague:

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

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