Monday, February 1, 2016

Congenital Heart Disease Awareness Month

Today kicks off Congenital Heart Disease Awareness Month.  I thought I would share several...ok, lots of our pictures from our son's journey with CHD.

The journey began in 2004 during my pregnancy with our first child.  During the pregnancy details were discovered that Jacob would be born with only 3 quarters of his heart.  His actual diagnosis is Tricuspid Atresia, Hypo-plastic Right Ventricle (his right ventricle never formed).  

I have tried and tried to get this post written, but I type a sentence and then delete it, again and again and again.  I think what would be best is to just let the pictures tell the story.

First time to be held by Daddy - 1 day old - PICU (intensive care)

I promise we were old enough to have children!  We were 25, however, we both look about 14!

First time being held by Mommy

First surgery was scheduled for four days old

After first surgery, he was so tiny a band-aid was able to cover the incision.

Sitting with Pappy in his room on the 4th floor - no longer in ICU

Second Surgery - 3 months old

The Aggie towels you see over his bed have been through every surgery.  The white 12th Man towel was given to us in the PICU by a young doctor.  Also, my grandmother made hospital gowns out of  soft baby flannel.  He loved them and got quite the compliments.

Visiting with Daddy after his 2nd surgery.  He loved to "buzz" in the bouncy seat.

Taking a ride in the wagon.

This picture was taken the night before we went to the hospital to prepare for the third surgery.  I wanted a picture of his scar before the next surgery.  I know, it is a weird obsession for moms of heart babies.  We love those scars! :)

There was a very long wait before his catheter for the 3rd surgery.  We resorted to money for entertainment.

Daddy taking a nap in the PICU

Still waiting

Right after the 3rd surgery.  I had the hardest time accepting that his chest looked so bad.  I had worked so hard on that scar!  In the next several pictures you will notice less and less equipment.

Ventilator has been removed

Tower of "cocktails"

The tape and blue band across his forehead was to monitor temperature.  However, it had been taped to his hair.  It was not an easy thing to remove.

He wasn't allowed any food or liquids (other than an IV) so a nurse introduced him to large q-tips that tasted like lemon.  He finished the whole supply.... really!  She even went to different floors looking for more.

Yay!  The tape and band plus nasal cannula have been removed!!!  Resting with his best friend, Mr. Bear.

When you have a child in PICU you let them sleep in whatever position is comfortable.

Notice the Aggie towels again. :)  We still have them and if he ever needs another surgery they will go with us.

Resting on the 4th floor - out of PICU


Visitors always make things seem better.  Right before this picture was taken, the HALO flight team had been in the room.  His IV had come out, again.  He was such a hard stick they needed the HALO flight team to get the job done.  

Feeling so much better

It was crucial that we find a wagon.  He got so tired of the hospital crib.  He would refuse to get out of the wagon.

Yep, with approval from the nurses, we decided just to let him stay in the wagon.  He slept in it all night.  The night nurses just worked around everything when they came in to check on him.

Ma (my mom) would run over on her lunch breaks for a quick visit.

Taking a ride with Ma

At home with a balloon delivery from Nana and Pawpaw

Visiting his thoracic surgeon, Dr. Mark Morales.

Here is a current picture of my Heart Baby.  He is eleven years old.  This summer will mark 10 years since his last surgery.  :)

During the next month, please take some time to pray for families of heart babies.  Also, please pray for the doctors and nurses.  They are incredible people with extraordinary gifts that could only be given by God.


  1. Greetings! Really love to see your boy is now healthy and recovered from congenital heart disease. Good blase you

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