Update.. A few weeks later..

Hi! I am sorry it has taken me so long to update this blog.They say no news is good news and in our case that is exactly right. .I know some of you have been checking blog to get an update on Jesse. First I would like to say thank you to everyone who has followed his blog and sent so much love and support our way..

Jesse 2nd day home... bandage still on from chest tube.

Wound above incision with dark spot is where they removed the skin tag Jesse was born with.

 We drove back up to St. Petersburg a week after surgery to see his Cardiologist. They did blood work, took a chest X-ray, an EKG and a Echocardiogram. All the tests came back perfect. The Cardiologist did say he has a small leak still from where they sewed the hole together, which is normal and will close on its own in time. They made an appointment for us to come back Sept. 7th.

Waiting for the Cardiologist to come in. The tape on the incision is starting to fall off.

Jesse continues to improve each day. We are going on with life as usual minus his daily Physical Therapy. The boys started school August 21st.

Family Night Out:

Bath Time:

Each year at school the boys are asked by their teachers to decorate their writing journal however they choose. This is how Jake(3rd grade) chose to decorate his. Can you guess who his stories are always about? 

Also, Jake on his 8th Bday last March blew out his candles. He turned to me and said "Mom I made a wish for Jesse". I didn't ask him what it was at that moment. Later on that night when we were alone I asked him what he wished for? He said "I wish that Jesse has a nice life, and that no one makes fun of him".  :)  He is an awesome Big Brother...

After just 3 weeks..Jesse is army crawling across the room. He is chasing Jake's journal...I hope to think along with his new improved heart it is his amazing raw diet.. He has been eating raw whole fruit and vegetables, drinking wheatgrass and blue green algae.

This is what we ask Jesse ..."Who's so cute?...His answer..MEEEEEEEE!

Doesn't his incision look awesome? I can't believe it looks so great after 3 weeks.  We googled why the top is red and this is normal.. 

Labor Day Week End. Walking and biking(kids) to our favorite Organic Grocery Store for lunch,  which happens to be a half mile away.

More photo's Labor Day w/e..

Did my first 5 k today...

Wow, it was great. I am already looking forward to my next one. I have been running for a while now by myself or with friends, between 4-6 miles. It was so nice to run with a group and with a purpose. 

We finished the weekend at Bamboozles rolland.. Josh and Jake were so patient with Jonah..so proud of them! :)

Hope you had a great Holiday Week End... :)

WE'RE HOME!!

Yes, I can't believe that we went in on Thursday morning and 5 days later we are home....

Car seat test. To make sure he would be ok on ride home.

Waiting and waiting for Dr.'s to come evaluate. We were the last room.

Deciding if he should go home...

Cardiologist 

Got the OK... Yeah!

WELCOME HOME!!

Yikes... who are you? why r u in my bed??

Missed my toys...

Are we really going home tomorrow?

Last night Jesse received his "bath" and got weighed before going to bed. The nurse told me he is not sleeping at night, just laying in bed playing. I know this is true because I have slept most of the night without hearing him. Waking at 5 am when they took a chest X-ray. They could not see any air in his chest tube so they were able to take it out around 7 am. I was told by the nurse that he would receive morphine to help with the pain when they removed the tube. But the PA who did the procedure did not want to use it saying that they turned off the suction yesterday and that the removal was only uncomfortable but not painful. I am glad he did not receive the narcotic but I hope he was ok. He did cry for a few seconds and it was over....

He is free...Only the EKG wires(which are taped) and oxygen saturation band wrapped around his toe are left. The IV's in his let arm and leg will not be taken out until right before we leave just in case. I asked why 2 of them and the nurse told me in case 1 fails they don't want to have to put one in again.

I was told we are ready to leave...once the cardiologist looks at the Discharge Echocardiogram (tomorrow) that he had today. The Echocardiogram is a test of the action of the heart using ultrasound waves to produce a visual display.

With tomorrow being Monday, there is a new on floor Dr. and Cardiologist. We have been talking to the same Dr. since we arrived on Thursday. We will see how long it takes for them to do rounds, catch up and hopefully sign us out. The nurse seems to think between 1 and 6 pm..

The boys left today with Claudia and Kim to go back home. I have to say that they have been wonderful. Such great Big Brothers!!

Nir and I spent the day entertaining Jesse. It is nice that he is not all hooked up and we can pick him up (carefully, not under the arms) and hold him.

 Another bath tonight, with the chest tube out it is alot easier.

Hopefully we are more comfortable and will get a good night sleep tonight. Who could blame him with a hose stuck in his chest? I don't think i would be able to sleep well either... A nice clean bed...


LOOK AT ME!! NO TUBES OR WIRES..... (well just for a few minutes)
EKG wires put back on for bedtime...

Bottle before bed....