Quiet and Resting..

Brotherly Love

The Central Line was removed today, this is a IV(located in his right shoulder) that goes into the right atrium, to measure central pressures in the heart. I know this doesn't sound like that much. But one by one all of the frightening IV's and tubes are disappearing. The large stand containing the IV fluid bags, antibiotics and heart med's was taken away as well. Maybe now my pictures will not look as scary...

The only one's left are his chest tube(which is the most dramatic) and pacer wires (very small). The chest tube was also supposed to be removed but air bubbles were heard and 48 hrs needs to pass before it could be removed. Hopefully tomorrow will be the day...

The only medication he is now on is Lasix which is a diarrhetic. After surgery heart function is a bit sluggish. Fluid can build up in hands and feet and will start to get puffy. Without this medication the heart would have a hard time pumping against all the fluid.

The only pain medication he is on is tylenol. Amazing 2 days later that is all he needs...


It was a quiet day, Nir took the boys to Busch Gardens. After 2 days of Hospital Waiting Rooms and The Ronald McDonald House the boys needed to work off some built up energy.

Jesse and I relaxed and hung out together most of the day until my brother, his wife Julie and my nieces Ashley and Amanda came to visit.

 

While Jesse slept, I slipped out (first time since we arrived) to show the Johnson's where the boys are staying as well as grab a to go order from my favorite raw food restaurant. Thai Curry coconut soup and salad, yum. So glad to eat well while on the road.

Tonight: Jesse feeling better...playing with the wires

Have a great night!  :)

We had a good night..

Jake's love for Jesse is beyond words...




We had a good night. I was surprised after such an uncomfortable afternoon that we would be able to sleep more than a half an hour at a time. Jesse seemed to settle down and was much more comfortable. We slept about 2 hrs at a time. He went through the night with out any morphine, which is great. He is now taking just tylenol and a med (can't remember name) that just sedates him a bit. The combination of the 2 is working well. We are trying to give morphine only when he really needs it, like tomorrow when they take the chest tube out. We met with the Dr.'s, PA's and nurses today to go over all his stat's.  He is doing amazing and we could possibly leave on Monday..i think it will end up being Tuesday. It is amazing that you could come in and have Open Heart Surgery and leave 4 days or 5 days later..

Nurse Laura. She is great. I would highly recommend All Children's Hospital. Beautiful, New. Amazing Staff.

First time Jesse sat up. He did great!

Like Father...Like Son.... Watching Olympics.

First time drinking liquids.

Looking more like himself, with some style...

My friend Tracey sent me a message:
We read your blog together tonight and when Grayson saw the picture of Jesse's chest he said, "it is ok, because that scar means the doctors were able to make his heart better." " You are so sweet Grayson!

Also:
My Mom was walking Jonah from our room in ICU to the waiting room outside, while the nurses and PA removed one of Jesse's lines. As they were walking Jonah saw one of the Dr.'s and asked him. "Are you the Dr  that broke my brother's Heart??" The Dr. answered.. " I did not break his heart I fixed it," all while he was cracking up laughing...

I'll leave you with a smile on my face.... It is 3:15  :) More updates later...

Soooo happy to hold my guy!

Surgery's On!

We left yesterday diaper rash free for Take 2 around 4:30. We felt like professionals, knowing this time exactly what to expect when we arrived at The Ronald McDonald House. With the whole family in tow we crossed the Sunshine Skyway Bridge, entering into St. Petersburg. Clear Blue Skies this time, again reflecting how I was feeling. Optimistic this time was the real deal.

Last night I woke up every hour,  beating the alarm clock set at 4 am. We were scheduled to arrive at 5:30. Because we had done all the pre-admin testing last week, we only needed to have blood drawn this week. I guess the ladies at the lab do not come in this early because last week was much smoother. After finally getting blood drawn we walked with him as far as we could before we had to say goodbye...

Always a happy boy! Even when they take him back for surgery...

Dr. Q  just came in to see us, Jesse is sleeping well. He is going to use a camera now to assess Jesse's heart and take mental notes of everything he needs to do. He said the surgery will be around 3 hrs and we will receive an update in about an hour. Glad I remembered to buy water proof mascara this time.

Josh and Jake cheering up Mom and Dad. They are so thoughtful. They bought our wall hanging in the gift shop themselves...

Nothing like Wi-Fi to keep the boys entertained and Mom busy taking photo's and blogging... 2 hrs to go..











Dr. Q with Nir. Surgery was a success! There were 3 holes that needed to be repaired, and closed. 2 in the upper chamber and 1 in lower. He said the way the larger upper hole was arranged, when he put them together was like G-d had planned him to fix it where the pieces fit together perfectly.

It's been a tough afternoon. I was dreading the first time I would see him after surgery. I felt weak and nauseous when i walked through the door. But the look in his eye when he saw his Mama...Everything would be ok...I have read and seen photo's on blog's preparing me for this surgery, but nothing can prepare you when it is your child looking into your eyes after surgery.

I thought he would be sedated and a sleep much of the afternoon, but he has been irritable the entire time.  It seems he is calm and about to fall asleep for 1 minute and then fussy and uneasy for 3 minutes. He has not slept or relaxed since I came in the room at 12:30,  it is now 4:00. The nurse tells me this is normal for the first 24 hrs. They have increased his pain medication and tried giving him meds to sedate him a bit.(which doesn't seem to be working) Boy, this is tough on Mom!

I will update later on hopefully with some news that he has settled down and relaxed a bit...
Thank you so much for all the thoughts and prayers that have come our way...I know they have really helped.  xoxo

He seemed much happier when i snuggled up with him, I couldn't take it any longer so I hopped in bed with him...breaking hospital rules i am sure....

If you have a weak stomach you may want to scroll down...It looks worse from the side view, I couldn't help post this photo, he looks like such an angel.....

It is 10:45. Jesse seems much more comfortable then this afternoon, fussing about every 20 min instead of every few minutes. I am happy about this. Hope we will get a little rest tonight.  :)

Count down... 3 days

Such a big boy, he went from nursing to using a straw, no bottles or sippy cups for this kid.

Jesse loves to play with his big bothers. He is army crawling all over.

Jesse with his therapist Brenda. Way to work Jesse!

Jonah likes to help out...

Brenda brought a great therapy chair, he fits just right.

Learning to turn pages...

Still trying to stay busy. Fitting in a couple therapy sessions before we leave.

Thank you to all of you who have called or sent emails (and saved this article from the latest People Magazine) regarding the little girl from Miami that will be the main model in ads for DC Kids, the children's line from Spanish designer Dolores Cortes. “People with Down syndrome are just as beautiful and deserve the same opportunities,” Cortes said in a statement.
I also have on my refrigerator the ad from Nordstrom which has a 6 yr old boy with Down Syndrome.
Target has run ads as well with children who have DS. It is so inspirational...

Have a great evening.... :)

Chilling Out

With 5 days to go before surgery is scheduled again,  the only thing to do is relax and try to stay busy...

Mom, Dad, Jonah and Jesse on way to Food and Thought(local health food store) for breakfast.  While i am learning to bike and take photo's at same time..

Jesse's first ride in the baby seat. Now that Jonah is able to ride his bigger bike, he has given up his seat behind Dad.

Jesse practicing with sprouted pancakes how to feed him self... Sooo proud of you!

Trying to beat the summer heat.. Jesse loves the Gulf. Salt Water good for that rash!

Finishing the day with good friends.. (while Jesse got a good night sleep) :)