Thursday, August 28, 2008





good morning video :)

this is our little morning ritual- sorry about the camera angle

Sunday, August 24, 2008

his new thing- sticking out his tongue

telling froggy bye before heart cath
in the recovery room


silly baby

this is how he sleeps... lovessss his hair lol




and he has started sticking out his tongue :P

update

His heart catheterization went well, and they did have to put a balloon into the aortic valve to help with flow to his body. They also did a blood transfusion.

HIS GLENN SURGERY IS SCHEDULED FOR

SEPTMEMBER 9TH..............................

Please keep him in your prayers :)

A PICTURE OF THE PROCEDURE

what is his next surgery about? THE GLENN

Bidirectional Glenn Procedure

What is a Bidirectional Glenn Procedure?

The bidirectional Glenn procedure is the surgery used to prepare the heart for a Fontan procedure. It is used in children with congenital heart defects in which only one of the main pumping chambers (the ventricles) can be used fully. The Glenn is used for many types of complex congenital heart disease, like tricuspid atresia. The word bidirectional means that the blood from the upper body flows through the surgical connection to both lungs.

Preparing for the procedure

Prior to surgery, the child will have tests to diagnose the heart defects, including an EKG, a chest x-ray and an echocardiogram. In addition, a cardiac catheterization is conducted to diagnose the congenital heart defect and to measure the pressure inside the lung blood vessels to assure that the pressure is low. Blood tests are conducted to be sure there is no infection, no problem with clotting and normal electrolytes. Prior to surgery, blood tests to determine blood type and compatibility will be performed to prepare for the use of blood during surgery.

During the procedure

During this procedure, the child will be placed under general anesthesia, and special monitoring IVs will be put in. The chest is entered through the sternum (breastbone). The heart/lung machine is then connected. Any procedure that needs to be done inside the heart is then carried out while the heart is empty and stopped. The superior vena cava (the main blood vessel returning the dark, unoxygenated blood from the head and the upper body) is divided and connected to the pulmonary artery. Any other existing connection from the heart or from a previous palliative shunt that is connected to the pulmonary artery is closed. The heart is then allowed to resume its normal function. Appropriate temporary pacemaker wires and drains are placed and the chest is closed. The baby is allowed to awaken within a few hours and taken off the respirator. Oxygen blood levels do not reach normal levels after this surgery, since all the blood from the inferior vena cava (all the blood returning from below the diaphragm) is still mixing with the oxygenated blood within the heart. The procedure does allow the superior vena cava blood, which represents approximately 40% of the blood volume, to flow passively through the lung. This change diminishes the workload of the heart.

After the procedure

After surgery the child will need a few days to recover from anesthesia, the use of the heart-lung bypass equipment, and the surgery. The child will initially be on a ventilator (breathing machine). Once the breathing tube is out, the main goals of care are pain control, taking care of the lungs by deep breathing, walking (if old enough) and eating

Tuesday, August 19, 2008

new pics...



he's found his feet!


his new best friend...


Sunday, August 17, 2008

what is cardiac catheterization?

Cardiac Catheterization

This is a procedure to examine blood flow to the heart and test how well the heart is pumping. A doctor inserts a thin plastic tube (catheter) (KATH'eh-ter) into an artery or vein in the arm or leg. From there it can be advanced into the chambers of the heart or into the coronary arteries.
This test can measure blood pressure within the heart and how much oxygen is in the blood. It's also used to get information about the pumping ability of the heart muscle. Catheters are also used to inject dye into the coronary arteries. This is called -->coronary angiography --> (an"je-OG'rah-fe) or -->coronary arteriography --> (ar-te"re-OG'rah-fe). Catheters with a balloon on the tip are used in the procedure called coronary angioplasty (commonly referred to as percutaneous coronary intervention [PCI]). Catheterization of the heart may also be done on infants and children to examine for congenital (kon-JEN'ih-tal) heart defects. -->

health update

I am just a posting-fool today! lol. It has been awhile for updates so I thought I'd just keep going while I had the time.

Parrish had his sedated echo last Friday and things went well. The nurse said "this is how we can tell what kind of drunk they'll be when they get older... when it hits him either he will get mad and feisty or mellow out". Well, unfortunately for him he is going to be that guy at the party who passes out first and everyone does stuff to him and takes pictures! lol. After his heart rate went up, he passed out and did fine. Its so amazing what they can see with those specialized sonogram machines. Oh, and she told me that it would probably give him gas. What she didn't know is that since he hadn't eaten and had the medicine, he didn't get a chance to poop at his usual time and had helacious gas when we got there! So on the way out she says "now, when he finally does go to the bathroom, it could be explosive". I swear that is what she said! So when we went to meet Murvin for dinner , he started playing with him- and Parrish pooped right out the side of the diaper onto his uniform! lol. That nurse was NOT lying :)

He weighed 12lb and was 24.25in. He is getting so big!

He has a heart catheterization scheduled for this coming Wednesday the 20th. They will insert the cath in his groin up to he heart and check the pressures in the chambers and his lung function as well. They will probably keep him overnight. We should get a better picture of when his next open heart surgery will be based on what they see and if they have to insert a balloon in an area that is narrowing (it is where the blood is pumped to the body) to buy some time. Will keep you all updated- promise :)

so excited for bathtime- with video :)

my chubby baby :)


does this double chin make me look fat?! lol


king of his own bathtub :)

Friday, August 8, 2008

update

His heart cath has been scheduled up from October- it is now September 2. Last doctor visit he has grown in length again- he is now 23in and as of yesterday he weighs 11 lbs! :) His sedated echi is still scheduled for Aug. 15.

Monday, August 4, 2008

Smiles and giggles... new video :)

New update on procedures...

Today Parrish had a clinic visit. They decided that they want to move up his heart cath to when he is 3 months old- so next month instead of October- and possibly move up the Glenn. Without getting very technical, there is one part of his heart that pumps the blood to the body that they are concerned is closing due to scar tissue or something like that. I understood in the office- but I really can't explain it as well as the nurses and docs. He will have a sedated echo in two weeks (he wiggles alot) and we should get the new date for the heart cath soon as well.
This afternoon when we got home, he was laughing and giggling and we couldn't figure out what he was looking at. It was the ceiling fan!!! lol. It was so cute :) I have some new video clips I am going to try to post soon.
Wish us luck tonight- its Parrish's first Tropical Storm!

Friday, August 1, 2008

What it means to be the parent of a heart baby...

What does it mean to be the parent of a child with a heart defect?


It means going into your baby’s room a dozen times a night just to check to see if he’s still breathing.

It means standing over the crib to watch the chest rise and fall and when you don’t see it move, you begin to panic and put your head down close to your baby’s face to try and hear him breathe.

It means that when you don’t see the chest move and you don’t hear him breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs – and you’re thankful, so thankful that he’s still with you.

It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you’d overmedicate him.

It means checking his nail beds against your own to determine how blue he is today.

It means asking your husband, your mother, or your sister, “Do his lips look blue to you?”

It means snuggling him in an extra blanket for fear he won’t be warm enough.

It means worrying that even a sniffle could cause an infection that could harm his heart.

It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world, just to be a parent.

It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby’s life.

It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief.

It means praying for the will to live, even if your baby doesn’t.

It means your own heart knows a pain, no parent should know.

It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands.

It means feeling strong, determined, and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child’s accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion than you ever imagined.

It means we are all united by the same feelings.

It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life.

It means that even though we are strangers, we are more to each other than friends could ever be. 1996, by Anna Jaworski

100 Wishes for Parrish

  • 1.a handsome look- madeline
  • 2.adventure- nathan
  • 3.all the love in the world- uncle matthew
  • 4.best of health- uncle matthew
  • 5.bravery- mommy
  • 6.charming personality- madeline
  • 7.common sense-jane
  • 8.compassion-jane
  • 9.courage- daddy
  • 10.curiosity-daniel
  • 11. generosity- mommy
  • 12. gentleness- mommy
  • 13. health- mommy
  • 14. humbleness- mommy
  • 15. humor-nathan
  • 16. inner strength- mommy
  • 17. integrity-matt
  • 18. intelligence- daniel
  • 19. long, happy & fulfilling life- uncle matthew
  • 20. many caring people in your life that you can call family & friends- the cowleys
  • 21. no regrets- uncle matthew
  • 22. strength-matt
  • 23. true love- mommy