Tuesday, April 9, 2013

Heart Update

Lulu continues to be more and more apart of the family each day. So much so that you'd think she's been here forever!

Monday was a long day at the doctor appt. We arrived around 12:30 and didn't get out of there until after 4pm. It was a great visit though and Lulu was wonderful and content the whole time! The only time she cried was when the sono tech needed to put the sono tool right under her neck.

She ATE the WHOLE time! We went from almonds to fruit snacks to graham crackers to more graham crackers. The doctors bring the crackers in with them so that they are able to listen to her heart and also make friends! They also gave her a really nice teddy bear! She loves it.

We met with nurses, she had an ekg, then a heart echo, then met with a nurse practitioner that explained everything to us and answered our questions then her heart dr, Dr. Patel.

They confirmed everything that China had reported. She does have Tricuspid Atresia, which basically means her tricuspid valve did not form very well. Her heart did compensate though and had holes in other places that allowed the blood to flow somewhat to where it needed to go, enough to keep her alive until her first surgery in China when she was 4 months old. They said that from what they can see the surgery in China was done well.

The left side of her heart does most of the work and functions the most while the right side is not as developed since those valves didn't develop much and not much blood flow took place there. She also has atrial septal defect and pulmonary stenosis. Honestly, I am still trying to understand it all, but of course Ty gets the whole thing! He said he's studied some things about the heart before....I guess I need to stare at the diagram a little longer! :)

She goes in next Tuesday into St. Francis, will be admitted, and put under for a heart cath. This procedure will allow the doctor to see how her heart works, how the blood flows and her whole anatomy of how everything is working...if she (the doctor) sees other things that she can do while in there with the cath she will do it too, like get rid of blood vessels she does not need and lengthen and expand some that she thinks need it.

Her blood pressure was good and her oxygen level was 87 which is decent, but of course normal is 100.  She has gained weight, now at 28.4 pounds and 3 feet tall.

She will have her next surgery, the Fontan, this summer. This is where they run a tube from the bottom of her  heart (the inferior vena cava) to the upper part (superior vena cava) so that even more blood can make it to her lungs. This surgery will allow her to get 50% more blood to her lungs than what she is getting now, at least that is what we think, but as we continue to talk to them and get more educated we will be more accurate with what we believe we learned yesterday! LOL!

All I know is that as long as her fingers and toes aren't blue I think we are good! HAHA

Here are some pictures of her visit, she was a trooper and behaved well and sometimes was having fun! They do a great job at the heart center!


 Heart Echo; taking lots of pictures of different angles of her heart and listening to her heart beat, rhythm.
Doing such a great job and being such a big girl!

Learning to help mom around the house! Vacuuming her own mess!

Watching dad pop some wheelies.

 She would laugh when he would pop the wheelies right in front of her.

After nap time enjoying some yummy oreos. 
 They take her a long time to eat because she slowly scrapes out the middle. 
At least she vacuums up her own crumb mess!

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