Saturday, September 1, 2012

Heart Hope, the movie

This short trailer was hard to watch because it showed so many scenes during and after surgery that reminded me of all the things I saw when we were allowed to see Ryleigh after her surgery. It's very fresh still, but my reality. If you have time, watch this trailer and the movie.

http://www.heartsofhopethemovie.com/Trailer.html

Thursday, August 30, 2012

Expect the Unexpected


I guess a part of our new normal is to not expect the expected when we go see her doctors. We had a cardiologist visit this past week and I thought it would be a simple, “hey she’s doing great see you in a month or two”, but it turned into more. Ryleigh’s heart is showing signs of loss of function in the right chamber, some valve leaking, and narrowing of the vessels. What all of this means is the little thing will need to be watched closely for heart failure until her next procedure which should be in the next 6 weeks. I am not sure I caught everything her cardiologist was telling me as I was a bit dazed but it appears the right chamber has decreased function because it is overworked due to the narrowing and leaking of the vessels. She also went on heart meds to lower her blood pressure to give her overworked heart a break.

While this can be viewed as a blow, it is not below the knees and we will recover. Her story has been primarily uneventful, so we expected some hiccups along the way. While it still upsets me, I can’t focus on what I can’t control, so I am enjoying every moment with her because the next one is not guaranteed. If I spend my time focusing on the negative I won’t enjoy all the positive!

She will be visiting her cardiologist in 2 weeks to see how everything is holding up, she wants her to be at least 2 months old before another procedure. It will be in the Cath Lab and she should go in and come out the next day latest if all goes as planned.

To lighten the mood here are some recent photos!
I'm cute and I know it.

Ryleigh and her doll

Look at me lifting my head!

Kiss Kiss

She stares at the doll in a loving but creepy way!



Peek-a-boo, where's Ryleigh?

Mommy and me!

Big brother Cael and Ryleigh, true love.


Look how loooong I am!

Mommy and me!