Wednesday, February 10, 2016

Wordless Wednesday...Snow Days











Sunday, February 7, 2016

Sunday...


Friday, February 5, 2016

Red For CHD!

Today is national wear red day! We wear red to help raise awareness for CHD (congenital heart defects).


This next week is CHD awareness week, it is one of little M's very favorite time of the year. It also is Chinese New Year, and ends with Valentine's, so we will pack a lot of fun into this week!


Tiny P did so well yesterday for her cath! It was a simple cath, they only went in through her groin (versus the groin and the neck), so she only had to lay still for four hours afterwards (versus the standard six hours). She woke up very angry to find out that an IV had been placed while she was in the OR, but when she calmed down, she was able to eat and watch a show.

Her heart pressures are amazing! They have come down form 23 to 14 (normal is 10-12), and everyone was so excited!
I was a little disappointed to hear that she still has a heart rejection grade 1r. I was really hoping to hear that she had zero rejection... it's the lowest grade, though, and everyone is still very pleased, so we will choose joy, and wait for the next cath.


Thursday, February 4, 2016

Wednesday, February 3, 2016

The Heart Facts...


These are just a few facts about our baby's hearts that I have posted on Facebook the last couple days...

Little M was born with tetralogy of fallot (ToF)...she had four heart defects, and double outlet right ventricle (DORV)...both of her great arteries connect to her right ventricle instead of one connecting to her left ventricle. She had surgery to close up two large holes in her heart after she first came home. She has moderate to severe pulmonary valve regurgitation, and she will have a pulmonary valve replacement by the time she is ten. To know little M is to know joy. She radiates happiness with her whole self, and her brave heart is the happiest heart I know. It is such a privilege to be this girl's mommy, and watch her special heart grow.



How unique is our tiny P? 
1 in 100 babies are born with CHD (congenital heart defect). 1 in 5,000 babies are born with single ventricle. 1 in 3,000 babies are born with DORV. 4 out of every 1,000,000 babies is born with heterotaxy and 1 in 12,000 is born with dextrocardia. 
That makes our girl pretty special!



Our baby J is "heart healthy."
He has a different kind of special heart. We get asked all the time how being in the hospital so much affects our other kids...it does affect our boy! He asks almost every day to check on the computer for kids who need families. He talks all the time about how we need three more kids in our family, two boys and a girl, to fill the empty chairs at our dining table. And he talks about how they will all have special hearts and how he will help while they are in the hospital. His heart is wide open, ready to love, and so beautiful.


Wordless Wednesday...Super Girl









Monday, February 1, 2016

Heart Month...

Today is the first day of heart month! As you know, we have two precious heart warriors, and this month will be a lot about special hearts and CHD (congenital heart defect) awareness.

We are still celebrating our baby's new heart, and we are loving the new little person she has become.
We understand that a heart transplant is "trading one heart disease for another," but truly, the new life she radiates is amazing to see!

Little M was born with several holes in her heart and a pulmonary valve that did not work properly.
She had surgery to close those holes when she first came home, and she will have another surgery to replace her pulmonary valve in the next couple years. Little M is pure joy, pure sass, and beautiful inside and out.

We are beyond blessed to have these girls in our lives, and I am looking forward to sharing more about CHD, our precious girl's hearts, and our heart for kids with broken hearts who need families.