Monday, February 23, 2009

Say a prayer for Gracie

Those of you in the 'heart community' already know about Gracie. For those of you who don't, she and her family desperately need your prayers right now.

Gracie is 6 months younger than Joshua. She too has HLHS. Unfortunately, like so many of these HLHS kids she has had a very rough time.

She received a heart transplant yesterday that seems to be failing her. She is currently on life support. Please pray for this sweet family & their little Gracie.

Saturday, February 21, 2009

This baby loves his babies!

Joshua's older sister had me swaddle this little stuffed animal for her several times today. Later in the day I saw Josh wrapping the same stuffed animal in a piece of paper, doing his best to swaddle his "baby". Such a sweetheart!
By the way, I never updated about Joshua's blood work he had done a couple of weeks ago. Everything looks great...of course the over-confident guy with the needle couldn't get a vein & eventually ended up pricking him & then squeezing the blood out for about 10 min (what's new?)...but it's over with.

Saturday, February 14, 2009

Happy Valentine's Day!

Yesterday Cupid baked these delicious treats, decorated with beautiful mended-hearts he made out of fondant & then proceeded to drop them off to the Cardiology team at Kaiser. He's one heck of a baby! With that said, I don't recommend you turn your back on him, he's a sharp shooter!
Happy Valentine's Day!

Thursday, February 12, 2009

I've created a monster!

Little Joshua can do no wrong in my eyes. Seriously, I find everything he does lovable. But I am the only person who feels this way I am afraid.
I made the kids some mini blueberry muffins for breakfast this morning. About a half hour after breakfast Abby walked up to the plate of muffins & screamed! She said "Someone ate all of the muffins!"
I assured her that she must be wrong because no one could have possibly eatten a dozen muffins (come on, Jon was at work). I went to see what had really happened & she was right, someone had taken a bite out of each one! I searched for evidence & found this:
He is a dickens! But really, could anyone else get mad at this boy? He's just too cute! Minutes later I heard him screaming "Momma, momma, momma!" From the front room & found this! I admit, I've created a monster! But I love my monster!
And the set of stairs he created was pretty impressive!

Tuesday, February 10, 2009

One year ago today...

...we walked into Joshua's ICU room see this...
That is right, one year ago today Joshua had his second open-heart surgery, the Glenn. It was a rough one for Joshua (as well as the whole family), but as soon as he was fully recovered we had a new & improved baby on our hands! We were told to expect a 7-10 day recovery...uh, not quite! 6 weeks & a pacemaker later we were home free!

In many ways it feels like the Glenn was years ago because Joshua has come so far this past year! It is unbelievable what a child is capable of in such a short time.

I was told that for every day a baby spends in the hospital, they fall 3 days behind developmentally. 12 weeks in the hospital did not slow him down a bit, what a huge blessing!

Everyone already knows this, but I'll still say it, we couldn't be prouder of our little fighter!

Way to go baby boy!

Saturday, February 07, 2009

Be Aware...

Joshua 3 days old

This week is Congenital Heart Defect Awareness week. CHD's are incredibly common, however, unless you know someone with one, you probably haven't given it a second thought. This is because of the limited media exposure CHD's get. So this week, as a mother of child who was born with one the the most serious heart defects, I'll do my part in spreading awareness.

Not so fun-facts:

*CHDs are the #1 birth defect & #1 cause of infant death related to birth defects.
*1 in every 100 babies born will have a CHD
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*Causes for CHDs are still being studied. It is said that both genetics and environmental factors can play a role.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Only about 30% of the children who need a heart transplant receive one in time.
*About 40,000 units of blood are used daily & only about 5% of adults who can donate blood do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Two years ago this week was simply the week of Valentines day. Now it is a time when I am very reflective of the journey we've been on with Joshua & his heart. Joshua spent his 3rd day of life, his heart stopped, laying on an operating table as dozens of people re-built his grape sized heart. He spent 3 of his first 6 months in the ICU. At 4 months he had his second open-heart surgery. While we have been incredibly blessed that Joshua has done so well this far, it has not been easy. He will face his third open-heart surgery within the next 2-3 years. At some point he will need a heart transplant. Help spread awareness! Heart defects don't discriminate...I certainly never would have thought that we could have a child who was less than healthy. Also please, if you are not an organ donor consider becoming one. If the thought turns you off, take a look at little Owens blog. He is in need of a new heart.

The medical world has made huge advances over the past several years, and the hope is that this will continue! With proper awareness comes proper funding of studies, research & so forth...please spread awareness!

Joshua today