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PETITION FOR PRAYER: Keep praying for Justin and his little heart. Pray that his leak will improve and that his heart will beat stronger and stronger by the day. I may feel helpless, but certainly not hopeless. My belief in the Lord will get my family and our little Justin through this. Thank you.

Some say no news is good news. Well, not in my case.

Heres my problem: I THINK too much. So, if you can imagine, I’ve been living in my head envisioning every possible scenerio that will occur since I’ve heard some unfavorable news about Justin’s heart as of late. My THINKING has drained me of any energy needed to even post the news.

Here’s the heartbreaker: Last Thursday, Justin had a scheduled echocardiogram that showed that his AV canal is leakier than pre-Glenn. The cardiologist also reported that his heart is not pumping as strongly as it once had.

I’ve been using all my energy contemplating the meaning of all this and planning my next move on what I’ll do to help this child of mine. (Oh, yeah, and tending to Nathan through his *almost* asthma attack, calling doctors, setting up appointments, paying medical bills, working on personal projects, etc….it never ends…thank the Lord for that!)

Heart transplant and everything that surrounds this issue is surely one of my worries. But, the cardiologist assured me, today, not to “obsess” over it too much as it is too premature to discuss at this point. Surprisingly, though, this is only in the back of my mind and I have NOT been obsessing over it. Rather, I’ve been thinking about how long he’ll have with the heart he has, whether he’ll make it to the Fontan (yes, but, how successful the Fontan will be is another story) or his first birthday even (yes, based on how his heart is now). And, I’ll admit, I’ve been thinking about whether it’s worth going through the Fontan if it will only mean he’ll need to get more blood products or that he may get sicker, which may compromise whether he’ll get a donor heart or how well his body will accept it.

The thing that makes dealing with this news so difficult is from the outside, post Glenn, Justin seems to be doing MUCH better. His color is rosying up, he smiles, plays, and is gaining weight well, and loves to eat! He’s been gobbling up his cereal like a little champ. The news about his valve being leakier just brought to reality what his outer appearance is only masking–how messed up and incredibly WRONG his insides are. No matter how much I want to PRETEND he’s this perfect little baby who will have this wondrous long life to defy all odds, I KNOW reality is he may not even have a decade.

But, you know what? I’m tired of being sad, crying inside, and feeling helpless. I made a decision this past Friday. I am on a mission to SPREAD the WORD about CHD (Congenital Heart Disease) on a NATIONAL LEVEL. The more the greater community is aware, the easier it will be for us to gain funding for research and obtain infant hearts for transplants. Tune in next time to hear about my pending campaign that is in the works with a friend I met on Learn About CHD. But, we need all of your help!

For now, please take the time to refresh your memory on how greatly CHD affects our children at March of Dimes.

All of you may already know of someone close to you who has a child with CHD and not even know it! I know everyone that I’ve opened up to has come up to me to tell me they have a family member or friend who has a child affected.

FACTS:

About 40,000 infants (1 out of every 125) are born with heart defects each year in the United States (1). The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.

This entry was posted on Tuesday, March 4th, 2008 at 2:41 pm and is filed under Heart Disease, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.