Day 77

Holden is still about the same today... I had thought we might be on an upswing after last night, but no such luck. He was awake and pretty happy for a little while last night, and some friends who visit every Saturday finally got to see him with his eyes open and playing. They've been patiently waiting to see him like that! He went back to sleep before they left, and woke up crying and in pain again... That continued through the night, and into today. The doctors still don't know what's going on with him, and it's beyond frustrating at this point. We don't even know if all of his symptoms are related- He seems to have something going on with his digestive system, although we don't know what. His chest xrays look pretty wet, but we don't know why. (We're going to put him back on IV Lasix, and see if that helps dry out his lungs at all. He's already on high doses of PO diuretics, but they're not working like they should.) There's a reason that his oxygen requirements have increased, but we don't know what that reason is yet either. In short, we don't know much of anything. We've consulted with the GI doctors, and they're going to run a few tests tomorrow to see if they can find anything. We're also going to consult with the pain management team and hope that they have some new ideas. We know that it's not pancreatitis, so that leaves it wide open... Please pray for guidance for his doctors, and pray that we can figure out what's going on with him before he slides back any more!

And to change topics completely, CHD awareness week is coming up in February. Before I get on my soapbox, I'd like to share a few facts about Congenital Heart Defects.

• Congenital heart defects are America’s #1 birth defect. Nearly 1 in every 100 babies is born with a CHD.  
• Congenital heart defects are the #1 cause of birth defect related deaths.  
• Congenital heart defects are the leading cause of all infant deaths in the United States.  
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.  
• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• More than 50% of all children born with congenital heart defect will require at least  one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• Twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research.
• Of every dollar the government spends on medical funding and research, only a fraction of a penny is directed to CHD research. 

I try really hard to stay off of my soapbox as much as possible. However, many people aren't aware of the facts, and most believe- as I did- that something like this will never happen to their baby. Why didn't I know about any of this when I was pregnant?? Prenatal detection can mean the difference between life and death for your baby- literally- yet I was completely oblivious. I worried about all of the other diseases and syndromes and defects that we're all aware of, but I had no idea that my baby could be the 1 in 100 born with a CHD. You rarely see these heart babies on billboards, or websites asking for research funding, on the covers of magazines, or in the news stories about infant medical struggles. Why is that? Why are these kids being forgotten? Why doesn't anybody know all of this until it happens to them? Probably because nobody shared the information. More can be done- More should be done when it comes to saving a child's life. More awareness, which creates more funding, which pays for more research. The best thing we can do to advocate for our babies is to spread awareness about Congenital Heart Defects- Get educated, and educate others.