Thursday, July 5, 2012

"So... how is Caleb doing?"

At least once or twice a week, I run into someone at, say, Kroger who chats with me for a minute and then, seeing Caleb grinning and trying to climb out of the cart and take a box of cereal with him, cautiously says, "Well he looks healthy!  He must be doing great... right?"  People always say this while nodding their head and looking at me expectantly and I can't tell if they're trying to encourage me or encourage themselves.  It actually means a lot every time someone asks and helps me feel like we're not alone and people really care... but I struggle between giving people the answer they probably want to hear standing in Kroger versus the real answer that lingers in our house on a daily basis.  So how is Caleb doing?  Well let me tell you the not-best-suited-for-Kroger answer.  Caleb is doing really well right now.  What that means is that we've had no unexpected events or changes in his health lately.  He has actually had pretty good oxygen levels this summer, with his sats (oxygen saturation) in the high 70s to low 80s.  He is often pretty blue, especially his lips and his hands and feet, and that's pretty typical for a kid with his heart condition because of his funky circulation.  Developmentally, at 17 months he is just now starting to take his first steps and he's quickly making up for lost time.  He crawls like a mad man, climbs on anything, and gets frustrated when you tell him, "Get down from that Caleb, you're not big enough to ride on the lawnmower", as if he defies your logic and will prove you wrong.  The child has a generous dose of determination.  In all other areas of development, he's a perfectly normal little guy.  He's starting to talk, earlier than Jonah did, and his favorite word is "Cheeeeese", as in "take my picture, please".  He's says "daddy" all the time and "mommy" only occasionally, just to show me that he will say whatever dang words he chooses.  

You may be thinking, who wouldn't want to hear that?  Well, because that's not the full answer.  The full answer is, that's how Caleb is doing... right now.  I realize that many people think because he's had surgery, his heart problem has been corrected.  Actually, there is no "cure" or "fix" for Caleb's heart condition.  As our cardiologist explains, everything we do for Caleb, medicine or surgery or whatever, we are trying to make his heart as strong as possible for as long as possible.  And for how long that will be is completely unknown.  The thing is, Caleb's heart has to work much harder than everyone else's does to pump blood.  That extra work puts stress on his heart that, over time, can weaken it.  At our last doctor's appointment, which was a positive one, Dr. Kumar said, "He's doing well right now, but of course after 5 or 10 years of his heart working this hard, we just don't know what shape it will be in".  Ever since Caleb's last surgery, his heart has been weaker than before.  The doctor calls this "diminished heart function", or heart failure.  There's not much they can do for the heart to make it stronger.  He is on medicine, but so far the medicine has made no difference.  Fortunately, he only has a mild degree of heart failure, and we're really thankful for that.  It does, however, change his long-term prognosis and put him at greater risk the older he gets.  There's just no way of knowing how his heart will continue to hold up as he ages.  

Caleb will have one more surgery sometime in 2013, probably next summer.  This surgery will improve his oxygen level, but probably not his heart function.  After that surgery, his heart will be as "fixed" as they can make it.  So far, Caleb has done great for a heart baby.  He's healthy, relatively speaking, and developing normally.  His energy level is pretty good and he's happy and growing.  What we're learning is to be excited for that and not really think ahead.  

Why am I telling you all this?  I promise it wasn't to bum you out.  It's because I don't ask people to continue praying for us as much as I should.  Trust me, I would rather just not think about his heart condition and unknown future, and so I assume nobody else wants to think about it either.  But I know that's not true and that people want to know so they can support us and pray for us properly.  I actually shared this stuff with some family last week who then said, "Oh my gosh, I didn't realize all that.  Are you guys dealing with all this ok?"  And the honest answer is yes!  We really are learning how to live with this and feel like we're as normal as possible.  Still, our hearts are permanently softened, and the simplest thing like seeing St Vincents' NeoNatal Ambulance flying down the highway makes us stop for a minute, shed a couple empathetic tears, acknowledge that pang in our hearts and then move on.  We are forever changed, Daniel and me, into different people than we were two years ago.  But honestly, the change in us has been really good.  We are thankful and joyful over the smallest life experiences and that makes life a whole lot of fun, when you enjoy every little bit of it.

It would mean so much to have you continue to pray for us and encourage us.  Yeah, we're pretty tough and we trust in Jesus, but we still live with the reality of a sick child on a daily basis.  The love of our friends and family keeps us going at times, and today I'm letting you know we still need it.  Thanks for walking with us through the crazy life God chose for our family!