Thursday, October 18, 2012

Eli Update and a Request

This is a face of Congenital Heart Defects.

Eli has been getting some nighttime tube feedings again.  For a while he was waking up hungry in the night.  At first it was no big deal because that's just a normal kid thing...a sign of growing...a phase if you will.  But, as always, things are a little different with Eli.  His "phase" lasted for weeks and he wasn't gaining weight.  He would wake in the night and announce his wish list to his loyal servant (AKA Mommy).  The list was simple, "BOT!"  I'd give him his milk, he'd drink some, and then he'd fall back asleep.....for a while.  He was doing this multiple times a night.  At first I thought he was just trying to make me crazy/crazier, but then I realized what was really going on.  He was tired.  Duh, he is a heart baby after all.  He was too tired to stay awake long enough to drink enough to satisfy him.  That coupled with the fact that he hasn't gained weight (actually lost a little) since mid-summer led us to resume some nighttime feeds again.  He takes prescription grade PediaSure which has 30 calories per ounce.  His previous formula was only 24-27 cal/ounce and his milk is definitely less than that. 

So my point is that I'm up.  It's late and I'm tired but it's a great chance for me to have some quiet time, check my email and watch mindless late-night television.  Who needs sleep?  It's very overrated.  During these late-night computer sessions I've finally started doing some research about congenital heart defects.  I'm pretty comfortable describing and talking about Eli's defects, but I haven't done much outside of that in regards to CHD.  Some of the facts I've discovered have really surprised me.  I feel compelled to pass them along in an effort to bring more awareness to the issue of congenital heart defects. 

Some of you have heard of Lane Goodwin.  If you haven't, he's a 13 year old child who has cancer.  Children and cancer should never be in the same sentence.  Lane, who is from Beech Grove, KY, has made some national headlines with the "Thumbs Up for Lane!" campaign to bring awareness to childhood cancer.  When I logged on to Facebook tonight I saw that, sadly, Lane has lost his battle on earth and earned his angel wings.  My heart is breaking for his family.  It's a fear that every parent has, but we've been so close to losing Eli and face such an uncertain future that for us the fear of losing him is a little more realistic than for most families.  Facebook is flooded with prayers for the family, expressions of sympathy, and people commenting about holding their kids a little tighter tonight.  I love seeing the outpouring of support for this family.  Please keep them in your prayers. 

As I read the tributes to Lane and his family I have a recurring thought that I can't shake.  It's a statistic I've come across in my late night internet trolling.  Unfortunately most of us can name someone (or multiple someones) we've lost to cancer.  Even sadder is that most of us can name a child who has battled cancer.  Cancer awareness is everywhere.  Deaths from cancer are an all too often occurrence in our lives. 

It is wonderful to see the conversations and comments regarding the need for research and better treatments for childhood cancer...obviously it is needed.  Cancer is terrible, it does not discriminate, and it ruins lives.  Believe me, I get it and I hate cancer, just like everyone else.  But here's the fact that I've come across in my late night internet trolling that has been weighing heavily on me: 

Everybody talks about cancer, cancer awareness, cancer treatments, cancer research, cancer funding, etc.  I am not unsympathetic to the cause.  Cancer stole my dad.  I get it, I get the pain.  My point is that CHD kills almost twice as many children a year as cancer and yet it doesn't get nearly the attention as cancer.  We need more research, more funding, more awareness.  It starts here with the families affected.  MY family.  YOU readers.  Start talking about it.  Then tell one more person.  Keep talking about it.  CHD is a killer.  Right now in our house we have a snoring daddy, a snoring dog, two sleeping boys, a momma on a mission, and a killer. 

Again, please, please, please don't think I'm trying to take away from the importance of fighting cancer and other terrible diseases.  My point is that there are many, many battles going on and I'm trying to bring more awareness to the one affecting us most.  Also, we've been blessed with a lot of people who care about us.  We are so grateful for the support we've been shown since Eli's diagnosis.  I know that his diagnosis alone has opened a lot of people's eyes to CHD, mine included!  As time has gone by and we've accepted what is happening, we're ready to start doing more.  I have no idea what route that will be, but we're realizing the need to raise awareness.  CHD affects too many families, kills too many babies, and causes too many tears to fall to not have as much community awareness as cancer.

We've been fortunate to get to know a few other heart families.  Some we've met in person, some through the internet (thank you technology!).  Please keep these babies in your prayers:  Eli, Caleb, Madison, Davie, Nathan, Iceley, Natalie, Liam, Rylan, Braxtyn, Lauren (a 25 year old CHD patient!), and the thousands more we don't know.  Of course, please pray for Lane Goodwin and his family at this terrible time.  And please, start/keep talking about CHD.  I think you'll be surprised how many people you know have actually been affected.  I'll randomly post more facts about congenital heart defects and ways to help & raise awareness.  For now, thanks for following along and for all the support over the past couple years.  We rely on your kind words more than you realize.

1 comment:

  1. Thanks for sharing! We appreciate you including Madison in your prayer request!We will continue to keep Eli , and his tired mom, in our prayers! I know how exhausting it is to be up at night, we are off and on with night feedings ourselves, but you are an amazing mom and God will continue to bless you for taking such wonderful care of sweet Eli!