The writing bug always seems to nip at me in the wee hours of the morning. It would be fine if I didn't have a sweet little boy who knows nothing of the term "sleeping in." This post may not be what it would have been, had I let the urge to write overtake me...but, we'll see.
I know I've only posted a couple of times here about congenital heart defects. I guess the main reason is that I do a lot of updating on Facebook. Not about us, mind you- Ethan is doing just fine and there shouldn't be anything to report until we see Dr. Thomas in the summer (and that is a routine check up)- but because we're now part of a "family." I like to keep everyone in the know about "our" heart babies and kiddos.
It boggles my mind, even though I know the statistic "1 in 100," but it's crazy how many people we know now who have children with CHDs. You really don't realize just how far "into" it all you've gotten until you feel like shouting from the rooftops at the slightest bit of good news. Seriously. This happened to me just this week. I follow lots of little ones' stories on Facebook, Twitter, and through friends of our support group. There have been so many highs and lows and, sadly, a few losses. It seems like, lately, there was bad news after bad news (but only after GOOD news- that's where it gets ya. You finally see some light at the end of the tunnel and then someone reverses the tracks and you're sent careening somewhere entirely different for a while!). Well, after this, at least two families I know of got some really good news on their kiddos' status and that was enough to send me over the moon! Actually, make that three. A precious little boy was born, feared to have HLHS and it ended up he had an obstruction in his aorta (of the three outcomes the doctors prognosticated, this was the least invasive to repair). He had his surgery yesterday and is doing quite well. His parents literally witnessed a miracle in their son. I can't fathom the joy they must have felt- but I also know the fear of letting your baby go into the arms of the waiting anesthesiologist to take him to the OR to have his little heart operated on. What a roller coaster. Join with me in praying that their ride stays smooth and they are able to get home very soon.
I'm not sure where this blogsite is going to go. I don't know if I should keep it "random" or if I should just dedicate it to "heart stuff." My life IS pretty random, but the "heart stuff" will always be part of it. I guess we'll just have to wait and see, huh?
By the way, speaking of "heart stuff," Congenital Heart Defect Awareness week is coming up! Please be thinking of how you can give back to those who save tiny (and big) hearts. I have some ideas so, if you are needing help, look to this blog or shoot me an email or something. Our support group (Amazing Little Hearts) has some activities planned for those of you in the DFW area (including a blood drive!! GIVE BLOOD!) and I'm hoping to get something going with our very favorite pizza joint here in McKinney (as far as a fund-raiser goes).
Our friend, Matt Hammitt of Sanctus Real, has just completed a cool project filled with songs inspired by his family's CHD journey with their little heart warrior, Bowen. I'm so excited about this! I'm not sure when everything will be ready for release, but you can bet your sweet bippy I'll be blasting the news all over the Internet when I find out. His little boy is gearing up for his 2nd open heart surgery in March. Please check out Bowen's progress here. You can find out more about the band at www.sanctusreal.com.
Prayer requests:
Baby Annabelle- she will probably be listing for a heart transplant soon. This isn't the path they expected to travel down, but they are doing what they can to adjust and prepare.
Baby Nathan- what a tough little dude! He's trying so very hard to get out of the hospital before he has to have his 2nd open heart surgery (the Glenn). Things just keep cropping up to keep him there. Pray that he can get outta dodge soon!
Baby Caiden- miracle boy! Pray his recovery from his OHS yesterday is speedy and smooth
Baby Garon, who just turned 1 year old along with his twin, Aaron (BOTH boys have Tetralogy of Fallot)- pray that this little man can grow strong and get home to be with his brother. He's had lots of ups and downs lately.
Baby Bowen- his Glenn surgery is March 2. Pray that his blood sugar levels stay stable and he stays nice and strong and healthy between now and then.
Baby Hudson- had his Glenn today
Dylan- had his Fontan today.
Dr. Mendeloff- he is the surgeon making all these hearts whole (except for Bowen and Annabelle, who live out of state :-)).
Know that there are so many I haven't mentioned here- the pediatric cardiac unit is at capacity as we speak. Pray for these little ones and their families.
Thank you!!
