Pulling on my heart strings..

Not sure where to start with this post.  Just feeling a bit "blah" and worried.  We never asked to be in the "heart community." It's not something one really strives to be in.  You don't choose it.  It chooses you.  Today, I wish it hadn't.

Don't get me wrong.  I'm thankful for the lives the Lord has chosen to cross our paths with.  We have made some dear friends through Ethan's diagnosis and hospital stays.  Ethan is doing GREAT!  But, we are part of a family now- one greater than the typical family tree could contain.  When the surgeon delicately took a scalpel to Ethan's tiny chest, our lives became intertwined with families the world over.  Actually, I'd say when the pediatrician called to tell me of what they saw on Ethan's echocardiogram the MORNING WE WERE TO BE DISCHARGED was the moment we became card-carrying parents of a kid with a "CHD." "1 in 100?"  We had no clue how many families were going through or had already been through such devastation.  This was our baby!  Our (seemingly) perfect baby boy!  In the words of many, "How could something that looks so perfect be so sick?"  It was almost like a cruel joke.

Through our journey, we have learned so much.  Firstly, we know a lot more about the anatomy of a heart!  Secondly, we know that we are lucky.  Ethan's defect(s) could have been so much worse.  His outcome?  Twenty or thirty years ago, there wouldn't have been much hope.  Send him home to peacefully pass in his sleep.  Have any of you watched "Something the Lord Made?"  WOW- so thankful we are living in a time such as this where teeny tiny hears being operated on is nothing new (though still challenging and techniques/innovation change day to day).  If you saw him running around, you would never even know he'd had his heart cut open and worked on, TWICE! He's a madman!  Just tonight, he was doing almost back-dives off the arm of the couch (ok- back dive- singular! Once I saw him do the first and nearly had a heart-attack myself, I nipped that one in the bud!).  Other families?  Not so fortunate.

While this community is great for the times you need support, it's also tough because every day, you read a story (or more) of a little one who may not make it (or didn't).  You are reminded that life is precious and not fair.  You find yourself constantly pacing a virtual "waiting room" while checking for blog updates or Twitter posts or Facebook statuses just to make sure everything is ok.  You hug your own "heart baby" tighter and sometimes wonder if everything truly is ok beating inside that tiny chest.  You pray and ask God's comfort for things you don't quite understand and marvel in the strength He's given to you and others to get through things like this.  You cry.  You pray.  You cry some more.  You sometimes even get mad.

Tonight, I'm approaching the throne on behalf of Bowen, Ewan, Gavin, Greta, Jamar, Joshua, and Nathan.  All of these awesomely precious kiddos are fighting their CHD (or complications from various procedures).  Ewan and Joshua are truly in the fight for their lives.  Please pray God's peace and healing over them as well as His comfort for their families.

Thanks for reading.

Lazy Sunday!

Hola,

Well, since there's not much going on today, I thought I'd stop by and say hi.  Hi.

We've had a pretty good day.  Got a free lunch!  How?  Well, there's a new taco place going in near our Fuddrucker's.  The other day, as we were going to grab a burger, we saw people milling around inside.  Dillon went to see if they were open but was told it wouldn't be until Monday (as in tomorrow).  Today, we found ourselves heading back to Fuddrucker's (haha) and this time, we saw people sitting down and eating.  We figured they might be having a "soft opening," so we moseyed on in.  As we finished up placing our order and Dillon got ready to pay, we were pleasantly surprised to find out they are training their staff and our meal was free!  All in all, it was pretty good.  The name of the place is Fuzzy's Taco Shop.  They are a TX chain, I believe (started in Ft. Worth).  I had the grilled fish sandwich and Dillon had the combo fajita plate.

After that, we went to visit the heart unit at Medical City Dallas Children's Hospital.  Ethan conked out en route, so he and Dillon stayed in the car.  I was going to drop off some supplies to one of the moms and say hi to whoever else was there.  I got to peek in on one of our cutie heart babies and he was wide awake!  Oh, so handsome!  I heard he is doing really well and if his tummy will process full feeds, he can go home soon!!  Another one of our kiddos is recovering from a tracheotomy.  He has to stay another month (!) and then will transfer to another nearby hospital for more training for Mommy and Daddy.  It's tough for both the cuties I mentioned b/c their family is from out of state.  I can't imagine what that's like!

A new "heart baby" came into the world yesterday.  His name is Gavin.  He is currently in a hospital in Tennessee and I know his parents would appreciate your prayers.  He was born with TGA- diagnosed AFTER he was delivered!  Needless to say, his parents were in shock, just as we were when Ethan was born.  Praise the Lord the doctor caught it early so things could get crackin.

Lastly, little Mr. Bowen is giving his doctors, nurses and parents a run for their money.  A victory was celebrated when they took him off the ventilator but then the ol "one step forward, two step back" booger reared it's ugly head and, last I heard, he might have to be re-intubated.  Please pray that's not the case and that there is no where to go but UP from here on out.  As I said on his mom's Facebook wall, it's always frustrating when things finally start to go well with the heart (the reason they are in there in the first place) but then other things creep up.  UGH!  It's like there is no rest for the weary!  Please keep the Hammitt family in your prayers!  www.bowensheart.com

So, in closing, pray for:

Gavin (newborn- TGA)
Jamar (recovering well- hope they can get home soon)
Nathan (post-trach, doing well.  Long road ahead but hope it goes by fast)
Bowen (post-vent, hope he doesn't have to go back on)
Greta (didn't mention her, but she is one of Ethan's heart buddies who had a setback after her release from the hospital and is back in- but due to get out of there soon)

Thanks!

Amy

I need to get back to blogging! Holy cow, it's been waaaay too long! I've signed up to be a blogger/reviewer so I hope that will spur things a bit!

We are doing fantastic! For any strangers to this blog, we now have a little boy named Ethan. He is the love of our lives! He's growing and doing things each day (each moment of the day!) that completely rocks our world and gives us such satisfaction as parents. I can't wait to see what milestones he'll achieve next!

He had a rough start- born with a couple of heart defects (TGA/VSD/ASD). Yes, that was a surprise to all of us but Ethan handled it all like a champ. Today, you would NEVER suspect he ever had an issue unless he lifts his shirt and shows you his scar. He's 21 months old now! CRAZY!

We are trying to sell our house and get something that suits us a bit better. Dillon needs an office (with a door!) for when he works from home. We both currently have our computers in the dining room. Not good for conference calls! Ethan seems to sense the exact times Daddy is busy to try and get him to play.

I'm going to go ahead and close this as it has taken the better of two days for me to even finish it! Let me close with a request.

Matt and Sarah Hammitt's newborn son (he's currently 5 days old) is having severe complications from open heart surgery. He was born with a condition called Hypoplastic Left Heart Syndrome. He did great through the surgery yesterday but hit a few speed bumps in recovery and had a really rough time last night. He is currently on life support. Matt is the lead singer of Sanctus Real and I know many of you probably know his music. Visit www.bowensheart.com to learn about his heart- Bowen.