Wednesday, April 13, 2011

Fee-beyo!!!

For those of you not up on toddler lingo, that's "To infinity and beyond!"  It's one of the top phrases to come out of E's mouth these days.  He's usually flying Buzz Lightyear around when he says it but there have also been several characters (not just Toy Story specific!) to take flight in this household.  :-)

Yes, saving those Burger King toys from the early 90's has finally proved useful!  He has carried Buzz and Woody, well, to infinity and beyond, it seems!  They go to church, the store, the bathroom (following me, of course)...everywhere that little boy goes, they go.  Poor Buzz is showing it.  His space suit is a little grayer these days.

We found a book at Lowe's the other day (yeah- Lowe's.  Who would have thunk it?) that had most of the Toy Story characters tucked away neatly in the back of it (small plastic ones).  It even came with a "play mat" (laminated poster of Andy's room).  Oh my goodness!  He has carried those tiny things around with him (some are too tiny to trust him with and have been put away) almost as much as his two big guys.  It's so cute to see him setting the toys up and talking to them (who knows what he's saying) until he jumps up with one (or two) in hand and yells, "FEE-BEYO!!" LOL.  Love it!

We are full into the "terrific twos." Hehehe..yeah.  He's such a strong-willed child!  He tempers that by being the sweetest, huggiest, "I love Mommy/Daddy-ist" little boy, though!  Because he and I spend most of our days together, I miss out on the greeting he gives to Dillon when he gets home ("HI Daddy!" and runs to Dillon to be swept up in his arms).  The other night, we had his aunt Misti come over and watch him while we went to dinner and ran some errands.  I was the first to walk thru the door and it was so cool!  I heard this, "HI Mommy!" and then he ran to me and hugged my legs (b/c I had my hands full).  Hugging my legs might have been sweeter than wanting me to pick him up...it was the perfect little welcome that I needed.  I LOVE THAT BOY!

Bedtime.  Oh, how I long for you and loathe you. Most kids, I've heard, get to bed by 8pm and sleep until 8am.  Some, it's rumored, even have to be awakened by their parents to get going in the mornings.  Our kid didn't get that memo, apparently.  Yes, we did get a taste of the good life a few days after the time change.  But it was short-lived.  He was still going to bed at the same time, but he was waking up TWO hours later.  It was so freaky at first that we would end up going into his room to make sure things were ok (despite having a video monitor).  Most mornings, we found that he was already awake but just not calling out for us.  It was bizarre yet lovely.  Oh, and super-sweet, too.  One of us would go up (around 9am) and open his door and get a sweet, sleepy-faced two year old who was so happy to see us, he would simply say, "HI Mommy/Daddy!" and give us big hugs.  Happy.  HAPPY!  Where did this child disappear to in the past week?  It started with him waking up at 8:45 one morning.  The next, 8:30.  Dillon kept saying it wasn't going to last- that the sleeping in was a fluke.  I didn't want to believe it.  The next morning? 8:00.  NOOOOOOO.  Sigh.  Today? 7:10.  We're back to the way it used to be. He gets so distraught with having to go to bed. He says, "Night night, couch, Mommy," indicating he wants to sleep there with me.  I'd love nothing more to snuggle with my boy, but I want him to develop independent sleep habits.

We are going to be switching pediatricians soon, not because something happened, but because we live too far away from Dr. Myint's office.  Our current pediatrician (as in, the one we are switching to) is 5 minutes from our house.  Yeah.  With this kid, 5 minutes is GOOD!  He is already proving to be a boo-boo magnet (but is such a tough kid!) that I figure the next time a doctor is needed, it's going to be something like that and NOT heart-related or illness related.  It's good to have someone close by and the entire staff at that office is amazing.  We just need to convince E of that!! ;-)

Heart stuff.  Well, that's going well, as far as we can tell :-).  We see Dr. Thomas in June. It's been almost a year since we've had his heart checked on.  I can't believe we made it that far!!  WOW!  Please pray that things will be hunky dory and that Ethan will do well for the EKG and echocardiogram.  Neither are painful but both require him to be still (and not cry too much).  Yeah.  I just hope it's never bad enough where he has to be sedated.  He already wigs out just when we want to weigh him.

We are trying to get him out and about as much as possible.  I know that his mind is like a sponge and I want him to learn, learn, learn!!!  We wanted to take him to see Thomas the Train when he was in Grapevine a couple of weekends ago but it happened to be the same weekend as our heart walk (to raise $$ for CHD research) and we were too pooped.  I felt bad but then realized that he'll never know what he missed out on.  Still, I wanted to "make it up" to him, so we (me, Dillon, and Dillon's dad) took him to the aquarium in Fair Park this past Sunday.  We rode the "train (DART rail)" and he thought that was pretty cool (sans all the stops).  He was ready to get off each time the train would stop (and you don't realize just how many stops it makes until you ride with a 2 year old!).  Once at the aquarium, it was hard to keep him contained.  Our way of looking at the fish was definitely not his way.  At all.  One would think you'd start at the first tank and methodically make your way around.  Well, this kid was like a pinball and he wore his daddy out!!

There were two really cool experiences we had while at the aquarium: seeing an octopus and petting stingrays.  Yes, we saw sharks and albino alligators and teeny, tiny seahorses but the two things that really stood out was the creepy, red octopus and the velvety-soft stingrays.  They have this exhibit next to the octopus/starfish tank that has rubber octopus tentacles hanging out so the kids (or adults!) can feel of them and pose for pictures, etc.  Well, Ethan wasn't too sure about them until Daddy and I got them and pretended that we were gonna get him (tickling).  After that, he was grabbing and pulling and swinging them around, happy as a clam.  We saw the tank nearby and a little flash of red, so we squatted down to investigate (actually, I think E had pointed out the starfish).  Well, here swooped/swished the biggest, creepiest octopus EVER!  It was so neat to watch it move across the glass and make itself pretty much invisible in the darkness of the rocks.  Even though the glass was made where you could really lean into it, Ethan chose to keep his distance.  The stingrays were VERY cool.  I admit, I was a bit freaked at first.  They'll swim right up to you as long as you keep your hand still.  One of the workers told me make a fist and a hoard of them flocked to it (kind of freaking me out).  She said it makes them think I have food.  Thanks, lady!  I don't want to be taunting the very species which was the death of one Steve Irwin, the craziest crocodile hunter to ever grace this earth!  But, seriously, we were assured that these guys were harmless.  Ethan was content to play in the water (he'd get them out quickly if he was paying attention to the stingrays swimming up to check him out) and we kept warning him not to splash.  He delighted in the fact that I fed the stingrays a little fish and a piece of shrimp.  I think he was more mesmerized by the dead minnow in my hand than the creatures swimming around him.  He did end up touching one.  He left his hand in the water and was listening to something his Grampy was telling him and one came up and brushed against his fingers.  He jumped!  It was cute!  All-in-all, it was a great way to spend a Sunday.

Well, blogger friends, I have written a novel.  I need to update more so I don't have so much to say.  Yeah, right.  I always have a lot to say!!!

UPDATE on Annabelle.  She got her new heart this week!!!  Please pray for her as her body adjusts to living with a WHOLE HEART instead of half of one (she had HLHS) and for the family whose baby gave her life by losing his/her own.

NATHAN is home and doing well!  He needs prayers for gaining weight, fluid balance, and being able to wean from his vent settings (trach).  I know there's something I'm forgetting..

Please pray for all the heart babies- not just at Medical City, but around the world.

Thanks for hanging in there.  I promise to do better.

Amy

Friday, March 11, 2011

Itzabouttimeforanupdate...

dontchathink?

Wow.  Our little charmer is growing up so fast!  I can't believe some of the things he says and does these days!  One thing we are having issues with is him sneaking upstairs to the playroom (while we are downstairs- distracted- like good parents ;0)).  I'll usually either hear him stomping around on the landing between the two flights of stairs or hear his train going after he's successfully made it to the top.  I've reminded him that he needs to ask first so we can watch him go up the stairs and make sure he doesn't fall and get boo boos.  His prompt response is "sawwy" in the uber-most pitiful and repentant voice ever.  He'll come give a hug and a kiss and then he's all happy again as he hops away to play.  If caught in the act before too many stairs are climbed, he'll come over, say "Hop up" and reach up for one of us to scoop him up.  Then, he promptly gives a kiss and a hug and then another kiss for the cherry on top and says, "Peeeeease!"  Ok.  What CAN'T we give him after that cuteness???

I try to jot some of the above examples of sweetness and hilarity into my notes on my phone, just because I want to remember the tiniest thing from when he was little.  I mean, I was just thinking today about how it's so very hard to remember what it was like when he was a baby.  These thoughts came to mind as I was staring at the back of his cute little boy head while he napped, snuggled against me, on the couch this afternoon.  As I lightly played with his hair, I thought, "Where did this little kid come from and what happened to my baby?"  It was then that I realized just how hard it could be to recall things from the past 2 years.  Such a short span of time!  What will it be like when he's 10? 20? 30? How in the world will I be able to cling to all these precious memories?!?!  It saddens my heart- though each day there is something new that makes me smile or warms my heart.  It seems like for every new memory, 10 are wiped out!  Maybe it's me and my "hard drive." LOL.  I'm old.  This is why we blog....and why I need to blog more!!  Argh!!

Right now, I have three pictures of my little man staring back at me as they are propped up on the front of my computer.  Ethan is probably 4 or 5 months old in them.  Looking at the pictures, I remember where we were and sort of what we did that day but, beyond that, it's hard to remember Ethan actually BEING 5 months old!  One picture is of my dad holding him.  Those photo ops didn't happen often as, each time we'd get back for a visit, his mind and body would be slipping more and more away.  It went from me being a little nervous about him holding our little squirmy worm to him not being able to hold him at all b/c he didn't have the strength.  The pic standing before me just now is so special, but it's hard to remember that there ever was a day where Dad COULD hold him and interact. Man, I'm thankful for pictures!!!!  I can't wait to show Ethan tomorrow and hear him say, "PaPAW!" in the super-excited way he exclaims things he's discovered or notices.  LOVE it!

I haven't blogged since my dad died, have I?  Oh.  Man...it's been a while, huh?

I kind of thought he would live for a lot longer.  I know things were looking kind of grim, but he's one of the toughest cookies I've ever known and VERY stubborn (I had to get it from somewhere, right??).  I just knew he'd tough it out another 5-10 years just to prove people wrong.  Ah, but his heart was with my mom who left us in 2003 and, well...once your heart goes, your body is soon to follow.

Dad passed away on January 25, 2011 at 6:25pm.  He had been batting urinary tract infections and had just been released from the hospital a couple of days before.  It happened so quickly- questionable behavior around 12:30 that afternoon and then an ambulance ride to the ER.  His lungs were filling with fluid.  His body was shutting down.   It happened quickly.  It happened peacefully.  I wish I could have gotten there in time.  I had gotten word he was in the ER and that I should start thinking about coming home sooner (we had planned a trip for later in February).  As things declined, we hurried to pack up the car (planning to drive through the night) but dear old Dad just couldn't wait any longer.  I'm 100% ok with that.  He needed the rest and release.  I just hate it that he never got to hear Ethan say his name.  We drove through the night, anyway, just so we could get there.  It seemed like the thing to do.

Ok.  What else is going on around here?  Ethan knows most of the alphabet.  He absolutely loves reading letters and will find them EVERYWHERE! He gets SOOO excited!  It's so funny.  It seemed like he wasn't ever going to get it.  We've had his Alphabet Train since before he turned 1 and I used to sit in the floor and call out the letters on each block as we stacked them.  Well, he wouldn't even slow down long enough to care and just delighted in destroying my stacks! It got to where if I thought about it, I would point out letters here and there.  It really helps that he watches shows like "Word World" and "Super Why."  I guess there's just something about a cartoon character that makes learning a lot more fun than listening to Mom. ;-) My thing is, he knows the letters in their capital form.  How in the world do you teach them lower case letters?  He sees lower case b's and d's and calls them "P!"  ;-)

From a health standpoint, he seems to be doing great.  He's still a grazer as far as eating goes, but he will pack away the strawberries and eggs if given the chance.  He's not as big a veggie eater as he used to be (why does that happen??) but I'm just glad he eats!  He burns it off as fast as he takes it in, though!  We go back to see Dr. Thomas in June.  Yes, June.  It's been FOREVER since we've gotten a peek inside that little ticker and we are fighting the urge to see if we can move his appointment up!  The ol anxiety is starting to creep up.  I mean, he looks and acts GREAT but he was looking and acting great the day they found the scar tissue in his pulmonary artery and told us he'd need surgery.  Ah, the woes of a heart parent!  Man, though!  After meeting so many heart families in the past two years, we consider ourselves very fortunate that this is all we are worried about.  So many babies and kids have such uphill battles to face and some, sadly, have lost.  You rejoice with the milestones but grieve (hard) for the losses.  It hurts.  It takes a big toll.  Sometimes, I wish I'd never heard of CHDs.

Well, I think I've written enough for a month's worth of blog posts in just this one so I had better go.

Heart hugs and prayers for our friends:  Nathan (hopefully going home soon after spending his first 9 months of life in the hospital), Bowen (recovering from his 2nd open heart surgery and doing great!), Garon (Tetralogy of Fallot- having a tough time), Kyle (post-Glenn and trach), Thomas (upcoming surgery), Caiden (upcoming surgery) and Annabelle (awaiting her sparkly new heart).  If I have left someone out, I apologize.  We pray for these little ones daily.

If you're in the Dallas area, come walk with us April 2nd as we work to raise funds and awareness for CHDs!  It's $20 to walk (per adult).  If you can't walk, give :0): http://imhwalkforchd.kintera.org/ldhs/ethankyle  Our team name is Heart Budz.

Much love,

Amy

Thursday, January 13, 2011

From my heart to yours..

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!!