Because I'm up way past my bedtime but wanted to update this..

I'm copy/pasting what I just wrote on Ethan's CaringBridge page :-)


I can't believe 2010 is coming to a close already!  It's been a great year for our family, despite my father's declining health/battle with dementia.  If you think about it, please pray for him and those back in Alabama who are caring for him.  I miss the "good ol days" when the worst thing that happened was a lost set of teeth.  At this point, he's not able to get up out of a chair by himself.  

Wow.  Sorry for starting off with such a sad paragraph there!  It's just that, I was reflecting on "our" year (as far as Ethan's heart health) and kind of looked past all the issues with Dad.  I didn't want to leave it at "It's been a great year..." without including him b/c, while it's been a good year out here in TX, it's been kind of bad at times back home.

Soooooo...

We have had a big December!  Ethan turned two, as you know, and we closed on a new (to us) home in the great city of McKinney.  Since he's two, we could have gifted him the stairs in our home for Christmas AND his birthday, because he sure does love tromping up them and scooting (on belly or bottom) back down!  Santa who?  No, we couldn't do that!  While we didn't get a great photo-op with Santa (the two pics we have, I'm practically in Santa's lap with Ethan clinging to me for dear life!), I tried explaining the wonderment of belief in preparation for next year and E did score some great loot from the jolly fellow clad in red.  Next year should be a hoot!!

We had our annual Amazing Little Hearts holiday party on the 11th (the day after movers came and moved most of our stuff from our old house to the new, leaving my inlaws to figure out the rest- bless them!) and it was great, as always.  It was really neat to see "new" families with their babies OUTSIDE the hospital- it's hard to believe Ethan was ever that small!  It's also great to be able to see Dr. Mendeloff and Dr. Thomas in a more relaxed setting.  Dr. M is still on level with Santa as far as popularity!  There is always a long line to say thanks, share a hug,  or snap a quick photo.  We love our doctors!

Christmas Day, we joined the rest of our ALH families who could make it and took food to the Congenital Heart Surgery Unit at Medical City for staff and families to partake.  What a hit!  I have never seen so much food, and so much variety!  We had traditional dressing and the normal veggies, ham and rolls, TAMALES (homemade!), HUMMUS, stuffed grape leaves, various salads and yummy desserts.  We ate well and the nurses and staff were shocked at the spread we left for them.  Our families are awesome!  It's great to give back, especially after you've spent your baby's first Christmas (and New Year's) in the hospital.  

One thing we can be thankful for through all of this (and all the ups and downs and losses I've seen in the lives of families around me, whether in person or via the Internet) is that we don't take anything for granted with Ethan.  Sure, he tries our patience and sure we get onto him for different things but, we love that little boy more than anything on this earth and we know how special he is and how lucky we are to have him with us.  He is definitely a firecracker but tempers that with amazing charm and sweetness.  One of my favorite things he does lately happens at bedtime.  Dillon and I have a routine where we both help get him changed and his teeth brushed and we both take him to his bed and let him "jump" in (after we've had our hugs and kisses).  We then say our prayers and tell him good night.  Used to, that would be enough and it's finally OUR time to just do whatever.  For a while now, he's been calling out for us, usually with a "Yayayayayaya!"  It is comical to make him wait and see what other forms of "Yayayayaya!" he comes up with.  Every once in a while, he'll throw in a "MAMA!" or "DADA!" but it's mostly, "Yayayaya! Ya ya!  Yayayayayaya!"  Anyway, one of us will go in and he'll immediately lay down, expecting to be covered up and then we leave again.  Now, when I go in there, he'll wave his hand towards the ground (asking me to sit in front of his bed), stretch out his little arm and say, "Hand," wanting me to reach thru the slats and hold his.  This means I'm going to be at least 5-15 minutes in the hole on my "me" time but do you think I sternly say no and tell him to go to sleep?  No way!  I know these days are short and I love the feeling of his little fingers wrapped around my index finger (and sometimes my thumb if he's really ambitious and gets me with both his hands!).  

I sit in front of his crib, stroking his little knuckles with my thumb and try and remember what it was like when those little fingers only took up 1/4 to 1/2 of my finger.  Where has the time gone?  My baby boy is becoming more of a big boy every day and it pierces my heart yet warms it at the same time.  I love him with every fiber of my being and promise him every night, during the sweet time when he clings to my finger for all it's worth, that I'll not take a minute of our time together for granted, all the while asking God to help me be the mom that Ethan deserves.  I pray for Dillon and me.  I pray for our family.  Sometimes, I sing "Twinkle, Twinkle, Little Star" or make up some other song that when I'm done, I wish that I could remember the words.  I know these moments won't last forever.

Thank you for taking the time to stop by and read this.  Thank you for joining with me in praying for families with heart babies/kiddos and those others who have kids who are facing serious health issues.  Ben Clough and Bayleigh Phillips come to mind, as well as those who just spent their first Christmas without loved ones or lost loved ones (even yesterday- rest in peace, Susie).  May 2011 bring you many blessings and that you will take the time to stop and appreciate life and the good AND bad around you for it's through the bad we learn to savor the good.  God loves you.  He has a plan for you in all this crazy madness.  

Happy New Year!

Amy, Dillon and Ethan 

LifeDiscipler

Recently, I received a neat little gadget to test out and review.  It’s called the LifeDiscipler (www.lifediscipler.com).  Some of you may have seen it in the most recent Family Christian Stores catalog but for those of you who have never heard of it, rest easy.  It’s the new kid on the block in the land of electronic Bible gadgets.

The LifeDiscipler looks like a small mp3 player.  In fact, the “main button” underneath the screen resembles the wheel of a certain “fruity” mp3 player some of you probably own.  It’s not quite as advanced, but it gets the job done and lends some familiarity and intuitiveness.

One thing I noticed right away (and the developer pointed it out in the letter he enclosed with the product) is that the LCD screen isn’t backlit.  This saves the consumer quite a bit of money in the long run but, for this iPhone addict, it was hard to adjust to.  I have a Bible app on my phone that I use a lot and I also read books via several other apps.  The fact that I’m used to such a larger (brighter) screen kind of was a handicap to getting used to the LifeDiscipler.  However, the makers weren’t thinking of only the techies when they developed the product.  They have strived to make it as accessible as possible and as affordable as possible.  Just know that you will need to be in a well-lit area to properly view the screen.  Also, if you want to share (have someone look on with you), you’ll be better off just passing it back and forth.

All this talk and I haven’t really told you what the LifeDiscipler does!  Well, it’s kind of like a concordance with a few more bells and whistles.  Turn the gadget on (easy to find on/off switch on the back) and after the logo appears, the main menu greets you.  Without reading the instructions, I was able to navigate the menu items without too much difficulty.  It took a quick glance to see what the difference between “search” and “subject” was (both bring up the topical list from A-Z but when you click on “subject” to access the list, you can actually have the device send you verses on your topic in 15, 30, or 60 minute intervals.  Find a verse you really like?  There’s an option to add it to your favorites.  Needing to hide His word in your heart?  Scroll to the bottom of the verse (the same place where you’ll find the “favorites” option) and click “memorize.”  It files each verse away for you!  There are 44 different life subjects with more than 1500 verses.  One downside that could be a potential hang-up for some is the fact that there is no one translation that the LifeDiscipler uses.  Each verse is from a different version of the Bible.  There is no way to edit this. Versions I have come across are:  TNIV, NIV, NLT, NKJV, NCV.  Again, not a major flaw- but to each his own.  

The MSRP on the LifeDiscipler is $29.99.  If you enter the coupon code “GROW20,” you will receive 20% off!  This code is good through December 30, 2010.

For me, I still like the feel of the pages of my Bible turning in my hand. When I need to find a verse while on the go, I’ll probably use my iPhone.  BUT this is a nifty little tool- especially for times when you would like to pass the time productively (while in a waiting room, on a coffee break, etc) and if you don’t already own a smartphone (or would rather chunk it out the window than spend another second with it!).  If you just read that last sentence and agree with me, “Anger” is the third choice down on the “search” menu! ;0)

Homeless for the Holidays

The nice people of BuzzPlant sent a DVD for me to review recently.  It's called "Homeless for the Holidays" and we finally got to watch it tonight.  In case you have an itchy clicker-finger, here is the movie's website: http://homelessfortheholidaysmovie.com

It seems like finding a good family-friendly movie isn't as difficult to find anymore and, for that, I am grateful.  I am thankful that there are people who make sacrifices so that we can gather around the television without having to worry about covering little eyes and ears.  "Homeless for the Holidays," while having some "cheesy" moments, doesn't fail to deliver in this aspect.  The movie actually is approved by the Dove Foundation and I have to agree with their assessment.  It's so refreshing to sit down and enjoy a show without any awkward moments.  In fact, the only time I squirmed in my seat was when I tried to put myself in the lead character's and his family's shoes.  Without giving anything away, this film has a great storyline and will make you think about your own life.

Cheesy?  Yes- there are some parts that I hate to use that word to describe, but there is really only one scene that I think the movie could have done without and maybe the final cut won't have it (grocery store).  As far as the "faith-based" part- none of that was cheesy at all.  :-)  Nothing was cut-and-dried or storybook- some things you think might happen won't.  I like that it wasn't too predictable.

One of the best parts about this movie is that it's based on a true story.  When you walk away from it, you won't be thinking, "Yeah, right!  Like that would EVER happen!"  Well, I hope that, regarding the things that play out in the ending, that these things never will STOP happening and that we will all strive to be like the Baker family.

If you get bogged down in the middle, please hang on and bear with the film.  You won't be sorry.  Ah, and watch the credits for some pretty funny outtakes!

I know this was done on a very small budget and I applaud the producers and actors and everyone involved.  I'm very thankful for a film that makes my family think and reminds us what the Reason for the Season is all about.  I hope that, as people view this movie, they will focus on the story and not so much the smaller details.

If any of you are interested, you can buy "Homeless for the Holidays" on DVD in select Christian bookstores as well as the website mentioned above.  Here is the link again: http://homelessfortheholidaysmovie.com  In fact, I just saw it advertised in our Family Christian Stores circular :-).

Happy viewing and Happy Thanksgiving!!

Amy

Heart strings yanked on, once again!

Ok.  I am full of restless energy tonight and I thought I would take it out on you guys.  Yes, all three of you!  ;-)  I don't even know who reads my entries but, you are in for a humdinger tonight!!  Maybe.

So, this "heart world" sure can take you for a ride.  One minute, you are celebrating a victory and the next, you're trying to figure out what hit you b/c things change like *snaps* that.

Rest easy- Ethan is 100% A-ok.  He is presently snoozing on the futon.  YES, the futon (in his room).  He has decided his crib is meant for WWF type moves and not for sleeping!  I don't have to worry about him falling off the futon b/c it slopes toward the back so he's as snug as a bug in a rug.  I love that kid so much. I got to spend all day with him (We were out all afternoon, just he and I and then Dillon is not feeling well, so once he got home from work, Ethan and I had more adventures on our own) and it was so much fun just watching him.  We went to Chick-fil-a and after getting a few pieces of chicken and fruit into him, we headed into the play area.  There were some older kids  in there (the eldest being 6) and he had a BLAST! Someone was looking at our house today, so we had to be out for 2 hours.  Usually, on days like this, we end up at good ol CFA (I'm surprised they don't have a booth named after us) and that means plenty of playmates for Ethan.  We actually met a little boy who is a day younger than him!  He was a firecracker and loved doing what the big boys were doing.  I'm kinda thankful Ethan is a bit more reserved (now, if he were alone, he would have been jumping all over the place).  I was a tad nervous that someone was going to get hurt, but they all did well.  After that, we took a break to "eat more chikin" and then more playing.  This time, his playmates were little girls.  He LOVES little girls!  I rested a bit easier b/c they weren't anywhere near as wild as those boys were!  He had a great time.  He had such a good time that he fell asleep while we were shopping at Target!  Yup.  Leaned right over on the handlebar of the shopping cart and nodded right off into dreamland.  Poor kid!  Once we got home, though, it was full-speed ahead and we played outside the rest of the afternoon.

Ok- back to what spurred me to write.  I just wanted to make sure you guys knew Ethan was good.

"My" heart babies.  They are mine because I pray for them, think about them, worry about them, weep for them, get excited when I see their pictures and want to buy stuff for them, just like a mom.  Of course, I have NO WAY of knowing exactly what their mommies and daddies are going through, so don't get me wrong there!  I just want you to realize how much I love these precious ones.  Yes, even ones I have not met.  I rejoice when things go well and cry and rail when they do not.  Today hasn't been a day of rejoicing for at least two of "my" kiddos.

Little Bowen had been doing pretty well, heart-wise but just hasn't been able to have a good, steady blood sugar reading.  His is waaaaay too low.  Doctors are trying to figure out the cause and have even mentioned possibly transferring him to another hospital, which sent his parents reeling b/c they never imagined being in the hospital for as long as they have.  Something I have realized is that, even though the "heart stuff" works itself out (for the most part), something else seems to crop up whether it's feeding issues or something else.  It kind of waylays you (is that the proper spelling?).  I know that Matt and Sarah are missing their daughters a lot and don't want to spend more time away from them than they have to.  They had asked for prayers to that end and then today, Bowen started having seizures :-(.  At the time Matt updated, he was acting normal but they think he could have had a stroke.  I did some reading about hypoglycemia in infants and saw that seizures and other issues are part of the "side effects."  Oh please, won't you pray with me that this was a one-time thing and that there are no lingering effects from what happened today?  Pray that the doctors will figure out why his blood sugar is so low and find a remedy for it.  Pray that Matt and Sarah will feel the peace that passes all understanding and that they would feel God holding them close.

Nathan has been doing fairly well.  He continued to battle fluid build up and some other things (had to have a couple heart caths and a stent placed) but was able to feed from a bottle nipple a few times (even drank 40ccs of formula out of one!  That is half of one of his feeds!!! Otherwise, he gets his nutrition via his g-button)  Well, he was grouchy and fussy the past couple of days and ended up needing a blood transfusion today.  He also had a bit more fluid than they'd like so they gave him an extra dose of IV diuretics.  The IV is something he needs to get off of in order to go home, as well as learn to breathe using the home vent (different settings than the hospital vent).  He was able to practice 4 hours yesterday but tuckered out.  Because of how rough he had it today, they didn't want to push him.  Please pray that things go back on the upswing for him.  He's been in the hospital every day of his 4 months of life. He also has only had one of the three stages of surgery to restructure his heart (both he and Bowen were born with Hypoplastic Left Heart Syndrome), and the 2nd stage usually happens around 6 months of age.  His parents would like to have him home for a little bit prior to that, if possible.

UPSWING ALERT!  Greta has been having a great couple of days!!  If you recall (I think I wrote about it), she was having a terrible time, post-Fontan, with fluid issues.  I mean, they were pulling up to 600cc's of fluid off her little body!  She had a couple of procedures (and heart caths) and something finally worked!  She's starting to eat again and has no chest tubes and even removed her oxygen (yes, SHE removed it) last night.  Her sats stayed where they need to be, so she's officially tube-free!  They are hoping she gets to go home in the next couple of days.  That would be WONDERFUL!!

So, after writing all that, I don't feel as jittery as I did when I started.  I just feel like shouting from the rooftops for everyone to stop what they are doing and pray for these babies.  1 in 100 babies is born with a heart defect.  It's estimated that 9 die per day.  NINE babies.  Every day.  I just think about this and it slays me.  One thing that has been plaguing me lately is this. Think about your child being born- maybe he/she was diagnosed prior to, maybe not- and then going through surgery and fighting through so many things and then not making it.  How in the world do these parents cope?  I know two very strong women who experienced this recently.  I'm not sure I'll ever be brave enough to ask.  I mean, it ripped my heart inside out when we found out about Ethan- both for his first surgery and his second.  His second was so hard for us b/c he was 4 months old and we'd really bonded with him.  We were terrified of losing him.  Praise God that it wasn't his time and he made it through everything and is still with us.  I am praying the same for the babies mentioned above.  There are also several others that I've "met" via prayer requests online, whether it be Facebook, a blog or Twitter.  Annabelle is having her Glenn procedure tomorrow morning.   Another little one, Logan, is being transferred to another hospital to undergo a procedure soon, as his heart isn't in good shape right now.

Please pray for these and for the others out there yet to be diagnosed.

Thank you!!!

The Seven Minute Difference

I was recently given a couple of materials to peruse and review.  This is the first time I've actually been asked for a "formal" review about something and, I'll be honest, I'm a bit nervous.  Bear with me :-)

Allyson Lewis has written a few books and I've had the privilege of reading The Seven Minute Difference over the past few weeks.  To be honest, I have had the book for quite a while but just haven't found solid time to really "dig" into it til just about a week ago.


"The Seven Minute Difference."  In this "microwave" society, the thought of something having an impact in just seven minutes (the average attention span of people- yes, I learned that from the book!) is quite intriguing, especially for this busy mom of a zany almost-two-year-old boy!  Sign me up!

Ahhh.  Were you thinking about a quick fix?  This is a book, silly!  The "Seven Minutes" part is only a fraction of the whole enchilada that Allyson lays out for us.  It is the main ingredient, if you will, but we are talking about changing how you look at life and how you look at yourself.  Where are you now and where do you want to be?  What is your purpose in life?  Oh wait.  Too heavy?  Well, I thought so, too, but we must take time to sit and really think about this kind of stuff if we want to do more than just eke our way through life.

This book is pretty much geared for professionals and entrepreneurs.  People who run a business.  Wait.  People who run businesses manage people, right?  They work with budgets, yes?  They try to maximize efficiency and productivity, oftentimes wearing different hats.  Hold on.  Sounds like a position I'm familiar with.  BEING A MOM!  Ok.  So, I read on and gleaned a lot of information- not only from this book but about myself.  Yes, it's kind of like homework so be prepared to sit down in a quiet place and have something handy to write with.  Better yet, break out your handy dandy "7 Minute Life Daily Planner."  Don't have one?  It's set to hit the shelves on 10/21 and is the perfect companion to Ms. Lewis' book I mentioned earlier.  I have used both a notebook and the planner so far.

I haven't finished the book yet.  I am only halfway through.  I will admit that a couple of chapters didn't appeal to me because they did seem to be business-oriented (dealing with clients, networking successfully, etc) but I can tell you that some of the concepts presented gave me some ideas for the non-profit I help out with.

Would I, as a mom, purchase this book/planner?  To be honest, I probably wouldn't.  I am super-blessed it was given to me because I have learned a lot from it.  The very first thing Allyson asks of us is to think about our purpose in life.  Have you ever really sat and thought about that?  She encourages us to look at our strengths and ways we can enhance them.  Negativity? Get that out of your life!  "Your negative illusions do not define you."  Those criticisms you have for yourself?  She asks how you think your loved ones around you would feel if you pointed out each and every one of their faults in the same manner you chide yourself.  Wow.  That is really some food for thought.  She implores us to dream big: "Our dreams influence our actions and therefore help form the blueprint of our lives."  This book has really given me the opportunity to sit and reflect on who I am and where I'm going.  Goal-setting has always been really hard for me but she makes it easier by implementing things called "micro-actions."  These micro-actions help give us momentum to plow through what used to be our mundane lives.

Passion. Dreams. Service. Priorities. Goals. Success. There is no room for failure or to dwell on past mistakes.  Allyson provides the tools we need to get moving with our lives by not only sharing her experiences but also giving us another tool for achieving our life's purpose:  "The 7 Minute Life Daily Planner."  We must de-clutter not only our thoughts but our desks and our schedules and this book is something she devised to assist in this endeavor.  It is broken down into 90 day segments because, she notes, in the business world, 90 days is plenty of time to gauge if a plan is working and goals are being met.  It's also short enough to maintain motivation.  I am just now getting into using the planner, but I hope to have some more feedback on it for you guys, soon.  Just flipping through it has me kind of excited.  There are pages devoted to sorting through mental clutter, daily progress reports where you can jot down those you've networked with, unfinished tasks and even how much water and exercise you got on a particular day!  She leaves no stone unturned!  We will see if it jibes with my "Stay-At-Home-Mom-ness."

Thanks for reading!  Stay tuned for more!

[EDIT] I forgot to put the link in for the book/planner! Please click here to read more!

Amy

What's next on the horizon..

I have another blog entry to post but I feel like I need to tie up some loose ends from my previous entry one.

A lot has transpired since I last wrote.  Probably the most impactful was that Joshua and Ewan both earned their wings.  Their hearts were made whole by the One who let us borrow them on this earth for a bit. Oh, you may ask, "Why give them life and then take it away?" Let me tell you that these two boys did more in their short days on this earth than many of us will in our lifetime.  They have truly left a legacy.  Yes, it hurts (It literally tore my heart in pieces and I can not FATHOM what it did to their mothers'!) but both moms were gracious enough to invite us on their journeys from birth to death- and I have seen miracles.  Even though God didn't heal them like we would have wished, He did a lot of healing of hearts here on earth through their death.

Jamar got to go home to be with his family in Louisiana.  I know that was a big blessing to everyone.  Last I heard, he was being a bit of a sleep Nazi but doing well ;-).

Greta and Nathan have been duking it out with chest effusions and the like for several weeks. FINALLY it seems that dawn is breaking and things are moving in the right direction.  I was able to see Greta this evening at our heart support group meeting and it was good to see her out and about.  She is still in the hospital but they already removed her chest tubes and IVs and she's starting to eat again.  Nathan has been able to take some formula by mouth for the first time since he was born- which is amazing!  It's been baby steps (he's taken in 15ccs at the most), but he's not aspirating any of the milk and seems to be tolerating it well.  They don't want to push him, but have allowed him to do a couple of feeds a day like this (he gets most of his nutrition via a mickey button in his tummy).  His mom is meeting with the doctors tomorrow to discuss the plan of action for the future.  I sure hope he is able to go home soon!!

Bowen is still doing well despite some feeding issues and low blood sugar.  They did some genetic testing but I haven't heard if they got the results back on it.  Just continue to pray he feeds well and the sugar thing gets under control soon so he can go home!  Let's ask God to let him do this in time for Halloween so he can dress up with his sisters!

Lastly, Ethan may be coming down with something.  He woke from his nap today barking like a sea lion.  It was so strange.  He was fine this morning and then all day before his nap (2:30pm).  Not a runny nose- nothing.  I let him go to the support group meeting tonight b/c once he woke up and got moving, he was fine.  No cough.  No whining.  Nothing out of the ordinary.  At the meeting, he romped and played.  We got home and he was fine.  Put him to bed and 2 hours later I hear the bark and then a cry.  I go in and I was afraid he was having an asthma attack (he does not have asthma but Dillon and I both did as children)!!!  He wasn't.  His breathing was fine, sans a little "snottiness."  Oh boy.  No fever (same as today).  Just the barking.  He was pretty scared and wanted me in there for a few minutes.  I have almost talked myself into just sleeping in his room tonight.  The problem with that is, he's decided the past few days that he needs to sleep on the futon in his room instead of in his bed.  Mommy will have to bunk in the floor.  I guess we'll see if he wakes again before I go to bed (it's already midnight- I should be heading there soon but I have another entry to post!).

Talk to ya in like a minute!

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.