Happy CHD Awareness Day!

Well, you know what they say, "no news is good news!" That has certainly been true with us! We've had a busy last six months and no time to slow down and post. Ethan is now 3 1/2 years old! So much has happened since our last update. Where do I begin without making this post last for days!?!

Since last August, here's what we've been up to. We went to the beach for Labor Day weekend with several friends & all their kids, we visited the NC Zoo in Asheboro, had a fun surprise 60th birthday party for Ethan's Pop-Pop (Julie's dad), went to Nashville, TN the week before Christmas to see Julie's relatives on both of her parents' sides of the family, celebrated Christmas at home with both Julie & Dan's immediate families, celebrated the engagement of Julie's youngest sister (Aunt Jenny), enjoyed several snow days this winter, & are currently gearing up for Aunt Jenny's wedding at the end of March!

Ethan has managed to stay very healthy this winter with just the occassional runny nose/mild cold from time to time. Thankfully we haven't so far dealt with anything quite as severe as the bout with RSV that he got last January that sent us to the hospital for 4 days. Saturday night he did come down with a fever that continued all day yesterday & into today as well. Poor little guy, he spent all day Sunday napping on the couch & that looks to be the same for today as well. We are supposed to go to his biannual cardiology checkup tomorrow but it looks like that's going to have to be postponed until he's all well. This checkup was supposed to be the last one before his next heart cath & final heart surgery so we've been anxiously waiting for it.

And speaking of Ethan's heart stuff, today is most commonly known as Valentine's Day but, unfortunately, is not often known as an even more important day, National Congenital Heart Defect (CHD) Awareness Day! This whole month is heart month but last week through today (7th-14th) is CHD Awareness Week. I've posted several heart facts/statistics on my Facebook page but want to post here as well in case you don't use Facebook & are curious about CHDs.

Here are some statistics about CHDs, most of them come from the TCHIN.org site:

• 1 in 100 babies are born with a heart defect (about 40,000 each year)
• 4,000 of those will not make it to their first birthday
• Although some babies are diagnosed at birth, there is no routine screening for CHDs at this time, though some states are working on changing that so all babies are at least screened by pulse ox (checking oxygen saturation)
• Twice as many babies die from CHD's as from all pediatric cancers combined yet there is 5x more funding for pediatric cancer (all the more reason we need help spreading awareness)
• Some CHDs may require a visit to a pediatric cardiologist. Others can be treated with medications or repaired with surgeries and/or procedures. Complex defects (like HLHS) may require several surgeries and are never really "cured".
• The majority of patients born with a CHD are now adults, yet many adults with a CHD are not receiving adequate ongoing care from trained specialists.

I know I'm long overdue for including recent pictures but unfortunately, in all our busy activities, I've forgotten to take any of Ethan. I'll have to work on that! Here is a list of some of his favorite things though!

Movie/TV characters (in order):
Disney/Pixar Cars (playing in the background as I type this), Toy Story (1, 2, & 3), Mickey Mouse Clubhouse, Turbo Dogs (on Qubo), VeggieTales, Transformers

Toys:
Anything to do with Cars (Mater, Lightning McQueen, The King), 24 piece puzzles, he got walkie talkies for Christmas so they've been fun to use around the house, his new VTech V.Reader (e-book for kids), kids card games like Go Fish, Crazy Eights, Rummy, BINGO (of course all played with his own special decks of cards with Cars characters on them), also UNO, Candyland, & Memory (he's got a much better memory than me & always wins!). I even have a few game apps on my phone that he likes to play like Angry Birds, BullRush ("cow game"), Wheel of Fortune, tic-tac-toe.

Foods (he's not all that picky & pretty open to trying new stuff!):
Cheese (especially mozzarella string cheese & plain American), red seedless grapes, chicken (as long as it's not breaded/fried), cheeseburgers (no pickles please, just ketchup & mustard), broccoli, plain lettuce, zucchini, carrots, peas, anything chocolate (especially M&Ms), cold turkey hot dogs, ham, chocolate Teddy Grahams, fruit snacks, butter, popcorn (especially at Target as we're shopping), PB&Js, grilled cheese sandwiches, yogurt, Cheez-its & Goldfish, asparagus stalks (just not the buds on top), eggs

Other things:
Ethan also loves his mommy & daddy & all his relatives. He loves to learn. He loves Jesus. He enjoys spending time with his friends from church, MOPS (Mothers of PreschoolerS group), CBS (Community Bible Study). He is very tender-hearted like his mommy & cares about the needs of others & asks to pray for them. He is Mr. Extreme Extravert - talking to everyone & every thing (animate & inanimate) with which he comes in contact. He enjoys reading, learning to write his ABCs, learning about Jesus & singing his Bible study songs. His favorite tune right now is "Praise the Name of Jesus". With MOPS & CBS twice a week, there's been no time/need for preschool at this time. CBS has taught him so much - Bible stories, Bible songs & scripture memory - and I've also been able to enjoy a year-long study of the book of Acts in the adult CBS class while he's there!

Cardiology appointment update: while I was typing this, his cardiologist's nurse called & had to cancel because Dr. R has an emergency procedure to do on another patient. That worked out good since I told the nurse that Ethan was sick and I was afraid I was going to have to cancel. Our new appointment will be on Tuesday, March 1st.

Birthday Boy!

I'm busy cleaning and prepping for Ethan's birthday party so I'll keep this short and sweet until I have time to blog all the details. Two days ago, Wednesday, August 11th, our sweet boy turned 3! Happy birthday to our sweet Ethan Scott Miles!

Instead of celebrating just on his birthday, we actually started the festivities last Tuesday, August 3rd, and we're keeping the fun coming until his big party tomorrow, Saturday, August 14th. Last Tuesday, we began the celebrating with a small family party while away on our annual Garrett Family beach trip! Ethan's Aunt Jenny (and her boyfriend!) was with us from SC and wouldn't be able to come back to town to see Ethan for his actual birthday so we decided to include her in the festivities by celebrating early! We ate cupcakes & ice cream & let Ethan open his present from Jenny and a few smaller gifts from the rest of us.

More details about the beach trip and Ethan's birthday party to follow soon!

It's Been a While!

Wow, does time fly! Today's the first day of summer and I just realized I still have Valentines wallpaper up here on the blog! Guess it's time for a makeover and some big updates! Well, like they say, "No News is Good News!"

So what have we been up to for the last 4 months? Lots - but nothing involving anything medical for Ethan! He had his last cardiologist checkup back in February and doesn't return until mid-August (after his 3rd birthday!). At that time, we expect to have a little more info as to when Ethan's 3rd (and hopefully final) stage of surgery (the Fontan) should take place. At his Feb. appt, he was about 3 pounds shy of the minimum weight required to do the surgery so we've just been working on fattening the boy up as our main priority. Easy to do in the summer time with lots of cold sweets to chow down on! Ethan wakes up asking for ice cream, popsicles, candy, etc. Of course, we don't let that be his "breakfast of champions" but it does tend to make it into our mid-afternoon or evening snack time!

And speaking of surgery, we have had 5 other heart friends (most of them younger than Ethan) already make it through their 3rd stage of surgery in the last month so we've been following their journey's, praying for them, and learning what recovery looks like for them so we can start to mentally prepare for our own when our time comes. We just have to keep in mind that this particular heart defect, HLHS, is one of the most complicated ones (in case you didn't know or have forgotten, there are over 35 known heart defects currently) so each case is unique with the outcomes and how each child's body handles the surgeries & recoveries. As we're learning, heart kids live on their own timetable for recovery and nobody seems to really go "by the book" so just because one kid may struggle with a certain aspect of recovery (such as eating, keeping O2 sats up, chest tube drainage, etc), doesn't mean that it's the same for everyone (Ethan included) so we will continue to just trust God when our time comes.

Well enough about Ethan's medical stuff, time for the fun stuff! First, I have to admit I've been bad about not getting a lot of pictures with the camera lately so this post won't have a lot of pictures. Dan & I both got new phones back in January that take good pictures and I have hundreds on there, I just have to figure out how to get some on this site. I've uploaded lots straight to Facebook but am still learning how to get them to other places!

This spring, Ethan and I wrapped up our first year of Community Bible Study! I had a great time getting to know ladies of all ages from different churches across the city. We spent the year studying the book of Luke. Ethan's class had a great time doing their own lessons throughout the New Testament. He learned 6 different Bible verses set to music, along with lots of other Bible songs. He had a great time at his year-end concert getting to perform these songs on stage with all the other kids. He goes around the house singing these songs every day & I've come to learn most of them as well!

Ethan continues to continually amaze us with his non-stop energy, creativity, extravertedness (if that's even a word!), & his love for God & his family. He loves to lead family prayer time at meals, bedtime, the car, & more. He still naps most afternoons for a couple of hours but gets up early (about 7:30am) and goes strong all day long until 8:30 or 9pm. He loves to draw (especially footballs) - he colored all over his walls with his (not-so) washable Crayola crayons, he draws in the tub with his tub crayons, outside with chalk & on paper as a last resort is seems! He also is proving to be a smart kid - he can count to 15, knows his colors, numbers, letters, and always barters for more of anything (like I'll say he has 5 more minutes to play & he'll ask for 6 minutes or I'll say he can have 1 book read to him before bed & he'll ask for 2).

He still doesn't know a stranger. One night when we were out to eat, an older gentleman passing by our table waved to him and held out his arms & Ethan reached out his arms trying to go to him! He also talks to any & every thing he sees - greets everyone in stores, says "bye" to all the trees we pass as we drive down the road, even carries on full conversations with the geese we feed at the lake.

Ethan also has grown a lot spiritually this year through his attendance at Community Bible Study, MOPS, Sunday school & of course by following our example at home. He is sensitive to the needs of others - especially his family, extended family & our heart friends. He often initiates prayer when I don't even think to stop and pray at times. We let him help decide which heart friends & which family to pray for at meals & before bed time and he even will stop me in the middle of the day randomly and just tell me we need to pray for someone (or something). I look forward to seeing him grow closer to God & especially look forward to the day he decides on his own to accept Christ as his own personal savior because he wants to & not because we tell/ask him to do so!

Well in other big news, I'm tackling what I've been dreading as much if not more than Ethan's upcoming 3rd surgery - I'm starting on potty training Ethan! I know this sounds like I'm being overly dramatic & exaggerating but I'm not! I really have been nervous about the whole process. Fortunately, Ethan's been really excited about it. He received big boy underwear for Christmas & keeps asking when he can wear them. As of late last week, we have started the transition to pull-up diapers & Ethan has loved it! He has gone potty a handful of times each day for the last 4 days but still soaks his pull-ups. I've found his reward of choice/best motivational tool for him is a few M&M's ("nuh-nems" as he calls them) for each time he successfully pees in the potty. We also have an Elmo ptty chart w/ stickers that we started using today as well. So pray for us as we start this new journey towards no more diapers!

I'm sure I've left out lots of small things to update that have happened over the last four months so I'll just end with a list of Ethan's favorites (in no particular order):

Foods: red seedless grapes, watermelon, cheese, yogurt, cheeseburgers (w/ ketchup & mustard), lettuce (plain), ice cream cones (with any kind of ice cream as long as it has chocolate &/or sprinkles), Rita's Italian Ice (with sprinkles), M&M's, cheese quesadillas ("dillas"), tea, Krispy Kreme doughnuts (especially the ones with sprinkles), popcorn....the list goes on and on (except for most meats)

Toys/Games: anything with tires (I forgot to mention I had to get 4 new tires on my minivan about a month ago and E still hasn't stopped talking about it to everyone he sees) - I just got one of those fishing games for him where the "fish" are actually tires from the movie Cars, his train set, CandyLand, anything related to cooking (he doesn't use his tool workbench much for building, but rather for cooking up his nuts/bolts as "meals"), he likes using his shopping cart to go shopping "at Target" & he tries to swipe every purchase across my laptop to "pay for it" at a cost of "2 bucks" for each item - no matter what it is/how much it really costs

TV/Movies/Characters: Mickey Mouse Clubhouse, Toy Story (especially Buzz Lightyear), Handy Manny, The Count ("Ha Ha"), Elmo & Big Bird from Sesame Street (still his most popular category of movies to watch - especially Follow That Bird), Veggie Tales, & Richard Scary's Busytown show.

Well I better end the post for now but pictures will come next time!

Congenital Heart Defect (CHD) Week 2010

February 7-14, 2010 is Congenital Heart Defect (CHD) Awareness week. Up until 3 years ago, Dan and I (along with most of our friends and family) were aware that heart defects existed but had never had much knowledge about them or even known of anyone who personally was affected by one. It's amazing all we've learned about heart defects in this short amount of time as our family has been personally touched by a CHD.

We have been so blessed to live in such a technologically advanced society where we have instant connections to other families with similar CHD's through such advances as blogs (our heart friends list continues to grow over on our sidebar), websites, Facebook, email and more. Today, in reading one of our friends' carepage, they linked to a great (long) video on youtube from the doctors at Childrens Hospital of Philadelphia (CHOP) describing once again the 3-stage surgery Ethan is in the process of completing to help treat his defect - Hypoplastic Left Heart Syndrome (HLHS). The video is about 9 minutes long, but definitely does a great job with new animations in helping explain HLHS and how the surgeries work together to help give Ethan and other kids like him a chance at a longer, more "normal" life than kids 30 years ago could have ever hoped for.

Next Monday, Feb. 15, we will be returning to see our cardiologist for our bi-annual checkup of Ethan's heart function. Most likely, we will have an echo (sonogram of the heart), pulse ox check, and start discussions about when to start making plans for Ethan's 3rd (and hopefully final) stage of surgery. Scary to think about but oh it will be so nice to also finally get this behind us once and for all. To God be all the glory for all He has and will continue to do in our sweet boy's life!

And what post on CHD Awareness would be complete without some facts about CHD's? This year, I got my information from the CHIN.org website (CHIN - Congenital Heart Information Network). Please help me in spreading the word about heart defects this week and year!

More posts to come about what we've been up to since we got discharged last month!

Discharge Day!

Ethan had a good night, got lots of sleep, despite having to be back on oxygen all night (started at .5L and went down to .3L around 4am). He woke up full of energy and ready to play at 6am, which is early for him. I, on the other hand, tossed and turned all night and never really got any real sleep. We played and watched Disney channel and ate breakfast together then he went down for a nap at 8:30 (usually the time he'd just be getting up) and I'm just going to let him sleep as long as he can since his schedule's so off right now.

Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!

Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.

Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.

We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!

Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!

bed time

Quick recap of the day before we head to bed. Ethan has done a great job being weaned off oxygen today. He's been off of it since about 4:30pm and the real test/reason we're still here at UNC is that they want to monitor his O2 sats over night w/o oxygen to make sure he can handle it. If so, then they're planning to discharge us some time tomorrow. Time to try to get some sleep. He's still coughing on and off but it's definitely a big improvement from yesterday!

lab results

Finally, after waiting here for over 24 hours, we got lab results around 11:30pm last night. Good news is that all our waiting wasn't in vain - we knew he had SOMETHING and now we know exactly what - RSV. I'm encouraged that it isn't the seasonal flu or H1N1 but a little bummed that since it's a virus, no meds will work - it just has to run it's course. One doc just came by to greet us and let us know "the team" will be coming by to discuss today's action plan and when they'll be considering discharge. I don't expect to go home today b/c Ethan needs to be off oxygen and he's not on very much - originally put on 2L around 4am and at 9 he was weaned down to 1.5L then down to 1L at 9:45. We have to be totally weaned and Ethan keeping his normal range of sats before we can go home and that's really all that's holding us here, which is what always holds us here. So again, we're in a waiting pattern but at least we have more communication and understanding about what we're waiting for this time. Time for some cuddling with my little man. I'll try to update here later but will definitely update Facebook since I can do that from my new Palm Pre phone!