Pre-op done!

Thanks, everyone, for your prayers for our family this week! Isolation Week is over, pre-op is done, now time to get some rest before the big surgery day tomorrow!

Pre-op went well today. We were at UNC for 3 hours of appointments - physical exam, echo, lab work, X-ray, & EKG. Everything looked great so we'll be back at 6AM tomorrow for check-in, then anesthesia will come get him at 7:30AM, we'll say our goodbyes, then wait to see him again after 1PM.

We don't plan to get any updates during the surgery but will update as often as we have news to share!

Thanks again for your prayers! We greatly appreciate them!

To God be all the Glory!

One Week!

Today is August 25th, 2011. We have one week from today (September 1) before surgery so we've decided to go into hiding to stay away from germs/stay healthy before the big day next week. Daddy (Daniel) is still working full time, up until surgery but Ethan and I plan to lay low and just hang out here at the house so we can stay well. We both have a little bit of a stuffy nose this week, but I've had that my entire pregnancy so not sure if I'm getting sick or just having a little more of the pregnancy congestion now that I'm in my 3rd trimester!

Goals for the next week: stay healthy, get/keep the house cleaned up (getting harder to bend over and pick stuff up as the baby gets bigger), find someone to watch the dog, enjoy some quality family time, put together my "care pack" for Ethan for post-op recovery, take some time to explain to Ethan what will be happening to him next week, and try to not go stir-crazy in the house!

Ethan's hospital sent us a nice picture storybook for us to read to him to help us explain going to the hospital for heart surgery. It shows some cartoon pictures of a child hooked up to all kinds of equipment (IV's, foley bladder catheter, ventilator, chest tubes, pulse ox, oxygen, etc.). Fortunately, he'll still be sedated while most of that stuff is still in/on him). When he gets out of ICU and is transferred to the step-down floor, he'll definitely be rid of the big stuff like vent, IV's, chest tubes, catheter so he should probably only have the pulse ox and maybe EKG stickers.

Please be praying for us to have the right words to use when explaining all this to him and for him to not be scared and that he'll be able to understand it all. Up to now, we've only told him we're trying to stay healthy for next week's pre-op appointment (on Wed., August 31) where they'll take special pictures of his chest bones (X-Ray) and that the next day we'll return and that he'll take a big nap (anesthesia) while his doctors work on fixing his heart so he doesn't get out of breath so quickly. He seems to like the idea of having more breaths so we're trying to keep it positive for him. He has no real sense of time at this age so we don't want to reveal everything at once and overwhelm him or have him worry about it for too long.

If anything else comes up between now and next Wedneday at pre-op (like having to postpone surgery due to illness, etc), we'll keep you posted. Otherwise, be on the lookout next Thursday for lots of updates about the surgery and recovery! We don't get updates during the actual surgery so don't be alarmed if it takes us a while to update post-op!

Ethan's 4th Birthday!

Update: this post is a little late, my computer crashed last week while I was creating this and I forgot to go back and publish it.

Well, this year for Ethan's birthday, we kept it low key but spread out the fun - starting and ending his birthday week with parties! This year's theme was "Cars 2" - his current obsession!

We started with a cookout/party with our church small group on Sunday night, August 7th. We kept the festivities light - just cake, ice cream, a pinata and no gifts. The kids all had fun pulling their string on the pinata to see which string broke open the pinata.

closeup of "Finn McMissile & Mater cake"

blowing out the "4" candle

the kids all have their pinata string ready to pull

Then, the following Sunday, August 14th, party #2 was a family party. We had hot dogs, lots of great side dishes like 3-bean salad, potato salad, baked beans, chips, homemade slaw, watermelon, canteloupe & blueberries. That was topped off with a homemade "Finn McMissile" cake, ice cream & lots of presents!

"Finn McMissile" cake made by Mom

Ethan received lots of cool presents for his birthday - most of which were toys from the "Cars 2" movie! He is very thankful for all his cool new toys and has spent countless hours playing with all his new stuff this week!

busy opening gifts!

Some of Ethan's favorite things while he was 3 years old:

Food: hot dogs (no buns), cheeseburgers, steak, Red, Hot & Blue pulled pork, "America" cheese, colby-jack cheese sticks, Cars 2 graham crackers, chocolate, ice cream, chocolate milk, grilled/baked chicken (aka "buck buck"), popcorn, did I mention chocolate? (a boy after my own heart!), broccoli, applesauce, and pretty much everything else unless it's breaded/fried (like chicken nuggets)

Toys/Activities: Cars/Cars 2 - especially Finn McMissile, Lightning McQueen Rusteeze, Mater & Mack, he also likes to do 24 piece puzzles, play Memory, Cars Bingo, Candy Land, card games like Go Fish, Slap, Crazy Eights, he also enjoys riding his Red Rider tricycle and playing in the sand box, 24 piece puzzles

TV/Movies: he started to lose interest in Sesame Street & Mickey Mouse Clubhouse last fall after he was introduced to Disney/Pixar Cars DVD, we also got cable this spring so he got hooked on all the Nick Jr. shows like Miss Spider's Sunny Patch, Ni Hao, Kai Lan, Yo Gabba Gabba (cringe - I think this show is creepy so he doesn't get to watch it much), Fresh Beat Band, Wonder Pets, Dora, Diego, Blue's Clues, etc.

Ethanisms: "excuse me" (very polite young man, used for every time he wants a chance to talk) "little biwwit" (for "little bit") "wook" (for "look") "that's my favorite!" (for everything he likes), I'm sure there are more but those are the ones that easily come to mind right now!

Big Update

Hey Everyone! So as the saying goes, no news is good news! I can't believe it's been six months since our last post. That is about to change because we have a lot coming up! We've had a lot happen in the last six months so, if you're up for it, hang in while I try to catch you up to speed.

I'll start back in March, shortly after where the last post left off. Early in March, we found out that we're having another baby - due November 2nd. We told Ethan a couple weeks later and he was pretty excited and immediately starting sharing the news with everyone that he's going to have a little brother. :) At 8 weeks pregnant, we had to stop him from telling everyone yet

because it was still way too early to know for sure about the gender of the baby. Also in March, we finally got around to getting Ethan's 3 year portraits done at Wal-Mart. And the biggest news of the month, Ethan got to be a ring bearer in his Aunt Jenny's wedding!

Ethan and his cousin Annie (as the flower girl) at the rehearsal.

Ethan's 3.5 year portraits in his ring bearer suit

Another shot from the portraits

Then in April, Ethan went for a cardiology checkup and things still looked good with his heart on the echo (ultrasound of his heart). As a result, his cardiologist felt confident to go ahead with a heart cath to prepare for the final heart surgery later this year, at a date of our choosing.

May was a pretty low key month, Julie celebrated her 31st birthday by Dan whisking her away to South Carolina for a weekend away to go to the Kenny Chesney concert & visit from friends while Ethan spent the weekend with Dan's parents.

June was a super busy month for us all. On June 2nd, Ethan had his heart cath at UNC Hospital's pediatric cath lab. Again, things looked very good with Ethan's heart. In fact, Dr. R, his cardiologist, even went so far as to say that Ethan has one of the best looking anatomies for someone with HLHS! This was very encouraging news for us to hear and, upon review of his cath results with the peds cardio-thoracic surgeon, we should be on our way to booking the final heart surgery, the Fontan!

Also in June, we had a level 2 ultrasound of baby #2, to evaluate the anatomy, specifically the heart, and also find out the gender of this baby. We are happy to report that this baby is completely heart healthy and Ethan was correct in guessing that this one is, indeed, a brother to Ethan!

We also had a family beach trip with Julie's family (mom, dad, sister, brother-in-law, & cousin Annie) in June. This was a much needed time of relaxation and fun for us all to break up our busy summer! We stayed so busy that we forgot to get many pictures of the trip. Ethan and Annie enjoyed lots of play time in the sand and waves, as well as some time in the pool. Ethan loved the water last summer but has gotten a little more timid of pools for some reason this year. We probably should have put him in swim lessons again but time got away from us! We also took Ethan to see Cars 2 on the day it was released in the theaters (June 24th). If you know Ethan at all, you know that he's a bit obsessed with all things "Cars/Cars 2" related so this was a big treat for him!

June was also the month we heard back from UNC and booked Ethan's Fontan heart surgery! He is scheduled for surgery on Thursday, September 1st, with a pre-op appointment the day before, Wednesday, August 31st.

July has flown by for us. It's always a busy month with Aunt Jessica's birthday on the 1st, Mimi's (Julie's mom) birthday on the 13th, Mimi & Pop-Pop's anniversary on the 23rd, new bro-in-law Brandon's birthday on the 26th, & me and Dan's anniversary on the 27th (9 years for us!).

Well if you've made it this far, then you're pretty much caught up with our lives. August is here and we're busy trying to make the most memories and have as much fun as we can before surgery on September 1st!

August is Ethan's birthday month, and also anniversary of his first heart surgery! We're stretching out the birthday celebration all week long. We started with a small party/cookout with our small group at church on Sunday night, August 7th. We had a Finn McMissile & Mater cake to celebrate. Then, every day this week I'm trying to do a little something special for him.

Monday, August 8th, Dan and I went to UNC to meet with his surgeon to get more info about what to expect with this surgery and recovery. So while we were in the meeting, Ethan's Mimi took him and cousin Annie to the sprayground/pool for a couple hours. They had a blast playing together!

Tuesday, August 9th, we went and had lunch with Dan then went to Rita's Italian Ice for dessert.

Wednesday, August 10th, Ethan and I met up with some friends to watch Cars 2 (for the 3rd time this summer) and then we ate ice cream at Baskin Robbins!

Thursday, August 11th (today!) - Ethan's 4th birthday! We're going to meet Mimi at Sears for Ethan's 4 year old portraits, then get lunch at the food court (probably Ethan's favorite - a cheeseburger (no pickle) from McDonald's. Then for dinner, we'll take Ethan out for pizza and doughnuts and let him open one present.

Tomorrow, Friday, August 12th, I've got to go into work for a couple hours so the plan is to let him have a playdate with cousin Annie. This may have to be postponed though because Ethan's starting to get a runny nose :(

Saturday, August 13th, this is the 4 year anniversary of his first heart surgery. Don't have anything planned yet for that day so I've got to think of something. I guess it'll mostly depend on how Ethan's feeling with his cold.

Sunday, August 14th, we plan to have a family cookout/birthday party! I'll stop here and update more after the party. I'll hopefully have some more pictures to include too!

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!