2 Years Old!

Where and how do I even begin to put in to words all I'm thinking and feeling today?!?Wow, I can hardly believe that two years ago today we met our sweet little heart baby for the very first time! What a blessing these two years have been for our family and also truly what an answer to prayer this has been for us to even be able to have a child at all after having miscarried a year earlier (and ironically enough who's birthday would have been later this month). This is going to be a long post but I promise there will be pictures!

We are very thankful for such a great team of prayer warriors we had during my pregnancy and delivery of Ethan. And, needless to say, we are also very thankful for the wonderful medical team that helped take care of him those first hours and days as we awaited his first open heart surgery at just 2 days old. Not to mention, the surgeons, anesthesiologists, nurses and more that cared for him before, during and after surgery and also our cardiologist that continues to check up on him every couple of months. We have overcome quite a bit these last two years, including a second heart surgery and the not so easy task of staying fairly healthy during RSV/cold/flu seasons. We continue to praise God daily for the gift of our little miracle - Ethan Scott Miles!

Since my last update (June VBS & Tatoo), there's been a lot happening. Ethan tagged along with me in July as I helped out with our church's July VBS (no tatoos this time!). He has become better at walking and talking since the first VBS and he just absolutely loves church - it's like a second (or maybe third if you count all the time he spent at UNC Hospital) home to him! LOL Each morning of VBS, I'd wake him up and tell him it was time for church and VBS and he'd rejoice and say, "Yay! Turt (church)!" By the time we'd walk up the sidewalk and into the building, he'd already be saying, "Bye!" like I couldn't get him to his classroom soon enough and leave him to play with his buddies!

Then one week ago (last Tuesday, 8/4) I took him in to UNC's Raleigh Clinic at Wake Med to see his cardiologist, Dr. R. We had not been there since January and I remember what a hard time we had in keeping him still for the echo so I brought nearly everything but the kitchen sink along in hopes of keeping him distracted long enough to do the echo. That last visit he was just not cooperative and didn't want to sit still long enough to get all the pics they needed so they sent us (back in March) to UNC's Cath Lab to have a sedated echo done. We never got any definite answers from that other than it looked "fine" and there really wasn't anything more to discuss. So, I was determined to "make" Ethan cooperate this time so we didn't have to go back to UNC again if this attempted echo failed.

At last week's cardio appointment, I'm pleased to say that Ethan weighed in at 12.6 kilos (27.7 lbs) and 34". His blood pressure was good (don't remember exact number) and his pulse ox was the best I'd seen yet - 87%! When Dr. R came in to talk to us, he said that he reviewed the March sedated echo and it looked so good that they didn't even need to do one that day and we can just wait 6 more months to come back for another visit! This was obviously an encouraging visit for us!

We know that given Ethan's particular heart defect, he does still have one more heart surgery to go but we know it won't even be something we have to even think about until after the next visit in February. Ever since we first heard of Ethan's condition and started learning about treatment options, we had always been told the 3rd surgery would most likely take place between 2-5 years old. This is such a wide age range for us - especially since he had his first two surgeries within the first 6 months of life!

Well speaking of Ethan's birthday, we celebrated with all our family (16 adults and kids) here at our house on Sunday evening. The menu was all of Ethan's favorite foods - "peesha"(pizza), cheese doodles, popcorn, M&M's, Kool-Aid juice pouches (thanks VBS church staff for that one!), salad (for the adults) and confetti cupcakes with Elmo candies and sprinkles! Yes, Ethan's still obsessed with Elmo so we did the same party theme again this year!

Ethan had a lot of fun eating all his favorite foods (did I mention this kid likes to eat?!) and opening all his presents. Some of his favorite gifts included a T-ball set from his Aunt Jenny, a collapsable tunnel from his Aunt Jessica (aka "Ca-Ca") and Uncle Brandon (aka "Bo-Bo"), a bubble blower (thanks Aunt Amanda, Uncle Reggie, cousins Rebecca & Marissa), and some new Elmo DVD's and Elmo puppet book (thanks Mimi and Pop-Pop). He also received some nice new clothes (thanks Uncle Chris - aka "Kiss" & great-grandma Jada), a shopping cart (thanks Grammie & Pap-Pap), coloring books and puzzles. It's been non-stop fun around here since Sunday night! Now if I can just figure out where to store all the new stuff!

And if you've made it this far through my post (or just skipped ahead), congrats! Time to see some pictures of the party!

Presents, oh boy!

Going Shopping!

"Oh, Ball!"

"...two, fee, go!" - Ethan as he waits for the tunnel to pop open

I love my new t-ball set!

It's my party and I'll cry if I want to!

Oh, something to read! Toddler's are so easily distracted!

Look what I got!

HAPPY BIRTHDAY candles

Not sure if he's more excited about the fire or the Elmo candy and sprinkles!

Yummy - sprinkles and sugar...

Oh yeah!

Ice cream and cupcakes on my Elmo plate and Cookie Monster placemat!

Ethan's first tattoo & VBS

This week is VBS at our church. Last year was my first year to volunteer and I enjoyed it enough to return this year. It's so nice to switch it up and take care of some older kids (first graders) and let the nursery workers take care of Ethan for a couple hours each day. So much so that I've also agreed to help out next month when we do it again!

First, before I get into explaining the title for this post, let me just preface this by saying that Ethan came down with a cold and what I'm guessing is yet another (3rd one in 2 months) ear infection. These doctors appointments are not cheap with our current insurance so we're skipping the doctor this time and just waiting it out. The first night or two is always the worst for him, but nothing that a little Tylenol can't help. Ethan certainly had a rough night Sunday night so Dan was gracious enough to stay home from work so I could fulfill day one of my VBS commitment.

Day two rolled around (Tuesday) and Ethan's runny nose stopped and he felt better but then I started coming down with the same symptoms. We managed to make it to VBS and have a good time. When I went to pick Ethan up from the nursery, this is what I saw:

The nursery workers said that this is the tattoo that he picked out - how cute!

Well before ending this post, I just want to update that both Ethan and I are still sick (I'm actually feeling worse w/ a fever/cough and all over achy feeling) so we're skipping VBS today. Maybe if we're feeling better and get lots of rest today, we can go back to VBS tomorrow (Thursday) for the final day. For now, it's lunch time then (hopefully) nap time for us both. I'll end with some more pics of my tattooed son. Enjoy!

Family Beach Trip '09

So I guess I should've looked at our beach trip pictures first before promising a post full of pictures. I really only have one good beach picture to share. :-( Too bad since we had a busy, fun, full week when we were there!

Ethan, Pop-Pop & Aunt Jenny

Mid-late May at Myrtle Beach is a nice, comfortable air temp but the water is still a little too cool. Ethan took a couple of days to get re-aquainted with the sand and water but then he enjoyed it the rest of the week. In this picture, Ethan and company enjoyed playing in a little puddle where the water was a little warmer. This picture was actually taken on our last day - just hours before we drove home.

Now to back track and give a chronological description of our week. This may get pretty detailed so don't feel like you have to read it all. This is the only place I'm journaling our only vacation of this year and don't want to forget what all we did!

Day 1 - We started our trip with a drive to Columbia, SC to help Jenny move out of her dorm and attend graduation. Well, she had such a busy last couple of weeks that packing is all that really got done the day we arrived. If you remember my last post before we left town, Ethan had an ear infection and the day we left, Dan also started not feeling well. :-( By the time we made it to our destination, Dan had a full blown fever/chills and crawled into bed at the hotel and stayed there most of the day/evening. Fortunately, Ethan felt good for the trip - as I've come to learn with his 2 back to back ear infections that he had, the first 24 hours is the worst and then he feels fine for the duration of the ear infection. With 2 sick boys, I had to stay at the hotel to take care of them so I couldn't help with packing.

Day 2 - Graduation Day! We were all pleasantly surprised and proud that the baby of the family graduated Cumm Laude from her school. This is way better than I ever even came close to doing - and this was her 3rd school in 4 years! After graduation, we all went downtown for a celebratory lunch with a couple of her closest friends. Then it was time to head back to campus to help Jenny finish packing and moving her stuff off campus to storage for the summer. She'll be returning in the fall to share an apartment with a few friends still in school. Well, by that time, it was Ethan's nap time and there was no place for him to nap except in the car (which he actually fell asleep in during the ride back from lunch). So we were able to get out of packing/moving and got a head start on the rest of the family to the beach. We arrived at dinner time, found a place to go eat and then went ahead and hit the grocery store for the week. The rest of the family made it around 9pm.

Day 3-9 All the mornings at the beach started out pretty much the same. Dad (Pop-Pop), me, Brandon, and baby Annie (who napped after her first feeding) all got up around 6-7am and enjoyed a couple hours of quiet time until the rest of the house woke up around 9-10am. The first couple of days at Myrtle, it rained and was kind of chilly. We spent most of our time in the beach house just relaxin'.

Highlights during the week included my sisters and I having a girls day out - shopping and lunch at the outlets (while Mom (aka Mimi) babysat the grandkids), the men all going golfing together later that same day, Mom & Dad enoying an early anniversary gift from the kids - going to Le Grand Cirque, several yummy dinners out like at Jimmy Buffet's Margaritaville at Broadway at the Beach, Carolina Roadhouse & Crab Catchers, running into some church friends at the condo's pool, and shopping at Barefoot Landing! Mimi even bought Ethan a personalized children's CD that says his name more than 45 times during the 6 songs on the CD.

Some less memorable events included having the golf cart stollen from our condo the day before we left, Ethan busting his lip open at the playground at Broadway at the Beach, and Ethan having a diaper blowout on my leg at Margaritaville (oh the joys of motherhood!) during dinner, and me getting a striped sunburn on my leg from missing spots with the spray on sunscreen the day we went to the beach/came home.

Well that about sums up our one and only "summer" vacation for the year. Back to reality now - lots of hot, humid NC weather (except for the flooding, 3+ inches of rain and mid-70's day we're having today), and trying to keep cool finding by finding friends with free pools in their neighborhoods to go visit!

Pray for Lindsay

I really truly have on my to-do list for today to add the promised pictures and update on Ethan. But before I do that, I really feel it's more appropriate to start with an update on Ethan's heart buddy, Lindsay, that I mentioned in the last post.

Lindsay was right on track with recovery from her heart transplant and they were even starting to make plans to head home in a couple of weeks but things took a turn for the worse and Lindsay is now back in ICU (instead of moderate care) and on ECMO (life support). Please keep "The Princess" Lindsay and her family in your prayers. It turns out that Lindsay aspirated (something that's common to heart babies after surgery - Ethan struggled with this but not to this extreme), which caused her to have a seizure. She is stable at this point and the medical team, as well as Lindsay's family, think that staying on ECMO for a few days will help her body have some time to rest to recover from this event. For more information, please check Lindsay's blog.

OK, time to go edit pictures so I can get working on putting together our long-overdue beach trip post!

22 months!

I can't believe it's been 5 weeks since I last updated. Fortunately, I can safely say that we have all been healthy since our last post! So much has happened since then so I will probably post several updates to keep from having just one super long update.

First, I'll start with the most current news. Our little guy is not so little any more! Today he turned 22 months old. He's weighing in at a whopping 27 pounds right now and I think he's also going through a growth spurt, eating us out of house and home! Hard to believe that he will be turning 2 in 2 more months!

And also Ethan's crush (he gets this glazed over, goofy grin every time he sees her picture), princess Lindsay, turns 1 year old today! Happy Birthday princess Lindsay! For those of you that may not remember Lindsay, she has the same heart condition as Ethan (HLHS). Her first surgery went well, her second surgery didn't and she ended up on the transplant list. She has been in the hospital since October (her second surgery) awaiting her perfect new heart and last Friday she got it! You can read more here.

And in other news, my baby sister, Jennifer, just left home yesterday for her 6 week mission trip/school internship in Turkey. I have included her blog link in the side bar for those of you who want to follow her.

Well, that's enough for right now. Updates and pictures to follow in another post about our family beach trip and Jennifer's college graduation.

Ear Infection

When will this bout of illnesses leave our family? Fortunately, Dan and I are healthy for the time being. But poor Ethan, he (and I) barely got any sleep late Friday night/early Saturday morning. The poor kid cried his eyes out until 4am, when I think he finally passed out from sheer exhaustion. The only time he would calm down is when I'd pick him up from his crib and hold him and rock him in the glider. I could tell he wasn't feeling well but couldn't pinpoint what was wrong - no fever, no runny nose, no symptoms of any kind as far as I could tell. Saturday morning, Ethan woke up at 8:30 and did develop a 2 degree fever and was still fussy (who blames him with only 4 hours sleep!). So while I got to sleep in a bit and get ready for the day, I urged Dan to call the urgent care office of our pediatrician to figure out what was wrong. Dan managed to get Ethan a 10am appt. and graciously took Ethan to it so I could have some time off.

What did I do with that time off? Last year for Mother's Day/my birthday (same weekend), Dan gave me a spa certificate and here it is, a week from my birthday (aka - the expiration date on the certificate!) and I had yet to redeem it. So Friday morning, I called and booked myself a 1 hour Swedish massage appointment that I couldn't cancel. So I took full advantage of my morning off to pamper myself (funny that Pampering Ourselves was the topic at MOPS last week!). And while I had a nice, leisurely morning/afternoon, my boys anxiously waited at the peds for 30+ minutes past their appt. time before being taken to an exam room for their appt.

Turns out that our poor little man has a double ear infection. Nothing that more Amoxicillin can't cure, huh? So, we took it easy the rest of the weekend to catch up on rest and let the little guy try to get better. We're keeping him comfortable with children's ibuprofen and treating the infection with a more expensive form of Amoxicillin than what we were prescribed 2 weeks ago for the "possible" strep.

Not Strep

So Ethan's slowly getting better. We finally (last Thursday I initiated the call) heard back from the peds. office and it turns out the other strep test was also negative. I think it's just another cold/runny nose. Since the ped. was so wishy-washy about whether or not to cotinue all 10 days of the Amoxicillin after we found out the result of the 2nd strep test and since it didn't seem to be making any difference, we decided to d/c the Amoxicillin ourselves. Ethan's sleep schedule was getting thrown off by us forgetting to wait a whole 12 hours and we decided sleep was more important than an antibiotic that wasn't working. Sleep seems to be the best medicine right now. Ethan's been sleeping his normal 11-12 hours again at night and adding an extra hour or two to his afternoon nap time (4 hours instead of 2-3)!

Strep?

Ethan had a rough night on Sunday - we put him to bed at regular time but 5 hour later, after lots of crying, coughing, holding his throat, runny nose, Tylenol, and Benadryl, we finally got him to fall asleep. When he woke up Monday morning, he was a little rested but still feeling pretty miserable and just had that "sick look". So I called the pediatrician and got him in for early afternoon (during nap time). Having known that he was exposed to strep last week, I was able to talk the doc into running a strep test. The rapid test came back negative and we should know the other test result by Wed. (tomorrow). The doc (which by the way was the best one we've seen yet in that office!) did say that Ethan's throat looked red and swollen but no puss so he didn't think the other test would come back positive but went ahead and prescribed Amoxicillin just in case. You know these heart babies - you can't take any chances and he's definitely got some kind of illness - and the doc kept repeating that it doesn't look like a viral bug so he still recommended us finishing the full 10 days of the antibiotic even if the test does end up negative tomorrow.

Soooo, we're just laying low today, trying to let Ethan catch up on rest since he didn't sleep well Sunday night and didn't get a nap yesterday. He did sleep all night long last night though, so that was good. So if you get the chance, keep us in your prayers this week that this bug will not last long and that Ethan can get to feeling better soon.

Also, please keep our other heart buddies in your prayers - especially baby Stellan who had to have surgery this morning to try to fix his rapid heart rate (SVT). I haven't posted about Stellan before as he's one of our newest heart friends but I'll add his link on the right with our other heart friends. And also remember to keep princess Lindsay and Sofia in your prayers as they have both been waiting multiple months for a new heart - both at University of Michigan (U of M).

Family Update

Well it's been a pretty uneventful past couple of weeks here in the Miles' household. Ethan is continuing to do well physically and stay very active like all the other kids his age. He babbles all the time but still doesn't say much that we can understand so we're continuing to work on vocabulary and adding more sign language for him. Below is a list of what he knows so far:

WORDS:

* Da-Da

* Ma-Ma

* Ba-Ba (for bye-bye)

* Nuh-Nuh (for night-night)

* Guh-Go or Ma-Mo (for Elmo)

* Hoo-Hoo (for dirty "poo-poo" diaper)

* Bah (for ball)

* Mimi (for Julie's mom)

* Bop-Pop (or Pop-Pop for Julie's Dad)

* Ca-Ca (for Aunt Jessica and for chocolate!)

* Bo-Bo (for Uncle Brandon)

* Be-Be (for baby)

* Ah Gun (all done/all gone)

* Nana (for banana)

SIGNS:

* more (accompanied by saying "m-m-m")

* milk

* all done/finished (accompanied by "ah gun" for all gone)

and we're working on learning please, thank you, help, hurt, juice & water this month

Ethan can also point to various body parts and knows the sounds for several animals. He loves the song "Head, Shoulders, Knees & Toes" and "If You're Happy and You Know It" - both usually get him giggling or at least distract him from crying if he's upset.

In other news, all 3 of us have had some kind of cold/sinus/allergy problem on and off since around Valentine's day. Just as soon as we think we're on the mend from one sickness, we get sick all over again. Dan's been feeling the worst and finally went to the doctor last Monday (3/30). His doctor said he's got Pertussis (whooping cough) and quite possibly also RSV - scary!

Fortunately, I think Ethan's received enough doses of the DTaP vaccine (P being for Pertussis) that I don't have to worry about him contracting it but I am still being very careful about Ethan's exposure to RSV. This is the big respiratory virus that can be life-threatening (if left untreated) to preemies and young babies (mainly under 6 months old) who have other heart/lung issues.

In case you don't remember or just found our story, RSV is the same virus that we had to safeguard against last winter by having Ethan get monthly antibody shots from Oct.-April. Due to several factors this year: 1) Ethan's older, 2) he doesn't have his next surgery any time soon, and 3) his 2nd heart surgery/hospital stay was significantly cheaper than those shots, we opted to pass on those shots this time around.

Well sorry for the long update. For making it to the end of this post, here's some pictures I took the other day!

Mimi & Pop-Pop with their 2 grandchildren!

Enjoy a home-made chocolate chip cookie!

Still eating and making a mess!

cousin Annie's arrival

Well, she's here! Ethan's cousin Annie made her arrival at 5:01pm today, 3/14/09 - on her due date! She's 8lb. 2oz., 21" and so pretty. She's got dark hair and blue eyes. We hope to take Ethan over to the hospital to meet his little cousin tomorrow after church.

Sedated Echo

Well, we survived the sedated echo (ultrasound of the heart) at UNC yesterday. It was a crazy day from start to finish. I'll do my best to keep it brief and to the point! Let me just say, our 1 hour appointment turned into 4 hours!

We arrived a few minuts early (as requested in our confirmation letter from the cardiology nurse) to fill out the required paperwork. Turns out there was some kind of mix up and even though cardiology had us on their calendar, they must've forgotten to put it in the hospital registration system! So then we had to get the run around because the registration folks had no clue what to do with us without an official appointment. They called the peds cath lab (where our appointment was supposed to take place) and the cath lab nurse told the registration folks to let us just come on back and they'd get everything fixed.

Once we got back to the cath lab, we had to wait at least half an hour for them to get us in the system and checked in and fill out paperwork. Then it was time to start sedation. By this point (9:30am) Ethan was already tired from being up 2 hours (this is about the time he would just be getting up). And it didn't help at all that he wasn't allowed to eat after 3am and no drinks after 6am. From the time we arrived, he just kept saying "nigh-night" and I told him that's what we were here to do - to take a nap. The nurse started with an oral dose of Versed to make him loopy and careless. His nurse warned us that if the oral med didn't help, they'd have to do an IV. Well sure enough, the med had the opposite affect - it made him more alert!

So, sure enough, the IV was ordered. This same nurse attempted to give Ethan an IV twice but both times the IV blew and so she had to call in some help. After 2 more attempts, they finally got a good vein in his right foot. Poor little guy was just miserable during all the poking and prodding. This just broke my heart to the point of tears at watching him endure all the pain - just to get him to take a nap! This whole process took the longest part of the day - lasting almost 2 hours. The hardest part was being asked to be the one to help hold him down while they tortured him. Now today he's got bruises in both arms, wrists, and feet.

Once he was asleep, we were able to call in the sonographer to begin the echo. This only took about an hour and we got to watch. Everything looks great with Ethan's heart function right now, so we're thankful for that! We are scheduled for another echo (not sedated, thankfully!) at the end of July and by that time, Ethan should be a little more cooperative since it'll be just a few weeks before his 2nd birthday!

After the echo, we had to wait around about another half hour for the anesthesia to wear off and let Ethan have some crackers, cheese and 2 juice boxes of apple juice. Once his nurse felt he was alert and coherent enough again, we finally got out of there! By that time, Dan and I were hungry so we went to my favorite place to eat around there - Mama Dip's! If you live in the are and have never been, you really ought to check it out sometime. It's one of the best southern-cooking restaurants around! Ethan was pretty cranky and irritable during the meal so we made it a quick meal.

Then we proceeded to make the hour drive back home and Ethan slept most of the way but then woke up once we got home and decided he'd had enough sleeping for the day. So we had a busy afternoon/evening keeping a close eye on him as he was still a little clumsy until dinnertime.

See, I told you it was a crazy day! Thanks for checking in on us. We don't have any other appointments coming up soon so we hope to just stay healthy and out of doctors offices/hospitals, except for visiting Ethan's cousin Annie when she's born - she's due on Saturday so we look forward to meeting her soon!

Sick but on the mend

So we've all had a cold for the past 11 days but I think we're finally on the mend. It started last Tuesday when I picked Ethan up from the MOPS nursery at church and they said he had a runny nose. We came home and he was fine the rest of the day but then started again the next day. By last weekend, Dan and I started having an itchy throat and coughing and then Ethan started coughing as well. Dan and Ethan stayed home from church last week. I would've stayed home as well but I'm facilitating a Financial Peace University Sunday school class at church and last week was the first week.

For those of you not from NC who read this blog, we enjoyed 3" of snow on Monday then it gradually warmed up all week and now this weekend we're having upper 70's - low 80's, so it's no wonder it's hard to stay well this time of year! I also babysat Ethan's cousins 2 days this week and they were both sick so it's been a crazy week. Between our family's coughing and the cousins having earaches and fever, I've been sanitizing and cleaning like crazy. I finally broke down on Thursday and took Ethan to the pediatrician to make sure his cold hasn't turned into anything more and fortunately it hasn't. I was surprised to learn that even though he's had a decreased appetite this week, he's still managed to gain nearly 3 pounds since our last cardiology visit at the end of January - he now weighs almost 28 pounds! As for his cold, poor little guy, the doc said I'm doing all I can do for him right now, he's just got to ride it out. As a result, none of us have been sleeping well and I'm sure that isn't helping us to get better any faster either.

Oh, and with all the craziness in our lives recently, I forgot to post that we finally heard back from the Cardiology Dept. at UNC and we're scheduled to do the sedated echocardiogram (ultrasound of Ethan's heart) this coming Tuesday, March 10 at 9:00 AM. He can't have anything to eat after midnight but he can have clear liquids until 6:00 AM. The procedure is only supposed to last about an hour and if all goes well, we should be able to come home as soon as Ethan wakes back up. So please keep us in your prayers that all will go smooth that day.

On the lighter side, Ethan has added a new word to his vocabulary - he can now say "bah, bah" for bye-bye - do we have a Southern kid or what! He's also learning to throw a ball, sign the word for "more", and he loves to climb on everything - especially the coffee table.

Thanks for checking in on us. We'll update again after the echo on Tuesday.

18 months!

Ok, so this was supposed to post yesterday but I got too wrapped up in watching the UNC Tarheels beat the Duke Blue Devils last night to remember to post this - Go HEELS! Anyway, yesterday, 2/11/09 was the day Ethan turned 18 months old! Combined with the fact that this is CHD Awareness Week and Valentine's is on Saturday, we decided to run with the heart theme and make a heart shaped valentine's cake to celebrate Ethan's milestone!

And speaking of milestones, let me share what Ethan's been up to lately:

-He weighs 24 lb. 14 oz. (as of last Thursday's cardiology checkup, so he's probably already hit the 25 lb. mark!)

-Ethan is getting to be really good at walking and running and climbing - especially furniture!

-He still doesn't say much that we can understand besides "Mama", "Dada", "Mimi", "anana" (banana) and his newest word is "ba" for ball!

-He knows most of his body parts and points them out each time we ask where they're located.

-By far, his favorite food is bananas - he usually eats a whole one each morning for breakfast, in addition to a bowl of Cheerios (and they say heart kids often don't like to eat and have trouble gaining weight...?!?) A funny story about bananas - Ethan and I were at the grocery store this week (I usually try to go on the weekends when Dan's home to watch him since Ethan can't stand Food Lion's grocery carts) and when Ethan saw me put the bananas in the cart, he picked them up and hugged them!

-Ethan loves to clean (mainly dust/wipe up stuff but also likes to mop!) and is also fascinated with keeping doors closed!

Well that's about all for today. Thanks for checking in with us. Hope you all have a great Valentine's weekend and please continue to help us spread the word about Congenital Heart Defects!

Congenital Heart Defect (CHD) Week!

Yesterday began Congenital Heart Defect (CHD) Awareness week. "Congenital" very basically means that you are "born with it." And "Heart Defect", well, that's self explanatory. :) Another CHD affected family posted this information on their blog and asked that others would pass it along. I never knew much about CHDs until Ethan was diagnosed. I knew they existed, but didn't know any specifics. I've also included a little bit about Ethan's specific defect, Hypoplastic Left Heart Syndrome. Thanks for taking the time to read this and to help spread the word as well!

*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Downs Syndrome).

*1 in 10 of those born with a CHD will have a fatal defect.

*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

*There are approximately 35 know Congenital Heart Defects.

*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children (Julianne included).

*Hypoplastic left heart syndrome occurs in 4 to 16 out of every 10,000 live births, and accounts for about 8 percent of congenital heart disease in babies. Under-development of the heart structures occurs during the first eight weeks of pregnancy. There is often no clear reason for the development of congenital heart defects. In some cases, there might be a genetic link or an environmental exposure that makes the defects occur more often in some families. In other cases, there is simply no known cause.

Pictures!

Ok, so here are some long overdue pictures from our 3" of snow a couple weeks ago, along with a few others just for fun! And just to preface the last one, Ethan really does enjoy cleaning and actually was fussing that I was doing all the "fun stuff" today without him!

Checking out the snow first thing in the morning!

Trying to get unbundled before going outside.

Outside with Mommy and Cousins M & R!

Learning to walk through snow!

This white stuff's pretty cool!

Checkin' out the kitchen

All bundled up

Helpin' Mama mop the kitchen

We're still waiting to hear from UNC about scheduling his sedated echo. It's been nearly a week so we should hear something pretty soon. Otherwise, we're doing well. Ethan's cutting some more molars and has been pretty fussy/clingy for the past 5 days. He didn't have much of an appetite over the weekend and ran a very slight fever (99.2) on Saturday so we never made it to the birthday party. :-( We did manage to make it to our MOPS (Mothers of Preschoolers) groupwide playdate yesterday at Raleigh School of Gymnastics behind our church. Ethan and all the other kids seemed to have a blast! And from what I heard from other moms on Facebook yesterday afternoon, it wore all the kids out and they all took really good, long naps (like that's anything new for Ethan, he naps 3-4 hours in the afternoon anyway)! Were it not for the dinner plans with my parents last night, no telling how long Ethan would've stayed down for his nap - poor guy had to wake up after only 3.5 hours! LOL

January recap

What a busy month this has been! Not to bore you with too many details (as I am often known for!), I'll make this post fairly quick. The big highlights for this month included a baby shower for Aunt Jessica (due in March), nearly 4 inches of SNOW on Jan. 20th, shopping at the Kids Exchange (huge bi-annual consignment sale), a cardiology checkup, and one of Ethan's church buddies 1st birthday party (tomorrow).

The baby shower for my sister, Jessica, was a lot of fun. It was a lot of work to plan, but totally worth every minute of it! My mom (Mimi) hosted the big event and my other sister, Jenny, helped with food and decorations. Thanks Ethan for bearing with me on all the shopping trips to Target, the dollar store, and beyond as I gathered all my supplies for it. Thank you also, Dan, for watching Ethan so I could have all afternoon at Mom's house to decorate, set up, throw the shower then clean up without having Li'l E clinging to me!

Snow day was also a lot of fun - Ethan's first real measurable snow! He didn't like me bundling him up at first, but then when we got outside, he didn't mind at all! We babysat Ethan's cousins half the day so their parents could work and we had a blast playing in the snow, having snowball fights, making snow angels and playing with our new neighbors. I know we've been bad about not posting many new pictures lately, we'll hopefully get some snow pictures up soon (we did manage to get them up on Dan's facebook account at least).

The Kids Exchange is always a highlight of the new year for me. I have yet to actually sell anything because I don't know if we'll need it in the future if we ever have any more kids. I just enjoy going for all the great bargains on anything and everything for kids. This year, I managed to snag a few Elmo and Veggie Tale DVD's, an old U2 CD for Dan, and lots of spring/summer clothes for Ethan. We went on a weekday while Dan was at work and Ethan did amazingly well during our hour and a half of shopping and another hour standing in line to check out!

Ethan's cardiology checkup yesterday went pretty well. At 17 months old, he doesn't like to stay still very long and he's becoming increasingly aware of his surroundings and started crying/trembling the second I put him on the exam table to undress him to get weighed (even without the nurse or doctor in the room). He weighed in at 24 lb. 14 oz. and his blood pressure seemed fine according to the nurse. The echo went about as rough as last time (Sept.) - Ethan just cried and kept pushing the tech's hand away. I had been dreading this part because I know they need to get some good pictures of his heart so I came prepared as best as I could with everything from toys to snacks to chocolate - nothing seemed to work. The tech did manage to get a few good pictures but not as many as our doc wanted so a sedated echo at UNC has been ordered for sometime in the next month or two (the good news is that they aren't rushed or didn't see anything of concern on what few pictures they did get). So we're now just in a waiting game - we're told it could take up to two weeks just to get the call about the appointment.

And last but not least, since Ethan's friend's birthday party isn't until tomorrow, nothing to really report about that yet. I'll just say that it's a girl's party since he doesn't have any boy playmates at this time!

Thanks for checking in on us. We'll try to get some more pictures up soon (they just take so long to load that I can only do a few at a time so be patient!).

Happy New Year!

I just realized it's been a few weeks since my last post. Things are still going well here in the Miles household. Ethan's getting to be quite mobile as he gets more and more steady on his feet and he's starting to move even faster (not quite running yet - thankfully!).

We had a busy Christmas season but it was a lot of fun. We celebrated Christmas Eve by volunteering in the church nursery for one service and planned to run and grab a quick bite to eat before heading back to church to catch the 2nd service but all the fast food was closed so we ended up at a Chinese buffet and never made it back to church. We ended up coming back home, putting Ethan to bed, then Dan and I each opened one gift before heading to bed. Christmas morning we went to my (Julie's) parents house to open gifts and have brunch then we rushed back home to have Dan's family all come over for a light lunch and to open more gifts. Then Christmas night, we ended up back at my parent's house for frozen pizza and snacks and a movie.

Between Christmas and New Years, Dan did some electrical home improvement projects around the house. He added under the cabinet lighting in the kitchen for me and he also added more overhead lighting in the garage for himself. We weren't originally planning to do all that at once due to our budget but Dan found the garage lights 3 for the price of 1 and coudn't pass it up!

We had a nice quiet New Year's here at home as well. Ethan went to bed around 8:30pm and Dan and I played some board games together then dozed off around 11pm and woke up at 11:58 - just in time to ring in the new year then roll back over in bed and went back to sleep until almost 10am!

Ethan goes back to the cardiologist the end of this month and we just pray that he'll be more cooperative in letting them do an echocardiogram this time than last. Well, that's about all for now. I think Dan just took some new pictures of Ethan so I'll try to get those posted soon. Thanks, as always for checking in with us and we hope you have a very happy new year!