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!).