Ok, I promised it wouldn't happen again, but life happens, and I have failed to keep up with blog posts. Darn!

So what's been up? Lots. Evan has been a busy bee since my last update. This past weekend we participated in the Tampa Congenital Heart Walk. This is only the 3rd year there has been a walk in Tampa and I was sad to see few participants/supporters. Next year I am making it a priority to do what I can to shine some light on the event. Evan had a great time riding around the track in the stroller while I huffed and puffed to keep up with Elli, who insisted on running the entire first lap (1.5 miles!). She definitely took the walk seriously :) 

Evan has also dealt with two ear infections and what was suspected to be croup (but it wasn't). He was a grump for sure but did well, considering. It's been unseasonably warm here in Florida these past few months and we are definitely taking advantage of the awesome weather! We have made several trips to Disney and Aquatica water park. Evan loves Disney days and had a blast meeting Mickey and Minnie for the first time. He gave Minnie a big, wet kiss on her nose :) So stinkin' cute! He loves the rides and enjoys watching his sissy get so excited. The water park is hit or miss, ha! He loves splashing in the water, but does not like the super speed "lazy" river because you get sprayed with water. He did, however, fall asleep in his life vest after one trip around in the water and poor Dad had to go sit with him while still in the water and keep his head afloat while he napped.. Oh the things we do for our babes. 

Evan had his Cardiologist appointment last week and got some really wonderful news. His heart function looks fantastic and his leaks are still very minor. We will be keeping him on the enalipril and go back in 3 months again! It's so weird to think just a year ago we were scheduled every 2-3 weeks for appointments! And I just have to say, I absolutely love the staff at his Cardiology clinic. The nurses and receptionists are wonderful, they always take the time to entertain Evan and do whatever they can to make sure we are comfortable during the visit. His sats were good and he sat thru the EKG completely still while watching his favorite nurse dance around and blow bubbles, lol. She is the best! His echo lasted almost 30 minutes and thanks to Yo Gabba Gabba, he cooperated long enough to get the important shots. We also visited the Pediatrician for Evan's 15 month check up. He is 24lbs 120z and 31.25" long. He is continuing physical therapy until he meets his new set of goals and received a referral for speech therapy. We also got a referral to the eye DR because Evan's eyes seem to cross when he focuses. Praying it's all in my head and he is just fine.. 

Now, on to the AWESOME news! After a few months of literally no progress in physical therapy, Evan has finally decided he wants to move and has been trying so hard to catch up! He is able to pivot side to side on his belly, can get to the sitting position from his belly, can get down to his belly from sitting, is pulling up on the couch, taking big steps while holding hands, and started crawling today!!!!! I put two of his toys about 6 feet away from him and with some encouragement, he crawled all the way over to them! Oh, the tears of joy, such a simple milestone that has been a difficult mountain for my dear son to overcome.. It's just the most wonderful feeling to see him accomplish something we have been working so diligently on! I cannot wait for him to show off tomorrow in physical therapy! :)

Thank you all for continuing to send positive thoughts and prayers for Evan and our family. It is so great to have such an amazing support system <3 Much love!

The gang w/ Mickey & Minnie 

Water park! 

My monkey :)

Evan @ the Tampa Congenital Heart Walk 2012

CHD Awareness Week + Pinterest = Pure Awesomeness!

If you haven't heard of the website Pinterest yet, well, you must be living under a rock. It has quickly become one of the most talked about sites and I have to admit, I am an Pinning Addict. And proud! I have made so many awesome crafts and recipes from my pins! And thanks to a fellow heart mom, I now love it even more! Congenital Heart Defect Awareness Week is February 7-14 and we are spreading awareness every way possible. There is a board on Pinterest labeled "The Faces of CHD - Congenital Heart Awareness Week Feb. 7-14,2012", you can find it here. Kids with CHDs from all around the country are featured as "pins" on this board. So head on over and read their stories and "Aww" at their cute little faces ;) And of course, don't forget to repin and help spread awareness! :)

Evan was born 12/1/2010 with Hypoplastic Left Heart Syndrome (HLHS), Aortic Atresia, and Mitral Stenosis. He endured his first open heart surgery at 8 days old. Evan suffered seizures and a paralyzed left vocal cord post surgery. His paralyzed vocal cord caused him to aspirate milk into his lungs. Evan had a feeding tube placed into his tummy at 4 weeks old. Evan had his second open heart surgery at 5 months old and recovered quickly! He had his feeding tube removed and was taken off of his seizure medicine. He still continues to struggle with his fine and gross motor skills. Evan is still awaiting his third surgery.

 And look at him now! He is happy and so so sweet, we completely adore every second we have with him. Sometimes at night while I am rocking him to sleep, I can't help but wonder how long we will be blessed to have him with us. It's hard to think of your child as terminally ill when they look so darn healthy! But, that is part of living with a CHD. You can't tell most babies/kids have a heart defect until you see the scar they proudly wear down their chest. <3

Heart defects affect 1 in 100 babies. CHDs are the #1 birth defect. There are 35 different heart defects. Currently, there is no explanation for what causes a CHD.

Merry Christmas and Happy New Year!

Hope everyone had a wonderful Christmas and New Years! We have been extremely busy here at the Sawyer household. We tried to hit every local Christmas event we could, and completely enjoyed spending the holidays at home with our families. It was so nice to have Evan home this holiday season, I am definitely looking forward to all of our future holidays together! 

I forgot to update after Evan's cardiologist appointment. His cardiologist is finally back from maternity leave and it was so nice to see her again. Evan's sats were in the high 80's, his BPs were great, his EKG looked fantastic, and his Echo looked wonderful. :) Evan has a slight Tricuspid Valve leak and his cardiologist has been fine with just watching it to see if it got worse and adding medication if necessary. Well, while she was out, the cardiologist covering for her decided to put Evan on Enalapril for the leak. I only agreed because there were no major side effects. I don't think our normal cardiologist was too thrilled to come back and find him on the med.. But, she left it as is since it wasn't hurting anything and we had already formed a routine around it. Oh well. She was very happy with his heart overall and we are not due back until MARCH! :)

I'll be honest, I have been avoiding updating my blog. Everytime I say "Hey self, you should update about Evan" the only thing I can think about is how delayed Evan is developmentally and how frustrated I am. And I don't want to write about that. But then yesterday, Evan started doing something wonderful! He is taking steps while holding onto my hands! WOOHOO! He used to lock his knees while he was standing and you couldn't even force him to bend and take a step, and now out of nowhere he is taking step after step and walking assisted! He is still not crawling, but he will get up on all 4s and rock back and forth. His therapist thinks he will skip crawling. We just can't get him motivated to move! The therapist was telling me on Thursday that while we are so lucky to have such a happy baby, it is also his downfall. He doesn't care if you take a toy out of his reach, he is content to just play with his hands or the floor. I've decided he is just a smart little dude and likes to take his time figuring things out. When he sees something he really wants, he'll figure out how to move. Until then, I'll just keep working with him. 

Well, that's all I've got ;) Ta Ta For Now! 

Merry Christmas! (Evan puked on his cute Christmas outfit, and Dad's too ;)

Haha, Evan and his cousin Clyde, the cutest Reindeers on the block! 

Elli's reaction to the "best gift ever", Disneyworld Annual Passes!

Firefighter Evan, following in his Daddy's footsteps :)

An Anniversary and a Birthday Party!

One year ago today, Scott & I began our morning praying Psalm 91 over Evan. We gave our "see you soon" kisses and headed to the waiting room. Evan was wheeled back at just 8 days old to have his first open-heart surgeries. It was such a long day. It was six hours before Dr. Chai, the surgeon, was completely finished and came to tell us the good news - the surgery went very well! This is one of the last pictures we have of Evan before his chest was scarred forever. When we were finally able to go back to Evan's room, he looked better than I had expected. & that day, I witnessed a miracle. The DR had not closed Evan's chest yet, just pieced the skin together over top of his heart. I could see his tiny little heart beating under his skin.. It was so amazing to physically see Evan was fighting to live, fighting to fulfill God's plan for his life, fighting to be here with his Momma..


This past Sunday we celebrated Evan's First Birthday by throwing a Yo Gabba Gabba Bash! He had such a great time, we really appreciate everyone being there! Evan's favorite part, of course, was his cupcake! He was a little apprehensive at first, but once he tasted that icing, it was game on! He was covered from the tips of his fingers to his elbows in cake and icing. He did not want to miss a single crumb! He was literally sucking it off of his fingers, lol. It was definitely a sight to see! We are so blessed and thankful that we were able to celebrate at home, healthy and happy! It has been a wonderful first year and we are definitely looking forward to more to come! Here are some pictures of the Gabba-filled party:

Goody bags

Yo Gabba Gabba - Evan starring as Muno, Big sister
Elli as Toodee, Momma as Foofa, & Dad as Plex

Oooo Balloon!

The most amazing cake ever! Thank you Icing Smiles!

Yummy!

Evan and his cousin Cc, he can't wait for his turn!

A year of Evan :)

& Last but not least, Evan has made the local paper! The article will run tomorrow, but was released online today. You can read the article here. I am so excited for our first Polk County Moms of Heart Warriors meeting on Monday! Looking forward to meeting fellow heart moms in my area and expanding the group!

New Local Support Group for Heart Moms

Evan made the news! You can check out Evan's story here. I recently started a new local support group, Polk County Moms of Heart Warriors, to offer support, encouragement, and resources to local Heart Moms. With our first meeting coming up, I wanted to ensure all of my fellow Heart Moms were aware of this new group and had some time to plan ahead to attend the meeting. What better way to reach the community than thru the news?! I am blessed to have a great friend in the media biz who was able to help get our story out there; it's refreshing to know people are still willing to help out a good cause. Ironically, Bay News 9 came to interview us on Evan's first birthday :) He was so sleepy, but did a great job smiling for the camera (really you shouldn't expect anything but smiles from the kid..) lol 

For anyone planning on attending the meeting, here is some information on the location and what to expect.. 

The first meeting will be held Monday, December 12 at 6pm at the Community Building next to the Providence Fire Station. The building is directly to the right of the station. The Providence Fire Station address is 8936 Hwy 98 N., Lakeland, FL. Refreshments will be provided and the first meeting will serve as a "meet and great".  

To join Polk County Moms of Heart Warriors on Facebook, please click here. If you have any questions or to request additional information, feel free to email me either thru my blog or at pcmomsofheartwarriors@hotmail.com.

I look forward to meeting you all! <3 

Your worth every falling tear, you're worth facing any fear

I can't give you half my heart and pray He makes you whole 

You're gonna have all of me, you're gonna have all of me

Cause you're worth every falling tear, you're worth facing any fear

You're gonna know all my love, even if it's not enough

Enough to mend our broken hearts, but giving you all of me is where I'll start...

(An excerpt from a favorite song of mine, "All of Me" by Matt Hammit. This song has helped me thru a lot this year...)

I knew Evan was going to change my life. From the moment we found out about his heart, I knew we would never be the same. What I didn't know, was how he was going to change me. I was Sad. Angry. Scared. Determined. Hopeful. Faithful. Weak. Helpless. I was lost, and Evan saved me. He strengthened my faith in the Lord. He gave me a relationship with God that I never had. And without that relationship, I never could have made it thru this year; Evan wouldn't have made it thru this year. But, here we are, two days shy of Evan's first birthday and I am so grateful for God's love and healing he has provided for my baby boy. You are safe in the arms of the Father! Evan is a living miracle, you cannot deny that.. 

People often commend my strength thru everything we have been thru this past year. I always respond that I am not strong, just faithful. It's the truth. The feeling of peace I felt before, during, and after Evan's surgeries is indescribable. I rarely think of Evan as only having half a heart. We don't dwell on the fact that he is considered "terminally ill" or his life expectancy is "unknown". I find it peaceful to know if the Lord called him home tomorrow his heart would be whole and he would never know pain again. Am I scared of what's to come? Of course. You can't be a Heart mom and NOT be scared of losing your precious child. It's a common occurrence in our community, and I cannot express how saddened I am every time a CHD baby earns their wings. All I can do is squeeze my little guy a little tighter, and pray he will be with me another day. 

I cannot take Evan anywhere without being stopped by a total stranger to have Evan smile at them for just a few more seconds. He is just so happy all the time. I have never seen someone not smile back at Evan when he flashes those big brown eyes at them and grins from ear to ear. He just makes you melt, really, I'm not just saying that because he's mine :) I absolutely love hearing how "healthy and happy" he looks. I am so proud of him! Evan has been thru two open-heart surgeries this year and his little scars are the only reminder. I never wanted Evan to suffer; I was so worried about his quality of life.. But he shows me everyday how happy he is to be here with us, and life doesn't get any better than that. 

Evan is rolling over, sitting up, scooting on his bottom, clapping his hands, waving bye bye, giving kisses, playing with toys, saying "mama" and "dada", and grinding his teeth (lol). He is still delayed, but slowly we are catching up. He has been getting up on all fours and moving his hands to crawl, he is definitely strengthening his upper body. I couldn't be more proud of the progress he has made since his second surgery. He may be reaching milestones slower than others his age, but he will catch up, and soon this will all be just a memory. 

It has been quite the year, we've had our ups and down, but I wouldn't trade any of it. I am so in love with my big boy and cannot wait to see what's to come <3 

Evan's First Year <3

4.5 hours before Evan was born :)

Pre-surgery, swollen from medication (1 day old)

Post Norwood (9 days old)

Hi Mama, so nice to see you <3 (2 weeks old)

First Christmas (3 weeks old)

Snuggly & warm at HOME (1mth)

The first of many smiles to come (3mths)

Mama I hate tummy time! (4mths)

Post Glenn (5mths)

Smiling the day after his second open heart surgery :)

Enjoying his freedom post Glenn! (6mths)

Pool time! (6mths)

hehe, rolls galore! (7mths)

Our little HERO (7mths)

Enjoying the TN mountain air (8mths)

Bath time! (9mths)

First trip to the park (9mths)

Loving the beach (9mths)

1st trip to Daddy's work (10mths)

Love my Mama (10 mths)

           

1st Halloween w/ my big sissy (10mths)

Happy Turkey Day! (11mths)

My first Birthday present, 2 days early ;)

Well, we almost made it.

No ER visits. This has been my goal since December 31, 2010 - the day we brought Evan home. We were so close to making it a whole year without an ER visit, but yesterday we just had to go in. I noticed Evan was feeling a little warm after lunch and just to prove myself crazy (for the millionth time) I took his temperature. I put the thermometer in his ear and after a quick beep, it read 101.something.. Um, what?! I seriously checked both ears several times to make sure it was right, because Evan never has a fever, I'm always wrong!(When it comes to him feeling warm, that is.) I whipped out the tylenol, waited 45 minutes, checked him temp again. This time is was 102.something. I just knew my thermometer was wrong so we went old school and took a rectal. 103.1. By this time I had already left a voicemail with the cardio nurse to ask if we needed to come in with a 101 fever, but now at 103.1 I knew we had to go in. I called the Pedi to make sure we needed to go to the ER and not the office and they confirmed. So then I called Cardio again to see if they wanted us to go to their ER (1.25 hours away) or go to our local ER (10 mins away). Well by the time the nurse came back on the phone I was already in front of my local ER so we went ahead and went in.. Big mistake, but I'll complain later. I tell the ladies at the registration desk that he has a high fever and is a cardiac patient and they quickly brought us back to a room in the Pedi ER. The nurses came in and took his vitals, temp was down to 102.8, everything else was normal, except his sats. But, I was busy explaining Evan's cardiac history to the other nurse and didn't realize the nurse taking his vitals was freaking out over his O2 sats.. LOL She had changed the probe 2x and was about to go get another monitor to make sure he was really satting at 87. I laughed, and apologized for not telling her that 80's is normal for him. Woops! We waited another 2 hours before the DR came in to see Evan. She ordered blood work, a urine sample, and nose swabs. My poor little guy was so upset to get his blood drawn. I just hate holding him down. It took about 2 hours to get the test results - everything was normal. They discharged us with instructions to keep an eye for new symptoms and rotate tylenol and motrin for fever control. Evan had a 102.4 fever when he woke up this morning, but after tylenol/motrin he is back down in the 99.somethings! He's acting completely normal, hopefully its just a minor virus that goes away soon.