Monday, November 28, 2011

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 ;)

Wednesday, November 23, 2011

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. 

Friday, November 18, 2011

Thankful, Blessed, Grateful

Time really needs to slow down. Evan's birthday party is two weeks away and I am just now mailing out invitations! But really, that's not unusual, I am such a procrastinator. I can't help it! I think deep down I get some kind of rush trying to get everything ready at the last minute. How ridiculous does that sound?! 

We've decided to throw Evan a Yo Gabba Gabba bash for his first birthday party. Why? Because this kid would eat dirt and ask for more if you offered it while he was watching his show. Seriously. I don't know what it is about the show, it's incredibly weird, but it completely mesmerizes him. This morning I showed him his party invitations (Yo Gabba Gabba characters with Evan's picture cropped into the scene) and he went nuts! Laughing and wiggling like it was the coolest thing he had seen, lol. 

So, what else is new? Evan's trying really hard to figure out this whole crawling thing. He is getting up on all fours, rocking, and just started moving his hands. He is still plopping down, but he's trying! I think his upper body strength is still weak, don't get me wrong, he has strengthened so much, but he's still working on it. I'm sure in a month or so I will be updating that he is getting into everything and I have had to move objects out of his reach. ;) Oh, and Evan has discovered the "wonderful" noise his teeth make when you grind them together! It gives me the chills every.single.time. 

We are also going to be switching Evan's pediatrician. And I hate to switch, I hate that this new DR will only know of Evan's journey so far by what is written in his chart, but I am fed up with his current Ped's office. Wednesday Scott took Evan in for his monthly Synagis shot, and guess what? Really, you're going to laugh. They lost it! They lost his shot. Our insurance company has their own pharmacy and every month they mail it to his Ped's office, and then they call us and we come in. Simple, right?! Guess again. Luckily for them, Scott was there and not Evan's very hot tempered Momma :) They ended up getting it figured out (Evan got a free shot this month, and his is still MIA) but this incident was the "straw that broke the camel's back". 

Thanksgiving is less than a week away, and boy are we a thankful family this year! I wouldn't even know where to start with my list.. Evan's quick recoveries, overall health, Elli's behavior and progress in school, my parents, Scott's family, Scott's job, my new job as a stay at home momma.. See? Long list, and that doesn't even begin to cover it all! Let's just say that we are BLESSED an so incredibly GRATEFUL! 

Oh! I have also started a local Heart Mom support group, with the help of another Heart Mom. So if you are local to Polk County and want to join, let me know! :) 

Hope everyone has a wonderful Thanksgiving holiday!  

Tuesday, November 8, 2011

Boy have we been busy!

I love Fall! The weather is finally cooling down (well, if you can call 80 cool?!) and there are fall festivals every weekend. We took the kids to several events and had such a great time! Elli had a blast teaching her little brother how to trick or treat ;) We couldn't walk more than 5 feet without someone stopping us to tell us just HOW CUTE Evan was in his little Lion costume, lol He was definitely a hit!

Evan has also started getting up on all fours and rocking back and forth! He isn't crawling, but he will flop down on his belly and then get back up and repeat.. Whatever works, right?! Evan is just a little laugh box too. He has figured out if he moves his head around like a Bobblehead toy, everyone will laugh, so he is doing it 24/7! Lucky for you, I got it on video :)

Scott and I are leaving tomorrow for Boston! We are finally going on our honeymoon. As much as I am looking forward to it, I am also feeling very anxious about leaving Evan for so long. He has never been away from both of us. My mom is going to be staying with the kids while we are gone, I know they are in great hands, but I am still going to miss them like crazy!