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. 

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!  

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! 

I complain (a lot) about still having to wake up 2-3 times a night with Evan. I mean, he's almost a year old, at this rate we will be putting the kid back to sleep several times a night til he's 18 ;) But really, deep down past my late night groans and baggy eyes, I treasure the late night cuddles. He is so warm, smells so sweet, snuggles so close to me. We just rock back and forth til he either passes out or sits up with a grin from ear to ear or screams bloody murder for his darn bottle, lol.

*Sigh* I just love this kid, in case you haven't noticed.. :)

Regrets

Its days like today that I really miss having a second income. Elli was home from school today (Teacher work day) and it would have been great to go see a movie, go to a theme park, etc. But, those are activities we decided to limit when I quit my job. It has been almost 7 months since I received my last pay check and we are still adjusting. I didn't realize how much money we were wasting on "wants". It's definitely been an eye opening experience, but of course I do not regret the decision we made! My only regret is not quitting earlier. I feel somewhat responsible for Evan being behind on his milestones. Had I been home every day, focused on his care, I don't think he would be this behind. Yes, I know I can't say that is 100% true, but it is always in the back of my mind. The important thing is that I AM home with him now, and I can devote as much time to him as he needs me to. And I absolutely love that! I am so grateful we are able to make every sacrifice we make. We are definitely blessed. 

We are quickly approaching several "firsts" for Evan and I can't even begin to explain how excited I am! And apparently Evan is preparing as well! He must have known Halloween candy and Thanksgiving turkey were around the corner because his top two teeth have finally made an appearance! LOL They are so wide, like a wittle wabbit ;).. Aw I hope Evan still loves me when he grows up and reads all this mush I write about his sweet little face! :) 

We have lots of Halloween/Fall activities coming up this week so I will be sure to upload some super cute pics of all the fun Evan and his big sissy will be having! Here's a sneak peak of one of Evan's costumes, and no, he is not wearing tights, his legs are just that chubby ;)

Proud :)

Today I am one proud Momma! Ok, well every day I am proud but today I am extra proud! I have been working so hard with Evan to catch up on his skills and today he rolled from back to belly, belly to back, and then back to belly again! I cried, of course, because this was the first time he rolled from belly to back!! And it looked so effortless! I also tried to lay him down for a nap and shortly after found him rolled like a burrito in his blanket, all the way on the other side of the crib, laughing his little butt off LOL

The little guy has also starting waving "bye bye" and clapping! He started waving a little yesterday and is now a complete pro.. You should have seen him clapping away to Yo Gabba Gabba this AM, it was completely adorable :)

This is one of the things I love so much about being a heart mom; every single little milestone is just amazing to me! I've never experienced a joy that compares to what I feel when Evan does something new.. <3 Love that little guy!  

All about the boys

I failed to mention in my last update that we have a new family member! His name is Bruno, an 8month old Basset Hound! Bruno is the sweetest dog, a little hyper when you get him excited, but otherwise very calm! He is definitely not the brightest crayon in the box, but we love him all the same!



This past wednesday my mom finally returned from Hawaii! She had been gone for 6 months helping my sister with her new baby, my sweet nephew Clyde, who (lucky for me!) came with my mom to FL! He is so precious and has the prettiest blue eyes.. :) Evan was super excited to meet his younger cousin, little did he know his cousin was bigger than him lol He is learning to "fight" back slowly, they are so so cute together!

On Thursday, Evan finally had his first cooperative physical therapy appointment! LOL This time we planned it out; instead of our therapist taking Evan from the get-go, I sat on the mat with him first and then the therapist joined in. It worked out very well, thank God (dealing with a screaming Evan for 30 minutes is definitely not fun) and Evan showed his therapist all of his major improvements! He is still only rolling from back to belly, and only to the left, but with just the slightest bit of help he rolled to the right! He is also pushing up his entire upper body off the ground and reaching for toys while holding himself up.. Yay Evan! His upper body strength has improved tremendously in just the past two months.

Take a look at this picture of Evan with his Daddy, how sweet are they?! Evan is constantly saying "dada" and absolutely adores Scott.. He always looks at his Daddy and whispers 'Dada" then smiles so big, ugh they just melt my heart! :o)

Well, that's it for now folks! Before I sign off, I am just going to have to give myself a quick pat on the back for updating like I said I would, LOL! You will be hearing from me soon!

Shame on me.

It has been SIX months since I last updated our blog.. SHAME ON ME! This time I am really going to stay on top of this thing; I have no reason not to, and so many reasons to keep it up. Evan's story (so far) is one that I searched and searched for when I was pregnant with him. There are so many blogs from parents of children with HLHS and every single time I came across a child not only living with HLHS, but thriving with the disease, it gave me so much HOPE for our little guy. I feel awful that I have one of these stories and have not been sharing! Bear with me while I catch everyone up! 

May: May 3 was my last day of work! It was a very hard decision, but Scott and I thought it would be best for Evan if I stayed home with him full time. I loved my job, and the company I worked for (I am so grateful for the opportunities they gave me) but it really is what was best for Evan. On May 4 we packed our bags and headed to All Children's for Evan's pre-Glenn work up. He had blood work drawn and a physical done. Scott & I checked into the Ronald McDonald house and spent some quality time with Evan. May 5 was the big day, Evan had his Glenn (2nd stage of his surgeries). The surgery went very well, with the exception of some excessive bleeding. We saw Evan in his room once he was settled in and he was only on O2, no breathing tube! He was responsive later that day and opened his eyes. He ended up staying in the hospital for just 7 days after his Glenn, we hit a few bumps in the road due to O2 saturations dropping, but other than that it was a very uneventful stay and all went so well! Evan also had his feeding tube removed! The Glenn was so much easier than the Norwood.. 

We spent a lot of the summer indoors, keeping cool and recovering from surgery! Evan seemed to have a lot more energy after the Glenn. Scott & I finally got married on July 23 :) It was beautiful and I am so grateful our kids could be a part of the ceremony. 

Evan is 10 months old now and happy & healthy!! He weighs 23 pounds and is 28" long.. He is a chubby guy! He loves to eat, play, sleep, and snuggle. He goes to physical therapy twice a week but has been catching up very quickly. He is sitting on his own, playing games, giving high fives, saying mama and dada, walking in his walker, rolling over.. the list goes on and on! I can't believe we will be celebrating his First Birthday in just two months.. 

No one knows about his heart unless I mention it to them. He just looks and acts like a normal healthy baby. We are so, so proud of our little miracle boy <3 

Here are some pictures of everything you have missed! 

Knowledge is not power.

You know it's been too long since your last update when you have to go back and read your last post to see where you left off! I apologize for my lack of attentiveness to my blog.. Just been having too much fun w/ my family ;)

We've had many changes in the past few months. Evan passed his swallow study on March 3!! God healed his vocal cord, I knew it, just had to wait and prove it to everyone with this test! He has since been eating like a champ! This little boy loves loves loves to eat. Evan started off on 26 calorie formula, got moved down to 24 calorie formula, and is now on regular ol' calorie formula! He was gaining too much weight! Evan takes between 5-6oz at a time now, he's such a champ. :o) We've started on solids as well. He was 15lbs 11oz today.

I can't even begin to describe what an amazing little boy Evan is. He loves to smile! He loves to cuddle with mom & dad. Just seeing his chubby cheeked face warms my heart.. I enjoy every single second I spend with him! Scott & I just completely love & adore him!

When I last updated, we thought Evan's surgery was going to be moved up since his O2 sats were lower than normal, but his sats went back to averaging in the 80's and the next Cardio appt. was normal. This past Tuesday Evan had a Cardio appt. and his sats were low. His cardiologist ordered an echo and said everything looked fine. She then called Thursday and scheduled his pre-Glenn surgery heart cath for the following Thursday, 4/14..

Crap. I hate this.. It's not like the upcoming surgery was unexpected; it's the exact opposite. I have known from day one that Evan would need 3 surgeries to survive. But knowing does not make this easier to handle. Knowledge is not power in my situation. I assumed the first surgery would be the hardest. I assumed the next two would be easier because I "know" what to expect. How ignorant of me to assume this would ever get easier! I DO NOT WANT TO PUT MY BABY THRU THIS! It's not fair. IT IS NOT FAIR! I want to take him and run. I want to hold Evan and never let him go. I hate this disease..

Keep our family in your prayers this week. Evan's cath is scheduled for 10AM on Thursday. I will keep everyone updated.

3 months old

Our little warrior is 3 months old today! He's getting so big, he weighs over 14 pounds :o) Today Evan had a routine cardiology appointment. He got weighed, blood pressure checked in each arm and leg, had an EKG done, and an echo done. His cardiologist said everything looks to be functioning great, for now.. He is gaining so much weight and getting so big quick, meaning he is about to outgrow his shunt. His O2 sats were in the high 70's today, and they are usually in the 80's. She said this is a sign of the second surgery getting closer. She's very happy with Evan's progress, but would like to see us back in 2 weeks instead of 3. We will do another echo and EKG, and most likely schedule his pre-surgery heart cath and pre-surgery appt with Dr. Chai. Looks like we might be leaning closer to having the second surgery at the end of March/beginning of April...

I've known all along that once we were home from the Norwood surgery it would only be temporary. I knew we would have only 3-5 months at home before having to return for a second surgery. But I do not like that it's quickly becoming a reality. When we are home, Evan's a normal baby. He acts like a normal baby, looks like one, etc. He smiles, and laughs, and yells.. I don't want to sign a consent form to have his chest opened again. I don't want to stop at the doors to the surgical unit and say my "See you soon's".. But I know he will be in God's hands and He will take care of my little man..

I would really like to clear the air for everyone who may not understand our situation completely.. Evan is NOT a normal baby. Getting even a common cold or tummy virus right now would put him in the hospital, overnight, potentially for days. We, along with every other parent of a heart baby waiting for their second surgery, have been told to keep him healthy, away from school aged kids, sick people, people who have been in contact with sick people, etc. etc. I HATE BEING HOME BOUND! But I will do it/am doing it to keep my little guy healthy. He has not even had the slightest cough yet, and this is all thanks to Scott and I being so protective over him, and not taking him to crowded places, or letting people hold him outside our home. I can't wait until Evan has recovered from his Glenn so we can take him to my parent's house, and Scott's parent's house, and trips outside the house.. but for right now, he's staying home and away from germs. I'm sorry if you are offended that you have not had the opportunity to meet our little miracle, but I really hope  you try to understand why, and have the patience to wait until he is stable enough to meet you..

Thursday Evan will go have his second swallow study. Please please please pray that he passes. I want his feeding tube out forever! He's such a talker, I know his little vocal cord has been healed.. I'll make sure I update Thursday <3

I know, I'm a slacker.

It's been two weeks since I've updated, wow! Time is flying..

Evan is doing wonderful! He is such a good baby and loves to be cuddled! We are still adjusting to having him home. He had a cardiology appointment last week and is still doing great. Next appointment is Thursday. Evan has gained almost a whole kilo since we've been home... LOL He is such a big boy! By the end of the week he will be 11 pounds (5 kilos). That's a gain of over 2 pounds.. in a little over two weeks.. I feel like that's excessive, but I didn't track weight gain for Elli like who do with Evan so I have no idea. We will see what they say Thursday, maybe they will stop the extra calories.

I still worry about Evan all day long. Always checking to make sure his color looks the same, making sure he is breathing normally, etc.. I trust God is with him so my faith definitely gives me some peace, but it's so hard not knowing if your baby will make it to the next surgery..

I promise I will try to update more often, this is the first time I've had a couple of minutes without the baby in my arms..! Keep praying for Evan <3