Overwhelmed

17 days... 

Tonight I am overwhelmed by the generosity of our friends and family. You all have responded to our requests for prayers, goodies for Evan's hospital stay, and blood donations! It is so awesome to see how much you all love our little guy!

Everything has been set up with the local blood bank for direct donations for Evan's surgery. If you are still interested in being a direct donor, and have O+ blood, please let me know and I will add you to the donor list! If you aren't O+ and still want to donate, Evan can receive credits for your donation! You can donate now or after his surgery. Next time you go to donate, just let them know you want to credit Evan Sawyer.

Check out Evan's hospital treasure box! It is overflowing with goodies to keep Evan occupied during his hospital stay! He is so excited to get into this box! He also has two full bags of his favorite snacks to munch on! Seriously, friends, thank you!

This week I finally got around to making Evan's hospital gowns. The hospital issued gowns are usually too big(and purple) so I figured I would take a shot at making my own. I couldn't find a pattern for what I was looking for so I grabbed some chalk and just winged it. I am SO happy with the way they came out! My only regret is not making a pattern before I finished them! LOL They are kimono style and open up in the front. I also added snaps to the shoulders for easy access to IVs and the Central line (the big IV in the chest that goes to a large vein near the heart). Each gown took about an hour to complete (including cutting time) and cost about $6-8. 

My model refused to stand up ;) 

Seriously, friends, we are just so grateful for your generosity.  We love you all so much! Big HUGS to all of you! 

Deja Vu

I wanna give him the world

I wanna hold his hand

I wanna be his mom for as long as I can

And I wanna live every moment

Until that day comes

I wanna show him

What is means to be loved.. 

I adore this kid. He is so full of life and love, always happy. He brings so much joy to my life! We recently had the pleasure of meeting a fellow central FL heart mama(to-be). I can't begin to explain what a blessing it is to be able to share my experience with someone who is just starting their heart journey. It was like deja vu- wasn't it just yesterday we were told our unborn babe only had half a heart & I was asking all the same questions? Sigh. Evan was his usual crazy self; he threw food on the floor, yelled, wanted to get down and run away, etc. You know, typical toddler behavior. ;) I think he was showing our new friend just how feisty HLHS kiddos are, ha! We are so happy to have a new friend and wish her the best in the months to come!

Special Request

Six weeks.

We are just 42 days away from Evan's heart cath and surgery. Barf.

Evan had his quarterly cardiology check up this past week. He is almost 30 pounds and still 35-36" tall. O2 sats were still low 80s and his blood pressures were good. He didn't get a complete echo because he will be having an extensive echo following his heart cath while he is still under sedation. Heart function still looks great, though, and no leaky valves! Evan was a total angel during his echo, thanks to Mickey Mouse and a watermelon ring pop. However, he threw his lollipop on the floor while we briefly waited for his DR to come in. Of course, I tossed it, and offered him a new one. Unfortunately, it was blue raspberry flavored and Evan was not ok with the change. He threw his first major meltdown in public and refused to calm down so that I could talk to his Dr. Don't let Evan's happy-go-lucky demeanor fool you, he inherited quite the Colombian temper and is not afraid to use it! ;) 

Ok, now to my special request.. Are you a local family member/friend? Is your blood type O+? Are you willing and able to donate blood? If so, please email me! We are looking for a couple of people to directly donate blood for Evan to use during/after his surgery. I know, it's kind of weird to be asking for your blood.. All I can think of is "I vant to suck your blooood", lol. But seriously, Evan always needs a few transfusions during and post surgery & it would be just awesome if he could use a friend's blood. Thanks!

Riding Out the Storm

Evan is officially on the books for his Fontan surgery. Sigh. 

First, I just want to say that I adore Evan's cardiologist and all of her staff. She has been super patient and accommodating to my 4,356 emails and requests related to this coming surgery (yes, I am one of those moms). They were able to reschedule Evan's heart cath so he could have his cath one day and his surgery the next, thus avoiding two separate trips to ACH. 

Evan's heart cath will now be May 20 and his Fontan will be May 21 (as long as all goes to plan and there are no emergency cases that take precedence). At first I thought "Wow, May is so far away" and then I realized it's already March and this is only two short months away.. Sad face. I'm ready to get this final staged surgery behind us, but not looking forward to handing over my baby for a third time. It's just not fair. 

I've also been asked numerous times lately why Evan is having a third surgery and what will be done to his heart.. It's complicated and hard to understand if you're not in the medical field (or a heart mom), but the following videos are quick and accurate descriptions of what Evan's heart defect looks like, and what the surgeon does during the first, second, and third surgery to make a HLHS heart support the entire body with one pumping chamber. Every time I watch these videos, I get chills. We are so blessed to live in a time where the technology and skill is readily available to save Evan. 

Hypoplastic Left Heart Syndrome 

Stage 1 Surgery, aka the Norwood. (This is the surgery Evan had at 8 days old) 

Stage 2 Surgery, aka the Glenn. (This is the surgery Evan had at 5 months old)

Stage 3, aka the Fontan. (This is the surgery Evan will be having in May)

And there you have it. Another question I am frequently asked "This is the last surgery, right?". Well, yes and no. This is the last planned surgery. Evan's heart is working double time to function with just one side, and there are repercussions to that. No one can say for sure if he will need another surgery in the future, only God's will and time will tell what Evan's future holds. 

We are trying to be strong for Evan, but I am still finding myself weak with fear. I know we serve an awesome God, and he has taken such great care of my little guy thus far, I can only have faith and believe He will continue to do the same. Right after I got the confirmation for Evan's surgery, my mom sent me an email with a youtube link to a song called "Riding Out the Storm". It literally hit my inbox less than 60 seconds later. And it was so powerful. Oh, God's timing is so perfect. "Just hold on to Jesus, and ride out your storm" Amen. 

I will continue to update as we get closer to surgery time. Please continue to pray for my little guy..

One last thing, I just want to say how overwhelmed and appreciative I am to everyone who is eager to help fill Evan's treasure box (see previous post) to help ease this hospital stay. I'm sure everything will come in handy! THANK YOU! 

Preparations

Well friends, we are just a little over a month away from Evan's scheduled pre-surgical heart cath. There may be a change in date, I am waiting to hear back from Evan's cardiologist about possibly having his cath a day or two before his actual surgery in order to avoid 2 separate hospital admissions, but as of now, we are scheduled for April 11. Regardless, we are starting to make our preparations for Evan and our family.

Several of you have asked what you can do to help or asked if there is anything we need. Currently, we really need your prayers- specifically that Evan continues to thrive, that Evan stays healthy and well before surgery, for peace for our family and strength, & for wisdom to make the right decisions regarding Evan's care.

I have also started a list of things we will need in the hospital for Evan, as well as things I think he would enjoy having. Right now, the plan is to make him a "treasure box" full of goodies he can have while he is recovering. Please, do not feel obligated AT ALL to contribute, I am only posting this as a guide to help those who have expressed a desire to bless Evan with special things he can have while recovering. Here is what I have so far:

Non-slip socks or slippers (shoe sz 6)
Bubbles
Small, hard page books
Coloring books & crayons
Small, soft balls
Small nerf gun
Mickey Mouse Clubhouse DVD
Books that play music (the ones with buttons you push, ya know?)
Small action figures
Cars
Mickey Mouse figurines & friends (Donald, Goofy, Minnie, etc.)
Mickey Mouse Clubhouse & friends stuffed animals (Do you see a trend, the kid is obsessed w/ Mickey & his gang!)
Individually packaged snacks (Evan's favorites include m&ms, animal crackers, goldfish)

Phew, I know, it's a long list. I'm trying my best to make sure we are prepared to entertain an on-the-go 2 year old for 7-10+ days in a hospital room with as few meltdowns as possible. I have definitely entered "freak-out" mode and we are just so ready to get this behind us. I can't believe how fast the days are passing. I just want to fast forward through the next 2 months! Sigh. Anyways, as always, we love you all and are so grateful for the continued love and support from our dear family and friends. If you have any questions about what Evan can or cannot have, please feel free to ask! We will continue to update as we get closer to surgery time.

Give Kids the World (or just a few hours of your time)

When I was a kid, we lived smack dab in the middle of the Disneyworld tourist area of Kissimmee. I remember seeing a sign next to our Walmart all the time about a place named Give Kids The World. At the time, I did not know anything about it other than it was a place for sick kids. Fast forward to now.. My friend and fellow Sisters by Heart member, Jenny, traveled with her family to the Give Kids the World Village a few weeks ago for her daughter's Make a Wish trip. As I was reading one of Jenny's blog posts about their recent trip to the village, I decided to look into the village and snoop around. It's the same place we used to pass by when I was a kid! Small world. Seeing all of the pictures of her sweet little girl having the time of her life was so inspiring! I couldn't believe this place has been in my backyard this whole time and I didn't know!

I eagerly signed up to volunteer online. Once my background check cleared, I completed my orientation and signed up for my first shift. I wasn't sure what to expect, but I woke before dawn this AM and drove over (just under 40 minute commute) to start my first shift.

It was incredible. And amazing. And heart warming.

This morning I was signed up to help with the breakfast service at the Gingerbread House. We served over 400 people, most of whom were on vacation for their Make a Wish trip. Everyone was so thrilled to be there, guests and volunteers alike. One of the volunteers serving with me is a grandma to a former GKTW guest. Her family was back to help serve others, like they were served years ago when her granddaughter had cancer. Not even 20 minutes after the doors opened, the entire room started singing for a little boy's birthday. The excitement he had just lit up the whole room. I seriously have never seen a child that excited, it brought tears to my eyes (and Grandma's too) and we both tried our best to conceal our sniffles. Another couple that volunteered with me was on vacation from NY. They had only been in town for a few days and had already volunteered 3 days! Something about this place just draws you back, I didn't want to leave and cannot wait to return next week!

If you are interested in volunteering, the sign-up process is simple and you can volunteer for whatever day/time works best for you. Even once a month can make a difference! There is so much to do, so much help needed.. This is an awesome way to get involved and give back!

For more information on volunteering at Give Kids the World, click here.

CHD Week

February 7-14 is Congenital Heart Defect Awareness Week. Did you know that?

Before Evan, I had never heard of CHDs. I knew about heart murmurs, but that was it. I had never heard the terms "hypoplastic", "atresia", and "stenosis". Considering nearly 1.8 families are affected by CHDs, I was left wondering why myself and nearly all of my friends and family had been so uninformed about heart defects.

CHD research is severely underfunded. You don't see or hear about babies dying from heart defects. There are no commercials of sad, intubated, freshly scarred heart babies with Sarah Mclachlan playing in the background. No major celebrities asking for donations to help give these heart kids a better quality of life. Instead, raising awareness has been left up to a few hospitals, a handful of non-profit organizations, and the heart community.

I've been involved in the heart community for 2.5 years now. Every February, my facebook and inbox is flooded with everything CHD related. I.Love.It. I love seeing my friends support my mission to inform the uninformed. I love seeing my heart moms rally together and raise awareness and support from local and state governments. I love seeing the fire lit in all of us as we strive to make the general public aware of our children, our little miracles.

But this year, this year I am struggling. This year, raising awareness is brining me back to a reality that I try my hardest to avoid. My boy, my sweet, full of life little boy, is critically ill. It seriously makes my stomach turn to say that. My boy is sick. When I look at Evan, I want to see the happy, healthy, destructive little boy that he is. I don't want to see a fragile kid who is scheduled to have his THIRD open heart surgery in just 3 short months. His third surgery to repair his broken heart.. To reconstruct his most vital organ to compensate for the missing pieces.. I just hate it. I hate Congenital Heart Defects.

And you know what else I hate? I hate comparing my sick kid to someone else's sick kid. There is a CHD "fact" circulating that says something along the lines of CHDs killing more infants and children than all childhood cancers combined. And people are proud to post this. I'm sorry if this offends you, but on what planet do you feel it is OK to "rub it in" that heart defects are more deadly than cancer?! Do you realize that while this may be true, it is just as awful?? I have a friend who's son is currently battling a very serious form of cancer, with one option to save him that is not working, and I can assure you no one cares which disease is more deadly, or who has more funding. Cancer may have more awareness, more funding, but they are still dying. They are still left untreated with no options. At least for CHDers, the majority have options.. I wouldn't dare pout that they have "more" than "us". Just think about it.

I hope this year you will grant me grace; please understand that this year, I just can't give it my all. My hope instead is my friends and family will take it upon themselves to think about Evan, think about the little boys and girls like him, and share with everyone you know just how prominent CHDs are. <3