Thursday, June 13, 2013

DIY Stenciled Table Top

A few weeks ago while I was laying in Evan's teeny tiny hospital bed, squished to the side and unable to move, I was browsing Pinterest when I came across the prettiest DIY table. I knew I wanted to create my own for Elli's homeschool table so I pinned it and went about my browsing. After we were discharged, the first time, I went yard-saling and found the perfect table for super cheap! I loaded it up in the van and set out to get all of my supplies. Unfortunately, hospital admission #2 threw a wrench into my plans so I had to patiently wait to finish it. I am so thrilled to share that it is now complete and I could not be any more in love with this table! Seriously! I want to stencil every piece of furniture in my home now, lol.

My inspiration came from this post at Domestic Imperfection. See? Totally gorgeous, right?

Here is my $15 yard sale table. It's just your basic, every day dining room table.

First, I painted the legs of the table. I used primer & paint duo spray paint in white. It took 2 cans to cover the legs and no sanding was required. 

Next I(we) sanded down the table top. Sanding was the most time consuming (and messy) part of the project and was a major pain in the rear. Who has two thumbs and an awesome husband who will trade a date night out for a date night in sweating and getting tore up by mosquitos? This girl. Love you hunny! :)

Once the top was completely sanded down, I painted on the stencil. Originally I planned to repeat the stencil over the entire top, but then decided to just do a border because of how busy the design was. I purchased my stencil at Michael's with a 50% off coupon for $5 and used just your basic 79cent acrylic paint in white. I also purchased a stencil foam roller with a 50% off coupon for just a couple bucks. This stencil, made by Folk Art, was really great and had a guide for repeating the design, which made lining it up super easy. 

I borrowed stain and polyurethane from my dad and stained the top the next morning. (You could stain same day if you'd like, the acrylic paint dries very fast.) Since this was my first time staining anything, I called the expert, aka my Dad, and had him walk me through the process via FaceTime. I dipped a clean, folded up rag into the stain and wiped down the table, following the grain of the wood. Once it was covered, I took another clean rag and wiped in a circular motion across the entire table. That whole process took about 5 minutes! Don't forget the gloves! 

I decided I liked the color with one application and after it dried for several hours, I brushed on a few coats of polyurethane. The whole process was relatively simple, just very time consuming. It ended up taking 3 days to complete the table but I would do it over in a second! This is my completed table: 

So gorgeous! 

Wednesday, June 12, 2013

Home Sweet Home.. Part Deux.

As many of you know, Evan was readmitted into the hospital last Monday for bilateral pleural effusions, aka fluid in both sides of his chest. It was an emotionally exhausting 5 day stay that included an unwanted room in the PICU, angry nurses, tears of frustration, and finally a much happier little boy. We had such a horrible experience in the PICU that I am choosing to not relive it, therefore I will not be sharing the details of our experience. Lets just say heart kids belong in the cardiac icu for a reason. 

We were discharged home Friday afternoon and let me tell you, Evan has been non-stop since we walked out of the hospital! He is completely back to his normal self and has way more energy than I imagined he would! Today was his post-discharge follow up at the cardiology office and he ran around the whole waiting room for almost an hour before being called back. He made sure to stop and say hi to every single person waiting too. I can't believe how outgoing he is and just how happy he is in general. This kid has more strength than I could ever have, especially for just having open heart surgery 3 weeks ago! The cardiologist was super impressed with Evan today, his heart and lungs sounded perfect and his chest x-ray was completely clear, thank God! You know what the best part of the day was? Watching Evan run around for so long without taking a break and without turning blue. I am just.. just so amazed. I am so thrilled Evan is POST FONTAN and know that he can now live to his fullest potential. 

Saturday night we went to dinner with family for my husband's birthday. My father in law mentioned to our waitress that Evan had his third open heart surgery just 2 weeks ago and she was just blown away because he looked so good. Then she turned to me and told me she was amazed at how calm and at peace I was for just having gone through something so major with my child. I just smiled and said thank you, but I have been thinking so much about her words and keep coming to the same conclusion. How can I not be at peace when I have Jesus? How can I be afraid if I trust in my Father? How can I not have a positive attitude when my God is always faithful? I don't want Evan to ever be afraid of his future, or lack of a future. I want him to trust the Lord with all of his heart and I hope he will see that in both Scott and I.. We love our little man and don't ever want to set limitations for his future, unless we are talking about dating, then the answer is never. ;)

Please remember to keep all of our heart buddies going in for their Fontans this summer in your prayers. Going through major surgery with your preschooler is absolute madness and the anxiety building up to the date really sucks. 

OH! I almost forgot, Evan has been talking so much more in the last few weeks! He has now added "moo moo", "all done", "baby", "pizza", "coke", "eat pizza", "thank you", and "jake" to his vocabulary! Yay! :)

Thursday, May 30, 2013

Home Sweet Home


Can you believe it? All of the worry, anticipation, anxiety, fear, what ifs, and tears- gone. We did it, we crossed the finish line of the longest race of ours lives. I couldn't be any more proud of Evan! 

We were discharged home yesterday morning. Now we are focusing on continued healing and rest for Evan, as well as encouraging the little guy to eat/drink and helping him build his strength back up in his legs. It will still be a few weeks before Evan is feeling like himself again so please continue to pray that he recovers well at home. 

I know so many of my heart mama friends are "Fontanning" it this summer and I want to make sure I share our experience in detail for you. We all know it is rare for our kids to share the exact same experience, but hopefully you find encouragement and reassurance through Evan. 

Before Evan's Fontan, I researched and learned as much as I could about the Fontan. I asked post-Fontan moms for advice and read through as many Fontan blogs as I could. I was confident that I was more than prepared for what was to come. But the truth is, I wasn't prepared at all. 

The Fontan freaking sucks. 

Really. For myself as a parent, it was the worst of the 3 surgeries. Going through open heart surgery with a newborn and 5 month old seemed HORRIBLE at the time, but the Fontan takes the cake. Evan was miserable all day every day. He needed our attention 24/7 and it was exhausting. The first day, we stood at Evan's bedside trying to keep him calm for 8 hours. The next day, I sat in a chair with Evan in my lap for over 6 hours. I spent so many hours laying in bed with him that I was sure I would have bed sores by the time we were discharged. I spent every second worrying that Evan was in pain, scheming to trick him into eating or drinking, and begging God to help us get through it all. It was awful, but it didn't last forever and we are already falling back into a normal routine at home and I know these memories will eventually fade into just that- a memory. 

For those of you preparing for the Fontan, I have compiled a list of 10 things I didn't know before the Fontan. These are things that no amount of research could have prepared us for because they were unique to Evan. If you've already survived the Fontan, I am interested to hear what your "list" is! Alright, here we go: 

1. I had no idea the conduit they use for an extracardiac Fontan was SO big. I had trouble uploading the picture on my last post so here it is again. It's hard to believe something so big fits a 2 year old's heart. 

This is a 24mm conduit.
2. Evan's oxygen saturations before surgery were 80-81. After surgery, he was 90-91. Because of his fenestration (a small hole between his heart and the conduit, used to help with pressure) his sats quickly drop when he is upset. He would drop to 70 after just 30 seconds of screaming and turned super blue. But, as soon as he started to calm, his sats would rise back to normal very fast. I've never seen Evan desat and recover like that before, but now that he can physically show signs of a true desat, it will be easier to recognize and help him recover. 

3. For the Norwood and the Glenn, Evan only had one mediastinal chest tube. For the Fontan, his surgeon routinely places a mediastinal and two pig tail drains, one on each side of the chest, for pleural effusions. Not every surgeon does this, but I was surprised to learn that there are several who do this routinely just in case the patient develops PE and then they don't have to go in and place more chest tubes. 

The big tube in the center is the mediastinal. The small tube with the cotton ball over it is a pig tail. 
4. During the removal of Evan's chest tubes in the past, the PA just rips it out and applies gauze and tape over the opening and it heals. This time, the surgeon had a suture wrapped around the tube and when the tube was pulled, the PA synched the suture. No bleeding! 

5. Scooping a 30lb toddler like a newborn is NO JOKE. Ladies, start building up those biceps and shoulders. There were several times when I was holding Evan that I literally thought my bicep was about to rip in half. It's so hard not to pick up a toddler under the arms. Try it for a day now and figure out what works best for you before you are fumbling bed side with a fragile kid. 

6. I never knew so much fluid could come out of a little body! Evan ended up draining almost 45 ounces from his chest in just 7 days. He drained 15ounces in one day alone! On the day he drained over 400mls, I thought for sure we were going to be inpatient forever. The next day, he only drained 56mls. Don't get discouraged! 

7. My kid is an animal. He loves to eat and drink all day long. We have never had a problem with Evan gaining weight or eating enough. I did not expect his appetite not to return after surgery. It was a struggle all day long (and still is) to get him to eat anything. We tried all of his favorites and tried games/distractions, nothing worked. At one point he had to be given IV fluids and there was talk of a NG tube because we couldn't get him to eat more than 2 goldfish crackers. 

8. I didn't realize managing his pain would be as hard as it was. Right after surgery, Evan was still on morphine and coming off the the anesthesia and he was still thrashing around. We could not keep him still, even after max doses of some heavy pain medications. The only time I broke down was one night where we could tell he was in some serious pain and there was nothing anyone could do or give him to calm him down. I have never felt so helpless as a parent in my life. Prepare yourselves for that, mamas. 

9. Walking was impossible. Guys, if your child is anywhere near as stubborn as mine is, no amount of begging, pleading, bribes, or tricks will get your kid to walk with the chest tubes in. We tried every day to get Evan out of bed and walking and he just refused. It wasn't until all of the chest tubes were removed that he tried to walk but by then he had laid in bed for 8 days and his legs were too weak to support himself. He was so frustrated that he wasn't able to stand and walk. On day 6, our amazing nurse brought us a mat for the floor so Evan could get out of bed and play. I wish we would have had that on day 2! Also, wagon rides outside of his room were worth all the effort it took to get 3 chest tube boxes, a monitor, oxygen tank, and IV pole out with us. Evan was happiest rolling through the unit. 

This is the walking contraption they.. Chest tube drain boxes, oxygen tank, and the monitor hang on the sides. 

Two nurses and a tech to go for a wagon ride.. So worth it. 

10. It will be over before you know it. The whole time I kept thinking "Man, I have no idea how we survived being inpatient for 30 days for the Norwood". We were discharged on day 8 and now the fun begins.. 

Pretty soon you will be home snuggling in bed <3 

THANK YOU to all of our friends and family who contributed to Evan's treasure box. Everything came in handy and Evan loved playing with his new toys! Because there were so many things donated, we wanted to share the love and gave a bunch of stuff to the Child Life Specialist so that other little ones on the cardiac floor could have something new to play with too. There were so many little ones left alone all day with no family there to visit, we know they will enjoy something special. & thank you to our family and friends who came to visit Evan, he enjoyed sharing laughs with you all and it meant a lot to us! 

We are so blessed... <3 

Tuesday, May 21, 2013

We are post Fontan!!

We just met with the surgeon and everything went as planned. The surgery went very smooth and the DR is happy with the procedure. I just want to jump for joy and scream!! I cannot believe we are officially post-Fontan! Thank you Jesus for taking care of my little boy! Will update later after we see  Evan.

Fontan update #3

Evan is still on bypass. The surgeon is finishing up the conduit and then will be checking out the blood flow. Should be another hour before our next update.

Fontan update #2

Everything is going as planned. Evan is doing well. Hoping to start taking Evan off of bypass by the next update.

Fontan update #1

Just got our first update from the OR. Evan went back at 7:15. He had no trouble going under anesthesia and all of his lines are placed. The surgeon is thru to the sternum now, next update will come in about an hour.

Monday, May 20, 2013

Pre-Fontan heart cath, check.

Hi friends.

It's been a long day. Evan didn't sleep well last night and we were up by 5am. Surgery registration was quick and we were back in the cath pre-op area by 7:30. Evan was pleasant until it came time to place his IV. It took four of us to hold him down :( Once he got the IV, it was pretty much impossible to keep him calm. The anesthesiologist came by a short while later and gave him a little dose of versed. Evan was instantly as high as a kite. He was giggling at everything, swaying back and forth, and babbling away. We met with the cath DR and went over the plan. He said they should be done in an hour and a half to two hours. Scott and I went down to the RMH and ate breakfast while we waited for an update. After and hour and a half without a phone call, we called into the cath lab. The DR had just located a large collateral vessel and was going to measure it to see if he needed to coil it. 45 minutes go by and we received another update- the DR had a hard time accessing the collateral and had just made access. They estimated another 45 minutes before they were finished. The cath DR came out and said all went well! He coiled just the one collateral and Evan's pulmonary artery pressure was excellent. Evan's pulmonary arteries are slightly narrow but the surgeon plans on stretching them out a little tomorrow during surgery. It was another 30 minutes or so before we were allowed back to see Evan. He was MAD as fire. Thrashing around and crying.. After a cath, a patient needs to lie flat on their back and still to prevent bleeding. The nurses helped place Evan in my arms and I attempted to calm him down but it didn't help. He was super groggy still, coming off of anesthesia, and pinching and smacking me. It was rough! We transferred over into our room at the CVICU and Evan and I got comfortable in a chair. We've now been in this chair for almost 5 hours. He finally went to sleep about 45 minutes ago and I am enjoying all of the snuggles. :)

Our surgeon's physician assistant came by this afternoon and we went over the game plan for tomorrow. Evan is the first surgical case of the day and is scheduled for 7:15am.  The surgery tomorrow is the final stage of Evan's 3 stage repair. He is having an extracardiac fontan. The surgeon will connect a synthetic tube from his IVC to the pulmonary artery. I asked the PA if she could find us a tube similar to what will be placed in Evans heart and luckily enough, she had one in her desk drawer. It was huge! Much bigger than what I expected. I snapped a quick picture of Scott holding it for you to see..

Thank you guys for all of the support and prayers you have offered our family. We know it is only because of God that we had peace today and the strength to be strong for Evan. Please continue to pray for him as he heads into surgery tomorrow morning. I will be sure to update our blog as we get updates from the surgeon tomorrow.

Sunday, May 19, 2013

It's time.

4 months have come and gone. We are now less than 24 hours away from hospital admission time. Our bags are packed, Elli's grandma is on the way to pick her up, our dog has left with my parents, our room at the Ronald McDonald House have been confirmed, pre-admission registration is complete.. We are ready.

But not really.

I am not ready to hand my little boy over to have his chest cut open. Not ready to sit in a brightly colored waiting room for hours, waiting for my phone to ring with an update from the surgeon. I'm not ready to see the fear, confusion, and anger in my two year old's eyes when he wakes and realizes what has happened. I'm not ready to watch him suffer and know that I can't do anything to help him.

God, this sucks. This pain and fear.. I wouldn't dare wish it on another soul.

Oh, Jesus, hear my cries.. Please take care of my sweet boy.

We are checking into the RMH house this evening. We need to be at surgery registration at 7AM tomorrow morning. Evan cannot have anything to eat after midnight tonight and only clear fluids until 5AM. After his heart cath, while he is still sedated, he will get an echo of his heart. He will then be sent to the CVICU for the rest of the day/night. Evan is the first surgical case on Tuesday. We should have the "exact" time tomorrow. I will be giving brief updates via Facebook and will be updating my blog as well.

Friends, please pray for Evan, pray for Scott & I. We are worried, anxious, nervous, scared.. We need to be strong for Evan. Please specifically pray for God to guide his surgeon's hands. To be with everyone in the operating room Tuesday and everyone in the cath lab tomorrow. Pray that Evan has a quick recovery and that he doesn't have to battle extra fluid in his chest. Pray for no complications..

Thank you.

Friday, May 3, 2013


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! 

Saturday, April 13, 2013

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!

Sunday, April 7, 2013

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!

Thursday, March 7, 2013

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! 

Saturday, March 2, 2013


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)
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
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.

Wednesday, February 20, 2013

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.

Saturday, February 9, 2013

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

Wednesday, January 30, 2013

Evan's First Haircut

Evan loves ketchup. When I say love, I mean he is completely obsessed with it and will straight up eat it plain, sucked right off of his chubby little fingers. He has recently decided to spread the ketchup love to his hair. He likes to massage it in so good that it's impossible to get out without a full on bath. His new ketchup-do has recently brought to my attention that he was in desperate need of a little trim. Yeah, I know, he's two and most kids are way past due for their first haircut well before now, but Evan has had nothing but little wisps of hair for what seems like forever! But almost overnight, his hair has grown into this mess on the back of his head and he was starting to get a rat tail. And unless you are a member of NKOTB, or a tourist, rat tails are not acceptable.
I forgot to take a good "before" picture! 
If you know my family, you know we are total Disney freaks and love anything and everything related to Disneyworld. Of course, we had to schedule Evan's 1st haircut to be at the Harmony Barber Shop on Main Street in Magic Kingdom. It is the cutest old-timey barber shop and they really go all out to commemorate this special event in a mom's baby's life. Evan's appointment was at 4pm, and we had planned to let him nap beforehand so he was well rested. That totally didn't happen. It was a very low crowd day at MK today and Evan was so happy to "ride" (his newest word) everything that he decided he was not going to nap. Luckily, he was rather pleasant for most of the day. It was finally time for Evan to sit in the big chair and he was less than thrilled with his cape, but cooperative because of this really cool light-up Mickey toy we used to distract him. His stylist, Lori, was as sweet as can be and was so patient with Evan, even while he had his meltdown (which was quickly resolved with popcorn). She was careful to save as much of Evan's hair as she could and after she was finished, she folded it up and put it in a special little pouch for me to save. As part of the 1st Haircut experience, each little guest is given Mickey Ears that say "My 1st Haircut" on the back. Evan thought he was just the cat's meow with his new do and mickey ears. ;) Always such a ham, this kid!
Light-up Mickey's are the best distraction! 
Someone was happy with the end result :)
We really had such a great experience at the Harmony Barber Shop and will definitely be returning for future haircuts!
The "After" shot! Isn't he handsome?! 
We spent the rest of the day enjoying all of our favorite rides and visiting Evan's favorite friends. He is always so thrilled to see Mickey, Goofy, Donald, and Minnie. One of his favorite attractions is the Dreams Come True show at MK, so we made sure to take a little break from rides to catch it mid afternoon. I think this smile shows just how much he LOVES his Disney friends! :)

Sunday, January 27, 2013

NPC-QIC 2013 Winter Learning Session

This weekend I had the privilege of attending the NPC-QIC (National Pediatric Cardiology-Quality Improvement Collaborative) winter learning session conference. The Collaborative is currently focused on reducing the mortality of HLHS babies during the interstage period (the fragile time between the first and second palliative surgeries). There are over 40 pediatric heart centers across the country participating in this collaborative. Pretty amazing, right?

I've known about the Collaborative since Evan was a few weeks old. We participated in our center's Home Monitoring Program once we were discharged home from his first surgery, the Norwood. The HMP consisted of daily weigh-ins on a scale provided by our hospital, constant pulse-ox monitoring, and recording each feed (quantity and time). At the time, we didn't understand how beneficial this program was for Evan. We were really blessed during the interstage; Evan had no complications and didn't need any intervention. Others are not so lucky. The goal of these interstage home monitoring programs is to catch problems before they become too serious. Parents are able to monitor their babies closely at home. They can call their child's cardiologist/team when there is a problem- no weight gain, or weight loss, lower or higher oxygen saturations than normal, etc. These programs are saving HLHS babies' lives across the country.

I traveled to Cincinnati on Thursday and returned to my beloved sunshine state late Saturday night. The conference was held at Cincinnati Children's Hospital all day Friday and half of Saturday. It was very, very cold and I learned a valuable lesson- chapstick and lotion are your best friend.

The conference was more than I could have ever imagined it would be. I'm not sure what I expected, but it definitely wasn't this. Teams consisting of cardiologists, nurse practitioners, nurses, dieticians, therapists, social workers, and parents filled a large conference room and the excitement began. Over 100 people were in attendance, including 15 parents, representing centers from across the country. From the moment I walked in, I felt welcomed. I felt important. Doctors and team members expressed how thrilled they were to see so many parents in attendance and how crucial we are to the success of the collaborative.

Before the conference, I did not fully comprehend how amazing pediatric cardiologists and their team members are. Sure, I knew it took a special kind of person to work with babies and children with life-threatening heart defects, but until this weekend, I did not see it as more than just their "job". Please bare with me for a few minutes, I am still on an "emotional high" from the past two days and I am desperately trying not to jump up and down and shout for joy while I try my best to describe what I witnessed.. The members of the NPC-QIC have more passion for saving Hypoplastic Left Heart Syndrome babies than you can even begin to imagine. They are not satisfied with their current programs. They are not satisfied with the percentage of babies surviving from the first to second surgery, even though just 30 years ago these babies were being sent home to die. They are spending so much time and energy going above and beyond what is expected of them to change the future of children born like my son. They are changing the quality of life for these kids- kids and families they have yet to meet and have no tie to! I used to think Cardiologists were keeping their ideas to themselves, not wanting to share their "trade secrets" with anyone else. This weekend, I saw how open every team was to sharing their "secrets" with their colleagues. I watched cardiologists and team members from different centers take notes as another shared what is working for their center.

This weekend, I saw not only passion for caring for HLHS kids, but a fire to continue to make advancements and improvements for these children. I am so humbled by this experience, and feel forever indebted to these physicians and care team members who are helping our children continue to defy the odds. I cannot wait to share everything I have learned with my team's collaborative coordinator.

On a selfish note, I was so happy to spend some time with my favorite heart moms and fellow Sisters by Heart members! It's rare for so many of us to be in the same room at the same time since we all live in different states! I also got to meet several other heart parents and it was a joy to be around parents who have faced similar trials and tribulations as I have. I am looking forward to seeing everyone again, September cannot come soon enough!

SBH Family <3

Wednesday, January 16, 2013

The Black Cloud.

From the day we found out about Evan's heart, we knew he would need three open-heart surgeries to live. With the first two surgeries 20 months behind us, we knew it was a matter of time before we started talking about Evan's final planned surgery, the Fontan. It's been looming over us like a black cloud. This black cloud has become more present in our life as Evan has become more active and his oxygen saturations have been slowly getting lower than they were right after his second surgery. He has been extremely winded after a few minutes of physical activity.

Yesterday, Evan had a regular cardiology appointment. He had his echo first, and sat pretty still for the duration of it, watching his favorite DVD, Mickey Mouse! Next came his weight check, blood pressure checks, oxygen saturation, and EKG. Everything looked great. His O2 was about 80-81 in the office.

We patiently waited a few minutes before the DR came in.. Just kidding. I chased Evan around the entire office while we waited, this kid does not sit still anymore and wants to get into everything he can find! Luckily we were the only ones waiting! His DR came in and we chatted about how Evan was doing, how big he is, etc.

Evan's heart function looks great. His tricuspid valve and new aortic valve are not leaking anymore and we will be stopping one of his medications. Yay! Then we started talking about Evan's O2 saturations and how winded he is.. And she dropped the F bomb.

Evan will be having his Fontan this spring.

I was in a little bit of shock! Yes, I knew it was coming, but at the earliest I was anticipating Evan's Fontan to be next spring, after he was 3. I trust our cardiologist 100% and agree with her judgement wholeheartedly. Best to get this last surgery out of the way while his heart is healthy than to wait until he deteriorates and needs it.

I've had 24 hours to process this news and I am still filled with anxiety. Yes, I knew this was coming, but it doesn't make it any easier. I'm worried about my boy. The very last thing I want is for him to be in pain, and not understand what is going on. Evan's communication skills are delayed; I worry he won't be able to communicate his needs or feelings.. I worry something will go wrong, worry that he will suffer complications post-op, worry that our last hugs and kisses before surgery will be our last forever.

I'm anxious to get our last surgery over with. But I want to remind you, Evan will never be "fixed". These three surgeries will never make his heart whole, he will always live with just half of a functioning heart.

Several friends have asked what they can do to help. Pray. Right now we are asking for prayers for our sweet boy, for wisdom to choose the right surgeon, wisdom to choose the right center, for strength for Scott & I, and understanding for Elli. She is so worried for her little brother.

We also ask that you join us in praying for our fellow heart families that will be in our same position in just a few months. Austin, Jasiu, Xavier, Bodie, Jake.. I adore their mommy's and they need the support too!

Right now Evan is scheduled for a heart cath procedure April 11th. His Fontan will be sometime in May.

We appreciate everyone's thoughts, prayers, and encouragement! We definitely could not have survived this journey this far without you all. <3

And in other news, Evan is completely in love with his gifts from Santa! He loves to play outside and is getting more and more brave on his little climbers. He is such a joy to watch, always smiling and laughing! Since he started walking, he was been quickly mastering his goals at physical therapy, I am one proud Mama!