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

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! :)

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

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!