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!