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.