It's 12:28 in the morning

Do you know where your child is?

Because mine is crawling through our kitchen.

What do you mean he doesn't look tired.

Giggling is surely a sign that he's nearly ready for bed.

Right?

changes, changes.

Not too big of a change, but my usual resilient self is a little more fragile than normal.

Surgery day, was scheduled for this next Tuesday (7/7). The hospital called today, and moved it up to Monday (7/6). So, now pre-op is Thursday instead of Monday.

So, we shuffled around, and now are coming to terms with going one day early. For Derek, the sooner the better. For me, each day brings me closer to hyperventilating. But I'll get there. I started making my lists today. What to bring, what to pack in each bag, what I need to pick up before we go. I'm a planner. I think because it makes me feel safe, knowing I'm prepared. Surgery brings much anxiety because I don't know what to expect. Yes, we've been there. I know the hospital. I know the shortcuts through the maze of hallways. I know what happened last time. But this time around, everything could be different. Dr. Devaney, our talented surgeon who will be stopping Evan's heart, cutting into his chest, and attempting to fix his mitral valve (Which, for the record is the only part of Evan I'm not completely in love with. There's many day I actually hate it with a passion.) , doesn't know what he'll be doing til he gets into it.

But God does, and I rest assured in that. For now though, I'll continue making my lists. Praying a lot. And trying not to breakdown. Now preparing for Monday's surgery. Not Tuesday. Tuesday, God willing, we'll be helping Evan recover from open heart surgery #2.

Well I will make lists, pray, not breakdown, and share some photos of my sun-loving, mischief finding, little corn eater.

the many faces of Evan

We've had a fun past few weeks - Evan's birthday and a trip up to my parents cottage were the highlights, but everyday is fun hanging with Evan. Below are some recent photos of our Evan. As he gets older he shows his personality more and more. Just tonight I was sharing my mac 'n cheese (I know, we're fancy at the Curtis household) dinner. After a few bites he reached over and grabbed his container of goldfish crackers, feeding me bites of his snack while I fed him bites of mine. Then clapping when I ate it. So sweet.

Enjoying his birthday banana pudding. He didn't eat any, but loved decorating the deck (and himself) with it.

Mid escape from an post bath diaper change.
Finally crawling! And getting into everything. He generally heads for the bathroom, wine rack, kitchen cabinets or gate at the stairs. (That is when he's not chasing me with the camera)

Loving his new car from Uncle Randy, Aunt Lisa and cousins Reece and Connor! After a rough end of the ride home from up north I couldn't do anything to stop the tears. Well, that was until I set him on his car - immediate big smiles. The car trumps even mom. Amazing.

Eating a leaf. At least he's organic.

Not sure what this face was. Maybe thinking about the leaf he just ate.

Mischevious while eating lunch...
...and then pretending he doesn't like his mac 'n cheese. Playing in the sink. It started with just toes, then somehow turned into this. It ended when he turned on the hot water. Maybe no more of this game.
Enjoying time with Gramma up north Evan loves Abby (my parents lab) perhaps too much. He has no fear, gladly crawling up to her and giving hugs, along with the occasional smack and hair pull (it may be a short friendship). Enjoying the new backyard

So sweet, and he's getting so big. A year has flown by, he's not a baby any more. Bittersweet as I remember when he looked like this...

Time flies when you're having fun...

strength.

Today marks 1 month until Evan's next surgery. The shock has (mostly) worn off, and we're living our (mostly) normal lives. I realized yesterday I hadn't cried in 4 days. That's good for me.

As I share our story with others, I'm surprised at a lot of people's reactions. That I'm so strong. That they don't know many who could go through this. That I'm such a great mom in the way I love Evan. I must put on a good front a lot of the time. I'm really not that strong. This is the life Evan was given, so this is the life we live. I cry. A lot. I struggle about why Evan. I don't sleep very much. I pray. A lot.

I feel so blessed to be Evan's mom. He truly is a gift to both Derek and I. I don't know that I'm stronger than the next person. I don't think you realize your strength until it's tested. And, goodness, this is certainly a test. Not just a test in being a mom, a test in the strength in my marriage, a test to the strength in maintaining a work life and maintain friendships when your mind is elsewhere.

I don't think I have any super strength, however I believe someone does. I handle this as well as any person who turns to the rock that I turn to. So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10) He is the strength to get through any hardship. Whether it's a sick child, a hurting marriage, losing a loved one, or just a crappy day. He is the strength to get us through. It's amazing what a simple deep breath, and quick prayer can do to a hurting heart.

He is strength, not me. I'm simply a mom, with a wonderful husband, and a little boy with a broken heart. But I serve a great king, whom through all things are possible.

happy birthday to my baby boy!

Evan turns 1 year old today. It's been an eventful first year to say the least. Today, we rejoice and celebrate him just being a fabulous little boy!June 3, 2008

1 month old

2 months old

3 months old

4 months old

5 months old 6 months old
7 months old

8 months old

9 months old

10 months old

11 months old

June 3, 2009

Oh, what a difference a year makes. :)

Happy Birthday Evan!

a few details

I had a chat with Evan's surgeon today. Dr. Devaney is the same surgeon who did Evan's first surgery. We really like him and his creditials are incredible - he does open heart 2-3 surgeries a week on children. Amazing.

There is a very good chance that he will put an artificial valve in Evan's heart. Evan's valve has shown in his first year of life that it has a high tendency to grow abnormally. His Shone's Complex causes him to be predisposed to this, and with the heightened abnormalities in only 1 year, we have every reason to believe that it will continue like this through his life. The thought is, yes, he can help it, but what's the point if he would need to redo it in 6 months or a year. If he does replace it, it should be okay until he outgrows it when he's 8-10 years old (estimates, of course, every case is different). He will be required to be on blood thinners, probably for the rest of his life, once a mechanical valve is put in. At least 2 more surgeries would be required as he grows, one between age 8-10 and another as a older teenager. Scary thoughts, but with Evan's heart, it seems regardless, this won't be our last surgery.

I asked him in relation to Evan's last surgery, how risky this surgery is and he said much less risky (yah!). Risk rates are only 2% - what an amazing statistic for UofM. Nationwide risk rates are closer to 20% in the first year. I have a number of questions emailed to Dr. Devaney, one of those being, long term success rates. I'm not clear how far out that 2% goes.

So, decisions will be made once he's in. Though, he said it's more likely that he will replace. He also will scrape away the supravalvular ring that's above his mitral valve.

Surgery will be Tuesday, July 7, we'll need to be there Monday to get him all set. We'll be staying with Evan off site Monday night (probably at a hotel), then Derek and I will check back into the Ronald McDonald house. Evan's stay should be shorter than his first stay, possibly as short as a week (wow!) but everything, of course, is pending how he does.

I have more details about the actual procedure, but my brain is fried today. Is there more you want to know? Let me know and I'll expand on it. I like learning all of the technical info, I feel that in the past year I've become an expert on the left side of the heart and how it all functions.

Much emotion surrounds our family this week, as Evan turns one year old on Wednesday. It can be disheartening to think that when Evan is 13 months old and 5 days, he will be having his 2nd open heart surgery. I praise God for my miracle, but my heart still breaks when I realize the life my little boy will have to lead. I doubt I'll ever understand why he has to go through this, why our family has to go through this, but Derek and I both leave our trust in the One who has control over what happens. God is so good, and we will continue to rely on Him and place our trust in him, where ever Evan's journey takes us.

Come to me, all you who are weary and burdened, and I will give you rest. Matthew 11:28

Praise God. Because I know we couldn't do this alone.

surgery day set.

Tuesday, July 7.

More details tonight from my conversation with our surgeon. I'm continually amazed at what this hospital can do. And does every week.

Short post. Yes. Post without at least one photo of Evan? Nearly impossible.