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Thursday, December 17, 2009

an early Christmas present

Evan had his cardiologist check up today, they did all of the usual tests to find that everything looks exceptional. :) Dr. Loker was very pleased, and we don't have to return for 6months!! I also had my 12 week checkup yesterday, and heard baby #2's heartbeat - 166, nice and strong.

Life is wonderful this holiday season, we are so thankful.


We're not sure that we're thankful that apparently toddler habits are genetic. He's picked up the below from me.*

* as a toddler, I've tried to refrain in more recent years

We hope you're enjoying your family and the season this Christmas, we certainly are!

Tuesday, December 1, 2009

long overdue...

So, my promise of pictures in a week turned into...well, months. Life has been busy, Evan is doing great. He's busy running, yelling, dancing, reading books, vrooming cars and asking 'what dat' for most of his awake hours. Consequently, my day is spent chasing Evan, requesting a 'please' rather than screams, hosting dance parties, reading books, stepping on cars, and answering with whatever Evan happens to be pointing at.

Enjoy some photos of our last couple of months!


Ready to head home...
On our way...





1st Haircut.
Before.

During.

After.

Playing with Carter.


Surveying dinner options.



Fascinated by the squirrel.

Derek started a tradition that when I travel for work, he brings home cookies.
This boy loves cookies!




Cutest little dragon I know.



Evan's friend, Jack. Lots of Halloween kisses between them!




Playing with cousins Anna and Rachel


I sometimes fondly remember when meals consisted of just a bottle.
We're now busy getting into the Christmas season. Painted all weekend, carpet getting installed tomorrow, then a Christmas tree finally this weekend.
Busy loving life, and loving this little miracle.

Monday, August 24, 2009

bliss.

Our days lately...
Wake up, get in a few minutes of snuggle time. Breakfast. Attempt to get work done while intercepting Evan's attempts of playing with toilet water, throwing toys in the garbage can, climbing the steps, locking himself in random rooms, climbing into cabinets, destroying tissue boxes etc. Lunch. Nap. More work interrupted by playing chase, swinging in the backyard, perfecting Evan's skill of finding his nose, more attempts of saving Evan from random destructive and/or unsanitary behaviors. Making dinner with Evan attached to a leg, or on my hip. Play time with Evan and daddy. Bedtime. Then repeat.

Pure joy. I am loving every minute because our Evan is home with us. No more pokes, beeping, blood draws, vital checks, tubes and IVs, other kids crying while trying to sleep. Our usual everyday stresses have never been so lovely. I told Derek this weekend, I'm just happy all of the time now. A huge weight has been lifted from us, and we are so thankful, and just so happy.

You would never know what Evan went through only a week ago. He's completely back to his normal self, it took him a few days to get used to his incision - he would whimper when his shirt was off. It was heartbreaking wondering why - not sure if it was pain, a memory or just scary for him to look at. But as of yesterday, he's okay with it. He's also off of all of his pain meds, he came home on Motrin and Tylenol, with harder stuff available but never needed. We go visit his local cardiologist, Dr. Loker, this Thursday, and we'll see how everything looks. He had a small clot that formed from his central line in his right atrium - he's been on aspirin for it, so it hopefully is beginning to dissolve.

We are so appreciative of everyone's support and prayers. Evan continues to defy the odds in his recoveries from surgeries. We know that this was not the final chapter of Evan's Shone's Complex. It will be a lifelong ordeal that we will continue to keep a close eye on so he gets the attention it needs. We hope that we don't have another surgery for 3-5 years, as his surgeon predicts. Next year, we're dreaming of a real vacation.

We do know that Evan continues to not only be looked after by some of the best pediatric cardiologists, but by the Great Physician. It is through Him that we draw our comfort, and release our anxiety over Evan. He has carried us through these stressful last 14 months, and we continue to trust in Him and His plans. As I've said before, all of these surgeries are in God's plan. These are not imperfections of Evan's heart-they are a piece of God's perfect plan for Evan's life.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

This journey is not only Evan's journey, but continues to have a profound affect on both Derek and myself. In our faith. In our marriage. In so many aspects of our lives.

We'll continue to post updates on here of Evan's day to day, and continue to pray continually for his good health, and strength as he grows. Unfortunately, my camera is giving me fits and won't upload photos to my computer, so don't have any new pictures to post. But look back later this week, and I'll have a post loaded with new pictures (even a video if I can make it work!)

Tuesday, August 18, 2009

Who's ready to go home?

I am!
Yep, that's right - Evan's discharged! The bags are packed, car is loaded, we're just waiting for Evan to wake from his nap and we're out the door! In case you're counting (because we are), that's 4 DAYS after his surgery. Crazy fast recovery for this little boy. We're so thankful for his good health. I'll post more info later, with some pictures of the rest of his stay here,but for now just know that we're outta here!

Monday, August 17, 2009

Monday morning update (with pics!)

Evan continues to do well. Last night I stayed his room with him. A bit of excitement early on...around midnight, he threw up some really curdled milk, then while flailing afterwards, pulled his 2nd IV of the day out. It bled a lot, and at first glance, I thought it was his chest tube... a little chaos followed and we realized it was just the IV. About scared me to death though (and a couple of nurses too I think...) So, he had his 2nd linen change, then a 3rd when at the end he peed over everything, and cashed out for the night. He did great, no oxygen needed all night long!

This morning he had his chest tube removed, along with his 'just in case' pacemaker wires. He just switched to oral pain meds (off of the morphine, onto Oxycodone). They also cut out one of his IV diuretics, and is stretching his Lasix out further. Tomorrow he should switch to oral Lasix, which means no more tubes! That also means, a discharge of Wednesday if it all continues to go well!!! :) In case you're counting, that's only 5 DAYS after surgery! WOW!!

Derek and I took him for a stroll a little bit ago, and he's now resting with a bottle and Baby Einstein, He's very relaxed today and much more with it. Ate some Cheerios, gave us some claps, high fives and even a 'so big'. We're so thankful for his continued good health, and fast healing while here. Please continue praying for continued healing so we can get out little boy home!!

Sunday, August 16, 2009

Sunday morning update

The drs rounded this morning, and all looks well! He's having his morphine dropped down once his LA line comes out (a line that goes directly into his left atrium). He'll also get his arterial line taken out, and his catheter. Once that all happens, he'll be much more mobile - we can go for walks and even outside with our nurse. :)

Then the great news...we're hitting the floor later this afternoon! No moderate care for this guy...straight to a regular room.

Once they pull the lines, they'll keep an eye on his platelets - he's on the border and we want to make sure he doesn't need a transfusion before taking him out.

A busy day ahead! I'll try to take some photos to post once he's a little more awake later.

Prayers appreciated for another good, progressive day!

Saturday, August 15, 2009

our little movie star,

Remember during Evan's first surgery, he starred in a PICU orientation video? We've been searching to find it, and today our nurse located it - it's been on the UofM website the whole time:

http://surgery.med.umich.edu/portal/clinical/patiented.shtml

Check out the 'Tour of the Pediatric Cardiothoracic Intensive Care Unit. You may recognize the featured family (and free Qdoba advertising as well...)

Enjoy - warning. This is Evan on the vent - not an easy sight, but was a needed step towards our healthy little boy!