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!)

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 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 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!

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!

24 hours in the life.

Friday, 10:00am - playing outside, hamming it up for the crowd.

Friday, 1:00pm - sleeping peacefully, waiting to go back for surgery.Saturday, 9:00am - off the vent, snoozing in a room with a view.
Life is good.

Evan's doing great - he went off the vent last night around 12:30am. Pressures are good, he went off dopamine (pressure med) this afternoon. On Lasix to get rid of fluid, which he's peeing great. He's been sucking down as much Pedialyte as we'll give him (8 oz so far). Napping peacefully, even clapping at one point in his sleep. He's in a private PICU room, so it's nice and quiet, even with a view of the courtyard below. His nurses are wonderful (as always!) and we've been spending the day by his side. Looks like he should be out of the PICU by Monday (yah!) and hopefully home later in the week.

Life is great.

success!

Evan's surgeon just came and gave us the final word - everything went great! The nurse didn't have a complete story...

His mitral valve had a large amount of tissue above, to the degree they couldn't even see the valve (abnormal even from what his surgeon is used to seeing). He even said they had to blindly cut a little to figure it out - but was able to safely cut it all out, leaving the valve intact. He then dilated the valve some (now at a 17 instead of a 14 prior to surgery). This should make a huge difference to his heart function and flow ability.

He did go into the aorta, and scrape the small amount of tissue away from below the aortic valve - this was a quick, easy fix.

Evan handled everything well - his blood pressures are great, and came up on no meds other than the pain med. He's having a junctional heart rhythm - normal for after a surgery like this. He handles it just fine though, and should be back in steady sinus heart rhythm within the next numbers of hours.

The next 12 hours will be the most difficult on Evan's heart - he'll have meds to help get him through. They'll continue to watch for bleeding and rhythm as he proceeds. Prayers (and some amazingly talented surgeons!) have carried him through, and we appreciate as you continue to pray with us.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7

more update

Evan's wrapping up surgery - he's off of the heart/lung machine! Dr. Devaney was able to REPAIR! not replace his mitral valve (yah!). He didn't end up doing anything with the aortic valve, but we don't know why yet... more news to come once we talk with Dr. Devaney (thus far, was just the nurse practitioner). Dr. Devaney will escort Evan up to the PICU in about an hour, then will come talk with us (around 5:30). They'll get Evan settled, and we'll be able to see him an hour later (around 6:30).

More updates to come as we get more info!

Evan update

Evan went into surgery around 1:30, we expect a 4-5 hour wait til his surgeon, Dr. Devaney, brings him up to Pod A (PICU). We did learn that they'll be doing a little bit more than we first anticipated for this surgery.

Mitral Valve - this was the original reason we are having this surgery. His has a supravalval ring (basically, a ring of tissue above his mitral valve) that, along with his parachuted mitral valve is causing a back up (stenosis of mitral valve). Dr. Devaney is hoping to scrape this tissue, and slit the leaflets of the valve to open up the flow enough to hold Evan off of a mitral valve replacement for a number of years. Right now, his valve is a size 14, where the smallest replacement valve is a 16, so it would be very crowded, and the crowding would further hinder his 2nd problem...


Aortic Valve - this we were unaware of before talking to Dr. Devaney this morning. They've noticed that Evan has developed a subvalular membrane (ring of tissue) - right now, it's not having an effect, however there is a tendancy of problems developing quickly once it grows. Dr. Devaney is also planning to scrape at this ring during surgery today.



Evan's heart...
Both of these rings will impact his bloodflow throughout, and the 2nd ring (aortic) is likely a result of the impaired flow he's had for the last year. We know that this surgery isn't a cure all forever. The supravalval ring in the mitral has a low tendency of recurrence, however the subvalular membrane in the aortic does reoccur 10-20% of the time. Based on Evan's tendancy towards abnormal growth, this is likely. This 2nd ring (aortic) is further evidence to not replace the mitral valve today. By putting in a valve that's too big, it will further crowd the already small aortic valve opening.

Each procedure is quick, but the whole procedure takes 4-5 hours. We just received an update from the nurse (at 3:30) they were just getting through the scar tissue (from his last surgery) and putting him on the heart/lung machine (does all of the blood oxygenating during surgery). So far, everything was going great. Please continue to pray with us, and I'll keep you updated as we can!

wow.

So, we knew that today would be a draining day. That tonight we would feel completely empty. My brain shuts down on surgery days. Last surgery, I lost our car. It took my parents driving us around the parking garage to find it. I knew what we would feel like tonight.

What I didn't know. After an evening spent doing fun stuff with Evan - mainly surrounding an evening at an Ann Arbor mall where he rode the carousel, in a motorized helicopter and train ride and crawling around a play area. After laying in bed, dreading today, trying to sleep. Waking Evan at 5am to get his last bottle in before surgery. Waking, and heading to the hospital. Visiting with dear family and friends. Praying for Evan and walking up to surgery with him and Derek. Being called into the office. Then being told "I'm the bearer of bad news..."

Evan's surgery was cancelled. Postponed until Friday. There was an emergency with another child, who was in the bed in the PICU that was held for Evan after surgery. We couldn't be angry - who is there to be angry at? U of M? It wasn't their fault. Evan was likely that emergency baby a year ago that postponed another child's surgery. Instead, we pray that things are okay for that other family who is likely in a worse situation than us. We pray and give thanks that Evan is stable and happy, and at this very moment, sleeping peacefully in his crib.

We still feel empty though. Drained. To tired to be frustrated. We're back home, not unpacked, waiting to return on Thursday. To have another fun evening out for Evan, another restless night of sleep awaiting his big day. Another morning of preparing Evan for surgery. Another crappy day of feeling drained and empty.

We trust in God's timing. Though, by no means do we understand it. I don't even try anymore. It's a lesson to me of giving this situation up to God. If you know me, you know I like to be in control. Derek claims I have issues. I say he just doesn't know how to listen. I'm learning with this, I have no control, but God does. And He does listen to our many, many prayers going up for our Evan. I told Evan earlier that God has a whole filing cabinet full of prayers, all being saved up for his surgery day. God listens, and answers our prayers. But He does it His way.

" 'My thoughts are not your thoughts, nor are your ways My ways' says the Lord. 'For as the heavens are higher than the earth, so are My ways higher than your ways, and My thought than your thoughts'" Isaiah 55:8-9

These hiccups aren't in our plan, but they are in His. And we continue to trust. And give up control. Even if He takes it kicking and screaming.

Update on Evan

Megan asked me, Beth, her sister-in-law, to post an update on Evan's surgery. It has been cancelled for today due to a baby needing an emergency surgery, and they needed Evan's bed. They are on their way back home, and everything has been rescheduled for this Friday. Thankfully, he will not need any pre-op stuff done. Keep them in your prayers this week. For all of you who see them give them all hugs from us NC Bowman's!

laundry days are the worst.

well, that is unless your laundry is as cute as mine is.

Laundry in our house, not so bad.

ready, set...

Just a heads up that all is set for next week's surgery. The insurance is approved, surgery scheduled, Evan's healthy, it all looks like we're a go.

A reminder of the nitty gritty...

Surgery is being done at Mott's Children's Hospital in Ann Arbor, Tuesday, August 11. Derek and I will be heading to Ann Arbor Monday morning for a day of pre-op testing (again...), then a night at a local hotel with Evan, and back Tuesday for an 11(ish)am surgery.

Surgery will be done by his same surgeon from last year. They will be repairing or replacing his mitral valve - no decision until he gets in there to see it all. I'm hoping for a repair, but we know even with that he will more than likely still need it replaced at some point in his lifetime. Life changes a bit if/when they replace the valve - Evan will be on blood thinners and there's a whole world of changes that's involved with that. I don't know all of them yet, as I'm waiting to learn details when we need to know them. I do know he'll have restricted activities and have a lot of blood work done (I think, weekly).

Evan's stay is probably 7-10 days. Last surgery he was given the same timeline, did remarkable well and was still there for 10 days. So, I'm planning on up to a 2 week stay in case there are any setbacks. While Evan's in PICU, we'll both be staying at the Ronald McDonald house (once a room is available). When he's moved to the floor, I'll stay in room with him and Derek will hole up at Ronald McDonald.

This week, I'm trying to not let my nerves get the best of me, getting prepped for our trip and spending some extra quality time with Evan. I'm taking the end of the week off work for a little "down" time. Life's been pretty normal the last few weeks. Evan's getting to be such a big boy, my baby is all but gone...

I'll update again a bit closer with specific prayer requests for while we're in Ann Arbor. For now, please pray that Evan stays healthy (no bugs allowed going in for this) and for Derek and I's nerves. We're ready to get this over with and try to get back to our (semi-normal) life.

Full of mornings attempting to get ready with extra baggage...Sudden mood changes,

After a subpar review to the chef.

(Yes, he is spitting out his banana)

but all in all, fun times...

Happy Birthday Derek!

You're a wonderful husband to me, and daddy to Evan.


We Love You!

the longer the hair...

The
Better

The

Bedhead.