http://www.youtube.com/watch?v=D58eufx-_4Q

Found this video tonight on youtube.  This describes Joel's heart defect and how it works (worked) before surgery.  Joel also had his pda open, vsd, and asd...which are described at the end of the video. 

Nightmarish

A topic I've been avoiding for awhile.  Our home nurses have heard me talk about my reoccuring bad dream.  Almost nightly, Joel dies in my dreams.  It's horrible.  I've been having this awful scenario play out for over a year now, and I thought it would stop after his trach came out but it hasn't. 

I turn around in the car, and he's lost consciousness without me noticing
Drowning in the bathtub.
Falling out of his highchair
Dropping him
Falling out of a grocery cart...

I could go on and on.  My dreams are haunting me.  I don't know if it's stemming from a few scary moments in the hospital, or just the stress of being "the person who knows everything," or what.  It's exhausting.  And sad.  And they wake me up over and over.  Adam doesn't get them.  Why am I?   

A day like today

It was nice.  So nice.  There was a birthday party in Roseburg today that we were all invited to.  I originally thought I had to work and assumed Adam and I wouldn't be attending.  When I found out that I had the day off, we opted to stay home and let the kids go with mom and dad.  BOY am I glad that we did!  We still had Joel, but when you have as many kids as we do, a one-kid-tag-along feels pretty close to a date.  I planned a surprise "day-date" for us.  A drive to a waterfall was the plan.  A hike up the waterfall with some pictures along the way was the plan...
But it didn't go that way.  We just drove.  I packed strawberries, left-over pizza, and generic diet pepsi...(romantic I know,) and we drove for 2 1/2 hours.  Up Highway 62 to Prospect, stopped at Lost Creek Lake, visited the marina, took a few bolus breaks, checked out the yurts and cabins at Willow Lake,...yada yada,...and eventually made our way home.  IT WAS FABULOUS.  Unfortunately I was having such a fabulous time that I forgot to even take my camera out.  I can't remember the last time I had 3 hours of straight company with my husband without being interrupted by a child, a tv show, a phone call....my parents...you name it.  It was absolutely what the doctor ordered.  Thank you mom and dad for taking them!  I love you long time!

Therapy.

We had a little sit-down with Corinne and Nancy this week.  Nancy is a family teacher and Corinne is our OT, (occupational therapist.)  It was our first time meeting with Corinne, and Joel pulled out all of his new dance moves for her (he has two. :)  I can't express enough how much I love therapists.  Besides the fact that I love our Washington crew, they are great people.  They want what's best for your child- to thrive and excel, they celebrate your victories with you.  It's exciting for us because it's reinforcement that we are actually making progress when it feels like we're in the middle of a plateau. 

The ladies dropped me a name of a Community Health Nurse, Debbie, who I am meeting with next week to discuss Joel's dietary needs.  Things have gotten worse in that area, and he's gone to eating little to nothing at all....part of which is from a change in formula, and part because he's stubborn.  I'm putting a lot of faith in a woman that I haven't met yet.  I'm hoping that she can help us resolve this issue, and make our child eat.  I want him to eat desperately.  Watching him refuse food all day long is really getting me down.  Some prayers would be great. <3  XO

Life Starts Now.

"A Day in the PICU" was such a great outlet to me during the time that I needed it.  There's only so many updates in the changing world of a sick baby via facebook.  Much of it is sad at times and for the thousands of "how are you" questions, this seemed to be the right answer.  But that was then, and this is now.  We're in a different place in Joel's recovery, and if you're a parent of multiple children (one of which being special needs,) you know that the stress of rehabilitation takes it's toll on the entire family.  Our other three kids need recognition in more ways than they used to.  This blog is for them too.  'Life Starts Now' is dedicated to my husband, and our four kids....so that we can document the aftermath of CHD on a family that refuses to do anything but cling to each other, and our Creator.  Feel free to follow our journey.

For the love of all things green

I absolutely love gardening.  Fortunately, my parents' house has a large area for that.  My mom and I have worked so hard this Spring on building a large one, and it's starting to pay off.  With the additional stress of Adam's summer term, me working, and Joel's "entourage," it's nice to have a little sanctuary to retreat to once in a while.....or every day. :)

Let's Talk About Food.

Food and the tube.  Uuugh.  This will get better.  We're at the start and it's going to get better.  So a week ago, Joel was eating up to 11 ounces of baby food a day....around 100 calories.  I was stoked.  Something changed when I went to work.  Daddy feeding him was apparently the trick.  And then we had G.I. a week ago.  Until now, Joel's been on a formula that is basically broken down for him.  His body didn't need to do any work to retrieve the nutrients from it; and there was a reason for that.  He was getting all of his food directly into his small intestines.  HOWEVER, now that he's the cool dude that he is, taking foods in his stomach like normal people....I thought we should push for pediasure. It's normal for kids his age, it comes pre-made, so I don't have to be making pitchers of formula everyday (YAY,) and it's what his body needs.  So we made the switch.  La-de-dah.  And guess what?  The kid doesn't want to eat now.  Not at all.  He's figured out the sign for "all done" and "yucky/don't-put-that-in-your-mouth" and he does both when I offer him bites of my food.  Going from 10-11 ounces to maybe 4 is disappointing.
Here's what we think is going on:  Pediasure is more filling.  His calorie/ounce has increased, there is more fiber in his food, and his body is having to do a lot of work....(normal for you and I, foreign for him.)
So now we wait.  We've been given the advice to wait it out, watch for normal bm's, and hopefully his appetite will increase.  Let's hope so.  We don't want to start back at square one.  Pray for Joel to eat!

Doctor Visits

Just thought I'd post a quick update on Joel's doctor visits.  We saw cardiology at the end of last month, and everything looked great.  He was extremely well behaved for a toddler past nap time. :)  We were cleared to now see cardiology once annually.

Last Tuesday, we made it up to Legacy Emanuel for G.I.  I was a little worried about this one, as we've changed Joel's fluid and food intake dramatically (without permission, and without a swallow study...)
but it went well.  He's a new doctor, but he was professional.  We got the o.k. to see him every six months, a huge step from where we were in Tacoma.  Unfortunately, Emanuel doesn't have dietary included in their GI appointments, so I have to make an appointment with a feeding team separate from them to talk with a dietitian (annoying.)  Bummer.  So, no swallow study yet.  I've called three times now, routed to different voice mails, with no luck.  I have six days off, starting....oh, 2 hours ago.....so I'll have some free time soon to get to the bottom of the run around.  One cool advantage to Medford is that they have a local feeding team!  Major plus.

Next week we drive to Doernbecker for Respiratory.

Side note:  Joel's trach stoma (stoma is a fancy word for hole) is still open.  It was supposed to close on its own within a month of taking the trach out.  So months later and an out of state move, and we're trying to schedule this surgery to close it up.  This surgery is good because: #1:  Holes in the neck aren't a benefit when you're swimming in pools or taking baths, and #2: It has a striking resemblance to a butthole.  So we knew the cosmetic portion would come at some point, but now that there's some functional issues, we're gonna put a rush on that.  Also, Joel's learned how to "neck fart."  Meaning he pushes air out of his neck....at perfectly inappropriate times.  In public.  And he thinks it's so funny.  It kind of is.  :)

Yes, back to respiratory....we've been having a hard time getting into our Washington surgeon- whom we love so much- because we don't know if they accept our Oregon state insurance.  Still waiting on that, but in the meantime, we'll be seeing a Respiratory doc who may refer us to someone new, or pull strings so that we can see Boseley again in Tacoma.

August 10th we have our first appointment with an OPTHAMOLOGIST.  Yes.  Opthamologist, not optometrist....because by now, I've figured out the difference, and I'm tired of dealing with the two of them, and I want my kid's eye fixed.  A very best friend of mine referred me to a doctor that she personally worked with, and I've decided that if I trust this guy, Dr. Charles Bock, then we'll do whatever he thinks we should do.  Surgery, exercises, whatever.  I just want to get on with our lives.  Of course, Joel is a high risk kid for the corrective surgery not working because of his other issues, so if I end up having him with crossed eyes for the rest of his life, he'll still have lots and lots of pictures taken. :)  And we'll love them just as much.

Dinner Date

With money constraints and our busy schedule, date nights seem to be few and far between.  Adam picked me up the other night after work and we drove to Bear Creek park.  It was a beautiful night!  Adam cooked dinner for us four (we were minus Logan and Connor,) and we sat and enjoyed quality time with one another.  It was the perfect date, plus two. <3

Gosh, I used to be such a blogger, and now I can't seem to find the time to even check my favorite blogs to read.  I started a job a few weeks ago, and they're working me into the ground!  Life is good here.  We have a lot of new things happening, my job for one, Adam starts school in another week, and we've been chipping away one by one on our summer fun list.  Last weekend we made it to Lakeside and CAMPED!  Yes, Joel went camping for the first time.  And it was way fun.  Here are a couple of pics.

Snapping his fingers- the new coolest thing to do!

First Boat Ride!

Joel has come SO FAR in his eating in the last week.  Just when I was getting discouraged, he started eating more than 8 ounces a day in baby food!  He's added feta cheese, and greek yogurt, and watermelon, avocado, and cheerios to his diet. While we were camping, he actually bent over and took a bite of Adam's turkey sandwich when we weren't looking!  We have our first GI appointment with the new doc on Wednesday of this week.  I'm nervous.  Dr. Yuwono was so "tuned-in" to our family.  I just hope the new guy is too.

Also new: snapping fingers and dancing.  :) :) :)