Monday, July 26, 2010

A Little Surprise, Unveiled...

First of all, I want to wish this sweet boy a Happy 9 Month Birthday!


Now then, as promised, I'm sharing with my wonderful readers the little surprise I mentioned last week. I told you we were having Chase's dedication at our church yesterday (Sunday) morning, and I had a pretty sweet little surprise up my sleeve. Well, here's the deal:

For Chase's dedication, I prepared a video montage and needed the perfect song to go with it. Well, as you may imagine, it was very difficult to find a song that says, "my baby was born with half a heart and has made it through more obstacles and difficulties and pain in 9 months than most people will see in their lifetime." It was weird: the idea crossed my mind to write a song, but I shrugged it off, considering I'm not a songwriter, or singer, or composer or whatever.

But I'd lay in bed at night, wishing I was asleep, but instead hearing phrases in my head that express what I was feeling in my heart. This happened night after night until I finally grabbed my iPhone (in the dark) and started writing down these phrases in my Notes app. It never was really a complete song; just a few lyrics here and a few more there, random night after random night, until one day I finally decided to give it a go and see what happens.

I sat down at my piano (for those of you who know me, you know I've been playing the piano for over 15 years) and thought through those phrases I had typed up. I started thinking through the lyrics more, connecting the missing pieces, not paying any attention to rhymes or rhythms or anything else that a "professional" music writer would care about. I just put my heart on paper using words. Next came the music. I thought through the lyrics in my head and played some random melodies on the piano, waiting for something to sound "right" (although I couldn't explain what "right" would sound like). After a couple of hours (broken down into 5-10 minute segments, compliments of two small kids at home), I finally had something that I felt would work. I met with the music minister at my church (he's awesome!) and he had some great words of encouragement as well as some wonderful suggestions for improving the song even more. Before I knew it, I was recording the track at our church one afternoon, about 2 months after the lyrics started showing up in my heart and head. With his help, I now had a music file I could use for Chase's dedication video.

So that's how this all came about. Without further ado, please enjoy Chase's dedication video, featuring my first (and only) song, written, accompanied and performed my little ol' me. And please remember, I'm NOT a singer so the "quality" of the vocals is nothing to brag about. Just listen to the words and you'll hear my heart expressing the journey God placed my family on when He blessed us with our little miracle/Rock Star, Chase.

((lyrics posted below))



Promise of Peace
© 2010
Music & Lyrics by mom2lo

Verse 1:
How do I begin
to tell you of the love
that awaited your arrival in our world?

Our lives would be complete
once you took your first breath
and we brought you to the home where you belong.

But before we knew your name,
we heard devastating news.
Our lives would never be the same.

And God said,

Chorus:
Rest in Me
Trust in Me
For I know the plans I have for you my child.
My peace I bring
in the midst of the storm.
You'll find hope
in My promise of peace.

Verse 2:
For months we prayed for you
and the healing we desired,
but it wasn't in the plan God had for you.

We prepared the best we could
and trusted with the rest,
knowing God would always meet our every need.

We knew He had a purpose
for this challenge we would face.
Yet we trusted Him and rested in His grace.

And God said,

Chorus:
Rest in Me
Trust in Me
For I know the plans I have for you my child.
My peace I bring
in the midst of the storm.
You'll find hope
in My promise of peace.

Verse 3:
The day that you were born
I was overcome with fear.
Would you make it through all that lay ahead?

I waited anxiously
for a chance to hold you son,
afraid each moment could be your last.

But I never should have worried,
you were held in His hands --
a miracle before our very eyes.

And God said,

Chorus:
Rest in Me
Trust in Me
For I know the plans I have for you my child.
My peace I bring
in the midst of the storm.
You'll find hope
in My promise of peace.

Bridge:
And as I watch you now,
growing stronger everyday,
I'm so thankful that I heard the Lord say,

Chorus:
Rest in Me
Trust in Me
For I know the plans I have for you my child.
My peace I bring
in the midst of the storm.
You'll find hope
in My promise of peace.
For the record, there is a copyright on file for this song (lyrics and music) with the U.S. Copyright Office. In other words, please don't reuse or distribute this song without my written approval/consent. However, I would be honored for you to link to this post to share it with other families to whom this song may minister.

God bless!

Saturday, July 24, 2010

Birthday Planning

LO's birthday is tomorrow and, unlike her first two birthdays, I haven't been planning the event for 3+ months. I guess that might have something to do with having two kids now... the time I had before #2 came along just doesn't exist anymore. This time around the planning went kind of like this:
Me: "LO, what kind of party do you want to have this year for your birthday? Dora? Toy Story? Yo Gabba Gabba?"
LO: (looking through the Celebrate Express catalog) "I want a Thomas party!!!"
Me: "Are you sure?"
LO: "Ya!"
Me: "Okay."
I went to my trusty friend, Vistaprint, for help with the invitations. Don't ask me why, but I'm not one to buy the "store bought" invitations with lines to fill out the "Who, What, Where" information. For one thing, I have crappy handwriting. My other thought is in the time it takes me to write out the invitations by hand, I could've created something fabulous and have them shipped to my house, requiring nothing more than addressing the envelopes. So easy! I found a stock train invitation and went all out customizing it for Thomas the Train. See for yourselves.

Like I said, I went all out. Anywho, the invites were ordered and mailed about 2 weeks before her party. I picked up the Thomas party supplies and a few decorations, ordered a Thomas cake and will have a few balloons as well. We're keeping it totally low-key this year with essentially a family-only party. I figure she'll start preschool next month so this most likely will be the last party I can get away with only inviting family. But once you add up my family, we're still looking at about 30 people! Yay!

Of course hubs and I picked up the Imaginarium train table for her as I mentioned in this post. On a side note, I just had to share this. The instructions to put the train table together? Almost rocket science. This is what hubs did last night (with a little help from me)!

How to actually put the thing together (whew!):

And putting the train tracks/buildings/etc. together once the table is assembled? This is where an engineering degree would come in handy:

But it'll be worth it all because I really think she'll be crazy-happy to have this bad boy all to herself (at least until baby Godzilla/Chase starts toppling buildings and tracks once he's mobile). I'm keeping the party itself relatively simple with finger foods (a TON of 'em!), cake, ice cream and punch. I'm really looking forward to her party and I'm learning that it isn't so bad NOT to spend months of planning for one big day. Don't get me wrong, now. Of course as soon as the dust settles from LO's party, I'll get to working on Chase's FIRST BIRTHDAY -- a mere 3 months from Monday! :)

And as you may remember, we're having Chase dedicated during our morning worship service tomorrow as well. I'm VERY excited about this! I've already told you I have a surprise up my sleeve for his dedication, which I promise to share with you all on Monday. I also bought a NEW DRESS (I heart retail therapy!) which happens to be 2 sizes smaller than I was wearing 3 months ago. (Woot!) So with the busy day I have scheduled for tomorrow, I probably won't be posting but I DO plan/hope to post some pics on Monday, assuming I'm not totally wiped out and recovering from my kids' big day!

Friday, July 23, 2010

How to Take a Nap

Take a lesson from LO. This is the "right" way to take a nap. Don't think about using that big full-size bed 10 feet away from you. Really. Crack open the door a bit to see if mommy or daddy are close enough to yell at you to close the door and tell you to get back into bed. No? They're not within earshot? Okay then. Just lay down for a sec. Go ahead, curl up on the carpet -- just for a second. They'll come around the corner and tell you to close the door and get back in bed. In just a second... or two... or three...

Or not.

If all else fails, just conk out and mommy will eventually come in and carry you to that bed 10 feet away and nap time will officially commence. ;)

Thursday, July 22, 2010

Q&A with a 20-year-old HLHS College Student!

I'm sure several of you watched the ABC show BostonMed a few weeks ago when the episode featured a family expecting a baby with HLHS, right? I watched it. And honestly I was disappointed that it didn't provide any time lapse information so viewers had at least a little clue as to how long the Peerless family was in the hospital with their son, Sam. In my opinion, it went from birth, to an emergency surgery to discharge and then suddenly showed video from their home. It never once indicated how long the family was in the hospital, the fact that the baby had a second scheduled heart surgery (the Norwood) and didn't show any obstacles or struggles with feeding or any other area of the baby's recovery. I was disappointed to say the least. Again, in my opinion, ABC (through their wonderful editing) made the HLHS journey come across like a walk in the park.

I spent some time reading through the various comments on the Peerless family's patient page on the BostonMed website and honestly it seems apparently I'm the only one who felt the way I did about how ABC represented this family's journey. I know they had a very rough time, obviously any family in this position would have a scary and uncertain future ahead of them and I know first-hand (as do several of you) how difficult it truly is. So again, let me emphasize that I'm disappointed with how ABC represented the story and in no way have any ill feelings toward the Peerless family. I am ecstatic their journey with little Sam has turned out so well and am so pleased that their family is together (i.e. her husband is no longer deployed).

Anyway, I say all of this to tell you that while reading through the comments, I came across a comment from a 20-year-old HLHS college student named Tom. He provided his email address in his comment to the Peerless family, so I decided to email him, hoping he wouldn't mind my "stealing" his contact info from ABC. :)

I was pleasantly surprised, overwhelmed and utterly encouraged by the response I received from Tom. I asked for his permission to share his thoughts/comments and answers to my questions here on the blog, and he was so very nice enough to oblige. Thank you again, Tom, for your generosity!

Here we go!

Here is Tom's story, in his words:
"I was born (first child to my parents) in 1990 in the San Fransisco Bay Area and diagnosed within hours with HLHS. I am not sure what the hospital was called but I was transported to UCSF where I underwent my first step of surgeries. I had the norwood and glenn at UCSF with Dr. Haas which was supposed to be 2 surgeries but because of complications was actually 4. My last open heart surgery was done at CHOP (Philadelphia) which was the Fontan with Dr. Spray. I am not sure how many catherizations i have actually had but I actually have one this thursday at phoenix childrens hospital. All of my caths have been done for mainly 2 reasons. 1. To get images, data, and information about what is going on in my heart that is difficult to get other ways and 2. to perform small procedures as in placing a stent or a balloon in the heart.

I am currently on 3 medications; coumadin as a blood thinner, digoxin for my heart rhythm ( i have been known to have heart flutters) and enalapril for the blood pressure in the aorta.

So thats the logistical stuff....as for me, I feel great ! I have lived nearly a normal life with just more restrictions on certain things...less caffeine, less athletics, sports, etc. I played sports until i was about 10 though....just recreationally and with friends and still play some sports with my friends. I just have to make sure I know my limits and my friends respect that which makes it alot easier. I am a college student entering my junior year this august. I am a physiology major hoping to enter medical school soon ! my cath this thursday is simply a checkup on my heart to see whats going on since they have had a difficult time getting images via MRI because of the metal coils in my heart."

After sharing his story, Tom was nice enough to answer my questions:
  1. I'm curious if you have any older or younger siblings, and if any of them have any heart issues?
    • I am actually the oldest of 4 and my sisters and brother have not had ANY other issues; heart or anything.

  2. Did you have a similar series of surgeries like they're doing today? Norwood, Glenn, Fontan?
    • I have had 5 open heart surgeries as of now....the norwood was 3 for me because of complications, the glenn, and fontan! exactly the same but probably go more smoothly now haha

  3. How much of your early experiences/surgeries do you remember?
    • I do not remember anything from my open heart surgeries...its been about 13ish years I think since my last open heart surgery but I do remember some from my catherizations since I have had a few the past few years and one this thursday...its not traumatizing or anything but I do get scared before I go under anesthesia a little. but being the future doctor that I wanna be, I know that medicine and my doctors willl do the absolute best for me so I don’t worry too much.

  4. What was the hardest thing for you as a child growing up with HLHS?
    • I will say that junior high was by far the toughest....boys being boys and being that age is tough because people are sooo critical of each other. I was always embarassed of my scar which I now know is not at all a big deal, in fact, girls dig scars lol.....I also LOVED sports so having to let go of them around the age of 10 because of how competitive they became was also difficult. I had to get over the kids teasing me and stuff in PE class but honestly, after junior high, it was easy because people understood.

  5. If you have siblings, did you feel you were treated the same as they were? Would you have wanted to be treated differently?
    • I have been treated the exact same as them...I mean obviously after a surgery or something ill get special care but other than that, everything was the same which I really appreciate because as HLHS children, we just wanna be as normal as possible.

  6. Did you get sick often as a child, or did you stay relatively healthy when it comes to colds, flus, etc.? If you did get sick, how serious was it?
    • I actually have had a great immune system and hardly ever get sick....when I was a child my parents did everything they could to keep me from getting sick so it never really happened but when I do get sick, its nothing worse than a normal flu or cold.

  7. If you could change anything about your experiences over the past 20 years, what would you want to happen differently?
    • I would not change a thing honestly. and if somehow I could take HLHS away, I wouldn’t because it has made me a MUCH stronger person and I would not be the person I am without it. it has taught me a lot about life and has really opened my eyes to life in general. and my interest in medicine has become a result of HLHS.

  8. What prognosis has your cardiologist provided for your future?
    • I have not really spent the time talking to my doctors about my future that far down the road. The problem and reason that this is the reason is because I am one of the oldest children with HLHS still living....I think the absolute oldest is mid 20s. as bad as it sounds, my "generation" of hlhs patients are like the guinea pigs that are almost like the test material that they learn from....this is why I still see a pediatric cardiologist, because cardiologists don’t know much about our diagnoses and futures. but, as my generation continues to grow older, we will learn more and see how long term effects our hearts.

  9. Just curious... how did your parents handle your diagnosis and surgeries?
    • my parents handle it well actually....I don’t have memories of my open heart surgeries but as for catherizations they act normally leading up to the day but when I get taken back and stuff for the anesthesia, my parents do shed some tears and get nervous....kinda like I do too though. but they handle it well.....probably better than when I left for college lol

      hopefully i gave some good information for you...i know just how hard it must be for you and how much you worry about your child but trust me, medicine is so great right now....i mean, i was born in 1990 and i have been amazing! nearly normal life....just a few bumps along the road.
What an amazing blessing and encouragement Tom has been to my family and I with his open and informative response! I hope and pray he can be a blessing to you, too!

Tom was happy to have me share his email address in case you'd like to contact him yourself and ask any other questions. He's super nice and I just can't get over what an encouragement his story has been to me! You can email Tom at glenntm3(at)cox(dot)net.

Wednesday, July 21, 2010

Da Da!

Figures the little guy would pick his daddy over me... Seems he's come up with his first word, which I'm pretty sure was the same as LO's first. I'm feeling so under-appreciated these days...

((sigh))


Tuesday, July 20, 2010

Sunday! Sunday! Sunday!

This Sunday is a B-I-G day for our family! First of all, this little guy right here is being dedicated at our church during our morning worship service:

I have what I believe to be a HUGE surprise for my family and friends but am not going to say anything about it so they can all be genuinely surprised on Sunday during Chase's dedication. Yay! However, I DO plan to share the surprise with all of my blog readers... but it won't be 'til Monday! ;)

Hmmm, now what else is happening on Sunday? Oh, right. Ya. This girl will be turning THREE on Sunday!

She chose Thomas the Train for her birthday party theme. She's really into trains. This should work out well that mommy & daddy got her this for her birthday present:
One of her favorite friends has one of these and she LOVED playing with it! She also LOVES playing with the one at Barnes & Noble and the one at the doctor's office. I can't wait to stop tripping over trains and train tracks laid out all over our living room floor! I'm not sure who is more excited about her getting this gift!

I can't wait to share pictures with you guys of both Chase's dedication and LO's 3rd birthday party. It seems like only yesterday I was planning her 1st birthday! And to think I'll be throwing another 1st birthday party in 3 months for my special little guy! Yay!

So suffice it to say things have been a bit busy around here, causing my lack of frequent posts/updates on the blog. I'm so sorry for that and hope to have things squared away here after this weekend so I can get back to regular scheduled posting! Thanks for your patience!

Friday, July 16, 2010

Dance

It's been a trying and difficult day for me today, so rather than post a detailed synopsis of the joy I endured today, I figure I'll spare my readers and share something a bit more lighthearted instead.

I give you: LO's latest dance moves...

Even though you can't hear the music, the best part is her awesome dancing!



Oh, and I can't leave my little guy out of the spotlight. Finally, after almost 9 months, we've had a tooth bud sighting... or TWO!

Tuesday, July 13, 2010

Familiar Feelings

A few months ago, I found a new heart mom, Jill, who is expecting a baby who had been diagnosed with HLHS. Her precious son, Joshua, will arrive in about a month, and he has the same journey ahead of him as Chase has. It's a scary place to be. Getting that kind of diagnosis on your unborn child is absolutely devastating. If there were another word that meant even worse than that, it'd be applicable here. Those of you who have healthy children and have never had to receive such catastrophic news can never truly identify with the road we "heart moms" were chosen to walk down.

When I read her latest post, I couldn't help but tear up. She's in the waiting period before Joshua's arrival. I too remember being in her shoes what seemed like only days ago, waiting on Chase's arrival, waiting to see what God had in store for him, waiting to see if he would survive his first life-saving surgery. It is scary. And it is lonely. I wanted to share a link to her post here today because I feel like family and friends of heart families need to be reminded of what heart moms go through. They need to know what we're feeling and thinking. Even if they can't identify with us, surely they would want to know how to specifically pray for us in our darkest time of need.

You can read the post on her blog here.

Saturday, July 10, 2010

For the Record

So for the record, the responses so far to the question I posed yesterday regarding blood type have been very interesting. Out of the 11 responses I've received up to the time of this post (10:53 pm EST), NINE of our precious HLHS babies have A+ blood. Approximately 82% of responders. The other two responders included one O+ and one A- baby. Oh, and another random piece of info? I've always read that HLHS is more common in boys than girls. Of the 11 responses I received? Only 3 of them are boys.

Is it just me or is this weird? Granted, this is an EXTREMELY SMALL sampling of heart babies, but still... I can't help but wonder about this. I mean, blood types are determined at conception, right? Yes. And, according to a quick Google search, "one of the main factors which determine blood type is family genetics. A child receives separate sources of genetic code called alleles from each parent at the time of conception. One of the alleles located on chromosome 9 contains the precise blood type of the donor parent, and is classified as A, B, AB or O. An additional factor is called the Rhesus factor, which could be positive or negative. The actual blood type of a child is determined by the dominant blood type between the two parents..."

So obviously I'm not trying to get into a discussion how blood types are determined. I'm more interested in the simple fact that blood types are determined at conception. Before the heart begins to form. I don't know what role blood type plays in the grand scheme of things, but I can't help but find it totally ironic that so many of our precious little ones have the same blood type. Surely some big organization with lots of research funding is looking into things like this. I guess this is why raising money for CHD research is so important. I've been feeling led to do more to raise awareness but I'll save that for a later post.

Sorry if this was random or if it doesn't make a lot of sense. I've only slept for about 4 hours over the past 3 days, but that's totally for another post, too. ;)

Questions for Heart Moms...

Okay, this will sound totally random, but what blood type is your heart baby?

Also, what blood type are you and your heart baby's father? I think it'll be interesting to see if there are any trends here. I'm O- and hubs is AB+.

For the record, Chase is A+ (as is LO). Seems several of my heart family followers have A+ heart babies as well...

This is all very interesting...

Thursday, July 8, 2010

Just Some Random Stuff

So, it's been a few days since I've published a post out here, so I figure it's time. The awesome thing is that there really isn't anything crazy to write about these days! We're just an extremely happy family of four enjoying spending time with each other and loving our summer! I just can't say enough how amazing it is to just be a "normal" family doing "normal" things and enjoying our "normal" life! Thank you, Lord!!!

Hmmm... let's see. So yesterday I took the kids to Babies R Us to shop for a new car seat for LO. She's currently in a Britax Marathon, which I LOVE, and honestly she still fits well in it. The durn seat goes up to 65 lbs., and she's just now 30 lbs.! But believe it or not, she's getting close to maxing out on the height limit! Crazy, right? So I wanted to let her try out the Britax Frontier 85 to see if she'd like it. It's a combination 5-point harness seat (like she's using now) but also functions as a booster once she hits 40 lbs. My favorite thing (besides the excellent safety features) is that it has not one, but TWO cup holders! I can't tell you how tired I get of handing her drink back and forth while I'm trying to drive since her current seat doesn't have any cup holders. I also like that this combination seat has arm rests and doesn't seem as "inclusive" as her current seat. I guess I think it looks more like a "big girl" seat than a "baby" seat. So I put her in the Frontier and I'm pretty sure her face depicts her level of excitement regarding this particular car seat:

Ya, that's right. She was stoked. Totally stoked.

In the mean time, my little man was chillin' in the cart, eating his Puffs by the handful. No surprise there! Isn't he a cutie??

So since I'm on the subject, I'm going to sidetrack myself for a moment. In the picture above, Chase is in the Buggy Bagg I bought for LO a few years ago. I used it with LO for about a month or two and the zipper that closes the bag broke. The company was nice enough to send me a replacement. Within a month, the strap that connects the seat to the shopping cart broke. Keep in mind I honestly wasn't even using it all that often -- maybe once or twice a week. At that time, I just threw the durn thing aside in the garage and forgot all about it. I busted it back out to use with Chase, but since he hasn't really perfected sitting independently just yet, I want to be sure he's safe. Obviously he's buckled into the seat cover, but the seat cover doesn't buckle or attach to the cart. Long story longer (apparently), I decided to order a Balboa Baby shopping cart cover. It is the cutest thing ever (online) and I'm really excited to get it either tomorrow or Saturday. Have any of you used a Balboa Baby cart cover? It looks much more comfy and padded than the one I'm using now. I hope Chase likes it! I think he'll love the crazy geo print I chose for him! :)

Continuing with the random... for the 4th of July we headed to our church parking lot to watch an amazing fireworks show. I was curious to see how the kids would do. I know LO doesn't love the noise of the fireworks, but was interested to see how Chase would do. Here's a couple of pics I grabbed before the big display.

Chase with his little friend, A. She was totally over having her picture taken and was ready to take off. This sweet little girl is just a month older than Chase. I just know they'll be BFFs growing up. ;)

And here's LO looking totally excited to be hanging out with her friends and cousins.

During the actual fireworks, LO covered her ears and pretty much freaked out. She definitely didn't like the loud noise! But she sat on daddy's lap and he helped cover her ears and kept her turned around so she could at least watch the fireworks. She did say later how much she loved them and talked about all the different colors. So sweet!

Chase did amazing! Keep in mind this was around 10pm, and he's usually tucked nicely in bed by 8pm. He didn't cry at all! I think the first few scared him a bit, but once he saw what was going on, he was captivated. He stayed on mommy's lap and I kept his ears covered while he stared up in the sky in awe. I love imagining what it's like to see the world through his beautiful, innocent eyes.

Another totally random Chase story. My mom happened to pick up a box of those Huggies "designer" blue jeans diapers. Have you seen the commercial? "The coolest you'll look pooping your pants." No? Well, you've got to see it so you can truly appreciate the humor of these hilarious diapers. Go ahead and watch it below. I'll wait.



Ya. So what crazy product development department came up with those? And the marketing department coming up with that tag line? How very sad.

So my mom bought a box for Chase. I had to put him in them just so we could get a good laugh out of it. Without further ado, here he is!!!

Another shot of his awesome diaper. See how happy these designer diapers make him?? ;)

Crazy. Just crazy.

And for my next (final?) Chase funny story... I went in to get him up the other morning, turned the light on, and got sidetracked doing something. He was just cooing and talking to himself in his crib, so I didn't worry too much about it and kept doing whatever it was I was doing. A few minutes later, I looked over at his crib and noticed something unexpected... Do you see what I see?

That crazy, silly boy of mine! A few seconds later, I noticed his sweet, smiley eyes peeking out from behind the bumper pad as if to say, "Hello?! Mom!! What are you doing out there? I'm ready to get up now! Come get me!!!"

I so love this boy!

And of course I love my girl, too. Speaking of... I think I'll end this random post with a little video clip of a discussion I had with her earlier today. For the record, this was right after she woke up from her nap (as evidenced by the "crazy hair"). Can you say "bipolar??" ;)

Oh, and I added some captions to assist you in understanding her crazy-tired-whiney vernacular.


Saturday, July 3, 2010

That's So Funny!

Chase dropped a toy on the floor and daddy picked it up for him. Apparently it was the funniest thing he'd seen in his crazy 8 months as he busted out the biggest belly laughs we'd ever heard! What was even more funny was that he kept doing it over and over and over and over again, laughing the entire time!

He is so sweet and hilarious and amazing. I love this boy of mine!!!

Friday, July 2, 2010

Praise!

Praise the Lord! Chase had a cardiology appointment this morning and I'm beyond thankful to say we received a fantastic report! His o2 saturation was 92 (which is probably the highest I've seen it), with the comfort level being between 85 to low-90s. Basically we don't want to see it get much higher than that before he has his final surgery, the Fontan. His blood pressures were great, his pulses were great and his echo looked great, too! Dr. Horne did still see a trace leak with his tricuspid valve, which was basically the same as what he saw 2 months ago. He did say typically this kind of leak seems to improve after the Fontan, so that was encouraging. And I was surprised by his latest stats: 27 1/2 inches long and up to 18 lbs. 15 oz.! I was hoping he'd crossed the 18 lb. mark, but apparently he's almost to 19! Way to go, sweet boy!

If that's not a good enough indication of how well our little guy is doing, maybe this will help: our next cardiology appointment is in FOUR MONTHS!!! Yay!!!

And I couldn't get over how incredible Chase was during the entire exam. From the blood pressures to the echo, he was a total CHAMP! I will say that towards the end, he was getting a bit tired of all the hoopla and was ready to leave...


Isn't that face just priceless?!

Dr. Horne did tell me something I wasn't aware of when I asked him about the prerequisites for the Fontan. Of course it's based mostly on weight, age, lung pressures and heart function, but I've always been told it would be between 2-3 years old. He said the majority of their patients are closer to 4 when they have their Fontans. Wow! I just assumed it could be between 18 months to 3 years, based on what I've heard and read on other blogs. And hubs pointed out maybe most of Dr. Horne's patients are closer to 4 because they have a hard time putting on weight. We haven't seen that to be an issue with Chase (as of yet), so perhaps he'll still fall in the 2-3 year range.

We also talked about the fact that we want to have Chase circumcised. We knew it couldn't be done at birth and it couldn't be done within a few months before or after each of his first two surgeries. Dr. Horne recommended early on that we wait until he's closer to 1 before we schedule it. Hubs and I have talked and we're leaning towards taking him back to MUSC to have the procedure completed there so we'll be close to the right people should anything unexpected happen. It seems like an easy enough thing to have done at the local children's hospital, but considering how Chase responds to anesthesia, we'd rather play it safe than sorry. So when we see his pediatrician in a few weeks, we'll ask for a referral to a pediatric urologist (I assume?) at MUSC. My poor boy!

So overall it was a wonderful appointment and was such a relief to hear that he's doing fantastic and no new issues or problems were found. Praise the Lord! We are so grateful for His hand of protection on Chase and for each new day he gives us to love on our beautiful son! Thanks to everyone for your thoughts and prayers for the appointment this morning and for your prayers for Chase's continued health.

Thursday, July 1, 2010

Boston Med


Just an FYI... ABC is running a medical documentary on Thursday nights at 10pm EST called Boston Med. It's an eight-part series inside three top hospitals -- Massachusetts General, Brigham and Women's & Children's Hospital Boston. On tonight's episode, they will be following a family that gives birth to a baby with HLHS. Here is a short synopsis from ABC's Boston Med website:
Renee Peerless has spent nearly nine months of her pregnancy alone while her husband serves with the military in Iraq. His absence is made more difficult by the knowledge that their baby in utero has a serious heart defect and will need surgery within days of being born. A story of courage and hope, viewers will recognize the universal themes of motherhood, duty and determination that summon the best from us in difficult situations.


I obviously have no idea what's in store for this episode, so I can't say how much it might mirror our journey with Chase. However, I am certain it will give you at least a tiny glimpse into the world of a heart family. Do yourself a favor and tune in!

Monday, June 28, 2010

8 Months!

Well, it's hard to believe that my sweet little Chase turned 8 months old on Saturday! Where has the time gone?? He's turning into such a big boy and I couldn't be more proud of him! I figured it's been a while since I've shared a little update on the boy, so here goes!

Chase has been seeing an occupational therapist (OT) every 2 weeks for about a month and a half now. We determined through an assessment that he's lacking a bit when it comes to fine and gross motor skills, and the OT has been a big help! After our first appointment, I started working with him on sitting up independently. When the OT came back 2 weeks later, he was an old pro at sitting up all by himself! He's not quite figured out how to catch himself when he starts to lean to one side or the other, but we're working on that. We've also been working on tummy time. Specifically, I want to get him to push up on his hands since this is one step closer to crawling. He still is NOT a fan of being on his tummy, but I know he'll get there eventually. He does a great job of rolling from his tummy to back (especially with his temper -- when he gets mad with being on his tummy, he's quick to flip over on his back!), but of course he has no desire to roll over from back to tummy. He'll hang out on his side for a bit, maybe, but has yet to make it all the way onto his tummy.

This Thursday we have a physical therapist (PT) coming out to do an evaluation on him. I've been noticing he seems to only want to use one hand/arm at a time when playing, eating, etc., almost as if the other hand/arm doesn't exist! I'm not terribly concerned about it but the OT and I agreed it would be a good idea to at least have an assessment by a PT to make sure there's nothing going on that might need to be worked on. We'll see what she says on Thursday!

The other big Chase news is that he has a cardiology appointment with Dr. Horne Friday morning. If you recall, it's been TWO MONTHS since his last cardiology appointment! Although I've loved having two months of NO doctor's appointments, the heart mom in me is very nervous and somewhat scared that they will find "something" on Friday. They'll check his o2 saturation, his blood pressures and pulses, and of course do an echo. I've been praying already that they don't find anything and that his heart is functioning as wonderfully as ever and his valves aren't leaking and his artery patches are holding nicely. It's crazy to think of how our world can be turned upside-down in the blink of an eye if this appointment reveals anything that would need to be addressed. That would obviously require an unplanned trip to Charleston, possibly a heart cath, and who knows what else! But right now I'm going to try NOT to worry and NOT to think of all of the "what if's" that could happen. I keep reminding myself that my job is to LOVE LOVE LOVE my boy every second of every day with all that I have in me since we, like everyone else, aren't promised tomorrow. If you think about it, please say a prayer for this appointment Friday morning, for Chase to have an excellent report and for me not to go too crazy with the waiting and worrying. :)

Also on the horizon is Chase's dedication at our church, which I happened to (purposely) schedule for the same day as LO's 3rd birthday (when all of the out-of-town family will already conveniently be in town)! So yes, I'm going to be QUITE busy over the next 4 weeks trying to get everything lined up for a dedication AND a birthday party. Good times!!!

Oh, and last night hubs and I put Chase in his walker for the first time and he was so cute! He really liked it and was already scooting himself around a little bit within minutes! See how precious?


I also had to share this pic of him from the pool the other day. Such a cute little dude!!!

Sunday, June 27, 2010

Date Night? What's That?

WARNING: This post is pretty long. And somewhat sappy. Read at your own risk!

Date night? What's that?

No, really. What is that?

It's been well over a year (for obvious reasons) since hubs and I had a real date -- you know, the kind without kids? The kind that takes some level of planning? The kind that reminds you that you're a couple and not just parents?

Ya.

I decided it was time to make it happen.

I started planning about 3 weeks ago. I knew I wanted to have a special date night with the husband, and I knew I wanted it to be a surprise, and I knew it was going to take some serious time and planning. So the first thing I did was line up babysitters. Yes, plural, as in more than one. It was sort of a prerequisite for us. It would be the first time we'd leave both kids with someone other than one of us, and we had already talked long and hard about this over the past several months. We knew we wouldn't feel comfortable leaving the kids with ANY one person -- yes, we're overly cautious and probably somewhat OCD. But that's how we roll. So anyway, I lined up the babysitters, who happened to be my mom, my sister and my wonderfully sweet niece (more of a playmate for LO than a babysitter, of course). We figured out a night that would work for them and I began my planning.

I'll fast-forward through the weeks of preparations and just get down to the big day, which happened to be this past Friday. Hubs left for work, as usual, in his blue jeans and golf shirt (casual Fridays at his office). Once he left, I busted out the makings of my not-quite-famous-but-should-be Chocolate Caramel Brownies. They are so incredibly awesome that I can't even share the recipe here. Aren't I awful? Anywho. There's a little background here. Hubs and I used to work at the same building (but for two different companies) back in 2005. The quick, boring story is I noticed him and wanted to "woo" him. We had some mutual friends, who happened to work in the same area as he did. So I'd whip up some of these delicious brownies and use them as an excuse to head over his way and talk with him (you may recall I mentioned my stopping by his desk to drop off my latest and greatest baked goods in this post). So I guess you could say I tried to woo him with my chocolate caramel brownies. The nice thing? It worked!!

So okay, back home, it's Friday morning, hubs has left for work. I get started making my brownies. I also make some handmade note cards while the brownies are baking. I write a cute little note to jog his memory about our early days of baked goods, cut the brownies and put 'em in a tupperware container, topped with a bow. Then I put the container in a small brown shipping box with some blue polka-dot (or as LO says, "coca-dot") tissue paper. I seal the box with shipping tape and put his name on the front in bold, black letters. Then I load up the kids in the car.

On the way to his office, we stop at Sonic and I grab a gift card. Suffice it to say there's another story from our early beginnings involving Sonic. I grab another handmade note card and write a little quip reminding him of that Sonic trip, then tape the gift card to the back of the note and put it in the envelope.

We hit the road again and drive to hubs' office building. I took the box inside and left it with the security guard, asking him to please let hubs know there's a package waiting for him, then darted out the door to keep from being spotted.

Then we drove over to where hubs parked his car. I unlocked it and put the Sonic note card on his seat, where I expected he would find it when he left during his lunch hour to run some errands. The kids and I then headed to Costco for some errands of our own.

Hubs called me not long after we left his office to tell me he received a mysterious package at the office... and called me out on my incredible awesomeness. ;) While we were talking, he was walking out to his car to run some errands, so we were still on the call when he found the note with the Sonic gift card. He laughed (it was a funny thing that happened that night at Sonic during our early courtship) and asked if I wanted to meet him for ice cream. Considering it was only 11am, I didn't have any food for the kids, and I was not going to let them eat ice cream for lunch, I declined. Honestly, I had a TON of other stuff to do to prepare for our date night and needed to get to it! But he of course was already on his way to meet us at Costco. We ended up doing some quick shipping at Costco and had a yummy (and CHEAP!) lunch together (pizza for him and LO, a chicken Caesar salad for me and a bottle for Chase!).

After lunch, I headed back home while he went back to work. Once I arrived at the house, I started working on a few more little projects. One was quick and easy: a "mixed CD" created from a playlist of songs that we listened to while we were dating, including the song we played for our first dance at our wedding reception). Then on to my next project: I happen to still have a PST (for you non-computery-educated folks, this is a file that stores emails in Outlook) from 2005 when hubs and I started our initial courtship. I had been reading through them for the week or so leading up to our date night (was looking for inspiration for the date, but also enjoying the walk down memory lane) and decided on a fun little game. I chose random comments from these emails and printed them on little cards along with the date written and which one of us wrote them. The "game" would be to read through them after dinner and try to have hubs guess which one of us wrote them. Some were funny, some were inside jokes, some were heartfelt and sweet. So I printed those little cards and put the kids down for naps. I needed to make another run to hubs' office, so I called my mom to come over and sit at the house while the kids napped so I could run out real quick.

The plan was to leave hubs a note (this one was a note card, that folds, and you write inside it, instead of just a one-sided note card like the earlier two notes -- this will matter later in the story) with directions to where I wanted him to meet me. I also brought a pair of shorts for him and two different pairs of sandals to choose from (it was SO hot that day and our date was going to be pretty laid back and not at all "froofy").

I drove to his office again and found his car. I placed the sandals on the passenger seat, set his shorts on top, the note card on top of the shorts, and his sunglasses by the note. I also put the CD in his CD player and queued it up to start playing "our song" when he started the car. For the record, the note basically said something like this:
Forget another boring night at home as parents...
it's OUR TURN to have some fun as a couple!
Meet me at 117 W. Blahblah Street.
I've left you a change of clothes so you'll be more comfortable.
And enjoy the music during your drive!"
I also wrote driving directions inside the card. It was as simple as turn right, then turn right, the destination is on the left. An easy 10 minute drive from his office.

After leaving everything placed perfectly in his car, I headed back home to shower and get ready. Of course hubs decided around 4pm he was done for the day and was gonna head home. I basically asked him to please do me the favor of staying at work until 4:45pm, and don't ask questions (our dinner reservations were for 5:30pm). Lucky for me, he complied. Whew! I finished up the last little things I needed to do, gave my mom and sister their "instructions" for keeping LO and Chase, and hit the road.

On my way to the restaurant, hubs texted that he was leaving (it was almost 5pm). A few minutes later he texted again and said "You are just full of surprises..." I figured he found everything in the car and was heading to meet me.

YAY! It worked!!!

I arrived at the restaurant at 5:10pm and sat down at our table. I gave the waitress a card that I wanted her to bring to hubs at the same time that she brought me the bill at the end of our evening. Totally random, but I also brought a box of Kraft macaroni & cheese. It was the first "meal" (if you call it that) I cooked for him. I thought about asking the kitchen to whip it up and serve it to him instead of whatever entree he orders, but decided I didn't want to inconvenience the kitchen staff so I didn't. No big.

So I sat. And waited. And watched for hubs. It was 5:27pm and I got a call from hubs. He basically asked me for directions coming from a different way than what I wrote in the card. I thought it was weird, especially since it was so simple, but I gave him the info and he informed me it would be closer to 6pm before he arrived. I tried to hide my disappointment, said it was okay and I would see him when he got there.

Oddly enough, I got a text a few minutes later from my mom telling me that hubs was on his way. Whaa?? That's weird. How would she know? So I called her. And couldn't believe what happened.

My sweet, adorable, loving, handsome, kind, thoughtful husband? Wow. He got to his car after work, saw the note card, heard the music and headed HOME. To our house. Not to the restaurant. But to our house. On the opposite side of creation as the restaurant where I was. Waiting. For him.

Turns out he opened the envelope and saw the note card. He turned it over, thinking it was another single-sided note like the earlier ones. Of course, it wasn't. But it did have a lovely picture of us on the front, and nothing on the back. So he heard the music, saw the cute card and thought I was sweet for doing that. Never mind the fact that there's a pair of shorts and two pairs of sandals on the seat next to him. Really. Just go ahead and drive home. It's cool. I'll wait.

I'll cut him some slack. He did feel absolutely awful when he got home and my mom and sister were there, and I wasn't. The look on my mom's face told him he had done something VERY wrong. He quickly changed into his shorts and sandals and hit the road to meet me. Luckily he was only about 20 minutes late. :)

Anywho, we had a nice dinner at a lovely restaurant. We talked. We held hands. It was wonderful. When they brought me the check, they brought him the card I left for him. It had his favorite picture of us on the front and my heartfelt sentiments written inside. I'll spare you the sappiness...

After dinner, we walked down to a nearby park and sat on a bench swing together, enjoying the beautiful evening around us. I busted out the little cards with our email sayings on them and we relived some of those memories. It was very sweet! Then we headed home to our sweet kids and to relieve our babysitting staff. :)

I'm happy to say that hubs was surprised with everything I had done and thought it was so sweet of me. It was fun to show him it's possible to have a fun night out together without the kids, and that the kids could in fact survive a few hours without us... ;)

Sunday, June 20, 2010

First Time for Everything!

Just wanted to share a little shout-out here on the blog that my crazy self just completed my first 5k yesterday! I've been working out with a trainer twice a week for almost 3 months (have I mentioned that here before??) and am ecstatic to tell you I've lost almost 20 pounds! C-ya later, evil baby weight and heart surgery stress weight! Yay! So I decided why not put myself through even more torture by completing my first 5k? Sounds like fun!

The race was at 9pm last night, which was my only saving grace considering it was still about 88 degrees when the race started. I can't imagine running a race in the dead heat of the day! Eeeew! So I told myself I wanted to come in under 45 minutes, and I totally succeeded! My chip time was 40:18!!! I figure this isn't half-bad considering I didn't even know about the race until 9 days beforehand so I literally did not train AT ALL for it.

Yay!

Wednesday, June 16, 2010

One Year

One year ago today, hubs and I received the most devastating, most shocking and most unexpected news of our lives. It took me several days to process it. I wasn't able to share much with my readers at the time. Almost a week after receiving the news, I wrote this post. I remember how very difficult it was to write because putting it all out here on the blog made it so real, so definite.

This blog is about my family, most especially my children. And it was so much fun to write updates about being pregnant with Chase, how big he was getting, all the crazy symptoms I was dealing with, etc. But my world turned upside-down on June 16, 2009.

I had never heard of Hypoplastic Left Heart Syndrome. Honestly, I wasn't even sure what a "CHD" was or how common they were or how often they occurred or how they were treated or... Seriously, I didn't know a thing and felt like I was blindsided by a mack truck.

Suddenly my life changed. My joy was harder to find. My faith was lurking somewhere in the background, seemingly too timid and unprepared to handle the drastic upheaval resulting from this news. My strength seemed to disappear. My thoughts were overwhelming as I reeled with the fact that my newborn son may not survive long enough to come home with us from the hospital. My fears multiplied as I wondered if he'd ever see kindergarten. My hope seemed to drown in the research and survival statistics I poured over. My life would never be the same.

Over the next few months, I felt God speaking to me. I know He had been there all along, and was holding me up as we received Chase's diagnosis. I know He was the One that allowed me to somehow drive home safely following that appointment as the tears were flowing uncontrollably and the sobs caused my body to shake from head to toe. But I finally started to get to a point of accepting this, this unbelievable, crippling fate, this was His will for my life, for my son's life. And all I could do was turn to Him to see us through.

I remembered how He gave me an unimaginable peace when we first learned we were pregnant with Chase. We had been "cautiously optimistic" during my pregnancy with LO because we experienced two miscarriages before her, and we were afraid it would happen again. But that peace! Oh, that peace. It consumed me early on and the fears of miscarriage essentially disappeared. Life was good! And then June 16, 2009 happened.

It took time, but as I was saying, I started to sense that peace again. It was there all along, of course, but I was in no shape to receive it, much less believe it. But God was slowly working on my heart. He was helping me to accept His will and before I knew it, I became "that" mom. The one who was dedicated to learning everything I could about HLHS. The one who was committed to putting all the plans in place and figuring out every last detail to ensure my son's safety and absolute best chance at life when he was born. The one who refused to feel sorry for myself (or my son) and chose instead to fight with everything I had in me.

Now here it is, a year later. And what can I say about where I am now compared with where I was this time last year? There are no words! God has truly blessed us with a miracle that we can see every day with our very own eyes. I wish I would've known at that time that we would make it this long, although my hope and prayer (as is every mom's) is that my son will live a long, full life. But I don't know what God has in store for us. I don't know His plan for Chase's life. This new world I've been immersed into is one where each and every day, each and every moment, is treasured. Each smile is captured in my mind. Each laugh is etched in my permanent memory. We aren't promised tomorrow. None of us are. None of our children are. This is all too well the reality of heart moms, but it holds true for those with healthy children as well. Never take a single moment with your children for granted.

I'm so grateful. I'm so thankful that God chose us to be Chase's parents. I'm so honored to be his mommy. I'm so blessed that God has chosen to give almost 8 months with our son (and I'll keep praying daily for more)! I cannot get enough of this sweet boy! I know we've got at least one more heart surgery ahead of us, and I know that Chase's future is uncertain, and I know things can be great and then drastically change for the worse in any given moment, but I'm going to continue to rest in the Lord, trust in Him and know that He will bring His peace in the midst of any storm that lay ahead.

Thank you, Lord, for my little miracle, Chase!

And really, how can you not love this boy to pieces?



Friday, June 11, 2010

Yay for Bodie! (sort of)

Check out the latest post on Bodie's blog... He has a bacterial infection that is being treated and he seems to be doing better already! Please keep this little guy in your prayers. You can see a list of his specific prayer needs on his blog.

Thursday, June 10, 2010

Please Pray for Bodie!

Please pray for little Bodie, another little guy with HLHS. I have been following his blog for a while and he is in serious need of prayer! He's just shy of 4 months old and already had his Norwood. If I remember correctly, he was in the hospital for a while after his surgery, then finally got to go home, but was only there for a DAY before he had to go back to the hospital, which is where he's been since. He had a really rough time with a horrible infection (c-diff, for those of you who know medical stuff) but was making a wonderful recovery! In fact, he just moved to the step-down unit two days ago with all signs pointing towards HOME in the very near future! Unfortunately, he started decompensating and was moved back to the CTICU (similar to the PCICU at MUSC) last night and had to be intubated again. Please please please pray that they figure out what caused this and can quickly correct it so he can get back on track! He's such a precious little guy and desperately needs a touch of healing from God.

Here's an adorable pic of little Bodie from Tuesday when he was able to move to the step-down floor. Such a cutie! Please pray for him!

Wednesday, June 9, 2010

How?

  • How is it possible a laundry room becomes the dumping ground for all things non-laundry related?
  • How do you teach an almost 3-year-old to listen?
  • How are couples with children able to act like a couple?
  • How come Chase's bedroom (which he is not currently using) constantly becomes a spare room/dumping ground to the point at which you cannot navigate through the room without tripping or hurting yourself?
  • How do you prepare for your first 5k run? UPDATE: I neglected to mention my first 5k is in 9 days. Ack!
  • How do you get your HDTV sound to come through your Blu-Ray surround sound system when watching cable TV?
  • How do all those crumbs end up under the kitchen table?
  • How can single-income families afford to send their children to private schools?
  • How do you decide between an at-home birthday party (for the 3rd year in a row) vs. one at Chuck E. Cheese's for your 3-year-old?
  • How do you handle disagreements in your marriage?
  • How do you keep lettuce from turning brown?
  • How does the white kitchen sink that was bleached and scrubbed end up dingy and dirty with smooshed banana crusting over in the corner?
  • How can you upgrade to iPhone 4 if it's only been 9 months since you purchased your iPhone 3GS?
  • How much stuff should you teach your 3-year-old before she begins preschool in the fall?
  • How can you take two small children to the pool by yourself without compromising their safety?
  • How do you know what happiness looks like?

Sunday, June 6, 2010

A Bunch of Random Updates

First of all, I just want to say "Praise the Lord!" for His amazing work in sweet Brandt's life! I don't think his website is quite as up-to-date as his mommy's Facebook posts, but that sweet boy is doing AMAZING with his recovery from his Norwood surgery. He will probably head up to 7C (step-down unit) tomorrow or Tuesday!!! Just to remind you, he just had his surgery last Tuesday! Can you believe that?! What a sweet little miracle! Way to go, Brandt!!!

So to update on things here with the fam, life is good! LO and I went to the beach for a quick day trip on Friday, while the little man stayed home with daddy. We had a great time at the beach and LO behaved surprisingly well considering she didn't have a nap all day! It was a long day, but oh so much fun! Here are a few of my favorite pics from the day:





Today we were SO excited because we were FINALLY able to take Chase to church for the first time! That's right! Our little family of four made our first appearance all together at church! After church we decided on an impromptu lunch out with one of our favorite families. It was such a wonderful welcome back to "real life" or "normalcy" or "whatever you want to call it!" I got to just be a mom, with two kids, and a husband, who go to church together, and grab lunch with friends, and not worry about all the details. In fact, we didn't even have any food for either of the kids! We almost always bring a PB&J for LO when we plan on dining out (she is hands-down the most pickiest eater on the entire planet!), and of course bring some baby food for Chase. We ended up with a quick stop at Walmart for some baby food and baby spoons before heading to McAlister's (yum!) for lunch! How fun to finally just be a normal family again!!!

Chase is doing simply fantastic! It's so hard to believe we still have another month to go before his next cardiology appointment! It's already been over a month since we've seen Dr. Horne -- crazy!!! We have ZERO doctor appointments for the entire month of June. What a concept! Chase is doing super with eating (no surprise). He's still taking bottles of formula (although not nearly as many ounces per day as I think he's supposed to, but I try not to worry) and is also all about some "real" food! He loves the fruits and vegetables I made for him (very Stage 1-ish), and I've started giving him some store-bought Stage 2 foods. GASP! I know, I know... I'm not making ALL of his food. Honestly, I just can't find the time in the day to do it! Plus there is such a variety of options out there and I really want him to have lots of different flavors to experience, so it's just easier this way. I've also given him some Gerber Puffs and it's so cute watch him try to rake them up on his high chair tray and get them into his mouth. He's still too young to have a good pincer grasp, but fisting it seems to work for him, most of the time.

We have an "Early Interventionist" or EI coming to the house every other week to work with Chase and give me some exercises to do with him to help him meet his milestones. He still hasn't been sitting up independently, so at her first visit, she showed me some ways to help him work on this. After working with him for just a week, I was already seeing a big improvement. When she came over last week, she was amazed at the progress he'd made in the 2 weeks since her first visit! He's sitting up independently!!! He did NOT enjoy working on this initially, but I just kept at it several times a day for short periods of time and he became more and more comfortable with it. In fact, now he prefers sitting up to play with his toys instead of laying on his tummy or back! Unfortunately, he's not so great at catching himself when sitting up so I still have to sit with him to help out. We'll be working on his arm strength and core stability over the next 2 weeks, so hopefully he'll make some crazy awesome improvements during that time!

Oh, in addition to trying to get him to feed himself puffs, I've also been giving him a sippy cup for the past 3 or 4 weeks. He's been doing really well with it! He definitely likes to chew on it, but he can already drink from it, too! Here's a randomly adorable smiley pic of him in his high chair:


We're having all kinds of challenges with LO these days. It boils down to one simple concept: LISTENING. Apparently she's suddenly forgotten how that is supposed to work! She's been driving hubs and I C-R-A-Z-Y!!! Now I know what you're probably thinking... she's almost 3 and this behavior just comes with the territory. But I'm not buying it!!! I don't know what to do! We literally took ALL of her toys out of her room and the play area and stowed them in Chase's room where she can't get to them. She didn't even care! I'm talking puzzles, play-doh, blocks, dress-up clothes, her kitchen, stuffed animals... EVERYTHING but her books! She doesn't care! I also bought a Responsibility Chart thinking that if she can accomplish things throughout the day (getting dressed, brushing her teeth, listening, etc.) then we would reward her and encourage her good behavior! This didn't work, either! We then tried limiting her TV watching to just 30 minutes in the morning when she gets up, and 30 minutes before bed at night. Did that work? Notsomuch. We even went so far as to take her precious teddy away (she's slept with teddy basically since she was born!) and guess what?! She didn't care!!! Oh my word, I am about at the end of my rope! I feel like I can't take her anywhere fun or buy her anything fun or do anything fun with her because her behavior doesn't warrant such things, but at the same time, I can't just keep her locked up in her room all day to stare at the walls! Wow. I sure hope we figure this out soon. I'm all open for suggestions, too, by the way... ;)

Every once in a while, she behaves well enough that we let her play with her brother. That sounds bad, doesn't it? See, usually she's completely wired and squealing and jumping all over the place around him and just won't calm down, so we don't let her around him when he's playing on the floor. But when she chills out for just a quick second, I'm lucky enough to get a cute little pic like this:


Well I guess these random updates are turning into one heck of a long post, so I'll end with this: a video clip of Chase I took tonight after dinner. He was in rare form, people! It was so cute and hilarious! He definitely loves to hear himself "talk!" Just make sure your volume is turned down... he's loud!

Tuesday, June 1, 2010

Pray for Brandt

Please pray for precious, adorable little Brandt. He's one-week old today and is currently in surgery at MUSC for his Norwood procedure with Dr. Bradley. Brandt has the same special heart as Chase, Hypoplastic Left Heart Syndrome (HLHS). I had the privilege of meeting his mommy, Lindy, before they headed to Charleston for Brandt's birth.

You can follow Brandt's blog to check in on him and see some pics of this incredibly handsome little man. Seems the PCICU has already nicknamed him "Super B" as he stabilized very well after birth and was able to camp out for the week before his surgery without requiring intubation or any other procedures outside of the "norm" for a "classic" HLHS case.

Please continue to pray for Brandt today and especially over the next 3 days as his little body recovers from open-heart surgery and adapts to his new circulation. Also pray for Dr. Bradley as he performs Brandt's surgery, and of course, pray for mommy and daddy as they wait. I remember all too well what it was like in that PCICU waiting room all day, anxiously waiting for that pager to beep with an update on the surgery, praying continuously throughout the day for God's hand of protection on that precious child. Please hold them all close today and in the days to come!

I couldn't help but share this adorable pic from Lindy's blog... don't ya just wanna squeeze him tight?? Such a cutie!!!