Congenital Heart Defect Awareness Week!

Congenital Heart Defect Awareness Week is February 7th through 14th. Won't you help raise awareness? Check out the two startling statistics below that I'm guessing most folks weren't aware of:

♥ Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD. Congenital heart defects are the #1 cause of birth defect related deaths.
♥ In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined.

Did you have any idea? Pretty astounding, right? Please help spread the word about congenital heart defects!

Stay tuned for more CHD Awareness posts throughout this week! And can I just say THANK YOU to the amazing family, friends, church family, heart moms and online friends I haven't even met who have followed our journey with Chase's special heart and have supported us and prayed for us throughout the past several years. I'm very blessed by your love and support!

This is the face of CHDs. My son is 1 in 100.

Prayers Needed

Please pray for this beautiful young lady who is undergoing a heart transplant at MUSC this morning. She was born with a heart defect similar to Chase's and has lived the past 17 years with half a functioning heart. Pray for her surgery, recovery and the family who made the sacrifice that is giving her a whole heart.

We love you, Taylor!!!

Two Months

It's been two months today since the world lost a sweet, precious little boy named Travis. My heart continues to ache for his family, for the devastating loss they've experienced and for their struggle to make it through each day without their smiley little Trav. I hate this hopeless feeling where you want so very much to help someone who is struggling, yet truly there is nothing you can do to bring back the joy and happiness that was once there. I want to just send hugs to Nicole and Roger every moment of every day. I want them to know that little Travis made a BIG impact on the world and he will NEVER be forgotten.

Each day, when I look at my sweet Chase, I can't help but think of Travis. They were only 3 days apart so right now, Travis should be doing a lot of the same things as Chase. My heart aches that Nicole and Roger aren't able to experience life with Travis.

I feel powerless to help the DiCarlo family, other than continue to keep them in my daily thoughts and prayers. But I figured I'd write up this post and provide a link to their blog so you can send them a little note to let them know you're thinking about them and praying for them, too. Obviously there's nothing anyone can do this side of heaven to heal their broken hearts, but knowing there is a huge community of friends, family and even strangers who are lifting them to the Lord in prayer will hopefully remind them that they are not alone in their pain.

Please take a minute to stop by the Team Travis blog and let Nicole and Roger know you are thinking of them during such an unimaginably painful time.

Thank you.

Beautiful Travis

Bringing Hope to Broken Hearts

Sisters by Heart is continuing its mission to inspire and support newly-diagnosed HLHS families.

With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.

Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.

And the Winner Is . . .

...Stephanie!!!

Stephanie said, "I would love to have the crazy flower print as my messenger bag! I am sure everyone would love it on my unit! I work on the Heart unit at Children's Hospital in DC!"

Gotta admit I love the randomness yet NOT randomness of this drawing. I mean, of course I used random.org and it was a COMPLETELY random winner selected. But how NOT random was it that the winner works in a Children's Hospital heart unit!? Yay! I definitely feel like I'm spreading a little bit of Chase love to the Children's Hospital in DC! :)

Congratulations, Stephanie! I'll get started on your crazy flower messenger tote today! Please send me your name and mailing address via email to mom2lo@charter.net. I'm so excited and I totally hope you'll love your new messenger tote!

Thank you to everyone who participated in my very first blog giveaway ever! This was so much fun and I look forward to doing another one again soon!

Pray for Aly Jean . . . Update

UPDATE: Aly's Fontan has been rescheduled to Monday, March 28th. Her surgeon, Dr. Bove, was needed on an emergency case and Aly's surgery was bumped. Please continue to pray for Jenny and Jeremy as they have to deal with the 2 hour drive home followed by another week and a half of anxious waiting to get this surgery behind them. I can only imagine how frustrating and disappointing it must be to have everything planned out to have as little impact on sweet Aly as possible only to have the rug pulled out from under them. Please keep them in your thoughts and prayers over the next few weeks.


Please pray for adorable little Aly Jean Lincoln as she undergoes her Fontan surgery at U of M today. Dr. Bove is an amazing surgeon, so not only is she in good hands physically, we all know she's being held in the Ultimate Healer's hands as well.

Please take a few minutes to pray for an uneventful surgery and a speedy recovery for Aly. Her mom, Jenny, is one of my beloved Sisters by Heart and I know how difficult it is to hand a precious child over for surgery.

You can follow Aly's story on her blog, http://www.alyjeansspecialheart.com.



Posted from my iPhone

A Recap: Part V

Okay, so if you're still with me, and have read Part I, Part II, Part III and Part IV, I'm gonna tell you that this will be the final in this series recapping my weekend in California with my fellow heart sisters. I know, this has turned out to be a lot more blogging and lot more reading than I had intended and I'm sorry!

This part is just about my flight home. You'll probably recall that I'm not a flyer. Not a fan. Don't like it. But for obvious reasons, this trip was way too important for me to miss. The flights from home to LA were okay, minus the checked baggage fiasco at LAX. Imagine the fun for me that started Monday morning when I logged into my Delta account to see that my 10:35am flight had been delayed until 12:25pm. NOT cool. This would cause me to miss my connecting flight in Atlanta. I started to stress, but then I got a call from Delta. It was an automated message telling me my flight had been delayed, but they had gone ahead and "protected me" on a different flight out of LAX with a later connecting flight out of Atlanta.

Wow!

I was surprised and impressed! All I needed to do was print out my new boarding passes! The only real downside was that I'd get home an hour or so later than I had planned, which would have been after both kids were in bed. But my flight out of LA was supposed to leave around 11:25am (this is why I should've written this post sooner... I can't remember all of the details a week later!). So I got to the airport nice and early and got to my gate with a couple hours to spare. It was perfect!

Except there was NO free wireless Internet available.

Are you kidding me? LAX? What are you thinking?

I was bummed about this, but killed some time spending way too much money in the gift shop buying magazines, snacks and gifts for the kids. Before I knew it, it was time to board the plane. I was just two rows from first class, sandwiched in the middle of the 3-seat middle section (Best. Seat. Ever... NOT.). The captain had already been on once telling us we had a 20 minute delay before we could leave the gate... lovely. I kept watching the clock to make sure I'd make my connection in Atlanta.

The last few people were boarding the plane, and there wasn't much room in the overhead compartments. A middle-aged couple was desperately trying to find room in the overhead bins on my row, and started looking at moving this bag to that bin, then turning it this way, then putting their bag in the other bin, etc. I won't lie, there was a lot of finagling going on with the bags.

Enter: Horribly Awful Obnoxious Girl (HAOG).

She was dressed in black, probably mid-20s, almost-shaved head and earrings and tattoos. There was a certain "something" about her. She was waiting behind middle-aged bag couple and was obviously growing irritated with the wait to get past them so she could get to her seat. And note, she was carrying a VERY large duffel bag and another rather large personal item (purse maybe?). Finally, she'd had enough.

In a very rude and obnoxious tone, she told the couple to move aside so other people could get by.

The husband mentioned the overhead bins were full and asked where she planned to put her bags?

She responded, "Up your a$$."

Yes, obviously not the most polite, child-friendly language. I was shocked and immediately looked away and pretended to read all about Charlie Sheen's latest antics in my People magazine (yawn).

The wife muttered a comment about how rude and offensive that comment was. But HAOG wasn't done yet.

She made another comment about how much he'd like it, that he enjoys that kind of thing.

Ohmygoodness.

I couldn't believe the nerve of this girl!

The couple eventually got out of her way to let her pass. However, the flight attendant told her that her bag would need to be checked at the gate because there was no room in the overhead bin.

She muttered some profanities and kept walking towards the rear of the plane.

The flight attendant again called to her and told her she needed to check her bag.

HAOG dropped her large duffel bag in the aisle and told the flight attendant to come and get it herself.

I was about ready to duck under my seat and cower in fear over what might happen next.

Eventually they were able to get the girl off the plane to check her bag.

Ten minutes go by.

Another ten minutes go by.

The captain finally came on and apologized to the passengers for the delay, but that we had a security issue that needed to be resolved. They were looking for the passenger's bag under the plane and once it was located, we would be able to get moving.

I looked at the time. It was about 12:20. My original flight, which was delayed until 12:25, would most likely take off BEFORE the flight I was on. I was not a happy camper.

We finally got off the ground what seemed like FOREVER later. I can imagine the HAOG being completely indifferent and refusing to tell the security folks which bag was hers, etc., to where they had baggage guys climbing all over the luggage looking for her exact tag. What a mess!

Luckily, this plane was a massive 777 (ack!) and made some sweet time flying from LAX to ATL.

The ginormous plane from LAX to ATL.

My flight to LAX was almost 5 hours. The flight from LAX? Just over 3 hours. It was bookin' it and I was so glad! I was hopeful I could make my original flight from ATL to home so I could return at the same time I had originally planned.

We arrived around 7:20pm and my original scheduled flight was at 7:25pm. I knew there was no way I'd make it. But I was still determined to try. I got off the flight and ran about 1,200 miles to the gate where I thought the flight was scheduled to depart from. There was still a plane at the gate, but there were no Delta reps at the counter. I ran to another gate across the aisle and inquired about the flight.

That's when they told me that wasn't the flight I thought it was. Apparently my original 7:25pm flight out of Atlanta was at another gate... about another 1,200 miles away.

I was disappointed to say the least, until the gate reps told me that the flight had been delayed until 7:50pm. I could totally make that! And it would get me home earlier than the 8:30pm flight they had booked me on! The reps were going to add me to the 7:50pm flight and my job was to run my buns off to get to the gate in time. Easier said than done.

I learned exactly how out of shape I am at my old age. I was dying. DYING I say!!!

Luckily, I made it to the gate in time and confirmed I was added to the flight and received my new boarding pass. There was about a 15 minute wait before boarding began, and I was beyond thrilled to make that earlier flight after all. I got home around 8:30pm, just as I had planned all along.

It was wonderful to get home. It was wonderful to give my girl some hugs and kisses that night, and to see my sweet boy the following morning. But most of all, it was wonderful to have a darling husband who was willing to let me go for 3 days, was willing to fly solo with our two little ones, and willing to support me in doing something I absolutely felt called to do. What an amazing trip with amazing friends and an amazing celebration of sweet little Travis.

This is totally unrelated to today's recap (it probably should have been in Part II or III), but I couldn't NOT share a few pics I captured of little Bodie while in LA...

Going to town on some homemade guacamole. And yes, that is paint on his face (in case you were wondering).

The little "princess" sporting a tiara, complements of his daddy. So very cute!!

My favorite photo of the entire weekend.
No, he didn't down the Bud Light but the photo (and the expression on his face!) sure makes it look like he did!

Special THANK YOU to Amy for letting me crash with her family during my stay in Los Angeles. It was such an amazing trip and I was so blessed to meet so many of my fellow heart sisters!!!

A Recap: Part IV

Sunday afternoon, it was time for us to make the 2 hour drive from LA to San Diego for the purpose of which we were all in California: to attend Travis' Celebration of Life service. All of us knew that was where we were going and we all knew why we were going, but none of us wanted to dwell on it or spend too much time thinking about it beforehand. As you can imagine, as we pulled into the parking lot at that beautiful park on that amazingly sunny Sunday afternoon, it hit us all like a ton of bricks.

We proceeded to head towards the gathering place and had the joy and privilege of meeting Nicole and Roger for the first time. I'm not sure Nicole registered who exactly we were: me from SC, Jenny from MI, Stacey from AZ and of course, Amy and Sara from LA (who she had already met before).

The service was in a word: AMAZING. Such beautiful stories were shared about such a beautiful, vibrant, funny and adorable little angel who was taken from this world oh so very soon. It was obvious the love that was felt for Travis by everyone who was there, including people (like myself) who had never had the privilege of meeting the little guy in person! I was amazed that Travis' surgeon not only attended the Celebration, but also shared a few words about that fateful day when Travis went home to be with Jesus. It was heartbreaking to feel those feelings about such a devastating loss, and to know that I could just as easily be in Nicole and Rogers' shoes in the blink of an eye. Such is the life with a heart baby. There are no guarantees, and it truly is more than likely that we as parents will outlive our special children. It's a devastating and morbid thought to ponder but sadly, it's our reality. And it hurts more than anyone can understand.

After the beautiful service, we headed outside for a balloon release.

Travis' Celebration of Life service. This place was packed, folks, with standing room only
What an amazing testament to an amazing little man!

Bodie "represented" all of our little heart kiddos by kissing and releasing a balloon for Travis.

Letting the balloon go!

Bye-bye, balloon!

Fly high, balloons! Tell that sweet boy in Heaven how much his family and friends miss his beautiful smile!

The balloon release was followed by a delicious lunch provided by some dear friends of the family. It was so wonderful to spend time together with these amazing people, enjoying a yummy meal on the comfort of a blanket spread out in the park on a sunny afternoon, sharing and talking about the sweet life of Travis DiCarlo. It was difficult to say our good-byes to Nicole, knowing we all wished we could spend so much more time with her, and not knowing how long it would be before we had another chance to get together again (for a more enjoyable purpose than saying goodbye to one of our own). We hugged tightly and headed on our way back to LA. The sky grew cloudy and overcast as we left San Diego, and I had no doubt that Travis had a word with the Big Guy Himself and asked him to keep the sun shining over his loved ones in San Diego.

Travis, you will forever be in our hearts and minds and your family will always be lifted up in prayer as they learn how to navigate this world without you. You were a blessing and an amazing fighter and will be truly missed by all of us who were touched by your life and smile.

A Recap: Part III

It was so sweet of Amy to want to take Jenny and I on a California tourist trip to Venice Beach. Unfortunately, she confessed she hadn't been there in about 5 years.

Uh, oh.

It was, um... different. We easily found a parking space, but not-so-easily paid for what we guessed to be 2 hours on the parking meter. But that would be plenty of time, since we were just there to grab a bite to eat for lunch and enjoy the warm California sunshine. We opted not to eat at any of the 13 restaurants near our parking spot, and instead, were promised by sweet Amy that there was a slew of dining options just down the beach. So we started walking. And walking. And walking some more. And things started to get weird. And weirder. And weirder some more. Let's just say there are some images burned into my retina that I will never be able to remove. Imagine a speedo. Nothing but a speedo. A gold, shiny, metallic speedo. On a very tan man. A very wrinkly, tan man. On roller skates. In his 60s. Yes, friends. It's true.

And it got more interesting. Medical marijuana. Ever heard of it? Venice Beach has! Apparently there are "medical professionals" donned in their best beachwear every 10 yards claiming to be the source of your best deal on medical marijuana. It's true!

We kept walking (albeit quicker and with more purpose and less wandering eyes) but seemed to only happen upon fast-food type joints with no dining area. So we kept walking. And walking some more.

Keep in mind: Amy has a medical boot on one foot to help her broken foot heal and was told to limit her time on her feet. Jenny and I were just along for the ride, but both of us probably with an increasingly hungry appetite. And both of us fearing slightly for our lives considering the crowd we found ourselves in.

And we kept walking. And walking. And walking some more.

Finally, after about 30 minutes or so, we found a little deli place that we agreed would be a good place to eat and headed in.

I'm gonna make a long, uninteresting story short. I ordered the BBQ sandwich plate with fries and no cole slaw. The waitress mentioned their cole slaw was really good, but I said no thanks, I'm just not a fan of the stuff. Truly, I hate cole slaw. I mentioned it was the mayonnaise part that I didn't like most and she said their cole slaw was "creamy." Oh, okay. That makes everything different, right? So I figured, why not? I'm on a sort of "vacation" for the day, so why not live on the edge and give it a try? I asked her to put it on the side (indicating my lack of faith I'd actually like it).

When she bright it out, it looked like every other side of cole slaw I'd ever seen.

I waited 'til the end of lunch before giving it a teeny, tiny try. Instinctively, I smelled it first. Wouldn't you?

It smelled like every other side of cole slaw.

I went for it.

It was nasty.

Just like I'd imagined every other side of cole slaw I'd ever seen would have been nasty.

But I gave myself kudos anyway for being willing to try something new. Yay!

Now it was time to hike the 1,200 miles back to to car. It was a scary little journey, seeing most of what we saw on the way down, including Captain Speedo. Bi we managed to make it to the car only to find--yep!--a parking ticket. Poor Amy. I never really understood the problem or what we did wrong, other than taking longer than expected to walk to lunch and back.

Oh, well.

Next up, in Part IV, apparently, I'll share with you about our evening together with FIVE of us Sisters by Heart meeting each other for the first time. It was, in a word, amazing! I might try to speed it all up a bit with shorter summaries because I've got to cover a very special day on Sunday at Travis' Celebration of Life service, and of course, my tumultuous return flights home on Monday.

Stay tuned!!


Posted from my iPhone.

A Recap: Part II

After putting the kids to bed Friday night, I finished up the last of my packing and prepared for an early morning. My flight was leaving at 6:20 AM so I had my alarm set for 4:15 AM (i.e. the middle of the night as far as I'm concerned). Saturday morning was smooth and I was easily able to get through Airport Security and to the gate to wait on my flight. I was still very nervous about flying, but because God had made it very clear to me that this was in fact what He wanted me to do, I had an overwhelming peace that calmed my nerves.

As I boarded the flight, they told me I couldn't carry on my small rolling suitcase and made me check it at the gate. I wasn't surprised. Hubs told me to expect that since I was flying on a smaller plane. The flight into Atlanta was delayed slightly, and with only a scheduled 55 minute layover, which turned into more like a 30 minute layover, I was waiting impatiently at the gate to retrieve my suitcase, and my butt was bookin' it to the next gate (on the other side of creation) to make my connecting flight to LAX. I hurried like a crazy person, didn't have time to stop for a potty break or to pick up some trashy celebrity magazines, and arrived at the gate just in time for the final boarding call.

Whew!

Not as relaxing as I had hoped, but at least I made it on the flight! And I was a bit surprised when they made me check my suitcase at the gate again, but I wasn't too worried since I'd get it back when I deplaned. It was lovely being sandwiched between two people for this 5 hour flight. At least the plane had TV screens in each headrest, so I previewed a few movies and was going to make the $6 commitment to help pass the time. Unfortunately, they needed to "reboot" the lousy Linux system and once they did, my TV never came back up. Awesome. But it wasn't a big deal. They at least had WiFi available on the plane, so I was able to chat with hubs on MSN throughout the flight on my iPhone. It was nice having him "with me" during that long flight.

I arrived in LAX essentially on time and headed off the plane. I wondered why I didn't see any checked baggage appearing at the gate. I asked a Delta guy and he told me the checked bags would be at baggage claim.

WHAT!?

Let me remind you guys... I don't fly. I handed my suitcase over at the gate and expected to pick it up at the gate, just as on my flight to Atlanta. But NO. I had to go to baggage claim with the rest of the 300+ people on the flight and wait indefinitely for them to send my checked bag down the carousel. Seriously. Why did I bother elimination 1,200 things from my packing list so it could all fit in my small carry-on so I could avoid lost luggage and waiting on baggage when apparently the airline was gonna force me to go through all of that anyway? As you can imagine, I was quite irritated. Compound that with the fact that I was talking with heart mama Jenny, who was picking me up at the airport, as I headed to baggage claim, only to have my call dropped and suddenly have NO SERVICE. I tried going outside, pacing around the baggage claim area, going back up the escalator to "higher ground" -- all to no avail. So here I was, no bag, no cell phone, no way of telling my ride I had to wait on my bag instead of meet her out front as expected.

((major sigh))

After what seemed like FOREVER, my freshly dented/tweaked bag finally made its way to the carousel and I was finally able to officially begin my California trip. I headed outside, was miraculously able to get in touch with Jenny, and jumped in the car with her. Keep in mind, this is someone I've never once met in real life. I know her from her blog and from Facebook and from our Sisters by Heart group, but for all intents and purposes, she was a random stranger in a rental car and I just jumped right in with her! Of course I knew her well enough to know I was fine, and honestly, it was amazing how well we clicked as we drove from the airport to heart mama Amy's house. And meeting Amy? Just as easy and carefree and natural as catching up with a friend you haven't seen in years! These ladies are BEYOND awesome. Seriously.

Sorry to cut this one short, but my boy is up and ready for breakfast!

Next up? Our trip to Venice Beach. Our unexpectedly costly, eye-scarring trip to Venice Beach, complete with an impromptu workout and "creamy" cole slaw!  :)

Here's a sneak peak. Of Venice Beach. Not the cole slaw...

A Recap: Part I

Whew! What a crazy, whirlwind weekend! So much to share and, quite literally, so little time to do so (we're getting to the end of today's nap time and there are 1,200 other things on my To Do List!). So I'll just start sharing and we'll see where it goes, mkay? (Note: I've been writing for far too long now and realize I'm not going to get to all of the weekend in one recap, so this is now deemed "Part I" of an unknown number of parts...)

My heart was shattered at the loss of little Travis DiCarlo. There was nothing more I wanted than to be there with his family and friends to celebrate his life on Sunday, March 6th. But the celebration was in their hometown of San Diego. As in, California. Whoa. That's a long drive from South Carolina! See, I'm not a flyer. I don't know why, other than the constant fear of my flight plummeting to the ground. Ya, I guess really it's just that. So not a flyer.

But my heart ached to be with Nicole and throw my arms around her. So I started to think about it.

I emailed super-awesome heart mom to Bodie, Amy, who lives in LA and was obviously planning to attend the celebration, and asked for her thoughts on where to fly into, where to stay, etc. (I guess if you live anywhere in California, you automatically know everything about all of California). Well imagine my surprise when darling Amy suggested I fly into LAX and stay with her family and ride to the celebration service with her! Whaa?? She's so wonderful, right? So it helped that I no longer had to concern myself with hotels or rental cars. It made me want to go even more, now for the added bonus of staying with one of my very own Sisters by Heart. Not to mention the fact that The Amazing Sara, another SBH heart mom to Townes, also lives in LA less than 10 minutes from Amy. Visiting with two SBH heart moms? I was really feeling led to go now!

But I don't fly. I just don't.

But I figured I'd email wonderful SBH heart mom to Aly, Jenny, and tell her I was considering the idea of maybe going, just to see if maybe--just maybe--she'd jump on board, too. I would wait to hear back from her.

Saturday night, a week before Travis' celebration service, I sat on the couch next to hubs and had him walk me through the Delta website to pick flights, etc. I had entered my credit card info and just had to click "Purchase." But the fear. OH, the durn fear! It kept me from following through with the plan. Ugh! My heart was aching and torn! I wanted to be there for Trav's service. I wanted to finally meet some of my SBH heart moms in person. I wanted to get past that fear!

But I couldn't.

The next morning, I was sitting at the piano, waiting for church to begin. Imagine my surprise when a portion of the Call to Worship that was read as the service was starting essentially said, and I'm paraphrasing here, but, "Hey, dummie! Why in the world are you worried about the possibility of your flight plummeting to the earth a week from now?! Don't you know today has enough to worry about? Let God handle what lies ahead -- not you!"

Wow.

It spoke to me, as you might imagine.

Our pastor spoke on Matthew 6:24:

"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. (emphasis mine) God will help you deal with whatever hard things come up when the time comes.

Wow.

How about that? It seemed to me that God was telling me to go. He was telling me not to worry about the flight. He was telling me that He would take care of me.

I left that service knowing what I needed to do.

And yet God wasn't done confirming in my heart that this trip was His will for me. My heart mom friend Jenny? The one I had emailed? She wrote back that afternoon saying, essentially, she too had wanted to be there for Trav's service, but it was only a sort of "pipe dream" until she saw my email. Knowing that I was also considering the trip confirmed for her that she needed to go as well.

Isn't God amazing?

He calmed my heart. He helped me over a major fear. He took my worries and replaced them with confidence, assurance and peace.

I booked my flights that Sunday afternoon and started planning to be away from my husband and kids for the FIRST TIME for three full days.

The night before I would leave, I tucked my kids into bed and kissed them for the last time knowing it would be three full days before having the chance to do so again. I read to LO the book she picked out, which happened to be the story of Noah's Ark. When I was done with the last page, I closed the book, set it down, and proceeded to tell her it was time to pray. For some unknown reason, she absolutely insisted that I read what was written on the back of the book. I told her it was nothing and we needed to say our prayers. She insisted again. I begrudgingly picked the book up and began to read. It was the last two lines that got me...

...learn that God protects those who love him--no matter how scary the ride!

Part II coming soon!

Can You Help?

I need help. I need advice. I need suggestions or anything you can come up with.

My heart is hurting. I am grieving. I am at a loss.

My fellow readers and certainly the heart community know that the world lost a beautiful smile coupled with a pair of the brightest eyes ever known to man 10 days ago. Travis Gary DiCarlo. He was Chase's heart buddy. His mom is my heart mom friend. I've never met either of them, but my heart is hurting nonetheless.

Obviously this is a devastating situation. But the hardest part for me is to know my dear heart mom friend is suffering like never before. She's feeling an unimaginable loss that cannot be put into words. And I'm on the other side of the country with no idea how to possibly provide comfort to her. It hurts like crazy that Travis is in heaven, but it also hurts to imagine the pain Nicole is feeling and to be powerless to support her through this tragedy.

Can you help? Help me help Nicole! I just want to be a good friend and I want her to know that her loss is our loss, and we love her and care for her and are lifting her up in prayer.

So besides the obvious (praying like crazy!), can you think of anything I can do to help her?

Please?

A Tribute to Travis . . .

My heart has been heavy since the loss of sweet little Travis, and I knew there wasn't anything I could do for his family besides pray for God's peace, healing and comfort during such a devastating time. After some thought, I realized it would do me good (and hopefully others as well) to see a glimpse into the all-too-brief life of smiley little Travis DiCarlo. So I put together a short tribute video that has made me laugh, cry and praise God for the blessing of "knowing" Travis, and chose to post it today, on what would have been his 16-month birthday. I so wish I could've seen his smile in person... it's absolutely contagious in these photos! He is so very missed even by those of us who never had the privilege and blessing to meet him in person!

I chose a beautiful song by Christian recording artist (and former American Idol contestant) Mandisa titled, "You Wouldn't Cry." I've posted the lyrics below the video. I pray this tribute to Travis blesses you as it has me.

Thoughts and prayers continue to be lifted up on behalf of Nicole and Roger DiCarlo and their entire family.

YOU WOULDN’T CRY (Andrew's Song)

Mandisa

All you saw was pain

All you saw was rain

But you should see me now

Moments filled with tears

Lasted all those years

Disappeared some how

You never said goodbye

On your knees you cry

You’re still asking why

But blue has never been bluer

True has never been truer

Honey never tasted so sweet

There’s a song in the breeze

A million voices in praise

A rose has never smelled redder

The sun has never been brighter

If I could find the right words to say

If you could look at my face

If you could just see this place

You wouldn’t cry for me today

What you think you see

Isn’t really me

I’m already home

You’ve got to lay it down

‘Cause Jesus holds me now

And I am not alone

Your faith is wearing thin

But I am watching Him

And He is holding you too

And blue has never been bluer

True has never been truer

Honey never tasted so sweet

There’s a song in the breeze

A million voices in praise

A rose has never smelled redder

The sun has never been brighter

If I could find the right words to say

If you could look at my face

If you could just see this place

You wouldn’t cry for me today

You wouldn’t cry for me today

Oh what may seem like years

Will just be a moment

Oh the day will come

When I’ll show you where you’re going

I can’t wait to show you

And blue has never been bluer

True has never been truer

Honey never tasted so sweet

There’s a song in the breeze

A million voices in praise

A rose has never smelled redder

The sun has never been brighter

If I could find the right words to say

If you could look at my face

If you could just see this place

You wouldn’t cry for me today

You wouldn’t cry for me today

You wouldn’t cry for me today

You wouldn’t cry for me today

You wouldn’t cry for me today

Tough Times

It's been a very tough week around here. LO has been sick since a week ago Sunday. She's just now feeling better today, so that's been about 8 days of her coughing, puking, running a fever, sneezing, coughing and puking some more. It's been awful. And, not surprisingly, Chase picked up a little bit of it the bug over the past week as well. He's been sleeping much more than usual, not eating as well, and had a bout or two of the pukes. Luckily he hasn't had a temp, but with the massive molars he has cutting through along with just feeling pretty crappy, he's been less than his usual, cheery self (understandably).

Of course it goes without saying that I have been miserable since Travis took a turn for the worse and left us last weekend. He was such a gorgeous, happy boy and I wish more than anything that I had a chance to meet him in person. You can see his bubbly personality in his pictures and the oh-so-many adorable faces that boy would make! My heart is heavy for Nicole and Roger and their entire family as they are experiencing such a devastating loss that no family should ever have to face. I can't help but keep putting myself in their shoes, imagining the feelings of pain and anguish and the constant "WHY?!" that I imagine they must be thinking. I try to hold on to my boy that much closer, but I can't separate the feelings of gratitude and thanksgiving for my sweet son from the grief and despair I'm feeling over the loss of Travis. I know we'll never understand these things on this side of Heaven, but oh how I wish we had a tiny glimpse into the plans God has for each of us. My heart aches over this incredible loss. My heart aches at knowing this probably won't be the last time a precious HLHSer we've grown to know and love will be taken from this earth all too soon. My heart aches at the fear of losing my son.

On top of everything else, we got the call regarding Chase's cath date last week. Now this is looming over my head, bringing along with it all the fears and worries and concerns of putting him through another procedure, anesthesia, intubation, hospital stay, etc. It's so scary. I know God has a plan and will watch over us, but not knowing what lies ahead is so frightening, more so now than ever.

Ugh. Sorry I haven't been around out here much lately. As you now know, it's not been the greatest week or two. Please just remember to keep the DiCarlo family in your thoughts and prayers. They need an outpouring of our support more now than ever.

Heaven-Bound Angel

My heart has been aching for the past 2 days over sweet little Travis DiCarlo. He had his 4th heart surgery on Thursday, developed complications on Friday, and went home to be with Jesus on Saturday. This is pure agony. Pure torture. There are no words to express the deep and debilitating pain I'm feeling for his family and their unimaginable loss.

I know there's nothing I can say or do to lessen the pain the DiCarlo family is feeling right now. I can't even imagine. I know I've had the most draining few days from several standpoints--emotional, mental and physical--and I'm certain my pain hasn't even touched the surface of what they must be feeling.

If you're willing to help, there are a few things you can do. First of all, Travis is still on the bypass machine waiting for an OR as Nicole and Roger made the selfless decision to donate all of his viable organs. Please pray that there is little or no damage to his organs so his legacy can go on through giving life to others. Secondly, please consider making a donation to the DiCarlo family to help cover their upcoming expenses. You can click on the link to the left or visit www.teamtravis.info and click on the PayPal link on the right. Finally, please please PLEASE continue to pray for Nicole, Roger and their entire family as they grieve such a devastating and unexpected loss.

Travis Gary DiCarlo

What Can You Do?

Today is Valentine's Day. It is also the last day of Congenital Heart Defect Awareness Week. I've shared with you several CHD facts, as well as the experiences of several other heart families, over the past week. I've asked for your help to Raise awareness. To spread hope. But what does that really mean? What can YOU do to help raise CHD awareness and help us find better ways of treating and possibly even preventing CHDs?

SO glad you asked! Let me tell you!

Give blood.
This is such a quick and easy thing to do! And anyone can do it! Chase needed a blood transfusion after his Norwood procedure when he was only a week old. During both of his surgeries, he had to be put on cardiopulmonary bypass (often referred to as a heart–lung machine), a technique that temporarily takes over the function of the heart and lungs during surgery, maintaining the circulation of blood and the oxygen content of the body. The machine requires donor blood to prime the machine. So by giving blood, you are doing your part to help save lives.


Donate to the Children's Heart Foundation.

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD. CHF has funded over $4.1 million of vital, life-saving CHD research since its inception, which includes approximately $400,000 in 2010.

Click here to make a donation in Chase's honor, or in the honor or memory of the sweet CHD warrior/angel close to your heart!

Source

Become an Organ Donor.
110,371 people are waiting for an organ. 18 people will die each day waiting for an organ. 1 organ donor can save up to 8 lives. Those facts and figures alone should make your mind up for you!

Donate the gift of life.

Click here to sign up today!


Support CHD Families.
Your support is crucial to CHD families. While you cannot fully understand the path our lives have taken to care for a child with a special heart, you are our family. Our friends. Our shoulders to lean on. Our voices to lift in prayer. You provide hot meals and send cards of encouragement. You sit with us at the hospital by our child's bedside for countless hours. You offer financial support and help with caring for our heart healthy children. You are the ears we need to listen, the hands we need to hold. You are our strength as we make our way through our darkest and scariest moments. We are forever indebted to those of you who have been there for us when we needed you most, and pray that you continue to do so in the months and years ahead.

Thank you for your continued support, love and prayers.


Raise Awareness.
Today's the last day of Congenital Heart Defect Awareness Week. Tweet about CHD Awareness. Change your Facebook status to promote CHD Awareness. Feel free to link to this post so your friends, family and followers can learn how to raise awareness.


Read this.
If you want to know why heart moms are so fired up about CHD awareness, read this post. Amy's words may as well be my words. She expresses the urgency of the need to fund research, prevent CHDs and develop new ways of treating existing CHDs that I believe everyone--heart family or not--can understand and identify with. Please take a moment to read her post.


Raise awareness. Spread hope.

CHD Awareness Week: Bodie

Today's post is from Amy, heart mama to sweet little Bodie (a.k.a. "Chase's little brother"). Bodie is a living testament to the power of God's healing touch! He's been through quite a journey, and it's such a blessing to see God's plan for his life unfold before our eyes!

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On October 1, 2009, our world changed forever - the day we heard "your unborn baby has a congenital heart defect." Although we knew it was serious, it would take weeks and several more ultrasounds and fetal echoes before we would have a final diagnosis of Hypoplastic Left Heart Syndrome. Our sweet baby was to be born with half a heart.

We spent the next 4 months crying, pleading with God and praying for a miracle. We thought He would answer by healing our baby's heart before birth. But as God often does, he answered our prayer in another, much better, way. He gave us a little boy who would have more fight in him than we could ever imagine. A baby boy that would have not only half a heart, but odd genetic arrhythmias and a ridiculously low resting heart rate to go along with it, but who would fight on and astonish everyone. A baby who would be a daily testimony to the amazing power of our Lord.

Our sweet boy, Bodie Isaac Bennett, was born on February 16, 2010 at a hefty 7 lb., 13 oz. and 20.5 in.

He had his first open heart surgery, the Norwood, on February 22, 2010.

He had a fairly rough recovery, spending 3 weeks in the CTICU and an additional 2 weeks on the step-down floor, before finally coming home at 6 weeks old. He had a paralyzed vocal cord but managed to take all of his feeds by mouth (they were thickened), to the utter astonishment of all of his doctors and nurses. He also had an unexplained dependence on oxygen and was sent home on 1L of oxygen. Our life settled into a new "normal" between round the clock meds and oxygen.

3 weeks later, he became slightly lethargic during his feeds, so I took him to the ER just to get him checked out. Within an hour of being there, his oxygen sats had dropped so low they needed to “bag” him and send him directly to the CTICU. By the next day, he was satting in the 60's and they didn't know why, so they sent him for a cardiac catheterization. He coded on the table, and again once he got back to his room. We almost lost him that night, until an angel of a doctor stepped in and decided to put Bodie on an external pacemaker. Within an hour, he turned around. A week later, he had his second surgery, to install a permanent pacemaker and take down his sano shunt and give him a BT shunt. He came out of surgery in great shape and flew through recovery, coming home just 2 weeks later!

4 days after that, he was readmitted to the hospital with blood in his stool. During the week it took them to determine than it was c-diff (a nasty hospital-borne infection), he contracted parainfluenza from a roommate. We almost lost him a second time as he was rushed down to the cticu and intubated. Once they got him on the right antibiotics, he was able to be extubated and recovered nicely. He was moved to the step down floor and spent 30 hours there before being rushed back to the cticu again in critical condition. He was again intubated and given medical support as they determined that he had an infection in his blood which turned out to be MRSA. He then spent 6 weeks in the hospital on iv antibiotics (5 of those weeks were spent in the cticu as he needed a heart medicine, milrinone, due to the beating his heart took from all of the infections).

The day he finished his antibiotics, he was discharged (July 21st)! He then spent almost 2 months at home, growing and thriving. He did amazingly well while at home and we cherished our time together, as a family of 4, finally at home! On September 13, Bodie underwent his third open heart surgery, the Bi-Directional Glenn. Although he came out of surgery intubated and on nitric oxide (to help with his “twitchy” pulmonary beds), by all accounts the surgery was a success. He was extubated the next day and home 4 days later!

Bodie has been home since then and is thriving. He is gaining weight, growing teeth (and hair!) and LOVING life. He is a people person and loves to smile and laugh at anyone who looks in his general direction. He LOVES to eat, army-crawls everywhere, pulls up on anything in sight, cruises on furniture and loves to play with his big sister. He has PT to help him catch up in his gross motor skills, but other than that, is just like any other 1 year old. He is an absolute joy for us!

We know Bodie has at least one more surgery in his future, but we hope to get a reprieve from hospital stays until the Fontan (sometime between 3 and 4 years old), the "final" surgery in the 3-stage palliative surgeries used to treat HLHS.

Our sweet fighter has had a rough road to be sure, but God has answered the prayers of so many faithful people who have been praying without ceasing for Bodie and our entire family. We could not be more blessed to have him in our life. He has taught us so much about strength and determination and willingness to live. And about taking life one day at a time and enjoying the small moments. He loves life. He has no idea life dealt him a bad hand. He was born with half a heart, yes. But twice the spirit. Twice the determination. Twice the love.

We love our little man and would walk this journey again in a heartbeat!

You can follow Bodie's journey here.

CHD Awareness Week: Brandt

Today's post is from Lindy, mom to fellow HLHS baby and MUSCer, Brandt. I had the opportunity to meet Lindy while she was pregnant with Brandt and show her my sweet Chase in person. Brandt turned out to be quite the Poster Boy for HLHS, sailing through his Norwood and Glenn recoveries, but hit a bump in the road post-Glenn.

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On May 25, 2010, our sweet little Brandt Ethan Markevich arrived... perfect in every visible way. Four months earlier we were shocked to hear at my 20-week ultrasound, “There’s something wrong with his heart.” Those six little words introduced us to the terrifying unknown world of congenital heart defects. With two older heart healthy boys, my husband and I had never heard most of the medical terms that were suddenly being thrown around, and certainly not hypoplastic left heart syndrome.

In short—we quickly learned—only half of our little baby’s heart had formed correctly. The left side was severely undersized. Surgeons would need to operate soon after birth, followed by a second and third open heart surgery as he grew for him to be able to survive. Almost immediately we realized our hope for this precious gift of life rested in the hands of our Great God, Who loved Him more than we could begin to. And we were so thankful to learn of the fantastic pediatric cardiology team at MUSC in Charleston. Our local pediatric cardiologist team has a close-knit partnership with MUSC, and strong success rates due to amazing follow-up between the surgeries.

So we chose the name Brandt, meaning beacon, with confidence that his story could lend hope to others. We did our best to prepare for his arrival, including an extended stay 4 hours from home. Just one month before his due date, a mutual friend at my dentist’s office of all places introduced me to Chase's mom. As soon as she heard our baby had HLHS, she whipped out these gorgeous pictures of Chase at 6 months, and told me how he was thriving after his first two surgeries. I got to meet her and Chase before we headed off to Charleston, and what an inspiration they have been. She put us in touch with CrossBridge Ministries in Charleston. They became our family away from home, even providing housing where we could keep the boys with us during Brandt’s time in the hospital.

At birth, he was quickly whisked away and stabilized. I had hoped to get to hold him briefly, but due to fragile catheters placed in his umbilical cord, we had to wait until the day before his first surgery. Pure love!

He came through his Norwood with flying colors, despite an extremely small aorta, even by HLHS standards. The next two weeks he amazed all of us with strong steady recovery to be discharged 3 weeks after birth! He went from this:

to this:

...one tiny step at a time. Dr. Bradley, the head surgeon, continues his follow-up with each of these special little babies even to the recovery floor. Due to severe reflux that is also common to heart babies, Brandt struggled the first few weeks to gain weight. But once we got him home he took off, thriving with his family.

In some ways those months were very long, filled with many doctor visits, but in many ways they flew by. We treasured our time with him as all too soon it was time to head back for a heart cath and indicators that he was ready for surgery #2, the bi-directional Glenn. As his oxygen saturations had started to drop, we were ready for his heart repair to move to stage #2, but I think parents are never ready to see their little ones in pain again.

December 8th, he once again came through his surgery quickly and with great recovery—we headed home December 12th! But our normally happy baby was a screaming mess for 3 days straight following that trip home. Chest x-rays and an echocardiogram showed the actual surgical repair to be a huge success, but a lump had developed in his chest incision, indicating an infection. His local cardiologist sent us back to MUSC on emergency basis, where Dr. Bradley had to reopen his chest and trim bone and tissue to get rid of a nasty staph infection, official diagnosis mediastinitis—yet another life-threatening condition, but God spared him with the quick treatment.

They used a wound vacuum to suck out the fluids until they were able to reclose the incision. This time was agony for me as he had a terrible reaction to some of the sedation meds they gave him and had to be restrained to keep him from pulling out tubes and wires. He also had 3 weeks of strong antibiotics. His recovery was quite drawn out. We spent his first Christmas at MUSC—one we will never forget. He was exhausted and had lost weight again—but we were thrilled to find the infection had cleared at the end of his antibiotic regimen.

Once he got over the pain of all the extra surgical procedures, our happy little Brandt was back. And he has more energy than ever, and is packing on the pounds. We look forward to getting to spend time with some of his heart friends once his semi-quarantine is over following the flu season. He’s not scheduled for any more surgery until around the age of 3, the Fontan surgery. We continue to pray for healing for him as well as so many of the heart babies we’ve had the privilege to meet.

CHD Awareness Week: Anna Grace

Tina, mom to Anna Grace, shares her journey with us today. Anna Grace was born at MUSC less than 4 weeks after we were discharged to bring Chase home for the first time.

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Jeremiah 29:11 - 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.

I was in the PCICU waiting room, overwhelmed and scared, on day-one after my daughter’s open heart surgery and in walks this very normal looking family with a normal looking little baby boy. It was at this moment that I met Chase and his parents for the first time. They were very friendly and shared with me their names and introduced me to their son Chase. They said he had HLHS and that he too had the Norwood surgery. They had been home from Charleston but were back just for the day for a follow-up swallow study. They were such an encouragement to me – seeing this very happy, sweet, normal looking baby boy quietly gave me hope for my daughter – that perhaps I too would be able to take her home with me one day. It was a brief visit, but it was the planting of a seed. It was just what I needed at that exact moment.

With that being said….. I’d like to back up and share with you how we arrived in Charleston at MUSC in the PCICU waiting room to begin with.

It was Friday, August 14, 2009. My husband and I went to the doctor’s office for our routine 20 week ultrasound. We were expecting our second child; we already had a little boy who was 2 years old and completely healthy. Like most expectant parents we were excited to be finding out at that ultrasound if we were going to be having another little boy or if we were going to be having a little girl.

During the routine ultrasound the technician confirmed that we were having a GIRL, but she had some trouble getting pictures of her whole heart. She said that our baby wouldn’t sit still or get in the right position for her to see the heart. She completed the ultrasound and we were then ushered to a regular exam room. The doctor looked at the ultrasound and had us go back into the ultrasound room for another try. Two technicians were now working to get better pictures of our baby’s heart. They never said to us that anything was wrong, but they didn’t have to. Finally they had everything they needed and again ushered us back into an exam room. I looked at my husband and finally voiced it, “Something is wrong”. My husband prayed this simple prayer while we waited for the doctor to return, “Lord, You are sovereign and Your hand is in complete control over all things, even this baby. Let us rest in You no matter how this turns out.” We waited about 5 more minutes and the doctor came back in and said this, “It does not look good, but it is something we can work with. I can not say for sure, but it looks like Hypoplastic Left Heart Syndrome. We are setting up an appointment with a specialist”.

That was a defining moment in our life. We were reeling and we left our appointment to go home and start doing research on this diagnosis that we had never heard of before. The internet is a scary place for statistics on this diagnosis. We of course were also still earnestly praying that the doctor was wrong and that when we saw the specialist it would have been just some terrible misunderstanding.

August 18, 2009. This was when we saw the maternal fetal specialist who gave us our daughter’s official diagnosis of Hypoplastic Right Heart Syndrome (not Hypoplastic Left Heart Syndrome as we were initially told). He scheduled us to meet with a pediatric cardiologist who would perform a fetal echo to obtain even more detailed information about her special heart. It was all so overwhelming. I think we were in shock.

In between this appointment and the next we named our daughter – Anna Grace. We had this overwhelming need to give her a name and it couldn’t wait. I can’t explain this NEED that I had to give her a name, but my husband and I both agreed that Anna Grace suited our daughter perfectly. The reason we felt it suited her is because Anna MEANS grace so…essentially she would be “Grace, Grace” – it was a double measure of Grace. We were new Christians, both being saved in 2007, and felt that the Lord had already given us so much grace just by saving us – we prayed He would bestow that same grace on our daughter so in naming her “grace, grace” we wanted to honor Jesus. Once she was named I began praying for her by name and having my friends and family pray for her by name as well. Also, by naming her, somehow I was beginning that bond with her and that should the Lord not allow her to live much past her birth that I and everyone else would know that I had a daughter… and her name was Anna Grace. From this point forward I always referred to her as Anna Grace, never as “the baby”.

A week later we met with the pediatric cardiologist who performed the fetal echo and gave us even more detailed information about our Anna Grace’s complex little heart. The detailed diagnosis: Tricuspid Atresia, Aortic Co-Arctation, Transposition of the Great Arteries, Atrial Septal Defect, Ventricular Septal Defect and Pulmonary Stenosis. Our daughter’s cardiologist told us that our daughter was “the rarest of the rare”.

The cardiologist told us that our local hospital would not be able to care for her and that we would need to travel 3 hours away, to MUSC in Charleston, SC to deliver her. That would also be where she would be having the three surgeries she needed to have a chance to survive with her heart defects. The surgeries our daughter would need: “the Norwood” at birth, then a second surgery called “the Glenn” at about 6 months of age and then a third surgery around age three called “the Fontan”. These are open heart surgeries… as in opening her chest completely, stopping her heart and putting her on heart/lung bypass to perform…. Very serious surgeries and no guarantees that she would survive. But, without the surgeries her condition is 100% fatal – usually within the first three days of life.

The other option was to not treat our daughter – this option is called the “comfort care” option. The doctors try to make your baby as comfortable as possible while in the hospital until her little body succumbs to her defect.

We really felt there was no option for our daughter other than to treat her by means of the three surgeries. So… we made plans to deliver our daughter in Charleston. On December 28, 2009 our daughter, Anna Grace was born at 3:48 am in Charleston, SC.

She underwent her first surgery, the Norwood, at seven days old. This was an excruciating day. It was also the very first day that we were able to hold our daughter. Because she had so many lines running into her little body prior to surgery it would have been too dangerous to hold her for fear of disturbing those lines. However, the doctors told us that if we came early before her surgery they would let us hold her for a couple hours and if the lines were disturbed they could be replaced during surgery. So, at 4:00 am on January 4, 2010 we sat in the PCICU holding our daughter for the first time. Crying over her, praying over hear, singing to her and begging God to spare her life. Those two hours flew by more quickly than any two hours have ever passed. At 6:00 am the anesthesia team came to get our daughter. We knew we had to let her go, but everything in me wanted to take her and run.

We were given a pager which we were told the doctors would use to update us on Anna Grace’s progress during the surgery. So we waited in the waiting room, we prayed, we paced and we watched the pager for any updates on our daughter. At about 2:00 pm the surgery was over and we met with her surgeon who told us that everything went as planned, there were no surprises during surgery. That was really great news. The surgeon then told us that the next 24-48 hours were critical. We were informed that because of the amount of swelling these babies endure with this particular surgery that it is standard practice to NOT CLOSE THEIR CHESTS after surgery for 72 hours to prevent any damage that the swelling might cause. (I think also it is to allow for quick access to the heart should any problems arise). The surgeon did his best to prepare us for how she would look when we saw her with her chest left open and only a small piece of “saran-wrap type” material being sewn over her little heart. Despite his best efforts to prepare us, it was shocking to see her for the first time, she didn’t look like our baby because of all the swelling and it was even more shocking to see her little chest OPEN – you could literally see her little heart. As a mother I remember thinking, “how is she ever going to survive this”. Amazingly, our daughter’s swelling dissipated at a miraculous rate and she was able to have her chest closed only 1 day post Norwood. This was really nothing short of a miracle.

The time in the hospital post Norwood was a whirlwind time….. emotional….but that word doesn’t even begin to scratch the surface. However, each day our daughter grew stronger and after 6 weeks in the hospital we were able to finally bring our baby girl home. What a joyous day… one that I wouldn’t even allow myself to dream about, but was finally here!

Once home, our little girl was really not very happy, she cried a lot, she had feeding problems and severe reflux. But – despite these obstacles, she grew and her overall health remained stable. However, (as expected) as each month passed, her Oxygen saturation levels did begin to steadily decline and by May her O2 sats were hovering in the high 60’s. It was time for her second open heart surgery – “the Glenn”. As much as I hated to do this yet again, I knew it was time – my little girl was visibly blue constantly now and I could tell that her little body really needed this surgery.

So, surgery number 2 was scheduled for June 24, 2010. Back to MUSC in Charleston. We trusted her surgeon, the doctors and nurses there – we knew them all by name this time. Even so…..it was even harder to hand her over for surgery than the time before. We had 6 months to know our daughter, bond with her…. It was so very difficult to hand her over to anesthesia.

She did amazingly well during her second open heart surgery – again, her surgeon said that everything went as expected. This time our stay at the hospital was only 10 days long. I consider that nothing short of a miracle. After ten days I brought my very PINK daughter home from the hospital for the second time and this time she truly started to thrive. She was happy now and started sitting up and then crawling and most recently walking… hitting all her milestone like a champ!

Today, Anna Grace is just a little over a year old and we live a relatively “normal” life. He O2 sats hover in the low 80’s now, she is still taking three daily medications and we are limiting her exposure to germs. She is nothing short of a miracle. I am thankful for her – she is a blessing and amazes me every day.

Post-Norwood

Post-Glenn

One Year Old!

You can follow Anna Grace's journey here.

CHD Awareness Week: Aly Jean

A warm welcome to fellow heart mom, Jenny, who shares her journey with her sweet little one below. Aly is about 4 months older than Chase and has her Fontan scheduled for March 16th. Please remember her family in your thoughts and prayers in the weeks and months ahead!

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My husband and I had been married for 3 years when we decided it was time to add one more to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic! For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive one! (2 actually - one for back up :) ) For the next 6 months we blissfully planned for the arrival of our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :) At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to. We laughed right along with her and didn't think twice about it. Never once did it cross my mind something might not be right.

Little did we know, that when we got this picture taken our little girl was hiding more than just her “little girlness”.  We thank god on a daily basis that our Ultrasound Tech paid such close attention and caught that something just wasn’t right with the heart.

On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all. Again, it never crossed my mind something might not be right. Our world came crashing down that day.

Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We were devastated but we didn't give up. We were thrilled to find out that the University of Michigan was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home. Our daughter, Aly was born at U of M on June 30, 2009.

Beautiful, isn’t she? ☺

She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.

It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was holding blankets and tubes and wires with a little tiny baby in the middle of it all.

This picture was taken just a few short hours before her first open heart surgery.

She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until they got back up to the Pediatric Cardiac ICU. She had a rough patch that evening of trying to get stabilized but pulled through.

Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We could look through the membrane and actually see her heart. Her chest was left open for 4 days following surgery.

8 days later, she went back into the OR for a shunt revision. The shunt that had been placed in her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our baby girl for the very first time.

We struggled with feeding and gaining weight, as many heart babies do, but we made it to her Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5 days later.

As of just last week, we have scheduled her Fontan surgery for March 16. While we are not looking forward to handing over our baby girl again, we are looking forward to having all 3 surgeries behind us. We know that life is full of surprises and there may be more surgeries in her future, but that is not for us to worry about. We are looking forward to living life as normally as we can and appreciating every day for what it is. We are so proud of our little girl and can’t wait to watch her grow! Follow us at www.alyjeansspecialheart.com to see what she is up to now!