We Need YOUR Help!!!

Friends and family, please help us reach our goal of nationally recognizing February 7-14 as Congenital Heart Defect Awareness Week! This will be a HUGE step forward in raising awareness, and awareness leads to funding, and funding leads to new and innovative TREATMENTS for Congenital Heart Defects -- like Chase's half a heart.

It literally takes less than a minute to electronically sign this petition and confirm your signature in the email you will receive. PLEASE share this with your friends!!! 

Please click here to sign the petition!

Thank you for doing your part to help raise awareness and fund the treatment of Congenital Heart Defects!!!

Make-A-Wish and Macy's... National Believe Day!

Whew!

It's been a whirlwind few days and we are still very much in the midst of the fun, but I wanted to take a few minutes to write about our day last Friday... Macy's National Believe Day!

In case you happened to miss it, Chase's Make-A-Wish wish was to MEET MARIO. Or Mario come to life. Or have a Mario experience. However you look at it, this boy wished for MORE MARIO in his life.

The fun started on Friday with a phone call from Mario himself. Literally, THE guy -- the one and only guy -- from Nintendo who is responsible for voicing Mario. Really, THE guy. It was amazing!

Of course, we were all so excited about the call that we didn't answer it in time... but he left us a voicemail. Hilarious! We had been expecting that call for WEEKS (hubs and I, not Chase) and yet we couldn't even answer it in time. It kind of worked out in our favor because now we have the sweetest voicemail from Mario! And he called back a few minutes later, which was AWESOME.

Chase doesn't get many phone calls, so he wasn't exactly sure what to do. He answered Mario's questions by shaking his head yes or no, but didn't interact very much or ask any questions himself. But it was still adorable.

A few pics of Chase on the phone with Mario...

Somebody else was pretty excited to hear Mario was coming all of the way from the Mushroom Kingdom for a special visit with Chase!

Love this beautiful girl. She was so excited and so happy for her brother!

Next thing we knew, a limo arrived to take us to Macy's to meet Mario! Chase was excited about the long car. :)

Here he is posing for a picture before getting in the limo.

We have some pretty excited people in the limo -- ready to meet Mario! Everyone was there... Mario, Luigi and even Princess Peach!

In the limo on our way to Macy's!

We pulled up to Macy's and met with our amazing wish coordinator, Jodi, who was ready to walk in our star to meet his hero!

There were lots of balloons and people waiting inside to greet Chase on the other end of the red carpet!

Here's our boy Mario as he entered Macy's on the red carpet. I was SHOCKED at how well Chase handled the attention. He does NOT like surprises and I could easily tell he was overwhelmed, but I also watched as he processed everything and ultimately made the decision to go forward, one step at a time. I was so so so proud of him! I know it took a lot for him to react the way he did instead of hiding behind us the entire time, and I just can't say enough how proud of him I am!!!

And there he is... THE one and only Mario!!!!!!!!!!!!!!

After meeting Mario, Chase was excited to be given the opportunity to write a letter to Santa (along with big sis, LO). It seems he'd like a Mario Movie! I was so impressed that he took the time to write out his letter and sign his name. Such a sweet boy!!!

Time to mail the letters to Santa!

After the letter-writing and mailing, it was time for Chase to ride on his very own Mario Kart! Yes, Macy's gave him a Mario Kart and let him drive all throughout the store! He even chased Mario around a few laps!

As if the visit wasn't amazing enough, it seems Macy's wasn't quite finished making this boy's dream a reality. They gave him a H-U-G-E Macy's gift card, his very own RED Nintendo 2DS and three DS games he really wanted.

Our littlest one, baby Luigi, certainly wasn't left out of the fun. Here he is posing on big brother's Mario Kart!

Here are just a few of the outstanding Macy's friends who made this day possible. We are so grateful to Macy's, Nintendo and Make-A-Wish for making our little heart warrior's wish a reality!

And here's a short clip from Macy's that summarizes Chase's day quite nicely!

As if all of this weren't awesome enough, next, Make-A-Wish would be sending us off to New York City to visit the Nintendo World Store! Stay tuned for more!!!

A HUGE Announcement... #MAW4Chase!

NOTE: Chase doesn't know ANYTHING about ANY of this except that something AWESOME will be happening next Friday. So please help us out by not mentioning anything to him or his siblings. :)

We are completely thrilled, humbled, grateful, excited and honored to announce that our amazing heart warrior, who you may recall was approved to receive a wish from Make-A-Wish^® back in June, will be receiving his very own wish...

NEXT FRIDAY, DECEMBER 12th!!!!!

((gasp!))

Can you even believe it?! We are literally (okay, you know me too well---"figuratively") speechless at the incredible events that are about to unfold in our sweet boy's life in just over a week. And I am going to reveal ONE of the MANY astonishing components of his celebration to you today!

Surely you've heard of the Make-A-Wish^® Foundation of America, right? If not, here's a little introduction to this amazing organization:

Make-A-Wish^® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. We believe that a wish experience can be a game-changer. This one belief guides us. It inspires us to grant wishes that change the lives of the kids we serve.

And you've probably visited a Macy's department store at one time or another in your lifetime. But have you heard of their partnership with Make-A-Wish^® called the Macy's Believe Campaign?

Beginning on November 7th, children across the country are invited to drop off their letters — stamped and addressed to Santa at the North Pole — in the Santa Mail letterbox at any Macy’s store, or create and send letter online at macys.com/believe. For each letter received, Macy’s will donate $1 to Make-A-Wish, up to 1 million dollars, to help grant the wishes of children with life-threatening medical conditions.

A big part of Macy's Believe Campaign is National Believe Day, which will be celebrated on Friday, December 12th:

Friday, December 12th is National Believe Day! On this special day, Macy’s will help grant wishes across the country for children with life-threatening medical conditions. Join in on the magic that makes these wishes possible by visiting your local Macy’s store and dropping off a letter to Santa.

If you've been following along so far, you may have already come to this exciting conclusion: Chase will be granted his wish at our local Macy's on Friday, December 12th as part of National Believe Day!!!!! Can you believe it?!?! What an incredible privilege for our family but most especially -- our Rock Star, Chase!!!

***** To our local family and friends! *****

PLEASE join us at Macy's (at our local mall) on Friday, December 12th at 12:45 PM to witness Chase's arrival and his amazing wish unfold -- just look for the red carpet! I know it will be extra special for him to see familiar faces and it will be so meaningful to us to have the love and support of those of you who are able to join us for this incredible, once-in-a-lifetime experience for Chase!

I know so many of you have followed our journey with Chase from his prenatal diagnosis of Hypoplastic Left Heart Syndrome, through his 1st heart surgery, 2nd heart surgery, 3rd heart surgery and every procedure in between. But you've also been there to celebrate with us over the past 5 years, most recently with his amazing milestone 5th birthday party -- and all of the holidays and celebrations in between! We are truly so very grateful for the love, support, prayers and kindness of each and every one of you who have impacted our lives in such meaningful ways. And we know, if given the chance, you would want to do something special to honor Chase and your loving support of our family.

I want to tell you that YOU CAN MAKE A DIFFERENCE! It's super simple, a lot of fun for kids of all ages, and super easy to do. And it would mean the world to us as we prepare for an exciting, eventful few days courtesy of the amazing folks at Macy's and Make-A-Wish. Here's all it takes:

Write your letter to Santa and drop it off at your local Macy’s store, or create and send your letter online at macys.com/believe today. Ask your family and friends to write letters, too. Spread the word and help support Make-A-Wish this holiday season.

Easy enough, right? Make-A-Wish will receive $1 from Macy's for EVERY letter sent to Santa! Would you please consider supporting Chase's wish coming true by helping to give back to the incredible organizations making it possible? I believe in you!

Once you've either dropped off your letter or submitted your letter online, please post a shout-out (or, even better, a photo of you/your child with their letter) using the hashtags #MAW4Chase and #MacysBelieve and tag @makeawish, @makeawishsc and @macys to show your support for Chase as well as Make-A-Wish and Macy's Believe Campaign! Twitter, Facebook or Instagram... any/all social media options would be great to help raise money for Make-A-Wish to grant the wishes of other incredible children like Chase!!! ((Sorry, Mom, if all that "hashtag talk" was super confusing for you!))

A certain special someone is going to be THRILLED by some special magic that is about to enter into his world in 8 short days! Stay tuned...

Chase -- Halloween 2014

DISCLAIMER: Hubs and I have worked with the amazing representatives from our local Make-A-Wish chapter and are VERY knowledgable and informed of the entire wish awesomeness that is about to go down. However, we have decided to guard the details VERY closely so we can ensure all of this will be a GINORMOUS surprise to our sweet little guy on Friday, December 12th. We look forward to seeing him receive his wish and to sharing this exciting surprise with each of you who are able to join us for the big reveal! Thank you for your understanding!!!

Four Years and Two Days

I wanted to take a moment to recognize the anniversary of the biggest life-changing day in my family's life, but I couldn't bring myself to do it on the actual date, which happened to also be Father's Day! Speaking of which... here's a belated Happy Father's Day blog wish for my amazing hubs! Love him!!!

((WARNING: The following post contains graphic images. Continue at your own discretion.))

Four years and two days ago, our lives were forever changed when our unborn son was diagnosed with a complex congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome, or HLHS. As you might imagine, we never expected it and certainly didn't know the first thing about it, yet we were immediately and unwillingly thrown into a world of chaos and confusion unlike anything we'd ever experienced in our lives. In fact, it took me six days just to put the words together to share the diagnosis on my blog. I can relive the day of June 16, 2009 in my mind like it happened yesterday.

Here's the post I wrote that chronicled that dark, devastating day in our lives.

Monday, June 22, 2009

The Diagnosis

This is the hardest blog post I've ever had to write. It's been almost a week that hubs and I have been reeling with the information that was provided to us, and I'm writing about it here in a genuine and sincere attempt to ask for your prayers as we head into the difficult journey that lies ahead.

On Monday, June 15th, hubs, LO and I headed to my 20-week ultrasound appointment with the anticipation of seeing images of our little boy. The ultrasound seemed relatively normal, measuring this and that, listening to the heartbeat, watching our son squirm around in his safe little home.

We waited what seemed like forever for the doctor to come in for the quick "any questions?" discussion, where we would say no, we're good to go.

Unfortunately, the doctor said something to us about not having very clear images of the baby's heart, and that she wanted us to visit a specialist who had more advanced equipment that could capture the pictures of the heart that were needed. She told us not to worry, that 9 times out of 10 it's nothing, don't be concerned, etc.

Miraculously I was able to heed her advice and not worry about the appointment that had been scheduled for us on Thursday, a good 3 days later. I was surprised to get a call not long after we left the 20-week appointment to tell us there was availability for us to come Tuesday, the very next day, for the appointment with the specialist. We jumped on it, just so we could hurry up and get our peace of mind back.

On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. Greig, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the specialist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. Horne. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. Horne did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

Thank you in advance for your thoughts and prayers as we face an uncertain future. I will update the blog as often as possible/necessary throughout this process. I don't have another appointment scheduled until July 15th, so there hopefully won't be much of anything to share about the baby and his heart problem, but I will also continue to post about the fun and random things that happen to us and our precious LO. Can you believe she'll be TWO in just over a month? I'll be working on party details soon, so you can look forward to hearing more about that, too!

Thanks again for your thoughts and prayers!!!

Chase was born on October 26, 2009. He underwent his first open-heart surgery at a mere 7 days of age on Monday, November 2, 2009. They took him back at 6:33 AM and it would be over 8 hours later, at 2:55 PM, before he was out of surgery. We were able to see him for about 5 minutes after he was settled into the Pediatric Cardiac Intensive Care Unit (PCICU) at MUSC Children's Hospital in Charleston, SC.

This is our 1-week-old son following his first surgery. The nurses were kind enough to cover him with a blanket so I couldn't see his open chest and beating heart. It would be three days before the surgeon would close his chest as they needed to allow for the swelling that takes place following this surgery.

He had his share of bumps in the road, which included chest compressions when he crashed coming out of a bronchoscopy procedure, as well as vocal cord paresis and other hurdles before we were discharged when Chase was 5 weeks old. We returned home to learn how to live in our "new normal" world.

Just over 3 months later, we found ourselves back at MUSC for Chase's second scheduled heart surgery. On Wednesday, March 3, 2010 at 5:45 AM, we handed our son over yet again to the amazingly talented cardiac team at MUSC Children's Hospital. At 3:08 PM, just over 9 hours later, Chase was out of surgery and getting settled into the PCICU.

Here he is following his second heart surgery:

I can't help but find myself in tears as I relive these days/weeks in my family's lives. Seeing my son connected to medical devices and the numerous medications that were sustaining his life is hard no matter how long ago we experienced it. I can put myself back into that PCICU, sitting at his bedside, listening to the beeping of his pumps and monitors as if it all happened yesterday. Such a scary time not knowing what the future held for my little boy.

Fast-forward four years later. We got that diagnosis and by the grace of God, we were able to get through the uncertainties that lay ahead. We got through two heart surgeries and have one amazing little boy -- our living, breathing miracle from God -- that reminds us every day just how faithful our God is. It is only by His grace that I can share these:

An almost 4-year-old boy who loves the water and is so proud of himself for jumping in from the side and going underwater just like his big sister!

That same boy who received his first "big boy" bike and has asked every day since to go outside and ride it.

A boy who LOVES him some trains (like the one he's "driving" below), Buzz Lightyear, Super Mario Bros. Wii, BREAD, and every puzzle he can get his hands on -- no matter how big or small!

A big kid who had his very first sleepover at his grandma's house (along with big sister LO) just two short weeks ago, without any concern of being away from mommy & daddy overnight for the first time ever.

Four years and two days ago we experienced the beginning of something that no parent should ever have to face. And yet, here we are today, with an unbelievable blessing in our lives who brings us more joy than I could express. We wouldn't be where we are if it weren't for the grace of God and the love, support and prayers of our family and friends (and blog readers!). We love our sweet boy and it is my prayer that he will continue to bless us for another 80 years!!!

NOTE: His third and final scheduled heart surgery will most likely take place next spring. Please begin praying even now for a successful surgery with no complications for our sweet little Rock Star Chase.

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.

Congenital Heart Defect Awareness Month

Welcome to February... also known as Congenital Heart Defect Awareness month! I'll be sharing several posts over the next 28 days regarding CHDs so please stay tuned!

Today I'm wearing RED for my favorite CHD warrior, my sweet 3-year-old son, Chase! If you don't know his heart story, check out my letter to new heart moms as it shares a little glimpse at how our world was turned upside-down when our unborn son was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect that is fatal without surgical intervention. He is our Rock Star and inspiration... a living, breathing miracle and blessing!!!

CHD Awareness

Today I'm taking a break from all things house-related to share about something that has undeniably changed my life forever. My life was turned upside-down the day our son, Chase, was diagnosed with a CHD called Hypoplastic Left Heart Syndrome, or HLHS. Essentially the left side of his heart didn't form in utero and he would need a series of three life-saving heart surgeries to enable his heart to function.

February 7th through 14th is Congenital Heart Defect (CHD) Awareness Week, so I thought I'd share the video I created for Chase's dedication. I composed the song, wrote the lyrics, played the piano and sang the song that I used for this video. I'm certainly not a professional in any of those areas, but I needed to express my heart and did so the best way I could -- through music.

Our journey hasn't been easy, but we have been overwhelmingly blessed by the fact that our little Rock Star is still fighting and living each and every day to its fullest. He amazes me and I can't imagine my life without him. I thank God for him every day and love him with all of my heart!!!!!

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!

---

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!