Wednesday, February 29, 2012

2.29.12 - Swallow study = Progress!

Liam got a great report on his swallow study yesterday.  He can now tolerate a nectar consistency instead of the honey, and we are to start working on thinner liquids through a "coffee-cup" straw (very thin straw to slow down the flow).  I am SO thankful for some improvement!  The therapist also said that she is confident the only "issue" we are dealing with is a timing issue in his swallow function.  She said his muscle tone, physiology and swallow were all working as they should, but is just slightly delayed which causes him to aspirate on quick flowing liquids.  She was very thorough in explaining everything to me, so I feel much clearer about his situation.  So our plan is to take it an ounce at a time, and slowly start "teaching" him to swallow thin liquids.  I have yet to try it out since Liam stayed at my parents the remainder of yesterday and today while I was working, but I am anxious to see how he does.  Obviously, we are going to be closely monitoring his lungs and breathing to make sure he isn't silently aspirating and is tolerating it well.  The good news is that he actually did cough when he aspirated a little during the swallow study, which is also an improvement from the silent aspirating he had been experiencing before.  So, all in all, we are very pleased with the results!  Glory to God!

Sunday, February 26, 2012

2.26.12 - Doing great

With all the big changes that took place last weekend, Liam is doing fantastic.  He is sleeping and napping well in his new big boy bed and transitioned really well, with only two naps not taken and a slightly interrupted first night sleep.  This is a huge praise!  I will admit I had some anxiety about the changeover, as I really value his nap time to get some work done! LOL.  I am glad he values his nap time too =)

The tube being out has been such a blessing, although I still find myself unconsciously thinking that it's still there.  And I guess it's closing up ok??  Moms that have taken theirs out before, it still kind looks like a second belly this normal?  Not sure how long it takes for the skin to close up completely...Just want to make sure we don't need to get it looked at, because I have no idea if it looks right or not!

I also scheduled Liam for his next swallow study for this Tuesday...had to get it in before our insurance changes March 1.  Ugh.  Insurance is such a huge deal for us now, whereas before Liam, we didn't give it much thought.  I've decided this time around, I really want to know for sure what is causing Liam's dysfunctional swallow, if it is still present.  I've always been a little confused as to what is actually the cause of it - they either say it's low muscle tone (which I don't understand this when he is swallowing solids just fine) or that it's due to his vocal chord.  I guess I need someone to draw me out a picture and explain it to me that makes physiological sense?  I just keep thinking there is more to it that what they are telling us.   Anyways, I'm paying for some positive improvement!

That's about all that's been going on for us.  Busy time of year this is, as I am now officially a paid tax preparer.  This also involves taking an exam at some point!  I have a couple clients I am doing from home, plus a couple of blog designs to work on as well.  I think I am busier now than when I worked full time!

I'll post an update after the swallow study!

Sunday, February 19, 2012

2.19.12 - Big changes

The tube is finally out...
Right after removal...

A few last pictures of Liam with his tube...

It's time!

It's official and he's showing it off!

I am still in a little bit of shock that the time has actually come to take it out!   It's just been all we've known for so long.  I did get a little emotional, and so did Liam.  He got sad and asked me to put it back in...I told him that he was a big boy and didn't need it anymore because he was so big and strong now.  Which led us to make another change this weekend that we've been meaning to do...

No more crib!

Liam is finally out of the crib and into a big boy bed!  He hasn't officially slept in it we made the change this afternoon, but hopefully things will go smoothly.  He seems to love it so far!

And I guess potty training maybe in the near future too...gosh this age, they just grow up so fast!  I almost can't keep up!  Thank you all for all your prayers...God is moving mighty mountains in this family and bolstering our testimony that He is good and SO SO faithful! 

Friday, February 17, 2012

2.17.02 - Praise the Lord!

Just a quick update to share his cardiology update - it was FANTASTIC!  Liam's pressures are back down into the low 30's (31 for the left pulmonary and 34 for the right pulmonary) and his heart function is doing great!  We don't have to go back for 6 months!  So, you know what that means...

TAKING OUT THE TUBE PARTY!!  Tonight =)  Stay tuned for the festivities! 

I waited patiently for the LORD to help me, and he turned to me and heard my cry...He has given me a new song to sing, a hymn of praise to our God.  Many will see what he has done and be amazed.  They will put their trust in the LORD. {Psalm 40:1,3}

Wednesday, February 15, 2012

2.15.12 - End of the week excitement...

Ok folks, this Friday IS IT....Liam has his follow-up cardiology appointment.  If his heart looks good and stable, this will be the day we FINALLY take his tube out!  I am really praying this is it yall.  Liam has had his tube for officially 24 months and 26 days...although it has been a blessing, it will be nice to finally retire it back into it's box.  We are READY!

Athough I am ready for it to go, I have gotten a little emotional over "the tube" this past week.  I guess because it's all we've known with's like a part of him in a strange way.  Each morning, I have the habit of patting his tummy to make sure it's intact (and that he didn't pull it out in the middle of the night)...and getting him dressed and undressed carefully to make sure it doesn't get caught on something.  Going to be another big milestone for our amazing little heart warrior!

Please pray for our big day!  Will keep everyone posted when we know for sure =)

Tuesday, February 14, 2012

And the winner is.....

Congratulations Shannon!!  I will contact you to get your info =)  Thanks for everyone who participated!

Monday, February 13, 2012

CHD Awareness Week - Coping and Believing in the Great Physician

 Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

Don't forget to check out this post for a special heart giveaway - LAST DAY TO ENTER!!
Winner will be announced tomorrow, bright and early!
AND another Heart Momma, Joye, also has an awesome giveaway on her blog that also ends tonight!

I’ve learned my coping mechanism and I’m learning how to believe the Great Physician.

Just to preface this post…this one was originally not part of my “planned” posts…however, after much prayer and consideration I decided to post it as one of my greatest lesson learned…even though I am still learning, but mainly because it’s really been hitting me hard the past few weeks.  I needed to remind myself of a fresh perspective God offers us…

A recent post by my heart friend, Joye, really made me start thinking of the “truths” that I’m claiming in my life, especially in regards to Liam and his journey with his CHD.  As I have been pondering all the things I’ve learned while riding this CHD journey, this was a big lesson for me…probably maybe even the biggest lesson of them all.  And I have recently come to the conclusion that this was (is) a coping mechanism for me, in a sense.  Looking back, I have struggled with choosing other’s words as truth instead of choosing what God says about situations.  It especially magnified when Liam was born and continues throughout the first couple years of his life.

I’m a very practical, realistic person at heart.  I try to live positively, but I also try to be honest with myself.  No sugarcoating for me, just give me the real, hard facts.  Maybe it’s because I’ve been hurt in the past…or maybe it’s because I’ve been disappointed too many times in expecting the best that I rarely consider the best is going to come.  I realized through lies of the enemy that the lower my expectations, the less hurt I feel when things don’t work out.  Either way, when our journey began, this so-called- “being realistic persona” began to manifest itself in me in ways I didn’t expect and allowed fears to grow inside me that didn’t need to be there.  Needless to say, this area needed some major weeding out…and a renewing of my mind to set me straight.

Most often times, it began with a diagnosis, or even a prognosis for different things negatively impacting Liam’s health.   I remember very clearly during Liam’s repair surgery in June 2010, after the second attempt at extubating him had failed and they had to re-intubate him, my mind immediately went to the worst case scenario.  I had convinced myself in a matter of minutes that he would not recover from this.  In order to protect myself from disappointment and hurt, I began to accept what had not even come to pass yet, as truth…as our new reality.  I also began to let other’s experiences define our future, even allowing them to make decisions for us at times, all because I had a fear for getting hurt.   My husband would even get frustrated because I would speak these things over our family as truths (of course I saw it as “being realistic” and “preparing myself for what lies ahead”).  But claiming all of these so-called “truths” was doing a number on me and my family.  Numerous arguments and worry began taking over.  I struggled with even accepting the victories we were receiving along the way, because I was so focused on what I thought lie ahead for us.  Although I didn’t realize it at the time, that was a turning point for me, spiritually.  And though it is still an area of constant struggle, the Lord slowly began a work in me…

I don’t think God uses the words “Let’s be realistic here…”  I believe He commands us to fully trust, fully love and fully believe in HIM and His plan for us, and as the Great Physician himself, to truly believe in healing, restoration and completeness and that yes, He can do that.   Even if He chooses not to work in ways we were expecting, we can always trust that “He works for the good of those who love him”.  Through continually seeking Him in prayer and with thanksgiving, we can choose to let God give us the peace we need to live fully now, and truly believe He will protect us and hold us, even if the world’s prognosis turns out to be our reality. 

I want to tread lightly and not sound as if I am in any way saying to not trust doctors, medical profession, surgeons, etc. – for we all know in our heart worlds, they have truly been angels sent by God to help save our little ones.  But when it comes to the prognosis, the answers to the questions like, will my child live a normal and full life, what is the chance he will need this treatment or that therapy, what can we expect our future to be like…Why do we keep believing the future given to us by others…or even ourselves?  Why do we continue to think about our future plans, hopes and dreams in regards to what someone else says who does not know what will happen?  While we still can value and take encouragement or preparation from the guidance given to us through our medical advisors and other heart families, only God knows the true outcome of all of it.   It has been tremendously hard for me to lay the words of men down at the cross, and take up my own cross of His truths for our life.  The enemy always keeps worldly truths and possible realities in close distance, looming over our head and seizing opportunities to distract us with them.   I really don’t want to believe a lot of what the “statistics” say anyways…why would I (only because of fear)?  I had to learn how to be an educated advocate and serve Liam’s needs, but also believe in God’s plan for his purpose and ultimately his life.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

So while I am not saying that we should be unprepared in our journey, I am saying there is a difference in preparedness that stems from fear of what may come and preparedness for what HE has spoken to us. One includes fear, the other HOPE.

So I encourage you to take God at His word, beyond the statistics and prognosis to the eternal perspective of God’s plan.  Let God have control of your family’s future, and know he holds it safe and secure, no matter what lies ahead.  God is the only one who KNOWS...

For you created my inmost being;
   you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
 Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.”  Psalm 139:13-16

In our journey with CHD’s, it is easy to get caught up in fear – it’s ALL AROUND US.  Grim statistics, seeing our children being tortured by this disease, experiencing loss…But God does have a plan and it is GOOD.  Seeing our journey through His eyes is a daily submission of faith and trust, and it’s far from easy.  But when we choose to believe what He says, WHO He is and who He created our children to be there is no doubt that His power can move our mountains, calm our raging seas and replace our fear with peace. 

Last but not least, I write this as my personal experience in my faith and to quote Paul “I came to you in weakness with great fear and trembling. My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spirit’s power, so that your faith might not rest on human wisdom, but on God’s power.”  1 Corinthians 4:3-5

Saturday, February 11, 2012

CHD Awareness Week - Medically Organized

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

Don't forget to check out this post for a special heart giveaway!
AND another Heart Momma, Joye, also has an awesome giveaway on her blog!

I’ve learned how to create a medical notebook.

Medications, procedures, feedings, appointments...information overload, especially for a new mom.  Organization made it so much easier to track all of Liam’s care, plus have everything handy and in one place should we need to quickly get to our closest ER.  In fact, my parents have actually used this notebook at the ER when Dustin and I were out of town.  It’s presence in our life is irreplaceable.  We even made a copy of this notebook for the daycare, when Liam was attending, and it made everyone feel at ease, mostly me.

The BIG binder with EVERYTHING!
The portable emergency binder
I thought I would share what we keep in our medical notebook.  Granted, I have a much BIGGER organization binder with EVERYTHING we’ve ever received medically for Liam, but this portable emergency notebook includes everything that would be needed should we not be the ones providing his care.  We used a flexible red notebook with sheet protectors to contain all the info.  And at the end, if you want some extra resources, I've provided free downloads of all the forms I've used (most are re-done in a better format, the ones I currently have in the binder need some updating!). 

First page:  Emergency Medical Summary Sheet

I decided to create this first sheet as a snapshot of all the pertinent information the other sheets have, but only what would be critical to know as quickly as possible in an emergency situation.  Our cardiologist told us, if we ever went to the ER, he requests that he be notified immediately, no matter what.  So you can see above at the top, I clearly have that stated.

Second Page:  Consent to Treatment of my Child

This is important if others are caring for your child (or when you will be out of town, etc.).  This is a release you sign to allow those “others” to sign off on medical treatment for your child while you are unavailable.

Third Page: Emergency Information Sheet

This is a continuation or more detailed version of the first page, and includes places to list things like blood type, allergies (although these probably should be added to the summary sheet also), name of preferred hospital, religion, Emergency contacts, etc. 

Fourth Page: Insurance Information

While a copy of your insurance card would be completely acceptable here (and I recommend you insert a copy of it on the backside of this form - see below pic), it’s good to write out all the information, including the policy holder’s information since the cards usually don’t include that.  Also, if you have secondary insurance or Medicaid, you can group everything together on one page for easy reference.

Fifth Page:  Medical History (optional)

During one of my attempts to get Liam approved for therapy, the therapy group required that I submit a  report on his entire medical history (surgeries, procedures, swallow studies, hospitilizations, etc.).  Talk about overwhelming!  Thankfully, he was still less than a year old, so things were still somewhat fresh in my mind (and my calendar!), so I buckled down and about 4-5 hours later emerged with this lovely Excel spreadsheet (right side of notevook pic) with EVERYTHING (I even include doctor’s appointments) that he has been through medically.  While I can’t say this is completely necessary, it is nice having a complete history in case it’s needed down the line – as it was once for therapy approval.  Once the back-tracking was done, all I do now is update it every time he visits a doctor.  (Although, I need to update this, I'm a little behind as you can see!)

Next Tab – General Information

Child and Family Information – Includes parent and sibling information, addresses and emergency numbers.

Health Care Providers – Includes a detailed list of all your child’s doctors, specialists, therapists, preferred hospital and other health care providers (can also include here medical supply companies, home health, etc.)

Copies of all current medication bottles – prescription and non-prescription that your child is currently taking.  I started this when I was frequently asked the potency levels of his nebulized treatments, and at the time I didn’t know, I just knew the name of the medication and what dosage we gave.  I also include a copies of any supplement, vitamin and OTC drugs (which you can usually find print outs online, especially for supplements) I am currently giving. 

Next Tab – Heart Notes

The next tab I file all of the letters we receive from our cardiologist after each check-up.  I also have a copy of his Contegra Conduit medical device implant card filed with these.  

Last Tab – Other Information

This is where I file the Care Guides for Liam’s Mic-Key button and his helmet when he had it.  I also filed a sample feeding schedule here when he was tube fed, and would probably recommend for infants or children with varied/different feeding procedures.

That pretty much sums it all up!  I recommend creating separate binders with this information for any person who cares for your child on a regular basis (daycare, grandparents).    I added links below for printables and downloads of all the medical sheets I described above.  I have both a PDF fillable file (unfortunately you can’t save it filled in unless you have Adobe Pro) and printable Word documents.  I also included an excel file for the feeding schedule. The only one not included is the excel file for a medical history.  If you'd like this one, please email me and I can send you the format and I'll say some extra prayers for patience for you while you create it =).

Medical Notebook Sheets - MS Word Files - Download Here
Choose this link if you would like to take the basic sheets to print and fill out by hand or to edit them to save as a Word document.  The formatting may appear different initially in Google Docs viewer, but if you click (upper right) to download the file, it returns to normal when you re-open it in Word.

Medical Notebook Sheets - PDF Files - Download Here
Choose this option if you want a fillable form to fill out and print from your computer.  You will need to download the file in order for the "fillable" feature to come up.  You won't be able to save typed data unless you have Adobe Pro.  

For another resource, I adapted numerous forms for my binder from this site:

This is a great site and very in-depth for other medical information and condition-specific forms.

If you have any problems with the downloads or files, please contact me and I can send the originals to you.

Friday, February 10, 2012

CHD Awareness Week - Relationships

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

Don't forget to check out this post for a special heart giveaway!
AND another Heart Momma, Joye, also has an awesome giveaway on her blog!

Relationships will change.

I decided to recycle with a few changes, my post from last year’s CHD Awareness week Blog Event that heart momma Stef hosted on her blog about Relationships.  This has been one of my biggest lessons through our journey….seeing relationships change.  Some for the better, some are growing  and some grew stronger.   CHD’s have taught me that even while my clock is standing still, life continues around us and   relationships move on, whether you are in them or not. 

One relationship that grew stronger, deeper and more connected due to Liam’s CHD…my marriage.
For a little background on "us", Dustin and I met during the summer before my Junior year in college.  At a frat party.  Funny because neither of us were greek, but both had mutual friends who were.  God was definitely at work that night.  We got along great and started dating exclusively pretty soon thereafter.  A little less than 5 years later, we were married in March of 2006.  Then a few years later, in September of 2009, we gave birth to our little CHD warrior, Liam.  Little did we know when he was born, how our whole world would change.  But looking back, I know God purposed everything exactly as it was supposed to be, and I am thankful.
Dustin and I in our younger days!
Commitment, love and prayer has remained at the core of our marriage.  Commitment to honoring the vows we made and to standing by eachother.  We made a commitment, not only to eachother, but also to God, who is seated at the top of our love triangle.  Love, God's masterpiece that is the core of our beliefs.  And prayer.  Because prayer is a natural prose of faith and love.

"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:12

Having a child with a CHD, enduring three heart surgeries and facing multiple challenges, to say this put a strain on us is probably an understatement. We have learned more about each other and ourselves in the past year than we have probably the entire time we have been together.  We had to learn how we cope with all the feelings that come with facing trauma...anger, sorrow, anxiety, fear and worry…together.   But Dustin and I both agreed when Liam was born and when we found out about his heart, Liam is ultimately God's child placed in our care.  Thankfully, we both shared the belief that God is in control and no matter what, we could get through this, together.

I think the hardest part for me was learning to navigate through my own needs and feelings, while still being the mom Liam needed me to be and the wife Dustin needed me to be.  I had to learn to be sensitive to how Dustin processed and responded to the daily challenges we faced.  But I definitely think our marriage is stronger because of those challenges.  We just took one day at a time, and eventually made it our new normal.

I have read time and time again that families going through tough experiences, especially something so medically fragile with their child, some friends and family just kinda disappear and aren't there to support the family for one reason or another.  We have been very fortunate to not have very many instances in our life of this happening.  I think the only issue we deal with is having to keep Liam healthy by being selective about where he goes, for germ purposes.  We've missed a lot, especially at our church, because for awhile (and even sometimes now if he has an upcoming procedure) we couldn’t risk Liam getting sick, especially during the winter months.  So, if I had to say our friend and family relationships have changed, it’s more so because we couldn’t physically be a part of it.  Those periods of isolation are probably one of the hardest things about being a heart family.

Our relationships with our families have also grown stronger.  Our extended families have been very supportive and have always been a source for encouragement, mentoring and love.  We have truly been blessed with a wonderfully caring family.

Our friendships continued, but they definitely changed.  It’s hard not being able to spend time with our friends as much as we’d like.  It can also be hard when we know they don’t understand the “why” behind not coming or not being around as much either.   But they have all supported us and loved us, despite not knowing what’s going on all the time.   It has definitely changed my perspective on the friendships I have, and have made me more thankful and grateful for our friends who remain by our side.

And I won’t leave out all the wonderful new relationships I have with people whom I would have never met had Liam not been the little miracle man he is.  Our relationships changed, but we are blessed by it, tremendously.   We had no idea what to expect when we first heard those words..."There's something wrong with your babies heart..."  and as much as I hate CHD's, I can say that we have been truly blessed by its byproduct of developing new friendships and new, stronger bonds.  My blog friends and new heart families I have met are a testament to that.  Thank you all for hanging in there with us on our journey....just know we couldn't have made it this far without ALL of you!!

Thursday, February 9, 2012

CHD Awareness Week - A Simple Test

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

Don't forget to check out this post for a special heart giveaway!
AND another Heart Momma, Joye, also has an awesome giveaway on her blog!
Other link ups for awesome CHD Awareness momma's blogging it up:

Heart mom, Stef, blogging "Interview With a Heart Mom", sharing heart families stories of courage.

Heart mom, Jenny, blogging about "Hope" and sharing great facts and stories that provide hope amidst CHD's.

Heart mom, Michele, tells their heart story with their son Maxson.  Maxson has the same CHD as Liam, Tetralogy of Fallot with Pulmonary Atresia.


I’ve learned how a simple test can save lives.

Pulse Oximetry.  A simple two word tool can have the power to save thousands of lives.  You’ve probably often heard me refer to this as “pulse ox” or even term it’s reading as “sats”.  Before Liam was born, I didn’t even know what this tool was or what it was used for.  Now, I know it can save lives. 

By simply require pulse oximetry screening during the first few days of an infant’s life, critical congenital heart defects can be detected.  And early detection saves lives and gives our babies the best chance at a healthy life.

Many heart mommas across the country have been pursuing their legislators to get a law to require this as part of the routine infant screening tests on the books.   Huge strides were made last year, when the Center for Disease Control and the American Academy of Pediatrics publicly announced their recommendation for this testing.  Laws governing these tests are now up to state legislation.  So far, 3 states have made it law, while countless others have started the way to getting the bill passed.

What can you do?  Follow this link to view your state and the person in charge of advocacy for getting a bill passed.  See how you can help.  Secondly, if you are expecting, or know someone who is expecting, tell them to ASK FOR THE TEST when their child is born.  In fact, there is a printable brochure you can find here, that you can bring to your doctor and talk to them about it.

It’s all about learning and being an educated advocate for your child!  You can find more information on pulse oximetry on these websites:

Wednesday, February 8, 2012

CHD Awareness Week - Praise

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

And don't forget to check out this post for a special heart giveaway!

I’ve learned to praise Him.   In the desert or in harvest, I will praise Him.

I love this song.  Since the first time I heard it, it became my song of choice for worship.  It describes the very attitude I desire to have each and every day.  As a heart mom, this is difficult to do, especially when you are in the desert and in battle…a lot.   However, I noticed that when I truly praise Him for our circumstances, as dire as they seem at the time, His wonderful and beautiful peace that is only His to give, falls on me with grace.   For isn’t it by His grace that we praise Him?

Praise for a heart cath instead of surgery.

Praise for Liam's g-tube – as much as I wish we could take it out, it really has been a blessing.

Praise for doctors who are cautious and protective of our child.

Praise for the red wagons in the children’s unit at the hospital… after pulling a hurting child and seeing him happy again, I’ve realized I’ve praised you several times for this already.

Praise for anesthesia…praise my child won’t remember what he went through in the OR or Cath Lab.  Thank you Lord for your protection over his mind.

Praise you’ve let me stay home to be with Liam, to watch him grow, while You continue to provide for our family.

Praise that our child will have deeper compassion and understanding for others,  given the path you chose for him.

Praise for the lives touched, the people who’ve prayed, the light that is shining from our family because of our son’s life…Praise for your son’s life.

Praise Liam knows “Jesus lives in his heart”…and if Jesus is there, it’s perfect.

Praise that our circumstances bring us closer to you, falling at your feet, even if it’s to collapse in our weariness or weep for a life that seems impossible to bear….You will carry us, hold us and are always there with us.

Praise that You are an ever-present Living God…and You are faithful.

Thank you, Lord.

“Shout for joy to the LORD, all the earth.
 Worship the LORD with gladness;
   come before him with joyful songs.
Know that the LORD is God.
   It is he who made us, and we are his;
   we are his people, the sheep of his pasture.
 Enter his gates with thanksgiving
   and his courts with praise;
   give thanks to him and praise his name.
For the LORD is good and his love endures forever;
   his faithfulness continues through all generations.”
Psalm 100:1-5

Tuesday, February 7, 2012

CHD Awareness Week - Awareness & Advocacy and GIVEAWAY

Each day for CHD Awareness Week I'll be posting about the 7 most important things I've learned as a heart mom.   From practical to spiritual, the past 2 years have been a new experience for me and for us as a family.  My prayer is for these insights to help educate and encourage my fellow heart moms and others who follow our journeys.   

And don't forget to check out the end of this post for a special heart giveaway!

I’ve learned why awareness and advocacy are SO important.

For the first day of CHD Awareness week, my number 7 on my lessons learned list is awareness and advocacy.  Just to give you a few facts about how prevalent and deadly CHD's can be and WHY this is so important:

"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."  -Source: The Children's Heart Foundation

The question I know I find myself asking is WHY?  Why, when 1 in every 100 children in America is born with this defect (and the numbers are greater than this in some areas around the world), is there not MORE being done?  WHY only fraction's of PENNIES are being spent....And my final question is always, how did I not KNOW about this?

When Liam was born, I never gave a second thought to heart defects or birth defects in general for that matter.  I guess I assumed they weren't that common.  I never ONCE saw any information on CHD's, not in my OB office, nor in our pediatrician office.  So in my lessons learned list, Awareness and Advocacy are definitely one of them.  I have definitely learned that not only can CHD’s be life threatening, they are also very common.  Our child's hope and future depend greatly on the advance of medical technology and also the role of government in our healthcare system in order to provide adequate funding to make the research possible.

I have also learned some practical ways we can help.  First of all there is AWARENESS, which is the goal of this one week in February.  To educate, get the word out, and let CHD become a common term.  The more people who know about it, the better chance they have at saving a life.  They could even end up saving their own child's life someday.  So while the Facebook messages and blog posts might be overwhelming this week, just consider how little our voices actually get heard.  If just ONE person who didn’t know what a CHD is learns about it, it could potentially end up saving a life.  And I think that’s worth it, don’t you?

Dustin and I openly share Liam's story with others.  We feel people who ask (or even some that don't!) probably want to know.  And not in a scary way, but we just mention what a CHD is and how common it is.  So many moms I know say they know someone who has a child with some type of heart issue, even if they don't know exactly what to call it. 

ADVOCACY is becoming even more important, as our health care system fringes on huge changes and massive overhauls.  Another startling fact?   

The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

Funding for CHD's is grossly underfunded.  In order to fund medical technology, we need government support and funds.  Think of how the 2.2 billion a year could be minimized (and needless to say here how many more lives could be spared) if less invasive surgical procedures could be brought about?  It's ALL about funding.  And it's all about backing.  And from the responses I have received from some of our government representatives, it is clear more educating and AWARENESS needs to be done on CHD's.  It works hand in hand.

I have several national organizations links below, who are working hard on AWARENESS and ADVOCACY for CHD's.  Join them, "Like" them on Facebook or spend a minute or two to get educated on ways you can help.

And's time for my very first GIVEAWAY!!  We created a limited edition of metal heart art pieces for my Etsy shop, and right here on Johnson Heartbeat, one of my readers will win the following piece:

This special “heart art” was made in honor of my son, Liam. It honors all the “heart hero” children and adults who battle each day with life-threatening Congenital Heart Defects. The special symbolism in the pieced-together metal heart mirrors their strength and courage.

The metal heart is bolted onto a 12” x 12” board (3/4" deep) covered in recycled wood planks and the heart is raised 3/4” off the board. The metal heart was soldered using scrap metal and then sealed using a clear satin enamel sealant. Finished size is approximately 13" x 13".

All you have to do to enter is leave a comment on THIS POST (with at least your first name and last initial).  Tell me what is the most important thing you have learned either as a heart mom or as a follower of our journeys.  Get another entry by liking my Simple Blessings Design Facebook Page and leaving a comment there.  And one more entry for linking to this post in your own blog, just leave a link to your blog post in a separate comment here on this post.  Contest will end at midnight on Monday, 2/13/12 and the winner will be announced on Valentine's Day.  So, spread the word and let's help spread awareness for CHD's!!

Sunday, February 5, 2012

2.5.12 - A first...

Liam had his very FIRST bowl of cereal this morning.  What?? You might be saying....Yes, he has had plain dry cereal before many times, but today was the first day to eat a bowl of cereal with milk, with a spoon!  I know, it's those small victories for us!  And while he can't have too much milk due to his swallowing dysfunction - just enough to get the cereal moist, this is still a pretty special day for our boy becoming a man! LOL =)  Here are some pictures from his LOVE of cereal!

CHD Awareness week starts this Tuesday!  I'm excited for all the great information and posts that will be coming!  Stay tuned!