2.25.11 - Week in review

Riding along!

This past week has been a busy one!  We ended up going out of town Sunday night and drove to Dustin's family for the funeral for his grandfather.  It was bittersweet as obviously we did not want to be visiting down there for such hard circumstances, but it was great to get to see everyone again.  We had not visited since last September.  Dustin's sister also flew in from out of town and went with us, so it was really great to get to see her as well.  The service was beautiful and it was such a blessing seeing the family and friends come together to support each other.  It was a wonderful celebration of a very special man.

Family picture

Dustin, me, Liam and Dustin's dad

Us and Nanny

Liam had his last Synagis (RSV protectant) shot today.  I asked the nurse if the season was starting to wind down and she said yes, that it peaked in January and now is trending towards less and less cases.  This makes me feel a bit better about venturing out.  Liam is CONSTANTLY wanting to "GO" now...he will literally stand at our door and cry to "go".  Thankfully the weather is staying fairly warm so at least we can take daily walks outside.  

I am exhausted from this week month!  We have had a lot going on and February has flown by!  I am going to try to catch back up with my blog posts again, although things are pretty uneventful right now, which is a very good thing in our world!

2.18.11 - Cardiology Update....good news, thank goodness!!

Liam had his routine cardiologist appointment today - EKG and Echo done.  We are VERY HAPPY to say that everything looks great!  And Liam was a superstar, I think this was his BEST appointment to date.  He was so good...if he could eat cookies, he definitely deserved one!

I was telling Dustin if things could stay the way they are right now, for at least a year, I would be so happy.  Liam is doing great and is gaining weight really well.  He is up to 23.5 lbs and 32 inches. He is eating all sorts of table foods...my big milestone was feeding him Goldfish crackers for the first time...it's nice to be able to share a snack with your child!!  He is continuing with the Vital Stim therapy for his swallowing issues.  I have yet to schedule anything with the ENT, but plan to soon.  We are still giving him all his liquids via tube.  In fact, Liam will now see a syringe and say "juice"...since I give him a gravity bolus of juice each day.  He also knows how to put the feeding set together on his own:

I hate to say that the big syringe is one of his favorite toys! (And do you see he is in shorts??  It's been crazy weather, in the 70's here!  I had to go out last night and buy him some shorts and short sleeve tops to wear!)

He is still coughing/gagging some on just his spit, but I think he is teething too because we are all SOAKED in drool everyday!  Is it normal for older babies/toddlers to be so drooly still??  I'm hoping it's not because he isn't managing his saliva properly and that this is normal....I never know what's normal...but I guess "normal" all depends on what day it is!

We did receive some very sad news today.  Dustin's paternal grandfather, "Papaw", passed away this morning.  He had been very ill for awhile and finally went to be with Jesus.  We will be traveling there for the funeral sometime this weekend.  Please pray for his family, especially Dustin's dad and his grandmother, for peace and comfort.

Blog Event - Relationships in the CHD world

Some of you know our story.  Some of you just arrived to our blog.  To all those who visit us, I just want to start by saying thanks.  Thanks for stopping by to learn a little about our life and to meet our family.  We are glad you are here!!

Today I am participating in a CHD Awareness blog event, hosted by a heart mom friend of mine.  It is on an interesting topic and one where I will definitely be sharing from the heart on our own experiences living as a heart family.  It's a topic that all of us face.  It's challenging but rewarding at the same time.  Relationships.  Spouse, family, friends, coworkers and everyone else we meet everyday.  Please be sure to click on over to her blog at www.whenlifehandsyouabrokenheart.blogspot.com to read other's stories.

And two become one....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.

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.  But Dustin and I both agreed when Liam was born and when we found out about his heart, is that 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 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 we can't risk Liam getting sick, especially during the winter months.  So, if I had to say our friend and family relationships have changed, I guess I would think it's because we couldn't be a part of them physically.  This is our second "lock down" season and it's been hard.  I just wish we could spend more time with everyone.  But I also know that this is hopefully a temporary state we are in and once Liam is older and stronger we can let loose a little bit. 

Our family has been very supportive.  Especially my parents.  My dad cared full time for Liam for a year while Dustin and I both worked full time.  This was a huge blessing for us, and I can never thank them enough for that choice they made to do that for us.  They have always been a source for encouragement, mentoring and love.  And both Dustin's and I's brothers, sisters and in-laws have been there for us every step of the way, in one aspect or the other.  We have truly been blessed with great friends and a wonderful family.

The most difficult thing I have struggled with lately is fitting back into a "normal" society and way of life.  For me, we have been somewhat secluded and withdrawn from the things we did before Liam was born.  Things are just so different now and I feel like a completely different person sometimes.  It's almost as if I am trying to find my way in my new identity. 

I have especially found it more difficult when meeting new people, since Liam has a few more things going on medically than most kiddos.  I never know if I just need to delve into the whole history about Liam's condition or not say anything.  For example, I took Liam to the park one day a few weeks ago and another mom was there with her 1 year old who was already walking.  We started chatting about how her son just started walking and then she brought up Liam's helmet, said her friend's daughter had one, etc.  I just felt very awkward, as if I should say all these reasons for why Liam is the way he is  (why he isn't walking by now, why the helmet, why no sippy cup when it's hot outside, etc.)....I had never really experienced that before.  I want to share his story with people, but then again, I don't want to overwhelm people and make them feel sorry for us either.  So, I'm also wondering, what do you other heart moms do?  I guess since we don't get out much, I have protected us from people's opinions and explanations, so it's hard confronting this when it arises.

All in all, relationships in our family have grown stronger through our experience as a heart family.  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't say that we haven't 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!!

This Heart Momma's Top Seven - #1 Prayer

On My Knees - Jaci Valesquez

 My number 1 as a heart momma is.....PRAYER.   Everyone needs prayer. 

"And this is the confidence that we have toward him, that if we ask anything according to his will he hears us. And if we know that he hears us in whatever we ask, we know that we have the requests that we have asked of him."—1 John 5:14-15

Although, God may not answer our prayers in OUR timing or in the WAY we would like, He always knows what is best for us, as He is the only one who can see what He has in store for us.  But, He ALWAYS hears us.  And I believe He is ALWAYS working for the good of those who love Him.  With prayer, we help carry the burden of another's sufferings.  It is a practical and important way to help those you love who are in need.  

I know a lot of people don't know how to respond when pain, tragedy or hardship, especially when it involves a child, hits a family.  I may just be speaking for myself, but I love to know when people are praying for us.  And I love written prayer.  Just a simple text or note what someone is praying for us means more than words can say.  It just tenders my heart to see the ones we love gather around and meet with God, intervening on our behalf.  

I created a page on my blog called "Prayers for Heart Friends".  I have also listed below all my heart friends their diagnosis and the dates of any upcoming surgeries.  Please take a moment to pray for these amazing families.  We are all enduring multi-faceted journeys right now and prayers are always needed.  I have a few more families I need to add to my list, as I am constantly meeting new heart families.  And, if you see your child on the list and want a specific prayer request listed for them, please let me know!!  I would love to help call more people to pray for your child or family.

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On another similar note, the Lord has been speaking to me about starting another blog to document my faith journey as a heart momma.  I have somethings in the works that I am starting, so please be in prayer for this new venture of mine.  I love sharing about my faith in Christ on this blog, but feel I need a separate outlet as to not take away from the main purpose of this blog, to update friends and family on Liam and use it as a tool for CHD awareness and issues.  I will keep you all posted on the new blogs "happenings".  Thanks for sharing and being a part of our journey! 

This Heart Momma's Top Seven - #2 Support

Support - My lifeline as a mother to a CHD child. To know you are not alone in your journey, and being able to share stories, encourage one another and know that they "get it" is a huge blessing.  These forums also provide a behind the scenes, "been there, done that", look into the various aspects of life with a CHD child.  I have shared many a milestone, encouragement, advice and worries through these outlets.  We are a tight knit group of women (mostly...but please speak up if you're a dad on here, we want to hear from you too!), but have open arms to welcome.  No one wants to be a part of this "club", but I am truly thankful for all the friends and support I have received through various sources as they have blessed me beyond measure!

So, without delay, here are my top sources for support, encouragement, love, hugs....etc.!


Blogs

Where was I before blogland??  Wandering around in my google nowheresville searching for other like me.  I started blogging a few days after Liam was born, simply to keep friends and family updated on Liam's status and help to document our journey.  During Liam's second surgery, a dear blog friend , Stef, reached out to me and offered lots of encouraging messages during that time.  That was the first time I realized there was a "blogland" for CHD parents, and it was HUGE!  She opened the door for me when I didn't know there was one.  After linking in to one blog after another, I have grown to love these precious families like my own. 

You can view a list of heart family blogs under my "Prayers for Heart Friends" tab on my blog.  I will be adding more "information" to this list for my final post this week, so stay tuned!

Support Groups

Support groups have been great at keeping us actively involved in our local CHD community by helping spread awareness, supporting our hospital's Heart Unit, hosting social events and activities for families affected by CHD's and providing an outlet to meet other heart families close by.  The local group we belong to is Amazing Little Hearts - of Medical City Children's Hospital, Dallas, Texas. 

A few more national and online support groups are listed below:

Little Hearts, Inc. - National CHD support group

Mended Little Hearts - National CHD support group with local chapters.


BabyCenter.com Groups  - These are group forums of moms, where you can post questions, answers, praises and such.  I find these groups VERY supportive and informative.  They also have some specialized groups for various heart defects, such as Tetralogy of Fallot. 

CaringBridge / CarePages - A lot of heart moms have CaringBridge or CarePages.  These are a great tool to maintain privacy in your child's care, but also to be able to communicate to friends and family.  I believe CarePages has a search option which can help link you to patients going through similar journeys.


Books

 
A Different Dream for My Child, by Jolene Philo - This is a meditation/devotional book for parents of critically or chronically ill children.  I just began reading it last week, after I finally decided to order a copy.  It is a wonderfully insightful, powerful and intimate look at caring for your child, from diagnosis and beyond.  Using scripture to reference the various "stages" (such as diagnosis, hospital life, home life, long-term care, etc.), this book reads very much like a devotional.  Very handy to have a copy on hand for anyone you meet who has a newly diagnosed child....I truly believe it would be a blessing to have a copy from the beginning, but more than worth it to read wherever you are in your journey.


And last but certainly not least, are all our wonderful friends, family and church family who have continued alongside us through our journey.  We are deeply humbled and blessed to have you in our lives, praying for us, encouraging us, loving us and holding us up. 

This Heart Momma's Top Seven - #3 Hope

Hope - the feeling that what is wanted can be had or that events will turn out for the best; a person or thing in which expectations are centered;  to look forward to with desire and reasonable confidence.

To believe, desire, or trust

Robbie Seay Band - Song of Hope

Hope.  We cannot lose HOPE.  Hope is the very thing that drives me forward each day, each day striving to be brighter than the one before.  I praise God for the light and hope He gives each day.  Hope for our future with our son, hope for Liam's future and hope that today, despite our circumstances, we will find peace simply by being in the presence of the Lord.

Being a CHD parent has taught me MANY lessons regarding my faith....I know God has purposed this path for my family.  Do we struggle?  Yes.  Do we cry out to God, angry, fearful and worried?  Yes.  My son suffers from his condition, and will continue to suffer throughout his LIFETIME, as all children with a CHD will.  He will deal with his CHD everyday he is here on earth, for there is no cure, and his heart will never be a normal heart.  This fact alone has potential to destroy any hope we may find.  But we CHOOSE not to let it.  We CHOOSE God's plans and promises for our life.  For THINE is the Kingdom Power and Glory....not ours.  We choose to TRUST God, so that he can give us hope and a future full of purpose.

This is a wonderful excerpt from the devotional book titled Jesus Calling, by Sara Young:

"I am CHRIST in YOU, the HOPE of GLORY.  The One who walks beside you, holding you by your hand, is the same One who lives WITHIN you.  This is a deep, unfathomable mystery.  You and I are intertwined in an intimacy involving every fiber of your being.  The Light of My Presence shines within you, as well as upon you.  I am in you, and you are in Me; therefore, nothing in heaven or on earth can separate you from Me!


As you sit quietly in My Presence, your awareness of My Life within you is heightened.  This produces the JOY of the Lord, which is your STRENGTH.  I, the God of HOPE, fill you with all Joy and PEACE as you TRUST in Me, so that you may bubble over with HOPE by the power of the Holy Spirit." (p. 332, emphasis mine)

God has given us very tangible sources of hope here on earth.  Our surgeon, Dr. Mendeloff, who has now performed 3 miraculous surgeries on our son.  Advancing technology, soon it will provide less invasive procedures to help reduce the dependence on surgical intervention.  Resources, charities, support groups who all help to advance awareness and funding for the CHD community and provide hope to other families struggling with a CHD diagnosis.  Family and friends, who are our constant source of encouragement and love, you all have continually poured God's light and love on us and for that we are TRULY grateful, humbled and BLESSED.  God is good.  God is HOPE.  Through Him, all things are possible.

This Heart Momma's Top Seven - #4 Peace

Peace -  cessation of or freedom from any strife or dissension.  freedom of the mind from annoyance, distraction, anxiety, an obsession, etc.; tranquillity; serenity.

It took awhile after Liam was born to truly find this again.  It would appear like summer showers, quickly cooling me down enough to keep the heat off, but awhile before I saw it again.  But the Lord was faithful in bringing its more permanent return to me.  The knowing in my spirit that no matter what, God IS in control.  Everything is His.....the suffering, the pain and the glory that comes from it all. 

The song above is one of my favorites  (Audrey Assad - Everything is Yours)....I first heard it at a women's retreat I attended the weekend before Liam's heart cath was scheduled to determine if he would need another surgery just 6 months after his 2nd surgery.  It was a pivotal point for me in my walk with Christ.  It had been so long since I had time away to focus on Him, that I hadn't realized just how far he had already brought me.  With the future of our son's health hanging in the balance, I surrendered.  Listening to this song, the Lord spoke His peace over me.  Peace in knowing it's not about me, nothing here is MINE.  Not the plans we make nor the life we build....It's all HIS.  And because of that, He will take care of things.  His will be done.

Since I tend to be a little "Type A" personality and like things organized, God spoke to me a process to seek His peace.  I realized that when I am truly resting in God's peace in my circumstances, I have usually done the following things:

Remember - God has a perfect track record.  Remembering specific prayers He has answered in the past, how He has been faithful allows me to find peace knowing I can trust Him with my problems and concerns.

"Then I thought, “To this I will appeal: the years when the Most High stretched out his right hand.  I will remember the deeds of the LORD; yes, I will remember your miracles of long ago.  I will consider all your works and meditate on all your mighty deeds.”  Psalm 77:11-12

Release - Releasing my fears, anxiety and worries and casting my cares on God.  I surrender to Him areas I am struggling with and give Him control.
 
"Cast your cares on the LORD and he will sustain you; he will never let the righteous fall." Psalm 55:22

Remain - Remaining firm in His presence and His word.  Keeping my focus on God's promises by hiding them in my heart and meditating on them when I feel anxious.

"If you remain in me and my words remain in you, ask whatever you wish, and it will be done for you. This is to my Father’s glory, that you bear much fruit, showing yourselves to be my disciples."  John 15:7-8

Rest - Rest in knowing that I serve a God who loves me and has PROMISED to take care of me.  I can trust Him with my life in its entirety.
 
"Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.  I will say of the LORD, “He is my refuge and my fortress, my God, in whom I trust.”  Psalm 91:1-2

This is a hard journey to walk.  But if we give God a chance, He will make it light with his peace.  Peace be with you, my friends!!

This Heart Momma's Top Seven - #5 Resources

I decided to do a post each day on my top seven things I need to be the best heart mom I can be to our little CHD warrior!  The goal of my posts this week is to share my experiences being a heart mom, offer some resources for heart parents and highlight some ways we can all help to spread hope and awareness.  ***


Google here, Google there, Google everywhere!!  When Liam was first diagnosed, we had no road map to navigate our way through medical terminology, prognosis, support or care for our child.  Because we had never heard of a CHD, didn't know just how common they are, we didn't know where to get to get the support we needed.  We also were not in a state of mind to process a lot at that point either, given that we did not find out about Liam's condition until after birth.  Granted we did have excellent medical care for him and a local support group that consistently pursued us to come to meetings (Thanks ALH!!), beyond that it was up to us. 

Resources are important because if you don't know what you are dealing with, you don't know what questions to ask.  Educating myself on Liam's condition was extremely important in handling his care.  And knowing the right questions is also very important.  Parents are the best advocates for their children and we must have appropriate resources to make the day to day decisions. 


Below I listed some resources I have found very helpful in my quest to educate myself on Liam's condition and caring for his special needs with feeding.  And my fellow heart moms - if you have more sources for information that I haven't listed, please share!!  I am hoping to compile a page that can be helpful to new moms of CHD children, so they have a starting place for researching their questions.  This is not an exhaustive list by any means, and I also limited it to medical care resources.  I will do a separate post about emotional support resources later this week =)

Heart Research

National Heart Lung and Blood Institute - Research for specific CHD types, also gives common treatments available and what to expect.

MayoClinic - Researching different types of CHD, with great multimedia presentations for visual learners!

It's My Heart - Publication that discusses CHD's, types of CHD's and also the procedures and surgeries, in layman's terms.  Created by the Children's Heart Foundation.  This is the link to the PDF version online.

American Heart Association - Guide for parents of children with CHD's.  This site also has a very nice FAQ section of "What if my child needs..." type of scenarios,  with linked information for common diseases and disorders that are frequently found in children with CHD's.

Congenital Heart Defects.com - Although slightly outdated, this website has a host of links to online resources. 


Other Resources

Book - Your Critically Ill Child: Life and Death Choices Parents Must Face - This is a great book for all parents of critically or chronically ill children.  This really helped me see how the PICU operates and what the limitations and challenges the doctors and nurses face when dealing with critically ill children.  It is written by an intensivist and he openly and honestly expresses his thoughts on different situations to support parents in making decisions for their families in critical times.  It also empowered me to be a better advocate for Liam when in the hospital setting and provided me the insight and encouragement needed to do so successfully.

Fellow Heart Mom friend blog post - What Every Pregnant Woman Should Know and Ask - This is a post I just read yesterday, and it is a wonderful resource for pregnant women.  Because CHD's are the #1 birth defect,  "Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago's Children's Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know. "By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth."' - written by Alexa's mom

Blogs and BabyCenter Groups - These have been vital for information that is specific to each child individually, but also can help you to look to the future of your child's issue and help find resources specifically with what your child is going through.  Obviously I will be posting in more detail about the groups in my support post this week, but they are a good resource for finding out what to expect during hospital stays, procedures and surgeries.  The list of blogs I follow is on my sidebar.  These amazing families have helped me in all sorts of ways.  Please take some times to visit their pages!

I am also developing a resource page for feeding and nutrition as it relates to our heart kids.  Because of their need for higher calories and special feeding requirements if needed (like feeding tubes, etc.)  I feel there is a great need for this information to be in one place and specific to our heart kiddos.  If you need some immediate resources or have some you wish to share with me, please send me an email -  tara@johnsonheartbeat.com.  Just to mention a few sites, BabyCenter and Yahoo both have wonderful groups for tube fed children. 

There is so much information out there, hopefully this helps in a small way to start somewhere!!

Also, don't forget to be following the CHD Awareness Week blog events:

Interview with a Heart Mom and Dad - WhenLifeHandsYouABrokenHeart

Daily Heart Stories - Aly Jean's momma

Liam's story is shared today on my friend Michele's blog - BabyHarrisBlog - Her son Maxson has the same condition as Liam and they were born just a few weeks apart.  She is a dear friend who I hope to meet someday soon! 

This Heart Momma's Top Seven - #6 Perseverance

Perseverance -  

(noun) steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement.  Theology . continuance in a state of grace to the end, leading to eternal salvation

"And we rejoice in the hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope."  Romans 5:3-4 

Hope.  Perseverance creates hope.  For our family, this word encompasses our everyday.  Each day we face many challenges.  We are thankful that most days we only have to deal with the ones we already know.  By grace and and faith we will persevere whatever shall come our way, because He has already overcome the world.  Continuance in a state of grace...


Through the first two surgeries Liam faced, I was naive to think that once he had his repair surgery, everything would be fixed.  We would have several years before he would have to have his final conduit placed, and between that time his feeding issues would disappear and everything would be normal for us....finally, a normalcy I had longed for.  I put my hope in that repair surgery, lacquered it with expectations and looked forward to a new future without worries of heart problems.  When October 26, 2010 rolled around, we were in for a suprise.  Our routine cardiology visit turned into a nightmare when the echo showed something was wrong.  It felt like our bad dream rewound and started over from the beginning.  All those hopes and expectations replaced again suddenly by worries and fear.  That was the day I realized my expectations and dreams for our family would never be the same.  


You see, there is no "fix", no magic cure for CHD's.  Yes, we have surgical intervention to correct issues, but nothing is for certain.  What works for some children may not for others.  And, with surgery comes a host of complications in itself.  


Yet, we stay the course.  We follow protocol, obey doctors orders, seek advice and keep on keeping on.  How?  Because we persevere.  And we persevere because we love.  I know our sufferings are not in vain because I know who I serve.  A loving God, who sent His only Son to die for me.  Love in it's perfect state.


"(Love) Always protects, always trusts, always hopes, always perseveres." 1 Corinthians 13:7

This Heart Momma's Top Seven - #7 Awareness and Advocacy

Congenital Heart Defect (CHD) Awareness Week!

I decided to do a post each day on my top seven things I need to be the best heart mom I can be to our little CHD warrior!  The goal of my posts this week is to share my experiences being a heart mom, offer some resources for heart parents and highlight some ways we can all help to spread hope and awareness.

So let the countdown begin!

Obviously, today being the first day of CHD Awareness week, my number 7 on my list is Awareness and Advocacy.  Such big words, yes indeed, but more so how important they are.  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.  So in my list this week, Awareness and Advocacy are definately needed by this heart momma.  Our child's hope and future depends greatly on the advance of medical technology and also the role of government in our healthcare system.

Without delving too deep in these subjects (which my husband would be a little better suited for!), I can offer 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.

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.  We also created Team Liam so we could simply spread the word while doing something good for our hearts, running.  Simple steps to spread hope.

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.

I also have an Advocacy page on my blog where I will be posting letters and information you can share to help spread awareness and advocate directly to our government representatives for change!

Simple steps can make a BIG difference!

2.6.11 - ANOTHER Snow Day!

We had a snow/ice week here in Texas....it was crazy.  Schools were out all week except Monday, and it didn't get above freezing until yesterday.  So of course, we got out and had a little snow fun!

Daddy built Liam a mini-igloo....

 

 

 

 

But built a man-size igloo with his friends first!  It was pretty amazing!

Tomorrow starts CHD Awareness week!  Remember to come out and join us at Durkin's Pizza in McKinney tomorrow night for a ALH fundraiser!! 

Spread the Word - It's COMING!!

CHD Awareness week, that is!  

February 7-14 is Congenital Heart Defect Awareness week!

Heart month has officially arrived!!  Our week of the heart month to spread awareness of the most deadliest form of congenital defects is coming soon!  There is a LOT going on, both locally and throughout blogland to help spread awareness, so get your pen and paper handy!

Monday, February 7 @ 6:30 pm - Dinner at Durkin's in McKinney, TX - This is a local event whose proceeds will benefit the Amazing Little Hearts Support group that serves our heart home hospital, Medical City Dallas.  Join us for dinner and help support a cause and raise awareness!!

Saturday, February 12 @ 10 am - 4 pm - Blood Drive at Medical City Children's Hospital, Dallas - Many of our heart families depend on blood products to help their child through various surgeries.  Come out and donate!

Monday, February 7 through Sunday, February 14 - Interview with a Heart Mom or Dad - Blog Event hosted by WhenLifeHandsYouABrokenHeart.blogspot.com - Daily interviews with 7 amazing heart parents.

Tuesday, February 15 @ 9:00 am CST - Relationships - Blog Event hosted by WhenLifeHandsYouABrokenHeart.blogspot.com - Heart families will discuss openly the struggles in their relationships with friends and family through their journey with their child's CHD.  I will be "linking-in", so you can read about our experience with this topic!

And last but not least, an online experience, soon to rollout, will help spread CHD awareness and raise money for our favorite charity, The Children's Heart Foundation the week of February 14.  Stay tuned for details!  You won't want to miss it!

Looking for a way to get involved?  The BEST things you can do to help spread awareness is get the facts out - anyway you can!  Twitter it, Facebook it, tell a coworker, friend or family member what a CHD is.  The more people who know about it, the more lives we can save!  I created a page "CHD Facts" that has a list of just that, facts about CHD's.  Copy and paste them anywhere you choose!

Can you feel the excitement?!