No Words...Just Tears...God's Love Always!

     We recently just had our Six Month Cardio visit.  What does that consist of you ask?   Well it is a long day of tests, updates, and patients!  Some CHD children have to go weekly, monthly, every six month, or yearly.  My CHD daughter has flip flopped over time.  When Cora was born and finally got to come home our check ups were weekly.  She was on a lot of medication and blood thinners that required her to have tests run weekly.  As Cora grew her appointments leveled out to 3 months, and then more recently to 6 months.

     Having a CHD child you must be prepared for appointments that take three hours instead of 30 minutes.  All the while praying for The Lord to take away your worries  and fears!  My goal is keep Cora's mind off her fears.  Almost being 13 she knows more about her body and what could happen to her than most children will ever have to.  So as her Mom it is my job to keep her calm and not over think the situation.  

     Cora's day usually consists of an EKG, Echocardiogram, X-rays, Oxygen Stats tested, and then a Cardio doctor visit.   After the Cardio check up we sit and wait for everything to be reviewed by her doctors before they come in and let us know what the results are.

     This month's( December) visit was not one of our better ones.  Cora has some irregular heart issues and was decided to be out on a heart monitor for a month or two.  She wasn't real happy knowing she had to wear it all the time, except sleep and showers, but she has adjusted well.  As for emotions, well Cora has her good days and bad.  Right now she says she is just trying to understand.  She is such a trooper, and I completely understand her emotions.  We continue to pray together and cast our worries to The Lord!  Some days well.....there are no words....just tears......knowing we have God's Love always!!

Blessings until next time.

Drena

     

 

The Spirit of The Season!

     The countdown until Christmas is on! Everyone is in a crazy rush to buy presents for all.  Some purchases large, some small....everyone with the same goal......buying buying buying!  Isn't that what makes people happy?  Giving the gift of wants?  Pleasing with the instant gratification and wishes of all our family?   Hummmmm.........Never thought of it that way, huh?

     What about the spirit of the season?  You know....the spirit of Jesus.  The celebration of Jesus' birth, the spirit of hope and miracles.  The Christmas magic!  The joy of simply spending quality time with family, sharing stories and making new memories!  This is the time of season where things are magical, and hearts soar!  People are a little extra generous and kind!  We all tend to make prayers requests in hopes that something a little extra special comes true during this magical season.  So...what is your Christmas wish?

     Well for our family the Christmas prayers have been the same for 12 1/2 years now!  Our Christmas prayer isn't just seasonal but all year through.  It is for all Congenital Heart Defect children to keep fighting their battle believing in Jesus, and know that God will always take care of them!  

     We must all remember and keep faith that the spirit of giving, and healing should be a year round prayer, not just one during the Christmas season.  That Jesus is just a prayer away, and for CHD children they need not just the medical treatment, but prayers of beating and winning the battle!  

     So this season my prayer remains the same, with one additional.....please make your wish and prayers something near and dear to your heart!!  Not something materialist or fading!  There are so many children and adults living with a Congenital Heart Defect that battle each day.  Arming them with a prayer for another day makes more of a difference than you know.  Take it from this CHD Momma, I know first hand that prayers can turn into little kisses from God!

Blessings until next time!

Drena

Finding God's Love!

     Oh boy where do I start?  From the time I understood what love was and how complicated it was I was always very guarded.  I made sure not to get to close to it, or let it consume me.  When I met my husband I let a piece of that wall down.  I thought for the first time I was understanding, accepting, and letting love into my heart.

     Then I let Jesus into my heart and another piece of my wall broke away.  I finally felt what love was and realized I was, and had been, missing out on a lot over the years staying so guarded.  When I thought I had finally reached a pinicale moment accepting love and welcoming it into my mind, heart, and soul, I gave birth to my first daughter!

     Looking at that beautiful baby girl I felt a love completely unknown to me.  I loved her with everything I was, yet terrified at the same time.  I had already known she had a congenital heart defect in utero, and had prepared myself to be a little distant.  But hearing her cry for the first time, and then seeing her beauty......I saw God's Love right before my eyes!

    Sure it is a risk to love!  I know first hand and know I spent a lot of my youth protecting myself from it.  I can tell you I was truly missing out on so much!  With everything in life....if you don't task the risk you may never reap the reward!

    I am so glad God opened my eyes years ago!   Jesus accepted me!  Forgiving me of my foolishness, and helped make me into a better person today!  But most of all, I am so very thankful that with Christ in my heart, I have learned that a Mother's love is something magical and perfect!  I wouldn't change my daughter in anyway!  God knew what he was doing when he made and gave me my Cora! She may not be perfect to most, or meet the norm in society, BUT.......Cora is my perfect!  She makes my heart sing full of love and joy every single day!  Only now have I found God's true love!

Blessings until next time!

Drena

Changing Seasons!

     With the season changing everyone is preparing making sure everyone in their family has coats, hats, warm clothing, and anything else you can think of!   Our household is the same except, there is an underlining concern with every season change.  

     The fall and winter months are the seasons of most concern for most, I'm sure.  Not just the change in temperatures,  but the sickness that start flowing everywhere.  Flus, stomach bugs, colds, fevers, coughs, the list goes on and on!  I am sure if your like most parents you stock up on over the counter medication. You know...just in case!   I wish it was that easy for a parent like me!!

 

     Fall and Winter are the most on edge seasons for me having a CHD child!  For my daughter taking over the counter medicine isn't much of an option.  Since Cora has such a multiple intricate condition, and no immune system, over the counter medications are pretty much out of the question for her.

The fear of a common cold for Cora could become pneumonia very rapidly.  This could then lead to hospitalization and well....you can fill in the blanks from there!  

    We have been blessed to avoid such extreme obstacles, which I strongly feel has contributed to having her on Amoxicllian since birth.  This medicine has helped aide Cora's body in fighting off the little things a person with a immune system would fight off and, not really give it a second thought.  

     Having a child without an immune system is very difficult, and many just don't seem to get it.  I try to be patient with many and smile when they say I am silly.  But knowing a common cold for most could kill my baby is a very very hard pill to swallow, let alone face every single season.

     But I try not to dwell on this fact.  I arm my daughter every morning the best way I can.  I  pray over her and remind her of her risks and what she must do to keep herself as healthy as she can.  Once I send her off I become a Momma prayer warrior all throughout my day!!

     My family loves the snow, and holidays!  We look forward to spending time with friends and family!  But don't think for a second that I'm not doing my homework on what illnesses are "trending", and who has just gotten over what.  I am always looking out for the best interest of my daughter first and foremost, but I have a secret weapon!  I know The Lord will ultimately take care of  my CHD daughter, and all who she encounters!  

Blessings until next time!

Drena

     

Leaning On Prayer!!

     This past month and a half has been difficult for my sweet girl...which has now worked its way to taking its toll on me.  Oh how I wish I was so strong all the time...but I am weak and fall short often.  I stay strong in front of my daughter to ease her worry and fear.  Inside I am a mess some days.  I have learned worrying gets me nowhere,  so I cast my worries, fears, and everything else to The Lord.

     I know I have said before but, I am not a person who shares my emotions often, but believe me I have more than I know what to do with.  I pray and pray a lot.  I speak to The Lord in the car, in the shower, when I lay in bed at night, always.  I pray and pray all the time.  Sometimes when I know I am alone, knowing I won't be "caught",  I sit and cry.  No word spoken to anyone just my pleads to The Lord through my tears.  Lately it has been my release from being strong 24/7 for Cora.  

     Then last night I decided to get on Pinterst and as I scrolled down just a touch I found the below scripture from Psalm 56:8.  It did so much for me.  I could feel God speaking to me, answering not just my spoken prays, but my tear prayers as well.  I picked up my Bible and turned to Psalm 56:8 and began reading.  I felt The Lord hugging me, letting me know that he will be with Cora and care for her.

     Now I can't say there aren't moments when I look at her, that I don't feel hopeless....Knowing I am unable to take away her chronic pain, her palpations, her breathing hardships, or any other health obstacles she is facing.  But I know with my constant prayers and appreciation for the Glory of The Lord..."I can do all things through Christ which strengtheneth me." Philippians 4:13.

Blessings until next time.

Drena

Finding Faith!

     So my earlier blog I posted my struggles in faith during my beginning pregnancy with my CHD daughter, Cora.  I debated sharing this information, but felt moved to share, so everyone can see my journey of struggles.

     For many years I was a surface Christian as I call it.  I knew very little about my faith, but portrayed  to others that I new more than I did.  Really, I was a lost soul.  Then God got through to me.  He didn't give up on me, and saw my little seed that needed nourished, educated, and loved.

     God began putting people in my life that I constantly learned from.  I was given my first Bible by my now sister in law.  I began reading it immediately craving to learn more.  I discovered so much about God, Jesus, and myself.  I began attending my Grandmothers church, and discovered the power of prayer, and forgiveness.

     Years later I married and was blessed with the pregnancy of my first daughter, Cora.  I was on cloud  nine.......then everything fell apart.  Learning early in my pregnancy all the complications and likeliness of the baby I was carrying would die after birth, I felt my world crumble.  I was frightened, confused, and very angry.  I felt I was being punished for all my prior sins.  That everything I had learned and diligently lived my life for serving The Lord, was for nothing.  I honestly felt God closed my faith door and left me in the cold all alone and unarmed.  I lost faith in myself and felt let down. 

      However throughout my pregnancy everyday I prayed for forgiveness.  For every single sin and mistake I could remember making, and begged for forgiveness, and a miracle for my unborn baby.  My first pregnancy and I wasn't that glowing happy Mom to be.  Nope.....I was bitter and angry with every person that was a Mom to a health baby.    I didn't understand or stop to pray about it.  I just let all that anger, resentment, and self pity fester inside.

     Then The Lord revealed himself to me.  Not directly but through the miracle of my daughter's birth. Her birth was scary and almost a heartbreaking experience, but he showed his grace and love for my daughter and myself.

     12 years later, 4 open heart surgeries, and learning how to coop with a twisted brain stem, no immune system, and cognitive memory obstacles, The Lord is still blessing my daughter, Cora, and myself with grace, courage, and faith.

     Though our days are jammed packed and the time flies by.  The Lord shines a light onto my daughter.  That light reminds me that The Lord's miracles exist, and his grace is everywhere.  I can NOT look at my Cora and not believe in God's existence.  She is a true miracle, not just by evaluation but from her doctors as well!  For he alone gave me my Cora as she is, and for that I pray gratitude, and praise daily.

Blessings until next time.

Drena

Losing Faith!

     Being a Mother to a child with a complex congenital heart defect is a roller coaster day in and out.  On the surface I must be strong for my friends, family, and my daughter Cora.  Underneath I have, and occasionally still, question myself as a parent, my emotions, my fear, my guilt, and my faith.  It isn't something I am proud to admit, but it is this Mom's truth. 

     There are days that my faith is strong and I feel I can conquer anything set in my path...but then there are those other days.  Those are the days that are more present than most and I feel worn down, confusion, sadness, and helplessness.

     When I was first given the news about being pregnant with a child with so many problems.  From a heart defect to a twisted brain stem, I was at my lowest in my faith.  I felt that God was punishing me and my unborn child for all the sins I committed during my life leading up to my pregnancy.  I questioned the love of God, and the Bible as a whole.  I pushed people away and built a safe castle wall around my heart, and my mind.  I still continued my surface appearance of having it all together...many didn't know I was pregnant with a child with so many obstacles, and I didn't wish to share that.  I built a safe place for myself in my mind. A dark lonely, sad place.  But at that time I felt as long as I didn't share it with a single sole I would be fine.  No judgement, no angry let down people.  I figured God turned his back on me so I would release everything my Grandma, and my church had taught me about my faith.  

     Looking back now it really was my lowest point in my faith journey.  I have never spoken about this to a single sole, fear I suppose.  But I realized something recently.  During that time I felt so alone...I was alone.  My family and friends couldn't relate because they hadn't faced anything like this.  I use to wish just one person during my journey then would surface and enter my life to be my comfort.  Well....that person didn't come, but The Lord didn't leave me either.  So if I can find the courage to take my castle wall down one stone at a time, I may be able to help someone else who is facing what I have faced.  Maybe I can give that one person a glimmer of hope I so desperately needed back then.  I can show them that thou you feel all alone, The Lord is with you!  Holding you, carrying you, loving you!!

      I can assure you it is a difficult struggle to face each day with a child with a complex congenital heart defect.  Oh yes it is draining physically and emotionally as a Mother.   But there is no way what so ever I would change one struggle, one tear, or any of my stumbles along the way, because God gave me my wonderful daughter.  The miracle child that I was told had less than 20% chance of life after birth.  God new what he was doing, and I am grateful and reminded daily what Gods blessing is.

     Blessings until next time!

            Drena

 

   

Changing View Points.....

      All those who are parents know that being a parent can be challenging, stressful, difficult, and demanding.  Being a parent of a Congenital Heart Defect child is all those things and more.  I found myself, as a parent of a CHD child, advocating 24/7 trying with my every blessed day educating people in some way.   It is a tiring, long process but, I feel my daughter, and other CHD children deserve it. 

   

     With that being said I stopped writing and blogging a few months ago. I decided to take a cibaticle from writing and advocating as a parent.  I decided to take a step back and see life as my daughter sees it. 

      Over the past few months, walking in my daughters shoes, I have discovered more about not just my daughter, but what life is like for her as a CHD tween.  I thought my heart ached for her before......my mind was blown by my discoveries.

      It amazed me how uneducated children are when encountered with diversity, and discover one of their peers has special needs.  The disconnect from The Lord and the word of God!  The boldness children have speaking freely in front of others, oh yes including me....Cora's Mom!

     Hearing children speak less than pleasing words to my daughter has been a huge pill for me to swallow.  Momma bear has wanted to come out when I have been a witness to these conversations.  But I literally bit my tongue and waited for Cora's reaction and responses.

     It is appalling to have been a witness physically and emotionally to these children who speak inconsiderately and disobiently.  The one that has stuck with me the most and makes my stomach turn and my body cringe is : " You will never be normal.  You are damaged goods Cora.  No one will ever want you."  

     I can't believe young children speak that way to others and have no moral issues with the cruelty seeping from their mouths, or the verbal beating they are giving to another.  That day my heart broke.  I wanted, as a grown woman, to grab that child and smack their mouth, and pray scripture over them.  I looked at my dear daughter, my miracle God gave me, and saw her glassy eyes as she let these children speak.

     I stepped forward not able to allow this to go on anymore, but Cora looked up at me and with her beautiful blues eyes pleaded me to stop.  With that I watched my daughter respond to those awful, awful words.

    She stepped closer to this child and proceeded to respond with more grace than I have ever seen a 12 year old have.  I could see she was upset, and broken by these children.  But I also saw God's grace working through her.  Watching per center herself and gain a little control her quivering voice spoke magic to my ears.  Cora didn't put down those children, or call them names.  Instead she informed them that she was God's miracle and her scars are not just proof of that, but they are also God's love.  It was so beautiful.  The unfortunate result was that those children didn't really listen to her, or care what she said.  At that moment the gears in my head shifted.

      Maybe I need to change my coarse of educating?  Maybe I need to be educating all these children instead of the adults?  What if all the advocating I have been doing was really for nothing, because those parents I have spoken to deeply advocating for CHD didn't seem to take the time to teach their child.  

      With CHD's killing more children than all childhood cancers combined. We need to educate and spread the word about Congenital Heart Defects, and get some funding to research this defect in more depth.  So I will continue my advocating for the hope that I can touch just one parent, or just one child.  That maybe I can plant a seed within them to carry and later to share their new knowledge with others.  Spreading Congenital Heart Defect Awareness!!!  Maybe then....just maybe, the experiences my 12 year old has faced thus far in her life with her peers, will cease to exist!!!!!

Blessings until next time!

Drena

     

Meeting Jesus!

     I have been working on a book about Cora for years now.  I have stated previously that writing this book has been a very difficult emotional journey for me.  The other evening I was rereading some of what I have written and came across a section that I wanted to share.  So below is an excerpt from my current book in process.  

    "Sitting in this cold sterile room looking at my sweet innocent 4 year old I begged God to heal her and make her ok.  The surgery itself was very difficult on Cora and she was touch and go now for several days.  I sat fixated on her precious body and so wished I could take her place.  Nodding off and on for hours my hubby touched my arm and gestured to Cora.  I opened my eyes to see those beautiful blue eyes looking at me.  She couldn't speak but I could see was happy to see us, as we were overjoyed to see her awake!  

     Fast forward to 3 days after when she was feeling a bit better and her voice was free to speak.  We just finishing watching Snow White, Cora just loved those dwarves, when Cora said to me " Mommy I met Jesus."  I turned to her and my mouth wide open said "huh?"  

Cora whispered with her scratchy voice " I met Jesus Mommy.  I was in the corner of the room and I walked to Jesus where it was sunny, and he smiled at me and spoke.  He told me that I couldn't stay, it wasn't time."  All I could do at that moment was cry and squeeze my baby girls hand."

     When I am having a bad day and feel like I just can't make it through I remember that sweet conversation with my 4 year old CHD child after her 4th surgery, and I thank God for letting her stay, and I thank Jesus for greeting her, comforting her, and returning her to me!   I will never be the same, nor will I ever doubt the power of faith!

Blessings until next time!

Drena

CHD Advocating!

      Who doesn't support their child in life?  I am sure no one, right!!!!!  How about advocating?  You say what's the difference?  Well....Supporting means willing to donate money, time, knowledge, as long as its a good cause.  Advocating is someone who speaks or writes in support of defense of a cause, or person.

     Advocating is so important for different causes, right?!  How else will you spread the word?  So why is advocating so important to me?  Congenital Heart Defects are!!!!

     My daughter was diagnosed with a severe Congenital Heart Defect (CHD) in utero, 12 1/2 years ago.  When my husband and I were given the diagnoses about our unborn child, I had absolutely no idea what it was, or what effects this heart defect would have on my child once born.  Sure I had heard about a lot of diseases, even childhood diseases, but nothing about CHD.  It amazed me to learn very early that 1 in EVERY 100 babies are born with a CHD.  It also blew me away to learn that Congenital Heart Defects kill more babies each year than all childhood cancers.  Even the weight of my child at birth has an affect on her life span. 

    How many parent to be, or new parents do you think about this? Not many if any at all I'm sure!   These were just a few things I discovered while pregnant.  As my pregnancy continued and my unborn child was diagnosed with more and more obstacles I realized something very important......How many more parents are going through this and are absolutely caught off guard and uneducated about Congenital Heart Defects?

     As my daughter has grown and encountered so many obstacles, health related and social, I have discovered she needs an advocate!  As her parent, I strongly feel that everyone needs to realize that children with Congenital Heart Defects may have some serious obstacles.  Some they many never be able to overcome, but if people aren't educated about this disease it won't ever be given the attention it needs and the funding for research to aide in assisting future Congenital Heart Defect children!  

     So I close with this very important question to you personally.  What are you advocating for, and how has it touched your life?

Blessings until next time!

Drena

    

     

The Sobering Truth!

    How many parents have thought about their child dying before themselves?  How many parents have had a sit down meeting with their child's doctor to be told about their child's life expectancy?  I have!  Let me tell you, it is the most gut wrenching thing I have ever experienced!!   It is something I never imagined in my wildest dreams would ever have to think about.  So my question...more to myself than others....how do you process the short life expectancy of your CHD child and carry on each day with this information?

     I look at my daughter each day and thank God for her and another day of blessing with her.  I must be a strong Momma for her, never showing my weak side, or let on that her time is so much more precious because she will likely leave me, our family, sooner than we'd like.  

     For years I have been in denial.  Cora is doing far better than her cardiologists would have ever thought, but things are still off.  That leak still persists, those moments of breathing troubles and blue lips still occur.  The palpations that come on from no where, creep up more often.   And that little cold seems to rear it's head more often.  I use to solely focus on keeping Cora cold free.  Without an immune system she takes risks each day she leaves the house. For that matter, each person she comes into contact with.  But for Cora it's  just another day as a preteen.  She knows something as little as a cold could be devastating to her, but she pushes forward.  I have been upfront about her setbacks, her oxygen stats, what a common cold could turn out to be for her.  But I haven't, and decided not to burden my 12 year old daughter with the discussion of premature death.  My hubby and I try daily to teach her about her faith and the trust of God.  The glory she is to him and us, and that someday everyone, including her will return to our home, with God and Jesus.  

     So to answer the question, how do you process the short life expectancy of your CHD child and carry on each day with this information?  I bury the knowledge deep down, I let my daughter be a kid, and put my fears, tears, and heartache in my faith, and the Most High God!!

Blessings until next time!

Drena

Emotional Roller Coaster!

     So the past few days I have been a little more emotional than usual!  I admit that I am getting worried about school starting for Cora.  Entering middle school is a big deal for any preteen/teen.  Adding the complications with learning into the mix makes the hurdles so much bigger!  When I start thinking about all the educating I need to do with her new teachers and pray they will hear me, and not disregard me as an overprotected Momma.  Well.....my heart starts beating more rapidly and a little voice of doubt creeps into my thoughts, and lately I cry!!

     Then there is the social part of middle school....oh dear!  I remember those days and how much I wanted to meet new kids, and make many friends.  It was challenging during my preteen/teen years and I didn't have any social issues.   Cora, well, she has the added hurdle of having social issues.  She is such a sweet girl but so very blunt.  She doesn't have a sensor to stop those things we all think in our head but KNOW we should never say aloud.  The result for Cora.......she doesn't have many friends who will put up with that, or the emotional ups and downs she has every few hours.  So what do I do? Is this normal for CHD children?  How do I coop?  How does my darling daughter coop? Has anyone else dealt with this with their children?  All questions that creep inside my mind when I pray continually!

     Even though Cora is 12 years old, almost 13, I still feel the need advocate for her in every single way possible!!  For some have looked at me half crazy, while others think I am way over protected.  I have even had a parent tell me they thought I need to back off and let Cora realize how cruel life is, that would then change her bluntness.  Even if I would do that, which I would NEVER do, her social issues are deeper than that.  This social hurdle isn't because she is being " hard headed", it is due to her Complex Heart Defect.  I pray for those who need educated on Congenital Heart Defects, and  I pray The Lord changes the narrow mindedness of many when it comes to understanding.  These are truly real conditions and hurdles not to be taken lightly!  To pass judgement on a child with a CHD is disturbing and warrants educating and prayer!

Blessings until next time!

Drena

     

CHD Kid's Challenges--Cognitive & Social

     It is amazing how as my sweet CHD daughter continues to grow she faces more obstacles daily.  I had no idea when she was born with a complex heart defect that her obstacles would exceed beyond the health part.  Learning late in her school career that she had so many other hurdles, cognitive and social, I felt once again I was behind the learning curve and letting down my girl!  If you feel this way you aren't alone, I have been there and I know the emotional roller coaster you are embarking.  

      I first discovered Cora was having issues in school when she wasn't meeting the cognitive and social benchmarks.  The teachers voiced their concerns, but nor the teachers or I, realized that due to her complex heart condition these development issues would arise. After a year of struggles with her at school, praying for some answers, I came across some research that God lead me to.  It spelled everything out for me and from there I began devising a plan of action for her.

     RESEARCH DISCOVERED

    

    * A child with a severe CHD and has undergone a procedure, Fontan, is likely to require additional      

assistance and extra care during school.

     * A child with transposition of the great arteries show lower scores in math, learning, and general knowledge tests.

     * Children with hypo plastic left heart syndrome have lower abilities in math, reading, and spelling.

     * A child with CHD may be more inattentive, hyperactive, and have signs of ADHD during school and in the classroom.

      So I have some bulletin points for the school to help aide in my daughter's school career, and educate the teachers about CHD and my daughter.   I wanted to share them with everyone in case you are just not sure where to start!  A lot of mine was trial and error but I have come up with some bulletin points that have worked, especially this past school year.

                                                    Bulletin Points 

  ** I informed Cora's teachers of the nature of her complex heart condition.  the impact on her performance at school inside and outside of the learning classroom.

  ** I keep contact throughout the year with Cora's teachers to keep them posted on her school work, her struggles, her successes.  From there assignments can be adjusted, and additional intervention can occur.  This was wonderful this past year for our family!  The teachers were so attentive and on point assisting and adjusting her IEP's when necessary!!

** I had our cardiac clinic school intervention team come to our IEP meetings to discuss in detail how the complex heart conditions effect aspects of learning and social behavior.  This was something new we did this year!!  It was so worth it!  Having an extra advocate was wonderful!!!!

     Since school is right around the corner my next post will cover practical ideas on how to coop with a CHD child with learning issues.  You don't want to miss it!

Blessings until next time!

Drena

      

      

Types of Congenital Heart Defects!

     I have had many ask me what type of congenital heart defect my daughter has, and how many are there?  Not being able to answer all those questions, as a CHD Heart Warrior Mom, I felt sad, so I decided I better do some research.  One of the first sites I discovered long ago that has wonderful information, pictures, and different types of Congenital Heart Defects is www.mayoclinic.com. 

     Listed below are 15 most common Congenital heart defects.  Please keep in mind that your CHD baby may have been born with only one defect or several defects.  Some defects may require little or no treatment while others may be life threatening and require surgery immediately upon birth. 

1.Tetralogy of Fallot

2. Hypoplastic Left Heart Syndrome

3. Atrial Septal Defect

4. Patent ductus arterious

5. Tricuspid atresia

6. Atrioventricular canal defect

7. Ventricular septal defect

8. Transposition of the great arteries

9. Pulmonary stenosis

10. Truncus arterious

11. Patent foramen ovals

12. Ebstein's anomaly

13. Chambers & the valve of the heart

14. Pulmonary artresia

15. Coarctation of the aorta

Blessings until next time!

Drena

Startling Statistics and Fact about CHD'S!

Blessings until next time!

Drena

The Lord's Calling!

     When I began this blog my intention was to educate others.  To spread knowledge of Congenital Heart Defects,  but I have learned something along this journey about myself!   Reflecting, I believe this is God's way of touching me.  I began writing a book 11 years ago about my Cora but have never been able to finish it.  The Lord has been reaching out to me for so long but I haven't heard him until recently.

     From the moment the doctors began informing me of all the complications my daughter would have the moment she would be born,  I buried all those emotions inside this hidden chest deep down.  I appeared to all strong, I was strong, I have been strong for 12 years.  I haven't wanted my family to worry.  For years I have buried my emotions and how I truly feel about living a day to day life with a child with a CHD.  I always felt who has time to hear me, everyone else has difficult times too, why should I burden others with mine?  As I watch my beautiful daughter grow I feel her more and more.  My heart aches with her, her emotions are my emotions.  I cry more now then I did after her 4 open heart surgeries.  Even though I have been blessed by God with 12 wonderful years with Cora I still hear in my head what her prognoses on a long life is, all the unknowns.  Trying not to focus daily on that is harder as I watch her grow.

     I still climb up into her bunk bed at night and check to make sure she is breathing.  I still pray every morning that she will bless me with another day full of her smiles and laughter when I go to wake her up.  I still worry the heat will be to much for her, that her lips don't turn bluish purple to many times during the day, that she doesn't have a lot of chest pains, tingling in her hand and arms, and that little cough she happened to pick up doesn't end up becoming something much worse.  My soul aches as I watch Cora struggle in school, making friends, and playing sports.  I feel that my hands are tied behind me everyday she struggles with simple things most kids her age can do.  I tell her daily I love her and assure her she is doing great, but that just isn't enough for her some days.

     So why tell everyone this?  That's exactly what I thought, who's going to care?  I believe The Lord is wanting me to open up to help other parents who may be struggling like myself.  Even if just one parent is touched and helped from my struggles I believe God has helped me do my job....my purpose for blogging and attempting to finish my book.

Blessings until next time!

Drena

CHD Resources--Where do you start?

When I was told that my unborn child hasd a congenital heart defect I had no clue what that meant.  Each time I went back to the doctor and something additional was diagnosed I felt more clueless than the previous time I had gone.  So my husband and I began researching online to get as much information as we could on all the diagnosis's that we had been given.  I hope this will help those who are struggling like I did.  Please know I have been there, with your mind swimming with so much information, yet not knowing really where to start or how to process everything.  This is for you, I want you to know I am here to not just to share my journey but to help others on the way.  Please see below for a few of the sites that we found Extremely helpful in our beginning journey.

** healthofchildren.com**

This is a fantastic site.  Once you bring up the site I found it easiest to go to the search engine and type Congenital Heart Defects.  From that the next screen you can narrow your search to your specific needs.  This site has a lot of details.  I still refer back to this site today.

   1. It has the diagnosis definition

   2. Description

   3. Demographics

   4. Treatment

   5. Prognosis

   6. Parental Concerns

   Plus more.....

**cdc.gov**

This is also another good site.  I did the same thing as the previous site, using the search engine. This site has some of the same items as above plus diagrams and pictures of the specific diagnosis.  I found this extremely helpful in determining what a normal heart looks like and what my unborn child's heart would look like.

     1. Facts about diagnosis

     2. Specific heart defects

     3. data/statistics

     4. Definitions

     5. Pictures and diagrams----nothing graphic, so no need to be concerned.

**tchin.org**

If you are looking for support groups, advocacy, plus information and brochures for CHD awareness this is a good site for you.

     1. Advocacy

     2. Community Center

     3. Brochures for CHD awareness

     4. Resource room

     5. Support Groups

     6. Information

Blessings until next time!

Drena

   

A Mom's Testimony--God's Miracles

     I recently was asked if I would write a testimony about my experiences being a CHD Momma.  Oh I have to admit I was nervous to do so. Not that I am embarrassed, more knowing I had to open up and express myself, reveal my soul.    Believe it or not my largest coping mechanism from the beginning of this journey has been not to acknowledge my emotions, keep everything in check, and bury it all.  So after praying over it this is what I came up with.

     Being faced at 19 weeks of pregnancy, my first pregnancy, that the baby you are carrying had a heart defect, was so much more than I could handle.  I kept a great front up for all but inside I was a basket case.  I cried myself to sleep and pleaded every moment I could during the day to please let this baby live.  The further I progressed in my pregnancy the more obstacles my unborn child had.  Knowing the percentage of my baby living after birth, less than 25%, I began to lose hope.  

     Delivery day came, it was a very difficult, emergency c-section with no anesthesia, day.  Our first miracle was the birth of our beautiful baby girl.  The second miracle was the doctors bringing her back to life, and the third miracle was getting to see her pretty pink skin, not blue like everyone said I'd see.  All those miracles in a matter of just a few minutes.

    Since that glorious birth day of my daughter in January 2001, I have been blessed with so many more miracles.  Four (4) open heart surgeries later, no immune system, and so much more, Cora has made it to 12 years old.  Her smile lights up a room, and her kind heartedness warms my soul.  We recently were baptized as a family, The Lord working yet another miracle. 

     Personally since being baptized God has unlocked my memory.  I had spent so long not dealing with the events of being pregnant, giving birth, and taking care of a CHD child, just burying everything was easier.  Now I have more memories of things that has happened, emotions I have never dealt with, and a better sense of the precious moments I get to have with my beautiful girl!  So when I stop and pause a moment I can only praise God for all our families miracles and know he has us in his hands!

Momma Don't Worry!

     "Momma don't worry."  The last words my daughter said to me Monday as she headed off to heart camp.  Cora has been going to Camp Joy's Heart Camp for years but this past Monday I saw my baby girl, in a different light.  She let me into her world for just a short time!

     The entire ride up she sang her music and danced in her seat, and didn't stop smiling.  When we were almost there she asked me if I knew why she was so excited?  Before I could respond she opened up her feelings to me. 

     "Heart Camp means everything to me Mom. It's the one time of year I can be me, and everyone is ok with that."  She proceeded to tell me "I can just be me!"  

My sweet girl continued to tell me that this one week each year she fits in.  " I don't have to worry that I can't keep up, or that I am tired, it doesn't matter because other kids have the same issues.  The best part, Mom, I don't have to explain my issues or my scar."  

     The part that took my breathe away was when Cora said, " Once a year I get to feel normal.  I know I don't fit in my regular life, but this week, I fit in, and I love it.  No worries, no being different, just being me."  

     Once we got parked at camp I saw her transform from the emotionally up and down little girl I see almost daily,  to a vibrant, outgoing, happy preteen girl.  To see her her shine, if only for one week a year, the way she shined when I dropped her off Monday, is worth every difficult day in between.

I miss her dearly this week, but I know she is so happy and God is protecting her.

Blessings until next time.

Drena

CHD Through My Eyes- A Mommy's View

Discovering you are pregnant with a child with a congenital heart defect......well there are no words to describe it.  Being pregnant with my first child, thinking I was going to rock being a Mom, was all I thought about.  Once I found out my child, the little sweet innocent baby inside me had a heart problem I felt like a complete failure.  My one job God gave me, I thought, was to protect this baby growing inside me......and I failed!  I was crushed, but being the person I am I never let anyone know that feeling until this post, today.

My journey as a CHD Mom has been very difficult but what keeps me in check daily is seeing what my daughter has had to go through since the moment she was born, and how far she has come.

My daughter, Cora, had a rough start from the womb.  During her growth in my belly she was diagnosed with Hetrotaxy Syndrome, AVSD, D-TGA, Pulmonary Atresia, Bilateral SVC, Common Atrium, No spleen, and a twisted brain stem.  Yes I have my emotional bad days but I look at how far Cora has come and realize my emotional mess is worth it because I love her so dearly.

My Blog, my posts, are my way of sharing my story and my hope is to educate people, friends, family, about our families ups and downs with having a CHD child.  but mostly my goal is to help those parents who may be struggling and feeling  alone, as I did and honestly sometimes still do.  Please know you CHD Mommy's and Daddy's you are not alone!

Blessings until next time!

Drena

CHD, what's that?

What exactly is a (CHD) Congenital Heart Defect?

     A congenital heart defect is a condition that develops early in pregnancy.  It may involve one abnormality or a combination of abnormalities in the structure of a child's heart.  

So what are some of the common defects?

     ** Holes in the walls between the heart chambers

     ** Abnormal Valves

     ** Abnormalities in the blood vessels entering or leaving the heart

     

Here are some startling facts:

     * CHD is the most frequently occurring birth defect and is a leading cause of birth-defect related     

       deaths worldwide.

     * It is estimated that40,000 babies are born each year with Congenital Heart Defect in the United 

       States.

     

**** My darling daughter is ONE of these babies born with a CHD!!!!!****

What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check to see if she's still breathing.

It means standing over her crib to watch her chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear her breathe.

It means that when you don't see the chest move and you don't hear her breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger-until you wake the baby and it stirs-and your thankful, so thankful that she's still with you.

It means feeling a huge sense of relief when she hears you and opens her eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out her medication and panicking if she spits some of it out.  How much did she spit out? One cc? Two cc? Then wondering if you should guesstimate how much more she should have and if you'd over medicate her.

It means checking her nail beds against your own to determine how blue she is today.

It means asking your husband, your mother, your sister, "Do her lips look blue to you?"

It means snuggling her in an extra blanket for fear she won't be warm enough.

It means worrying that even a sniffle could cause an infection that could harm her heart.

It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world, just to be a parent.

It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby's life.

It means praying your marriage is strong enough to endure the hospitalization s, separations, and grief.

It means praying for the will to live, even if your baby doesn't.

It means your own heart knows a pain, no parent should know.

It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands.

It means feeling strong, determined, and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child's accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion than you ever imagined.

It means we are all united by the same feelings.

It means that we all know the mixed up emotions of dealing with death- but more importantly of living with life.

It means that even though we are strangers, we are more to each other that friends could ever be.

1996, by Anna Jaworski