Monday, July 29, 2013

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.

    * 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!



Saturday, July 20, 2013

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 

     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!

Wednesday, July 17, 2013

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 purpose for blogging and attempting to finish my book.

Blessings until next time!

Wednesday, July 10, 2013

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.

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.....

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.

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!

Wednesday, July 3, 2013

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!