Monday, February 15, 2016

CHD Awareness Photo Challenge Days 1-15

 I have not shared anything on the blog for CHD awareness week like I normally do.  However, I wanted to share a challenge that I'm participating in during February.  Each day has a different theme that deals with an aspect of congenital heart defect awareness. I have included days 1 through 15 in this blog.  Thank you again for always supporting our sweet little heart hero. This is a special time for us and we work diligently to try to educate others on what it is like to live with a CHD.
CHD awareness month is here, so I will be participating in a daily awareness photo.  Day 1: diagnosis....Emma was diagnosed at 19 weeks prenatal with a severe congenital heart defect.  We would learn a few weeks later that the defect was Hypoplastic Left Heart Syndrome with intact atrial septum. I encourage all expectant mothers to ask about the heart during their anatomical ultrasound.  There are over 40 types of CHDs. Early diagnosis helps to save lives. ❤️

CHD Awareness Month Photo Challenge Day 2: Surgeries/Meds/Interventions: These five photos represent the five open heart surgeries Emma has fought through. #chdwarrior #mendedlittlehearts #chdawareness #RockYourScar #HLHS

CHD Photo Challenge Day 3: Family: We are truly blessed with supportive Family and friends who are like family. Scott and I truly do not know what we would do without their encouragement, love, and unwavering support.

Day 4: CHD awareness photo challenge: Hospital: Emma has been treated at both Children's Medical Center (Children's Health) in Dallas and Boston Children's Hospital in Boston.  The hospitals varied greatly in their structure and organization; however, what was not different was the care, love, and heart put into taking care of our precious Emma.  #chdawareness #cmc #bch

CHD Awareness Month Photo Challenge Day 5: Cardiologist:  Dr. Lemler has literally been with us since before Emma was born.  He has been with us during extremely hard decisions, sat at the hospital with us in the middle of the night during our hardest moments, celebrated with us during unexpected successes, come to our rescue more than once during inpatient stays and ER visits, answered panicked phone calls, and supported us throughout all of Emma's ups and downs.  We give each other a hard time, but we are honored to have him manage Emma's care. #chdaware #HLHS #cardiologist

CHD Awareness Photo Day 6: Hope: I could go on and on about hope, but I will just leave this here. We continue to hold on to hope and trust in God's plan for our tough little girl who was born with half a heart. #CHDaware #HLHS

CHD Awareness Photo Day 7: Red and Blue: What does red and blue mean to me? The diagram on the left shows Emma's heart defect at the different stages of palliation. Notice how the red (or oxygenated blood) and blue (unoxygenated blood) mix.  This causes Emma's  lower oxygen saturation levels which makes her appear blue. Red and blue are also the colors we use to represent congenital heart defect awareness. #chdaware #HLHS #hearthero

CHD Awareness Photo Day 8: CHD Facts: My Emma is 1 in 110....Are you CHD aware?  Every 15 mins a child is born with a CHD.  #chdaware #HLHS

CHD Awareness Photo Day 9: Awareness:  I am a coordinator for a group called Mended Little Hearts of Dallas.  I do this to share hope, education, support, and awareness.  Emma is the reason I am so passionate about the work I do.  #chdaware #HLHS #mendedlittlehearts #RockYourScar

CHD Awareness Week Day 10:  #RememberOurHearts #CHDaware

CHD Awareness Photo Day 11: Favorite Quotes!  I have so many, but here are a couple. ❤️❤️❤️

CHD Photo Challenge Day 12: What I wish people knew: I wish people knew that CHDs impact more of a child's life than simply their heart. Due to Emma's CHD, she is challenged every day with developmental delays and other organ issues.  Also, I get asked frequently if Emma's heart is fixed. There is not a cure for her CHD.

CHD Awareness Photo Day 13: Heart Family: Being the parents of a child with a congenital heart defect can feel very lonely; however, meeting many other heart families along the way, whether in person or through social media, living next-door to them in the hospital or meeting them at a heart event gives you someone to relate to, vent to, cry with, and celebrate with. #CHDaware #heartfamily #mlh

CHD Photo Challenge Day 14: Heart: When most people think of Valentine's Day , they think of hearts and love.  Don't get me wrong, the 14th of February makes me think of love and hearts and red and pink; however, since 10/4/10 when I think of hearts, I think of my half a heart hero.  Her heart is shown in the top picture.

CHD Photo Awareness Day 15: Nurses:  we have been very blessed with caring, loving, and attentive nurses from the beginning. From our nurses at CMC to our nurses at Boston and home, Emma has been surrounded by amazing advocates that aid in her care.  I don't have pictures of everyone, but please know that we are so thankful for all of her nurses who worked tirelessly to help Emma get to where she is today.

Emma is doing well. She is very busy in her therapies and school. We continue to travel to the cardiologist every week for her PICC line care and lab monitoring.  Thank you for your continued prayers and thoughts.

God is good! All the time! God is good!