Today, I am kicking off celebrating Congenital Heart Defect (CHD) awareness month, by sharing the family that first made me truly aware about the truths of CHD.
Killian "little warrior" was born on August 28, 2016. At 5 days old Killian was diagnosed with CHD. More specifically was diagnosed with branched pulmonary artery stenosis, hypoplastic aortic arch, and aortic stenosis near the sinotubular junction area. On December 15, 2016, at 3.5 months old, Killian endured his first open heart surgery. It was complicated and ultimately he was put on extracorporeal membrane oxygenation (ECMO). ECMO uses a pump to circulate blood through an artificial lung back into the bloodstream. Basically, is a heart-lung bypass support outside of the body. Within 24 hours Killian required a cardiac catheterization (CATH) due to an unexpected complication from his heart surgery. The CATH was done to balloon his pulmonary valve and branched pulmonary arteries to get a better view of a blocked coronary artery. Following the CATH, Killian immediately required a second open heart surgery to modify the original repair. Killian spent 5 days on ECMO and 20 days in the cardiovascular intensive care unit (CVICU) at Phoenix Children's Hospital. Celebrating his first Christmas recovering from 2 open heart surgeries.
Sadly, in the months that followed it was learned that Killian's heart did not adjust as well to the surgery as was hoped and needed his care to be transferred to Stanford for further treatment and additional surgery. The truth is that Killian had a unique combination of issues that are not easy to treat. After the first set of review from Stanford, Killian was scheduled for surgery at Stanford in August. But after another follow-up appointment at the end of April 2017, it was learned that Killian's need for a 3rd open heart surgery was needed sooner than later.
On May 8th Killian had a second CATH procedure to help prepare for his open heart surgery. Then on May 10th he endured his 3rd open heart surgery. A surgery that lasted 15 hours. Killian needed 22 patches. 10 in the left lung branches, 1 on main artery and 11 in the right lung branches. Prior to surgery Killian's right ventricle pressures was 140s. His doctor was hoping that with this repair to get his pressure to half that, so 70s. Normal pressure is considered 25. After surgery Killian's pressure in his right ventricle was 25. Killian had normal pressure! Ultimately, his surgery could not have gone better.
On May 12, 2017 Killian's mom posted this on Killian's facebook page. "12 years ago today I lost Colin my precious baby boy to Open heart Surgery. Its still SO hard to understand the why. I am blessed he taught me more then I would realize. Today Killian fights to recover from a 15 hour open heart surgery. I realize now how I have become stronger & how to be the best advocate for Killian.
Colin is greatly missed but not forgotten. We talk of him often & much more this week then ever before. Mommy love you little one. Killian had a good night overall, his lungs are junky but that is to be expected for the trauma they endured with the 22 repairs her had. We are happy with where he is at for the time being. His bp is getting better & a few meds have been changed. This boy is a fighter! He will kick CHD's ass! I will not lose another child to this. His brother Colin gives him strength from above."
Today Killian is 3.5 years old and absolutely fits his given name which mean "Little Warrior." He has endured the impossible and is thriving. He is still being tracked and monitored often with routine follow-up appointments. But for now, he needs no further surgeries or procedures.
To read more about Killian's story visit https://www.facebook.com/KillianLittleWarrior.
The truth is this family has 3 children with CHD. Colin died during open heart surgery at 6 weeks old. Callie who is 7 years old and is living with CHD, and monitored yearly. And Killian. CHD is not rare.
In My Heart : A Book of Feeling by Joe Witek
This is the perfect book to share to kick of CHD awareness month. A book about the heart, just not the anatomical one. But all the things our hearts can feel. This is a book that Killian has been read over and over again, and that his family wanted to share with his story. Our family also loves this book. This book shares lots of new and old feelings. And how they may feel to you. These feelings, words, give a child the power to express what their heart may be trying to say, but are not quite sure how yet to express it. This book is wonderful in helping a child explore their expressions and be able to better identify how they are feeling or how something makes them feels. This book is full of powerful illustrations and highlights a heart-shaped cut-out on every page, that gets smaller with each turn of the page. The overlapping cut-outs create a beautiful rainbow, which is very much like our wide range of expressions and emotions. No two are the same, just as no two colors are the same. Each just a little bit different.
"Sometimes my heart feels like a big yellow star, shiny and bright. I smile from ear to ear, and twirl around so fast, I feel as if I could take off into the sky. This is when my heart is happy."
YouTube reading of In My Heart
Age : 2 - 4
Grade : P - 2
This book can be purchased for donation from our Wish List: 366 Days of Books Wish List
Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326
Paypal link : Paypal.me/pumafamily - Please notate Book Drive