Every year, 100,000 babies don't make it to their first birthday because of CHD.
Callie Shay Harper Gullahorn | Heart Warrior of the Week

Callie’s parents went into their anatomy scan like most expectant parents do – excited to find out the sex of their baby.  Instead of a celebratory type of visit, they got a piece of news that they couldn’t have imagined in their wildest dreams – their little girl had congenital heart disease, multiple defects in fact.  Callie was diagnosed with pulmonary atresia with a ventricular septal defect (VSD), and an atrioventricular septal defect with ventricular imbalance consisting of dominant right ventricle and hypoplastic left ventricle.

Callie Shay Harper Gullahorn was born at 34 weeks on March 22nd, 2017 due to fluid build-up in her right lung. She spent 163 days in-between the NICU and CICU with multiple heart defects, GI complications, heart failure, and weeks of lymphatic fluid issues resulting in the need for 7 chest tubes.

This amazing little CHD Warrior has undergone 6 surgeries in her 11 months of life:

  1. A pyloromyotomy to repair the opening from her stomach into the small intestine, along with a banding procedure to alleviate intestinal mal-rotation and an appendectomy because her appendix was on the opposite side of where it should be.
  2. Open-heart Norwood surgery in which they placed a BT shunt to increase pulmonary blood flow
  3. A heart catheterization to create a game plan for her Glenn surgery
  4. Open-heart Glenn surgery to connect the superior vena cava to the pulmonary arteries
  5. G-tube placement and fundoplication to help prevent food from coming up (reflux)
  6. Heart catheterization

Although she has already endured so much, Callie will need more surgeries in the future. She has a heart catheterization scheduled for this Fall to check on the function of her heart and will require another cath to prepare for her Fontan surgery. Her open-heart Fontan will take place around age 3 and there still may still be a need for more surgeries after that.  She is currently on 9 different medications; they are hoping to cut out a few of those in the future, but 3 of them will be necessary for the rest of her life. Callie won’t be allowed to play contact sports, but her parents are hopeful her restrictions will be minimal throughout her life.

CHD, chd awareness, congenital heart disease

Her Mom, Brandi, thinks back on that hospital stay, and all their precious girl has been through…

Having two older siblings at home – 7-year-old sister Laney and 4-year-old brother Kason – made it even more difficult to handle everything that was being thrown at us. We knew that she would be born with a heart defect, but you can never fully understand exactly what you will go through. You especially can’t fathom spending almost 6 months apart from your family.

I stayed at the hospital during the day and on the weekends while my husband spent the nights at the hospital and headed to work at 5am each morning just so she wouldn’t ever have to be alone. That takes a toll on everyone in the family, but we got use to our new normal and made it work for as long as we needed to. Her brother and sister visited often and would come hang out after school.  Big sister practiced her reading and brother watched the nurses’ every move. It’s such an unpredictable road and you can’t ever get TOO excited or you’ll just hit a curve in the road and get knocked right back down.

We got used to celebrating every little victory and just taking things one day at a time. When they finally told us it was almost time to go home, we were in disbelief until we walked out of those hospital doors, and even that was a hard transition in itself. Now we have this precious baby that has some serious complications and it’s up to us to take care of her 24/7, no doctors or nurses just a few feet away.

We face tons of daily worries, as heart babies are so unpredictable, but we will face every challenge with the mindset that God is in control and we are thankful for every second we get with her. She is our happy, sassy and strong girl!

She has been such a blessing to all of us; she’s taught us to soak in every little moment and not to get caught up in the small stuff.  She has taught her brother and sister about compassion and empathy, and I’ve seriously seen our family grow throughout this entire journey.  Although it’s been difficult, even unbearable at times, I wouldn’t change a thing about it!

Comments

Amy

Amy said:

Join the Heterotaxy support fb group!! Praying.

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