For most of you, I'm sure you've followed Adair's tale. Here is a recap of our first year with our 'Powerful, Fortunate Champion':
We found out at 20 weeks there was something wrong with our baby. We thought the 'halfway' ultrasound appointment was for finding out the sex of your baby, not to learn earth shattering news like this.
We learned that Adair had a complex congenital heart defect, having only one ventricle instead of two, as well as a very rare syndrome called heterotaxy - with 80% of heterotaxy babies not living past their first year. Countless appointments followed which brought a full range of emotions: fear, anger, helplessness, hope, gratitude, and ultimately just anticipation to meet our little one.
Adair Nolan Hodgkinson was born at 39 weeks at the Institute for Maternal & Fetal Health at the Colorado Children's Hospital - 7 lbs 4 oz. 19.88 inches long. After 6 days of tests and monitoring, it was determined that her stomach is on the wrong side, her liver is midline, she's asplenic, her intestines are malrotated, she has a common atrium, and only one ventricle instead of two.
She has had two heart cath procedures, and two open heart surgeries within the first 4.5 months of her life, and will hopefully only need one more surgery, the Fontan, at 2-3 years old to finish paliating her heart. She will have to take antibiotics everyday to make up for her missing spleen, although she will always be more susceptible to getting sick than other children. We will also need to investigate the degree of her intestinal malrotation to determine if the LADDS surgery is needed - she has been asymptomatic thus far and we're very hopeful she will not need need it.
Adair Nolan means 'Powerful, Fortunate Champion' - and our little girl is just that.
Instead of getting Adair a birthday gift, please donate to the Colorado Children's Hospital in honor of her reaching her first birthday!
Thanks for making her birthday so special by giving children a chance at healthy futures.