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Thursday, February 1, 2018

Heart Month Spotlight- Leigh Ann HLHS

Happy Heart Month!

This month I want to share the stories of some of the families that have walked alongside us (and some that came before us) at Texas Children's Hospital.




First up is Leigh Ann. This little lady is extra special to me because we were pod-mates after our Norwood surgery and her parents, Mandi and Kyle, were some of our first heart-parent friends.

What is your diagnosis? When did you find out? HLHS - 20 week ultrasound  

Where/when did you give birth? TCH- born March 9, 2017, baby was breech, C section one week early  

How did you decide on where to receive cardiac treatment? Was referred by OB that delivered my son.




What surgeries or procedures have you had?
Norwood surgery on March 16th at 7days old
Glenn surgery- July 11
G button- Sept 11
Heart Cath - Sept 20 

Briefly recap recovery times and any issued or challenges.
Leigh Ann Spent a total of 205 consecutive days in the hospital.
She coded on March 26th, 2017 and was intubated for two weeks.
She's had 6 PICC lines
She got NEC 3 times and lived on TPN for a long time.




What was hospital life like? Share your challenges, triumphs, tips or tricks.
It was hard, frustrating, but we never lost faith. Take breaks- I had a routine and switched off with Kyle. We went to church on Sundays and when school resumed I went back to teaching to keep my mind focused.

What is life like now?
Busy and blessed! Often stressful but we are so glad to be home! We have 9 meds 3 times a day, therapy 5 days a week, and doctor appointments every 2-3 weeks.





If you want to follow Leigh Ann's journey further please 'like' her Facebook page!