❤ Heart Awareness Month ❤ Meet our February 25th Heart Warrior Liliana Grace. Daughter to Julie & Andrew Schneider.
Liliana Grace’s story as told by her Mommy:
This is our rock star, Liliana Grace who was born in late 2011. She was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) at 20 weeks in utero. She was delivered via c-section full term at NYU. She had her Norwood at 2 days old and the brilliant Dr. Mosca closed her chest 2 days later.
She was discharged after 16 days with a feeding tube in her nose. She pulled out the tube after being home less than 24 hours (I FREAKED out) and the fight was on to get her to take full feeds by mouth. She gained and lost weight like a roller coaster. She finally made it to her Glenn (2nd surgery that children with HLHS get) at 6 months of age and she was home with no complications after 5 days.
She was very curious as to why she was in the hospital and kept a watchful eye on EVERYTHING the nurses did. One nurse actually became paranoid at how Lily watched her change an IV bag. Today she is a very happy and is still a very curious 15 month old that has a cardiologist in Brooklyn that described Lily as one of the most successful cases he has seen.
We are moving to Wisconsin in March so she will have a new team of doctors to impress and we can get an idea of when her Fontan will be (this is the 3rd surgery that children with HLHS get- usually sometime around 2-3 years old). We never stop praying for her and all the other children having to go through open heart surgery. It does get easier but no matter what, CHD’s suck. **CHD means Congenital Heart Defects.. and they do suck :) ** Picture is of her rocking mommy's earmuffs.
Thanks Amy. I will never forget your Lily Grace. (Thanks for never forgetting my Lily Grace!!)
**My angel Lily Grace also had HLHS like Liliana Grace. Love the name- the resemblance in names is crazy. Also, one of my Lily’s surgeons was Dr. Mascio and Liliana Grace’s surgeon was Dr. Mosca, thought that was neat.
:) Liliana Grace’s story as told by her Mommy:
This is our rock star, Liliana Grace who was born in late 2011. She was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) at 20 weeks in utero. She was delivered via c-section full term at NYU. She had her Norwood at 2 days old and the brilliant Dr. Mosca closed her chest 2 days later.
She was discharged after 16 days with a feeding tube in her nose. She pulled out the tube after being home less than 24 hours (I FREAKED out) and the fight was on to get her to take full feeds by mouth. She gained and lost weight like a roller coaster. She finally made it to her Glenn (2nd surgery that children with HLHS get) at 6 months of age and she was home with no complications after 5 days.
She was very curious as to why she was in the hospital and kept a watchful eye on EVERYTHING the nurses did. One nurse actually became paranoid at how Lily watched her change an IV bag. Today she is a very happy and is still a very curious 15 month old that has a cardiologist in Brooklyn that described Lily as one of the most successful cases he has seen.
We are moving to Wisconsin in March so she will have a new team of doctors to impress and we can get an idea of when her Fontan will be (this is the 3rd surgery that children with HLHS get- usually sometime around 2-3 years old). We never stop praying for her and all the other children having to go through open heart surgery. It does get easier but no matter what, CHD’s suck. **CHD means Congenital Heart Defects.. and they do suck :) ** Picture is of her rocking mommy's earmuffs.
Thanks Amy. I will never forget your Lily Grace. (Thanks for never forgetting my Lily Grace!!)
**My angel Lily Grace also had HLHS like Liliana Grace. Love the name- the resemblance in names is crazy. Also, one of my Lily’s surgeons was Dr. Mascio and Liliana Grace’s surgeon was Dr. Mosca, thought that was neat.
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