What is HLHS (Hypoplastic Left Heart Syndrome)?
by AJ’s official heart diagnosis is Hypoplastic Left Heart Syndrome (HLHS) and Unbalanced AV Canal. We have spent four years learning about AJ’s heart, learning what …
Tag: hlhs
Stable – A Heart Mom’s Favorite Word
Today was exhausting. AJ had appointments in Coralville and Iowa City – five of them to be more precise. We arrived at the first stop …
HLHS and Down Syndrome – We Aren’t Alone
I strongly recall when we received AJ’s diagnosis. Things were grim. The doctors that came into our room were quiet, subdued, and almost scared to …
Annual Heart Cath, Improved PH Pressures, Ballooned Aorta
It’s that time of year again. Every January AJ goes into the Cath lab to check his heart function and to make any “minor” interventions …
“Home” at UIHC Again!
We made it back! We absolutely will miss CHOP and the wonderful team out there, but we are definitely happy to be back “home” at …
Cherished Portraits
I almost didn’t share these photos… We didn’t really say much to anyone because we were trying to process what was going on ourselves, but …
Tape Free Life…
This little cutie has almost clear cheeks and is nearly back up to full volume of feeds of skim milk through his fancy gtube as …
Getting A Trach / Trach Placement Day
We can all breathe a lot easier now – one of us quite literally. AJ is out of OR and back in his room. His …