Tags » HLHS

When Geography Matters.

Today Isabelle had an appointment with Dr. Sadhwani of the Cardiac Neurodevelopmental Program at Boston Children’s Hospital. She was not happy being trapped in the car for over an hour and decided that the chest clip on her car seat was far too annoying to bear. 1,356 more words


How Long Does a Miracle Last?

I bit my nails, wrung my wrists, and chewed holes in both my cheeks while I wrapped my hungry 12-week-old tight for the 20-minute stroll. We walked slower that day, dragging each foot forward to the doom that waited ahead. 553 more words

Ultrasound tomorrow, 8:40am.

Praying for our sweet Mila tonight. We have a growth ultrasound tomorrow at 8:40am. PLEASE don’t stop praying for a miracle of healing and for a new and perfect heart for our precious baby. 108 more words

This is NOT the Trip I Planned For! (Part 2)

This is the 2nd entry in my 3-part remix of the “Welcome to Holland” essay (you can check out part 1 Here).  Happy reading!

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This is NOT the Trip I Planned For! (Part 1)

By now I’m sure a lot of you have heard of that very popular essay called “Welcome to Holland.”  If you haven’t, google it.  Basically it was written by a mom as a way to describe what it’s like to have a child with a disability/illness.   985 more words


Blessing Karlee's Family {GoFundMe}

Karlee Dee passed away this morning. At 15 months old, her battle with
hypoplastic left heart syndrome (HLHS) ended.

I’m not quite ready to throw all my thoughts and feelings and grief out into the world. 95 more words

Lele Marie

Is Annie Contagious?

“Is Annie contagious? Because my mom told me she’s sick…Is she gonna die soon?”

It wasn’t meant the way it sounds, but it was a sharp reminder of the curiosity that Annie is bound to face as she grows.   402 more words