What it's been like in the City that never sleeps

What’s it like when the City that never sleeps, is told to go take a long, long nap? Well, our life here has changed in every possible way, and it’s been hard on all of us. I know everyone is making adjustments — but going from the speed of this city, to a complete abrupt stop feels like coming off of a moving sidewalk in the airport. You feel like your legs should still be moving…

Getting Better

How are you guys doing? It’s a question that we get a lot, and that is so complicated to answer. It’s hard to find a simple yet honest reply. I’ve started to favor, “We’re getting better.” It feels like the most authentic response - we’ve gone through a lot this year, it doesn’t feel real to say “we’re great!” but we no longer feel as deep in the trenches either. 

Constantly Adjusting

You know things have been pretty busy if it’s been over two months since a blog update. (And that means you’re in for about a bajillion pictures.) I soaked up as much of my maternity leave with the girls as I could and that left little to no room for writing. Once I went back to work nearly four weeks ago, the thought of sitting down to write pretty much went out the window…

Monday, Monday

Monday is April 8th, also know as “Lucie Day”. It’s the fourth anniversary of when we got to bring Lucie home from the hospital after 111 days in the NICU. Monday is going to be a big day for Felicity, too, with meetings and decisions to be made by her medical team about when she might be able to come HOME! It’s been such a challenging yet AMAZING journey for both our girls.

So Much Power

Hi Gang,

Rob here… Last time we updated we were waiting for Feli’s case to be presented to the Cardio Team. We have not been able to update as frequently as we would like, and not nearly as often as we did when Lucie was in the hospital… but last week, it felt like we needed to pull the emergency alarm and just ask for prayer even if we didn’t know exactly what to pray for. Felicity’s health was just getting worse and worse as we watched and waited for answers…

What’s on Felicity’s “Plate" Today

Hi Everyone,

This post is coming at you from Rob and Drea. Pretty much right after Drea posted the last update, a LOT happened and to sum it up, Fafa’s condition is getting worse. As a result of major complications from the infection (Endocarditis) in her heart, Felicity’s aortic and mitral valves are severely leaky. This is causing her heart to work harder, which causes her heart walls to thicken, which causes her heart to pump less efficiently, which makes her valves leakier and it perpetuates a cycle of deterioration…

Asking for Prayer

There’s a look that I see on pretty much every NICU parent's face when we go to the hospital. It’s a mixture of exhaustion, worry, relief, sadness, and maybe a slight attempt of optimism. My heart breaks when I see those vacant expressions, and then I realize they probably see the same look in our faces too. It’s been a hard season, friends. As you know, the last several weeks have been filled with a lot of waiting for test results...