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...

Lucie turns FOUR!

Tomorrow morning our Lucie will be four years old. Oh my word, she’s such a big girl and beyond thrilled that she will be a big sister.

We have celebrated this girl full and well this year and I’m so thankful, because in the midst of all the festivities, we got a rough reminder of the fragility of life through not one, but two hospital stays for me and baby Fafa...

I Have Confidence

It's the beginning of summer. May and June have been full. We've known all year that June, July and August would stretch us out especially thin because of Huddle Up NYC Summer Camps. As I'd look ahead at the summer calendar, I would start to feel a bit overwhelmed by the sheer volume of activities we had. Thankfully…

Here Comes the Sun

I’m spending some time in this blog post reflecting on the joys and challenges that have come from the season we went through after Lucie was born. We recently celebrated our third Lucie Day! AMAZING! In the midst of the many ways we have been blessed through this experience, I’ve actually recently realized that one of the after-effects for me has been a feeling of just being stuck, paralyzed by fear (some totally valid and justifiable, and some just riddled in doubt). Have you felt that before? I also talk about how the song, Here Comes the Sun, by the Beatles has become so special to me in the past few years… I hope you enjoy this post, along with many many pictures.