bucket list – Olivia Grace

Olivia Goes Outside

July 8, 2016 14 Comments

Earlier this week we shared that Olivia went on a few big adventures last weekend, making her way outside for the very first time! We visited the gardens, picked some flowers, and went for a few long strolls. We walked and talked and sat on the benches as a family, and obviously took countless pictures and videos to capture our trips.

Overall, we’re telling ourselves that Olivia loved it, seeing the trees and the sun and the blue sky. Feeling the warmth of the sun and the wind on her face. She kind of hated the wind, and cried every time we went over big bumps, but all in all she enjoy it.

Daily Rounds

72 Days Old: A Baptism, A Long Walk, and the 4th of July

July 4, 2016 15 Comments

Some days in the NICU are quiet days, and others are so full of activity and events and fun that it makes it hard to summarize in a single update to friends and family. Today was one of those days.

First, and most importantly, this morning we were joined by Father Mike from our church and Olivia was baptized. It was a short, but special ceremony, with just Luke, myself and our nurse Inna as a witness. We didn’t pick out a traditional baptism gown, but we did get Olivia ready in her best dress!

She looked like a angel. A perfect, little, sleepy angel.

After the morning’s event, Olivia snuck in a snooze and a hold with Dad, before venturing outside for… get this… the 3rd day in a row! Late last week word began to get out that we were really itching for Olivia to see a bit of the world beyond her NICU room. The staff knew how much we wanted to take Olivia outside, and have graciously allowed us to do so every day this weekend. It takes extra equipment and extra staff, but with everyone on board it’s been such a gift.

We have some of the funniest pictures (and videos) of Olivia’s outdoor adventures, so we’ll share another post with our favorites soon. For now, here are some from today’s trip.

Olivia had even more visitors this afternoon. Mike and Jen met us outside and joined us for a stroll around the garden before a mini-meltdown made us decide to head back inside.

Jen came bearing gifts, which I’m going to keep as a surprise until the time is right to share them with you all. I’ll give you a hint: both items will help Olivia check off items from her bucket list! And by her bucket list, I mean, all of the things we want to make sure she experiences, despite being in the NICU.

Last but not least, since today is a holiday (and Aunt Bey’s birthday!), Olivia was subjected to another one of Mom’s holiday photo shoots. Per usual, she slept through the activity.

Stories from Mom

Olivia Meets a Flower

July 2, 2016 16 Comments

In recent weeks, Luke and I have been having more and more conversations about Olivia’s fate. What will her life look like? How long will she be with us? Will she come home?

The possibility that she may pass away before ever leaving the NICU – no matter how unbearably sad that is for us to imagine – is real. And no matter how many times I’ve been encouraged not to get ahead of myself… not to think about outcomes yet… to stay in the here and now… I can’t. I don’t.

Ultimately, I go there. Usually multiple times a day.

I think about things like how she may never feel the fresh air, or feel the sun. I think about how she might never enter our home, never spend a night at home with Mom and Dad. She may never wear a Halloween costume, or see Santa. I think about all the friends and family members she may never meet. The places she won’t be able to visit with us.

Some things I think about are silly, like Halloween costumes and Santa. Some are sad, like meeting family members, and visiting places that are special to us.

Others are just downright innocent: the warmth of the sun, the feeling of sand beneath your toes at the beach, the way the air starts to smell differently in the fall.

And while not every innocent thing can be bottled up and brought to Olivia, some certainly can. So I’ve decided to do just that. Even if it means sneaking things in and breaking NICU rules. Dr. V – if you’re reading this, no fair telling on us!