Life On the Outside, After NICU, 5 Months Adjusted

Tomorrow Isabella will be 8 months old. 8. MONTHS. OLD! (5 Months Adjusted)

It’s pretty crazy to believe we’ve officially spent more time AT HOME than in the NICU at Akron Children’s Hospital. Every time I look at her my heart leaps out of my chest and I haven’t quite gotten over the fact that I can pick her up any time I want to. Or walk further than a few feet with her. Or drive away from the hospital with her. Or insert-normal-thing-moms-do-with-babies-after-bringing-them-home.

She’s been alive 244 days.

108 of those were spent in the NICU. (The other 2 were “practice” haha when she had an aspiration event at home after being discharged and went back to spend more time there)

She’s been home 134.

I’ll be honest. Making time to write is difficult. We spent all day at Akron yesterday and I’m pretty tired. But, Dustin looked at me and said, “You gotta write, Tiff. You know you enjoy it.” And I do! But sometimes it’s easier to just browse Facebook or Pinterest. Well, not tonight. For now I’m going to write a quick update.

How do I reflect on the last 8 months? Other than to sob, laugh, pray, sob some more, and write. Yesterday we spent all day up at Akron. Isabella got to see some awesome familiar faces and she went for her Hemangioma (birthmark) checkup with the pediatric dermatologist.

She’s 8 months and is 11 1/2lbs. She is in the less than 1% for her age, but is doing wonderfully. Small but coming right along, on her terms, in her time.

We always have to plan and plan and plan to make sure we have everything Bella might need. This means bringing two of everything and remembering things she needs to eat via her feeding tube. Her feeds take an hour and a half minimum so we find a quiet, low traffic spot near a family bathroom in the hospital and make ourselves comfy. I used to bring magazines but now I just read on my phone or visit with my Mom/Julie/Kayley/Dustin. I always pack snacks! (More on what we pack for a day at Akron another time). Anyways, my new favorite spot is on the 6th floor of the new Considine building. This building houses a lot of specialists and is brand spanking new.

Thankfully the building is designed with kids with special needs in mind (Thank You) and we have everything we need to prepare Bella’s pump and feed her while there. We can’t really get away from feeding her since we live an hour and a half away. We also don’t take her to other public places so the hospital it is.

One of the coolest things about Akron Children’s is everything is connected. No going outside! The two buildings are facing one another, Kay Jewelers Pavilion and the Considine Professional Building. The NICU is located on the 6th and 7th floors of the Kay Jewlers Pavilion.

We stayed here with Bella. This was our life. We lived it for 3 1/2 months. We made friends here. We celebrated milestones. We held our daughter for the first time here. We slept here. We watched movies here. We ate here. We did everything here. Inside a building above the city. Beside our tiny daughter as she grew.

Map showing Kay Jewelers Pavilion (left) and Considine Professional Building (right) Photo Credit: Ronald Mcdonald House of Akron

And so…much like Rapunzel in a tower, Bella stayed in the NICU for those 100+ days with us by her side. And…we yearned for the outside world, too. We watched it snow, rain, storm, sleet. We even saw fireworks fill the night sky.

We would love to hear about what was going on in the hospital…and loved watching the new Considine Professional Building being built. We would overlook the building adjacent from the large window in Bella’s room (Our 3rd Room). The window gave us a glimpse into the outside world. The window helped me keep my sanity.

Our first room in the NICU. Not facing the new building, but you can see how our room was set up when we did face the new building.

That window gave us hope. Hope to someday be on the other side. Hope that life would go on and we would go on with it…with Bella. I didn’t realize at the time that we would spend so much time in that building…and that Bella would have some additional needs when coming home. I didn’t realize that in a few months I would be holding her in my arms…looking out at the same room in which we lived.

And that’s what hit me so hard yesterday. We were on the other side.

Facing the NICU, in the Considine Building

You guys. We made it. We are on the other side. It was hard. It was crazy. It was wild. But we’re here. We’re here and we’re doing it. We’re doing life outside of the NICU. There’s an extra accessory of a feeding pump and some other quirks…but we’re going to be OK. Bella’s going to be OK.

I’m letting the tears fall as I type this. I look at this picture and I will never forget. Never forget that room. That small room across from where I sit. Where my daughter began her life. Where we learned to be parents. Where we walked through the the valley of the shadow of death but overcame. I smile. I smile so big. And I cry. I cry so hard. And I hold her and I thank God I’m on the other side with her.

I’m not sure why we made it and others don’t. I don’t know why I’m still alive. Or Bella. But I know God is good no matter what. He has always been faithful. Even in the loss of our first pregnancy. Even in the midst of heartache He is good.

And so…there’s a thousand other things I’d like to write, but tonight, I’ll just post these photos. In the background is the NICU. Having Bella looking over where she once lived has a huge impact on my heart. I am so ever thankful. Thank you.