• Julee Wilson

The New Normal

On the podcast this week, My guest and dear friend, Heather Faria, and I discussed our experiences with having a preemie and navigating the NICU. Make sure to have a listen under the Chasing Marbles tab here on the website. Here is a little excerpt from the memoir about our first week being Preemie Parents:

As we rounded the curve of the street that bisected ours in our little condo development, something caught my eye on our garage door. “Welcome Baby Paxton!” Was painted on a banner that was taped to the garage, flanked by baby blue and white balloons!

Casey pulled up to the driveway, and a closer look revealed that Delsa, Pam, Sharlynn (who lived two condos down), and Andrea had all signed it. I was dumbfounded at the thoughtfulness of my dear friends!

Casey got out first and hurried around to my side of our GMC Jimmy to help me out. My legs were still fairly weak from no use, and I had to move very slowly, so as not to lose my footing and topple over!

“I’ll grab all the stuff in a minute. Let’s get you upstairs and settled in,” he offered.

Our condo was actually more like a flat. The four car garage (two tandem, side by side) was on the first level with a small lobby. The lobby had two doors, one for each of the two condos or flats. Ours was the first flat on the next level. Our neighbor, Barry, had to go up two flights of stairs, once in his door, to get to his condo.

I gingerly made my way to the outer door, waited for Casey to open it, and then the inner door, where we were met by a very excited and overly-exuberant Mocha. Casey had to hold her back to keep her from knocking me over. She was so happy to see us that she was shaking and whining with sounds I’d never heard coming from a dog!

“I’ll hang on to her so she doesn’t trip you. Head on up and I’ll be up in a sec.”

I gave a nod and started up the stairs with every intention of ascending them like a normal person, but my quads said no way! My leg immediately buckled and I landed on my knees on the first step.

“Oh, my gosh! Are you ok?!” Casey exclaimed. He let go of Mocha and both rushed to my side. I nodded a weak yes. “I can’t believe how weak my legs are! I’m going to need some help up the stairs, I guess.”

Staring up the long, narrow staircase was like looking up at Mt. Everest now. There was the initial stretch, then a landing, then the stairs turned to the left with another half staircase. How was I going to make it up there?

Casey offered to carry me, but let’s be honest. I weighed a lot more than the first time he carried me over the threshold of this condo. And, even then, he didn’t carry me all the way up the stairs.

“I’ll use the rail,” I offered, and grabbed the rail with both hands and pulled myself up step by step, while Casey supported me from behind.

Mocha ran up and down beside us, excited and confused all at the same time. We finally made it to the top, and I collapsed on the sofa. I couldn’t believe what an effort that took and how exhausted I was! Casey finished bringing in all the stuff from the car, and then collapsed on the sofa next to me. We just looked at each other in unbelief, not sure how to navigate any of what was happening.

My now new daily routine consisted of pumping every 3-4 hours, storing the milk, getting dressed, driving to the hospital, spending the majority of the day with Paxton, learning about his care, and driving back home, and collapsing on the couch. With each day the strength slowly came back to my legs. Each day also brought new information and new meetings with different members of the hospital staff. Paxton had six doctors on his team, two rotated every two weeks and each had different specialties like Gastroenterology, Cardio-pulmonology, Dietician, Endocrinology. We also had the head of nursing and social workers who met with us regularly. Paxton also had day, night and graveyard shift nurses, plus Respiratory Therapists.

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