Astonishingly awesome. That’s how well Luke is doing.
We’re now officially 16 days post-op from his brain surgery and I am still amazed and humbled at how well Luke did during, and after, surgery. I’ve been mostly MIA in the social mediasphere when it comes to specifics of his recovery. You can blame it on two things: a busy end of summer/beginning of school and indecision in what to share and what not to share.
His pain has been minimal, if at all. He came home on Tylenol (WHAT?!) and only told me he hurt twice. After the second dose of Tylenol, we threw the bottle away and never looked back. The first 24 hours, it was just Luke and I at the house. Scott took the big four with him, dropped one off in Dallas and carried on to Arkansas for summer camp drop-off. He arrived back with just one child (Clare) and she spent the rest of the week playing sweetly with Luke. He slept great, ate great, watched a lot of movies and played with lots of trains and cars. His cute, sassy personality began to shine through and I, gladly, breathed a sigh of relief. The wound care on his scalp has healed so beautifully. Aside from the twice daily washings, he has tolerated it well. He developed a nasty reaction to the tagaderm (tape they used over his steri-stripped rib graft incision). That has finally healed and his incision, while still “angry”, looks great.
I hesitated to show pictures of his scar, mostly because it feels like showing your belly button on Facebook – completely inappropriate and a bit of a sharing violation. I also don’t need people fainting from reading the blog. Just trust me when I tell you it is beautiful. Spoken like a true preemie mom.
Luke’s Hospital Stay
The evening before our last day in the hospital, Luke and I were able to experience some quiet moments of peace and prayer. When I shared our third day of the hospital stay with you, I debated whether I should share this memory or not. After a couple of weeks of praying, and a pretty awesome confession experience with my priest this week, I’ve decided to share that special memory with all of you.
Luke had just finished watching Cars 2 for like the billionth time on that Friday evening. It was late, well, late if you’re three – almost 9:30pm. The hospital was eerily quiet. I glanced over at the tiny wheelchair the hospital had wheeled to our room two days prior and thought, Oh, why not? I plopped Luke in the chair, with just his diaper and a shirt on, and covered him with his favorite Cars blanket. I winked at the nurses and off we went.
First, we wheeled past the long corridor, lined with windows. It overlooked the courtyard and it appeared Luke and I were the only patients there, even though I knew that wasn’t true. We popped out one of the side doors and found ourselves sitting in the darkness, surrounded by beautiful sculptures, running water and nearly complete silence. It was that same courtyard we had visited just ten months prior, for the annual NICU reunion. That day, it was a hotbed of crazy fun. But on this night, it was oh-so-peaceful. Luke remembered playing with the ducks at the reunion and recounted how much fun he’d had.
And then it hit me.
He really loves this place – the adventures, the toy cart, the popsicles, the TV anytime he wants, the beautiful courtyards. All of it.
And I really hate it. Every last square inch of Dell. I have nightmares, still.
We made our way from the courtyard to my one sanctuary, the hospital chapel. I’ve always sat in that cold, air-conditioned room and found solace in the silence. On this trip, though, I decided to head out to the chapel courtyard with Luke. I lifted him from the wheelchair, wrapped him in the blanket, and walked into the warm summer air outside. I glanced up and saw it.
The NICU floor. I could see a few decorated doors from where I stood. And my heart skipped a beat.
Luke patted my arm, “Ma! Wook!” With every new step, he was pointing out something different. The plants. The statue of St. Joseph, the benches, the lights in the rooms above. I had a temporary out of body experience as I saw myself, standing in the courtyard, from the fourth floor NICU. Nearly four years prior I had sat in that same room, looking down below, with tears streaming down my face wishing, hoping, PRAYING to be anywhere else but Dell.
Yet, here we stood.
But on this night, I felt much like how a climber must feel when he reaches the top of the mountain. Not quite victorious, but relishing in the climb. It’s never what you see at the top, but how much more you appreciate it because you poured your blood, sweat and tears into getting there. I was able to fully understand the arduous four-year journey we’ve had with Luke. I remembered the difficult days, the darkest moments, but I also smiled (through a few tears) remembering the many amazing surgeons and nurses, clinical staff and sweet moments. I found myself saying them aloud to Luke. “Oh remember when the doctor met us in the NICU and said you were sick, but tough.”
“Oh, I tough, momma.”
Yes you are, baby.
Who defies the perinatologist’s predictions and makes it to 36 weeks, despite being growth restricted? Luke.
Who survives a surgery with a 2 in 10 chance of survival? Luke.
Who charms every specialist he meets? Luke.
Who needs to pass out shirts with the title “Welcome to the Luke experience?” Luke.
Who has taught me to believe in God’s graces, even when I wasn’t sure they existed? Luke.
We walked back into the air-conditioned chapel and strode over to the Tabernacle. I got down on my knees and made the sign of the cross. Luke just patted my shoulder and said, “Let’s go, momma.”
Yes, let’s leave this place behind – the beautiful memories and the most difficult ones – and let’s enjoy the next chapter of life. One free from hospitals and surgeries and journey down the path of developmental milestones met and challenges overcome.
And with that, we confidently walked out the doors of Dell the following morning, in what I hope, will be the very last time.