Returning to the NICU

I’m back. I’m sitting here in the NICU rocking a wee little baby. It’s all so familiar. The wooden rocking chair that is surprisingly comfortable. The white noise hum in the background. Rock rock rock. The clicks of the alaris pump pushing medication and nutrition into her tiny body. The beeps and buzzes both near and far. Rock rock rock. I still flinch when an alarm goes off – eyes dart to the monitor – relief when you realize it’s not our alarm – PHEW! It’s just the baby next door … Wait a second… The baby next door? Why is the alarm going off? I hope they’re ok … (now feeling guilty for the feeling of relief a few seconds ago). Rock rock rock. Repeat.

I’m back spending time with baby Hadley this afternoon and giving her some snuggles. Her mom had to go home for the weekend for her 17-month old son so I asked if I could come visit Miss Hadley. So honored to be able to be a small part of her care. I still remember our first morning away from Lincoln. Palm Sunday. We went to church before we came to the hospital which means we didn’t get in until 1130 or noon. Our nurses Lizzy and Anne had snuggled Lincoln all morning, rocking him and loving him. I think that’s the day they fell in love with Lincoln. I know it’s the day I fell in love with them … One moment in a long line of moments when I fell in love with our nurses! It made me feel like I could be away and he would still be ok. He would get attention. He would be comforted. He would be loved. So here I am. In one little moment trying to pay it forward.

So as I sit and rock I thought I would extend the familiarity of the moment and write a blog on my phone. 🙂

The other day I was here visiting and I saw one of our doctors who treated Lincoln. I popped my head in and said hi … “I’m not sure you remember me… I’m Lincoln Zapata’s mom Katie”… “Of course of course! How are you! I hear lincoln is wonderful!” I love when I hear that… That our doctors and nurses care so much about lincoln that he’s a topic of conversation even so many months after we were here. This is a special place.

A few weeks ago I brought Lincoln to the emergency room. He had a chest cold. I didn’t like the way he was struggling to breathe. Sheryl, Dave and I all looked at each other and agreed I should take him to the doctor. Unfortunately it was 6 pm on a Friday night so that meant a trip to the ER.

(On a side note, I think there should be a VIP status or something for families who spend a significant amount of time in the hospital with a sick child… Like if you spend over $500K you get a fast pass to cut to the front of the line… If you spend $1 million there’s a special red carpet club… Boarding with the A group… That sort of thing. I don’t expect to be a lifetime member. It can reset every year. But families with kids who have chronic illnesses get VIP treatment.)

Unfortunately that doesn’t exist so we spent about 6 hours in the ER that night. Once we got back to a room, a doctor came in and said “LINCOLN!” She was not one of our core doctors but definitely familiar. She explained that she met him a couple times right after he was born. She had followed his case and knew everything that happened with him. “I’m not your doctor tonight but I saw his name on the board and had to see him!” Then a little while later our assigned doctor came in. We had never met her before … But as she walked in she said “LINCOLN! It’s so good to finally meet you!” Then as she was examining him it was clear she knew of him. “Buddy, we talked about you for WEEKS!” she said. Then nurses made the same rounds. Over and over again.

Our little celebrity.

Certainly carries mixed feelings with it. I was immediately caught off guard and a little uncomfortable to know so many people know about Lincoln. What do you mean you talked about him for weeks? What does that even mean?! Was this seriously so rare that everyone in the hospital talked about it? As Dave used to say, are we like that episode of Grey’s Anatomy where the interns and residents fight over the crazy rare disease for the thrill of it? That’s not a great feeling.

But I am also so grateful for the concern and compassion. That each child here is an individual. That they are so dedicated to learning and growth that when a child like Lincoln arrives with a rare disease that they haven’t seen in two years, they are going to make sure everyone learns about it so they are collectively smarter and able to provide better care the next time they see it.

And now this is the next time.

If I had any ounce of discomfort about Lincoln’s celebrity status at Lurie before, it is now gone. As soon as we learned about Hadley, I was so grateful that Lincoln was the topic of so many discussions. If it can help this family get a little better care or even just to not feel so scared because it’s not the first time a nurse has treated HI.

So back to when I was chatting with one of our doctors earlier this week… She was so kind and loved looking at pictures of Lincoln and asked so many questions. She knew I had connected with the new family and I said we were grateful for the opportunity to pay it forward. I thanked her for taking such good care of Lincoln and of our whole family. She looked at me thoughtfully and said:

“Will you ever recover from what you went through here?”

I made a crack at the time… Said i thought we were recovering but that I would be in therapy for a long time. Ha ha ha… deflect with humor. But I’ve replayed that question a dozen times in my head since she asked it. What does recovery entail? I know we’ll certainly never forget. I’m forever changed. Not quite healed… but healing. Trying to heal.

But if we can help Hadley and her family… If we can be a source of support for the next family that comes through Lurie with HI… If our painful journey has a purpose and can help ease other people’s pain… Well that helps.

Healed people heal people.

And people trying to heal try to help heal people. At least that’s what I’m trying to do. We’re all in this together. Thankful for the opportunity to learn these important lessons this year.

For those of you not on instagram or Facebook, here’s Bubba sitting up for the first time on his own this week in physical therapy! 🙂