on going & giving back 

Today we visited Golisano Children’s Hospital where Nicholas was born. We brought donations & left with more than we could’ve imagined. 

The drive from Pine Island to the hospital was quiet. Andy & I in the front & Nicholas in the back. When I said to Andy “you remember how to get there?” He smiled and said “probably.”. And that was really all that was said the entire car ride. 

The silence wasn’t all happy silence- some of it you could sense was a “You sure you want to go back there? What if it drudges up memories & you can’t handle them? What if they don’t remember you? Don’t remember your child?” fears in us both.

We arrived at the hospital a few minutes late (what with a 1 year old & a husband who admits he can’t keep track of the time we are never anywhere on time). We were greeted by the director of the child advocacy program who helped us unpack our goodies for the NICU & led us through the hospital to the NICU doors (it’s not as if we didn’t know how to get there but her company on the walk was nice). 

  

Once inside that door it was like we had never ever left. The smells, the lockers, the scrub stations, the dinging of CPAP machines & ventilators & heart monitors filled my ears. And I’d be lying if my heart didn’t break a bit. 

I passed 2 mamas in the entryway who you could tell had just given birth & were a catastrophic mix of hormonal happy/sad/angry/scared/lost & all I wanted to say to them was “I feel ya. I’ve been there. Well, here. And I won’t tell you it’s going to be OK (it will be) because you don’t want to hear that now.”

I would tell them what I wanted someone to tell me in those first few days: 

“This situation is shitty. It’s crap that families are made this way but unfortunately that’s life & we adjust, darlin. We adjust. And in the meantime while you’re trying to gracefully adjust know that I get that it’s shitty you’re here & your baby is. & it’s ok to feel that way. Get mad. I did. Scream. I did. Throw something if you must. (I may or may not have done that at some point.) Let it out. ”

We spent some time in the entryway of the NICU talking to with our therapy teams, primary nurses, & others who cared for Nicholas. They were tickled to receive the goodies from Nicholas’ birthday party (thank you again to every single person who helped us donate over 150 blankets & 50 books for NICU families. We are committed to continuing this donation program – more to come on that.) 

  

  

After our visit in the NICU we headed downstairs so Andy could grab ice cream (there is a little ice cream parlor in the hospital that grew to know Andy by name while we wre there so of course he had to go back & get some more!). 

I noticed that the hospital Christmas tree was still up – it was the same tree that was up last year at this time when we left the hospital. So, while we waited for Andy to make his ice cream run around the corner we played by the Cristmas tree.

sidenote: There was a baby in the NICU while we were named Kaden. He was born to a young mother who gave birth at just 24 weeks. While we were in the NICU Kaden’s isolette was just a few queues down from ours. I met Kaden’s  grandmother first. Honestly, I thought she was the mom. (She got that a lot while we were in the NICU). She told me about Kaden’s birth & his prognosis. 

At first, it was good. Then, it wasn’t. I watched as his every function was monitored so that the doctors could figure out what was going on. There were days where he was so fragile a loud noise could cause him to Brady or De-Sat. 

On one particularly rough day I watched in horror as Kaden flat-lined 3 times in just as many hours. Each time it took half a dozen nurses to revive him. As the nurses left his bedside after the 3rd episode one of them said under their breath to another nurse, “let’s just hope he doesn’t die today.” 

Kaden remained in that same spot as we left ICU & we were eventually discharged from the hospital. 

Over the past year Andy & I have often thought of Kaden. How was he doing? None of our nurses would give us any update (regardless of how creative we were in asking our questions- they are good at honoring all those important yet annoying when you have good intentions HIPPA rules). Andy went as far as checking the obituaries a few times throughout the year because it looked that grim for Kaden while we were his NICU neighbor. And, we cared & we wanted to know. 

While we were playing by the Christmas tree Andy returned with his ice cream. I asked if we could take a few photos of Nicholas before we left. 

 As we were trying to get Nicholas’ attention for a photo, I caught a woman walking up to me from the side with a baby on her hips. As she got closer she said “I thought that was you, North Carolina”.

I turned & locked eyes with her. & immediately I cried. Kaden was perched on his grandmother’s hip as she walked up to us. 

And let me tell you, Kaden is beautiful. Andy would tell me you don’t call little boys “beautiful” but folks, this boy is beautiful. He was healthy. Plump. Full head of dark hair & onyx eyes. Sucking on his pacifier. Happy. Content. 

His grandmother went on to tell me that Kaden was in the hospital from October 2014- July 2015. He was transferred to Tampa for 2 brain operations, & came back to Golisano before he got to go home. His mother and father are married now, his father is away at basic training, and they are expecting a 2nd child- mom was in the OB wing as we spoke having some tests run which is why they just happened to be sitting in the lobby. Visiting with them on the other side of the NICU walls was perhaps one of the greatest gifts we could’ve received that day. 

  

  

PS- while visiting with our nursing team we learned that this week another couple from NC were vacationing when they surprisingly gave birth to their child prematurely. The baby is being treated by the same team in the same NICU as Nicholas. I’m trying to learn more about them to see how we might help but please keep them on your hearts as their road will be similar to ours. 

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