The NICU is hard – Even 9 Months After Discharge!

Holy cow, guys, the NICU is hard! My daughter is doing amazingly well, and turns 1 soon. She is also going to be the March of Dimes ambassador for the Charleston March for Babies in 2017. To help promote the event, there will be a video to share Kennedy’s story.

A few days ago, we shot an interview with one of her doctors in. the. same. room. where she was. That was completely unplanned. We knew we were shooting in one of the NICU nurseries, but had no idea it’d be in her module. We walked in and I just started crying!!! I was staring at the spot where I spent weeks and weeks of my life.

My emotional response caught me totally off guard. As I said, my daughter is doing amazingly well, and I was there for a HAPPY reason! Before we got there I was so excited to see everyone, but once we got there I was a mess (but I was still super excited to see everyone!). That’s the thing about the NICU, you really just don’t know what’s next – even after you’re gone, apparently! If we would’ve been in the location where she was when she had the lung condition, I probably would’ve lost my mind! It’s just so crazy how you don’t think that things will effect you one year later, and particularly when they’re positive things. I guess when things are happening you’re just taking everything one day at a time, and when you’re on the other side of it, it can be overwhelming.

I’m thrilled to be one of the NICU success stories! Kennedy’s story is amazing, and to look back at everything that’s happened over the last year, it’s mind blowing. This little girl went from being 12 weeks early and on a ventilator for a long period of time, to leaving the hospital on her due date and breathing on her own, to being almost one year old and on track with her birth age  – and has been for several months (which her Early Interventionist has said is statistically pretty unheard of). Kennedy’s the strongest person I know – quite literally now, I’ve never seen another baby with actual muscles. I am pretty sure that I need to get in shape before she forms thoughts that she’ll remember because otherwise she’s going to be putting me through some kind of 5am bootcamp to keep up with her!

Back to the NICU to celebrate Kennedy’s birthday, my husband and I made 5 care packages for NICU babies who will be born on her birthday this year. It’s nothing big and it’s nothing super exciting, just a few helpful things and a birthday card for the new baby from our family. But, 1 of the 5 packages had a more significant gift in it – it’ll hopefully go to a baby who is born in her birth hour! I’m hoping to find her closest birthday twin. 🙂 I’d love to chat with her birthday twin’s family and be there to lend an ear when the NICU gets tough or scary. Something about being in that environment changes you forever. For real.

The NICU that she was in is really interesting. There are two main sections, and each section has 2 rows that face each other. On each row, you’ll have about 8 babies (I’m happy that I’m far enough removed that it’s no longer a vivid picture burned into my mind). So you have at least 16 babies in very close quarters. It can be loud. It can be scary. It can be amazing. It can be touching. Because of HIPAA, obviously no one from the hospital can tell you anything about anyone other than your own baby (and let’s face it, you’re so wrapped up in your own concern for your baby that the stress of the rest of the babies would set you over the edge!), but because you’re in super close proximity to the other babies, you sometimes hear words or treatments or can see their isolette and it’s really challenging to not compare.

For example, in our case, there was a baby who was older than Kennedy, born earlier than her, and who was already in the hospital for quite some time when we arrived. This baby was a warrior. She had a tough road, but she was kicking butt, until one day when she suddenly got sick (or had some kind of emergency – again, because of HIPAA, we have no idea what went on.), and went back on a ventilator, had all kinds of other interventions, and from what I gather, didn’t make it (although I don’t know for sure because we were transferred to a different floor). When we were next to that baby (as in, an IV pole and a rocking chair away, literally), it was tough to not worry. We were like, oh my gosh, she was fine, and now she’s back on the ventilator and now she has this and that! What if that happens to our baby???? But, we had to constantly remind ourselves that we didn’t know the story. We had no idea what that baby’s medical concerns were, and that we couldn’t compare. It can definitely be a mind game with yourself.

The NICU is the sweetest and saddest place in the whole world. Miracles happen every single day because of amazing doctors and nurses who dedicate their lives to these newborns, babies who are beyond strong and are doing amazing things well before they should be living in the real world, and of course with the help of some technology. But really, it’s the people – the medical team and the babies who are all special people who do extraordinary things everyday. I think it’s impossible to be in that environment and not leave with at least some positive memory… I guess maybe it does make sense to be emotional. After this last visit, I know that those feelings will be with me forever. I am so thankful that we met everyone we did, and that they all played a part in making sure Kennedy was healthy, happy and got home with us where she belonged. I am also thankful that Kennedy will never remember her days in the hospital, but that she will never know a time when those people (who have now become friends) weren’t in her life.

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