Giving Credit.

In the world of most under-recognized professions, nurses are definitely towards the top of the list. I don’t think that’s because people think what they do isn’t important, but more that people just always turn toward a doctor or surgeon to get information. Nurses, unfortunately, get overlooked often.

However, we’ve been in the hospital for eight months straight so far. Anyone who has spent a lot of time in a hospital, knows finding a good nurse is like finding gold. We’ve had every type of nurse imaginable. And although we haven’t felt that every single one of them was a good fit for us, that doesn’t mean they weren’t a good nurse. It just means that we didn’t click with him/her and we preferred someone else. Our biggest indicator for a good nurse is obviously how she acts, treats, and provides for Griffin. Obviously we want someone who gets along with us as well but a nurse that goes above and beyond for him is everything.

Just a couple of feel good nurse stories throughout this experience:

  • Our primaries at our home hospital during our NICU stay paved the way for Griffin to be successful. I have already told them personally but if it weren’t for them, Griffin wouldn’t be here today. It makes me emotional talking about it but they saved his life. The doctors wanted us to withdraw from Griffin twice, believing there was nothing else that could be done for him. But our nurses weren’t having any of that. They advocated for him to the point of getting in trouble themselves because doctors thought they were a little out of line. (They absolutely were not) One of our primaries stepped up and despite the fact that she could have gotten in trouble (which is absurd) she told us to look for second opinions. We didn’t even know that was an option, so that alone means everything to me. Without her we probably wouldn’t have found Dr. Hanley at Stanford. I don’t like thinking about the possible outcome if that hadn’t happened.
  • His primaries there showered him with so much love and attention that you wouldn’t even have known they weren’t related to him. We’d come into his room and he’d be wearing another new outfit or have another toy that they had bought personally and brought in for him. They would plan out times on when the family wouldn’t be there so they could finally have a chance to hold him. (Even though we always told them that they could hold even if we were there) I can’t explain how much it warmed my heart to log in to the Nicview cameras and see one of them sitting in his room charting while he sat in their lap. They’re family to us now and always will be.

When we came to California for Griffin’s surgery we were worried we wouldn’t find the same type of care for him. Not because the nurses here aren’t amazing, but because they didn’t know him yet so he wouldn’t be loved on as much. But we were completely wrong because he touches the hearts of everyone, every where he goes.

  • Not only do the nurses here have SO much knowledge about Griffin’s condition (because this is the meca for MAPCAS babies) but they humbly explain every little thing to us. I have learned so much about his condition here from our nurses, it’s truly unbelievable.They also take the time to make sure we feel as at home as possible. They help me decorate his room with pictures and cut outs. They make sure we have everything we need, even offering to go get us a water or snack. And holidays are special even though we’re not with family.
  • We weren’t expecting to be here during any holidays, let alone three. So when Halloween rolled around I was upset that I didn’t get to spend it with the kids back in Ohio like I had originally planned. Griffin’s nurse that day went above and beyond to make it special here as well. Going out and not getting just one outfit for him to change into, but three. And one of them was such a hit that I still have people coming up to me asking to see a picture. Doctors came in and had me send the picture to them so they could show other people. Now that the picture is up with others on his room door, everyone can enjoy it.
  • I think the moment that surprised me the most here was one day when Griffin had a new nurse. She was so sweet and listened to all of my tricks on how to make him happy if he got upset. The main thing he likes is having his head rubbed (simple I know). I didn’t expect her to actually spend time doing any of these things because she had another child to care for as well so she was busy. However, while I was sitting on the couch, I heard her humming and I looked over and she was giving his tiny little forehead a massage. Not because he was upset, but just because. She was just standing there singing to him and rubbing him while he stared at her with happiness in his eyes. I was immediately emotional because that’s all I want, for him to receive as much love as possible.

People forget about the nurses. But they’re the force behind everything that happens at a hospital, doctors office, clinic, you name it. They’re the reason so many children and adults get to go home happy and healthy. Yes, the doctors and surgeons work their magic and get the big things done. But the nurses are the ones standing there all day, watching the monitor, checking the temperature, giving the meds, calling the doctor with any observation they see that warrants attention. They’re the ones on the front lines with the family, consoling the crying mom and answering the dads questions. They’re giving motivational speeches to the parents on how life will change after their child comes home with a trach, or pacemaker, or G-tube so they can have some comfort.

Nurses literally make our world go round and I don’t know how to thank them enough.

A quote for my nurse friends…

 “they may forget your name, but they will never forget how you made them feel” – Maya Angelou

Behind the Scenes

Everyday people across the world aimlessly pick up their phones and click on Facebook, Instagram, Twitter, or one of the many other social networks. There may be something they want to read in particular or they may just be bored, scrolling down their timeline. Every once in a while they’ll see something interesting or funny and tag their closest friends or family so they can share it with them.

I’ve thought a lot lately about posts that people share, painting a picture of their lives but really only skim the surface. They’ll write about the big things they want people to know but don’t give much detail on the process of getting there. This isn’t intentional, but people as a whole tend to care only about the main points and less about the details. This isn’t always a bad thing, people just get caught up in the moment and everyone is always on the go. We have busy lives and we want to get to the point, so even when we share our own stories, we minimize to get the point across.

I’ve realized that we have been doing that a lot with Griffin’s medical condition. People ask; “How’s Griffin?”, “When do you think you’ll get to bring him home?”, “How are the older kids handling this?”, “How are you and Jarryl?”. And we minimize, every single time. The same responses to different questions, “he’s getting better, slowly but surely”, “we’re okay, hanging in there”, “the kids are ready for us to be home but they’re okay”, “I’m not sure when we can come home, but hopefully soon”. And we leave it at that, and people take it and move on.

But the truth is, behind the scenes, things are a lot harder than we let on. We don’t talk about the anxiety we felt the day he had his 15 hour open heart surgery. Or the feeling of seeing him straight out of surgery and how his skin was almost purple and he was so swollen it looked like his face had been beaten with a baseball bat. I don’t talk about seeing his chest open for the first time (they couldn’t close his chest after surgery because there was too much swelling) and how it knocked me back for a second, seeing his tiny little heart and lungs in his chest, just beating away. Or how I got used to seeing it open, like it was normal, until ten day’s later when they finally closed it.

I don’t mention the multiple scars all over his body from being poked and prodded with needles. Or how we have to be the ones holding him down to be poked and prodded with those needles. We don’t talk about how we will literally sit and stare at the monitor all day to make sure his stats are where they need to be. I can’t even count on both hands how many times a nurse has told us to stop staring at the monitor because it will make us crazy, and they’re right. Because thinking about going home without a monitor to show us how he is doing fills me with so much anxiety it overwhelms me.

Mostly we don’t talk about how we’re feeling. I don’t talk about about how I cry in the shower every other day because I’m overwhelmed and it makes me feel better to let it out privately. Or how Jarryl will shut down and not talk to anyone until he can sort things out in his head on his own. We don’t tell people how the kids call us and cry because they miss us so much and how it tears us apart. Or how they’ll put us on Facetime and just sit the phone down next to them while they watch T.V. to make it seem like we’re sitting there beside them, talking to us about the show intermittently just like if we were home. Dreaming about us actually being there to hold them, laugh with them, play with them, and just be there with them.

The thing is, we’re not the only family that goes through things like this. Whether its another medical family far from home, a military deployment, or a job that takes you far away. People everyday across the world are dealing with huge issues but only share the moments they deem appropriate or enough to share. So the next time you ask someone how they’re doing, while dealing with something big, know that they’re only skimming the surface and be OK with that because maybe that’s all they can handle talking about. But know when they ask you to pray, send positive vibes, or send love, do it because that’s when they need it the most. That’s when they’re at their most vulnerable and they need all of the support they can get. It always takes a village.

“My dark days made me strong. Or maybe I already was strong, and they made me prove it” – Emery Lord