More Normal

The hiccups this week were few and unimportant mostly. Last weekend Fredy and I finally got away for a little more than 24 hours together. It was planned all week because we knew that there were chronic vent nurses working the days and nights that we needed them to, and everyone was so excited for us. It was really really nice, and very needed. Of course Sunday the nurse who had him Saturday called in, so when I called in to check on Tony it was a brand new nurse who had never had him other than one day on his orientation 2 months ago. There was even a nurse on our "list" in the same hall that wasn't placed in his room, it turned out that the night shift charge never saw the list. Thankfully everything was fine. I'm very glad we left, even with the added stress Sunday. I hope we can do this more in the future.  The nurse manager came and apologized and it was all very productive in the end, so I think it can be even less stressful going forward. We were also supposed to take Tony outside for the first time Wednesday, our favorite NP has been talking about it for weeks. Everyone was very excited for that moment as well, but when the time came the respiratory therapists said that it wasn't allowed and they didn't have enough staff that day. It turned out that it wasn't true, I think they just didn't want to mess with it. Within an hour the medical director had it in writing that it actually is allowed and we have a planned outing for next Thursday as long as the weather cooperates. I didn't even have to get angry that time, everyone else was angry for me. I definitely finally feel well supported. It's nice to see things actually changing even if there has to be hardship for us in order for it to happen. This week the nurse practitioners went down to the NICU to meet a family that is going to be coming to PICU with a trach baby, I had talked a lot with them about how helpful that could be. They also got a tour of the PICU, something that I also said would have been helpful! It makes some of our suffering really worth it if future families can feel supported from the start.

Tony went from taking 20 mls in his bottle last week to 40 mls this morning. Still breastfeeding, and staying awake longer for that. He's really trying to roll over. We hit 5.9 kg for the first time today, that's 13 lbs! He's now only on gas drops and vitamins, we got rid of his melatonin a couple of days ago. It feels so nice to know that he's really not taking in anything that a baby at home wouldn't take in. He's so much more aware and not nearly as angry. He's tolerating his trigger trials for 9 hours, we're working towards 12 hours next week. I got to sit with him on his new floor mat and have a long uninterrupted conversation with the chaplain that visits our room every week. He fell asleep on my lap when he got sick of lying down. It was so normal! Looking forward to more of these kinds of weeks. 

Also, I can't remember if I mentioned the asymmetry in his face/expressions, but they addressed that a couple of weeks ago. The neurologist diagnosed it as Asymmetric Crying Face, which is harmless. Since then we've kind of decided along with the team that it could be that, but it's also almost definitely related to his ear and probably facial nerves that are different because of his ear deformity. No one seems to think that it will affect him much, will probably just be another Tony thing. 

Feeling very thankful that some of the fog has finally lifted, being able to look back on the last 7 months with more clarity and less distress. I knew one day I would be able to see the good being worked through our trials no matter the outcome, it was just almost impossible to see it in the moment. Thankful for lots of conversations about that the past couple of weeks. We aren't just in survival mode anymore, we're starting to thrive, even if it has to be in the hospital. 

There is something that I've been wanting to do for a while, and I think now is the time to ask before the memories of how hard these first months have been hopefully become less painful for us and everyone who has bared our burdens with us. I'd love it if anyone who has been following Tony's story would write down/type up some things (or a lot of things) that they have felt or learned or experienced because he was born. Elaborate or just a few words. I know how helpful writing to him in the journal I started back in August has been for me, and I think it would be awesome to let him read letters about his impact someday. You can email them to me at sghersnisu@gmail.com or text me at 217-251-3202 to get our address if you don't already have it and want to hand write it. Or if you want to keep it for yourself, that's fine too!

I know we aren't out of the woods by any means, but I'm thankful for more "normal" moments that are allowing us to breathe. Thank you again to everyone who has prayed for and thought of him and us. Praying this week that we could be a light to others that we know are having a hard time!

We got to take a tiny walk down the hall after they did our "30 day clean" in our room. Thankful that we didn't have to move rooms, we just got to hang out in a little side room for a while instead. And they are now going to be cleaning or switching out every baby's crib when they do the 30 day cleans because I brought up how they do that every 2 weeks in the NICU!