Boy oh boy buckle up because he's one heck of an update.  

My apologizes for not being very prompt with these!  Tomorrow Emil with be 38 weeks old, we're coming up on his third month of being born.  Things that have happened since my last post.  He's now rocking a very low dose of low flow (just a little nasal cannula) after lots of ups and downs and trials of getting him off cpap we did it! The good news is they could send us home on low flow if need be!

Now that we've gotten his respiratory down the main (and final focus) is getting his feedings down.  For the majority of his life he has been fed into his intestines which he tolerated well.  At this point we've tried maybe 6-8 different rounds of gastric feeds with various amounts of success until they weren't.  The way a preemie baby will tell you they aren't tolerating something is by dropping their heart rate very low.  Sometimes this is due to their brain not being fully developed so they quite literally just forget to breathe, which drops his heart, which drops his o2 saturations, which leads to a sad momma having to stimulate his sternum to remind him to breathe.  Emil's old enough now where he doesn't typically forget to breathe but now with filling his belly it gets very full, causing compression on his lungs and excessive reflux which then results in the fun cycle I mentioned before (low HR, blue baby, sad momma).  The past two weeks have been truly an excessive amount of trial and error. In a course of less than 48 hrs they tried 3 different feeding patterns! Bolus feeds (60 min on 3 hours off, then tried 90 min on 2.5 hours off) K cycles (fed for 3 hours with one hour off) then fed for 1 hour with 1 hour off.  Yikes. In hindsight we were sleep deprived and desperate so we went with it however if I could go back I'd say we need to scratch the gastric feeds and go back to the intestine, which is eventually where we ended. 

After giving Emil a couple days to rest we tried the gastric feeds again.  Again he was extremely reluxy which resulted in Donovan and I trying to keep him upright (which helped some) for the majority of most days.  This led to extreme fatigue which the providers and nurses noticed (with me having the flexibility to not work and be here I've built relationships here so I'm not surprised they noticed) With this a few days ago they informed us they were going to let Emil have a one to one ratio with his nurse so they could spend more time holding him upright in hopes of getting me to leave his room.  I've now spent the past two days getting caught up on some sleep and have mentally improved tremendously from that.  I will cautiously say we're going on 51 hours of gastric feeds and Emil has been tolerating them better and better as time goes on.  We're hopeful this round is the ticket and I'll soon be able to start supplementing his tube feeding with nursing.  We've made some decent progress in the past with it but Emil still has some stamina to build up.

You might be wondering why all the changes, why isn't there a straighter course of action.  A few different reasons.  One babies can't talk like adult patients, so that leads to a lot of trail and error to figure out what they're trying to tell us.  Two, differences in providers approaches to treating the babies.  It's honestly pretty wild how different the plan can be from week to week based on the changing in his neonatologist.  Thankfully they do include us very often with decision making since we are so present and are with him more than anyone else, so we do often have quite a bit of say.  However sometimes as the parent I'm at a loss as to what I think he needs and helping them make those decisions can be intimidating when they don't go as hoped. 

All in all we're getting there, everyone keeps telling us this is when parents become most frustrated and impatient.  Emil is stable, OVER 5 LBS NOW, and is cute as can be, he just needs to get his feedings down which as everything has been, is on his own time 😊  Even though times are stressful, when I hold Emil in my arms I know there is nothing in this world more worth it.  I never knew this kind of love could exist.

We're continuously blessed with such wonderful people around us, getting us through this heck of a rollercoaster.  I've even made some friends during my time here.  Sometimes when I walk into the NICU I feel like Norm in Cheers 😂    Thank you all for the endless prayers, thoughts, messages, gifts, and all the love!