What "OK" looks like in NICU

I get so many questions about Big D.  How is he? What's going on with him? And often, my response it "he's ok".  Mostly that is because, if I go into all the details of what is going on - it's a 20 minute conversation and honestly - who has time for that?! I don't even have time to update everyone for 20 minutes.  So, I respond "He's ok".  I wanted to give a look into what "ok" means for a NICU baby.

D is now 30 weeks gestational age.  He has been here with us for 5 weeks now.  He is now 1520 grams.  A "big" 5 week-old/30 week gestational age.  D is doing well because most babies around us are having surgery or have brain bleeds.  They have NEC (inflammation to their intestines - often resulting in surgery to remove the inflamed portion of the intestines), slowed developmental growth due to the brain bleeds, and heart problems.  I see a new baby going into surgery on a weekly basis.  D is doing well.

He is "ok".  Last week D's heart started having arrhythmia's.  There were couplings - and with that came the monitors going off constantly because it would miss the 2nd beat and say he was brady-ing.  Brady-ing is when the heart rate drops.  He has also been diagnosed with PDA (flap in heart that should be closed but isn't yet... it can close on it's own or will need surgery/meds to close it).  Due to both of these, we stopped his caffeine dose and started him on meds to help slow down his heart.  When we stopped the caffeine, we increased his risk of brady's and apneas.  We started caffeine so he wouldn't fall into a very deep sleep and forget to breath.  Now that the caffeine is stopped - we are already seeing more bradys.  But we can't start the caffeine again because it'll mess with his heart too much.  He was also put back on the CPAP (breathing machine that helps him breath) - because he didn't handle the HighFlow machine (it's less help than CPAP) well and his lung collapsed last week.  So we put him back on CPAP and to help his lung expand again, it was at a pressure of 7 (pretty high!).  The pressure pushes air into his belly which causes him to have "cpap belly" or a very large, swollen belly.  His belly is large now so he doesn't tolerate feeds well at times.  Less food is better but we can't give him less or he'll start losing weight and we need him to gain weight so he can keep developing - it's also important so if we need to do heart surgery - he is a bit bigger.  But the food is causing his belly to get fuller which then causes him to brady.    And we can't slow down the CPAP because his lung is still collapsed and we need to open that.

So the lack of caffeine is causing him to brady - which puts stress on the heart - but we can't start it again because it'll mess with his arrhythmias.
We can't slow down CPAP because his lung is flat and we need to open the lung.  This is causing a big belly which causes bradys and puts him in danger for NEC.
We can't slow down the amount of food because he needs to eat to grow so he can be better equipped to handle surgery and to be able to breath on his own.  But the food is causing bradying as well.

So it's a fine balance.  My analogy for where we are right now is: We are on a train, going at high speed.  We see the track ends and there will be a wreck but we can't get off and we can't slow down.  No matter what we decide to do, there are negative side-effects.  We must pick a poison and pray it's the least deadly one.

This all is very overwhelming to me.  There are so many moving pieces.  So when people ask: "He's ok" because he is doing better than most micro-premies... though he still has his scary struggles to get through and he is on the brink of falling into a major disaster - be in heart surgery or getting NEC or bradying and having to be intubated.

God is good.  God has truly gotten us through to this point and I believe He will continue to bless us.  This is the peace I find on hard days.  God is here and He's holding D and myself and Ash and everyone who has been so sweet to help us.  I'm giving it to Him.  To HIM be the glory of what great things has been and will be done through and for Big D.  That said - I am still scared to no end and still hold my breath and get tears in my eyes every time D brady's and we have people running to his bed to "wake him up" or "get him to breath again".

D is "ok" :-) But we are watching 100 moving pieces to see which one will drop first....