Critical?

When Baby Z was first transferred to the NICU at CNMC everyone kept telling me he was the most critical patient there.  That he was the sickest.  That he was a fighter.  In fact, a few of the people that attended to him the night he was transferred (nurses, doctors, and transport team members) have come in and said how strong he is and how much of a fighter he is.  He must have been in pretty bad shape when he was admitted.  The doctor who admitted him was chocking back tears as she was telling me this.  His condition was often described as critical but stable.  He was placed (and currently residing) in the back corner room, the one reserved for the sickest of patients.  He was assigned a nurse dedicated solely to him and that nurse was generally training a new nurse - so in essence he had two full time nurses.  All these things are clear indicators that Baby Z was very, very critical, yet all this time I have never thought of my son's condition as critical.  Never once did I fear we would lose him, never once did I look at him and think he was the sickest patient in this very specialized NICU.  Until now.  Now that he is on the mend.  Now that I am able to look back at where he has been.

When he was admitted, and for the first 6 days of his stay, he was on 100% oxygen with the added nitric oxide and that was barely keeping his saturation levels afloat.  His lung collapsed in transport.  He was on the most intense ventilator - the next step up was ECMO, which is a procedure that pumps the blood from his heart through a machine and then back into the heart, completely bypassing the lungs.  They had completely sedated him so that he was not breathing on his own.  There was literally NO room to go up on his settings.  The machines were keeping him alive.  

Now he is breathing in 21% oxygen - the same as you and me.  He is on a traditional ventilator with low settings, meaning he is mostly breathing on his own.  They are lifting the sedatives and by early tomorrow morning he should be completely off the nitric oxide. They are planning on taking him completely off the ventilator tomorrow morning.  Replacing it with nasal oxygen tubes.  Then they can start feeding him via his feeding tube.  Although they still won't let me hold him (his A-line was acting up so they didn't want him to be moved too much) they say that by tomorrow I should be able to since the A-line will be out - I am holding my breathe.  Although we are not completely out of the woods we are getting close.  We are at least on the right path.  

This morning he opened his eyes and was able to actually focus on me.  It was no longer the blank newborn stare.  A look of terror passed over his face and he started to scream and throw his limbs around - his scream was silent since his ventilator tube is currently running through his vocal cords, but nonetheless you could tell he was screaming.  He realized where he was and what was going on.  I grabbed his little fingers, focused in on his eyes and sang to him.  Calming him down and letting him know it was going to be alright - Mommy was there.  We made eye contact and did not break it for at least half an hour.  He is so aware now.  He squirms and moves and tries to pull the tube out of his mouth.  This awareness means he is healing - by seeing this in him I realize how far he has come.  They now longer have two nurses assigned solely to him - he isn't sick enough that they want to train on him.  His one nurse was given another patient further down the hall - a bit unnerving for Mom and Dad but a good sign that he is improving.  One of the nurses started to ask me basic discharge questions like do I have a car seat for him and everything I need for him at home.  They have told us to bring in some clothes.

And so looking back has taught me some things.  It has taught me how precious the peace the spirit brings really is.  I wouldn't have been able to do all I've done if I didn't have the peace and reassurance that everything would be alright - that I'd have him forever no matter what.  It has taught me the power of prayers - I know there have been many, many prayers in our behalf and we have felt them.  It has taught me that even though the world may try and tell you one thing - like your son is critical - the spirit can tell you the right thing.  The things you need to focus on - like your son is a precious child of God who is being watched over and attended to by those on the other side.  I am trying not to get my hopes too high - we have learned the principle of two steps forward, one step back.  But there is great hope in knowing that your son is no longer "critical."

Oxygen levels are normal - 21%!!

New ventilator

Baby Z wearing Big Sister's socks to keep his toes warm.