Josiah has been on the ventilator since he was born. He needed lots of help to breathe, since his lungs were so underdeveloped (right where they should be for 31 weeks gestation, but not ready for breathing!). The ventilator was the big tube down his throat. It gave him a certain number of breaths per minute, and he was able to breathe other than those. When he was born I believe he started on 30 breaths per minute, then they turned him down to 20, then he spent a couple days at 15 breaths per minute. They don’t want to leave babies on the vent for too long, because it puts pressure in their lungs which is not natural and can damage the lungs, but he just was not ready to come off. They did extubate him at one point (Friday I think?) but he didn’t do well at all and they put it back in. It’s a fine line for when to remove it because you don’t want it out too early obviously, but its definitely not a forever solution!
He was so agitated all the time up until now. He wanted that tube out bad. He knew right were it was and would get a good grip on it and even pull super hard. They actually wondered if he would take it out himself! (They would have let him, and seen how he did and re-intubated if necessary). Every time we went to see him he was upset. He would wiggle around, “cry” (no sounds come out when there’s a tube down your throat! But he made quite the facial expressions!), and his breathing was so rapid. We saw it up to 130+ breaths per minute! They wanted that number to be under 70. He hated being touched, it just made him more agitated. It was very hard to watch.
They told us last night that the fact that he was fighting it was a good thing – he was strong and alert enough to care. If he was just limp and tolerant, that would be no good.
When we arrived tonight his nurse (another AMAZING NURSE, Christine) asked if I had talked to anyone yet today. I told her no and she got a big smile on her face and said “no more tube!” 🙂 They removed it at some point today, and he is like a brand new kid. He still needs breathing support, so now he’s on a machine called cpap. It goes over his nose, and is basically like a sleep apnea machine. It’s just a constant flow to keep everything open.
The best part about the cpap? He gets to wear an adorable hat!! Isn’t he cute?
The orange tube in his mouth is his feeding tube. Eventually when he transitions off the cpap to the nasal canula, they will put it down his nose, but the cpap can push air in their bellies, so they like to use the larger tube a little longer. He is so happy to be able to close his lips, though! He lets the cpap fill his cheek with air, then blows bubbles to let it out. So, so cute.
He is overall just a much happier baby now that that tube is gone! He loves to be touched now (although, only firm touch. No stroking, etc. His nervous system is still developing and anything other than firm touch is too much. This is a hard thing to learn as your natural instinct is to stroke a baby’s sweet skin!). He can cry now, and his little squeaks melt my heart. When he does cry though, he loves a firm hand on his back (he was laying on his belly tonight), especially from his daddy.
This is all a huge step forward for him. We still cannot hold him because he has his arterial line in his umbilical cord and it is very fragile, but they’re hoping to remove that tomorrow.
He is a strong and feisty one! He needs to not bend an flail around his arm with his PICC line in it, but he does, so they have his arm taped to a board (still somewhat flexible). He wants it free so bad! He has ripped the tape off multiple times today! Stinker!
Also, he was under the bilirubin lights for jaundice yesterday. They thought he’d have 2-3 more days but when we arrived tonight he was off! His levels may still go up, but his nurse yesterday said they usually level off around 7 days old.
It is quite surreal to think that at this time a week ago, I had NO idea all of this was about to happen. I checked into the hospital the next day, and you all know the story from there. What a week. I’m beyond thankful for the ways I’ve been cared for – both overall by a God who always knew this would be my story and orchestrated it all perfectly, to the physical care of the nurses, doctors, friends and family around me. We are so incredibly blessed.