The Best Day So Far

It's a great sight to see the ventilator on STANDBY, but it's an even better feeling when the ventilator gets rolled out of the room!  Yay! No more tube mean Joey now has audible cries and coughs and sneezes. I never thought I would love to hear our baby cry so much!

Joey had a couple of breathing trials this morning and he passed with flying colors so it was time to extubate.  We knew that Joey had been congested and full of boogers, but the snot rocket that they suctioned out of his nose after the tube came out was one of the biggest all the doctors and nurses in the room had seen!  It was a "man-sized booger" for sure. Joey immediately did great with the extubation and has continued to thrive thoughout the day. He now just has a nasal cannula pumping just a little bit of oxygen in, but they think they will wean that away by tonight or tomorrow. With the breathing tube, the NG tube (feeding tube) in his nose came out as well.  He was given IV nutrition today before and after the extubation so that if he gagged and vomited it milk wouldn't aspirate into his lungs. So the goal was to try to start bottle feeding in the evening. And if he didn't take to it well enough they could easily put the NG tube back in.

Joey also came off of a lot of medicines today. They stopped the fentanyl completely, which was what kept him sedated and comfortable with the pain level. The good thing is that he is currently not showing any withdrawal symptoms. If a baby has been on fentanyl for 5 or more days they are automatically put on a withdrawal plan. But Joey had only been on for 4 days so they were just going to monitor him and see what happened. He remained pretty content until about 6pm and he was pretty fussy so the nurse gave him a tiny bit of morphine.  Enough to calm him but not enough to make him go to sleep. Today was actually the most awake and alert he has ever been. They also stopped his dopamine and a couple of other medicines as well.  Our day nurse thinks that he will get the IV in his arm to by tomorrow.  Jamie got to hold him for quite a while today while he was awake and it was so nice to hold him without the breathing tube. Jamie also got to "Lion King" the baby which he has been dying to do since he was born!  (If you know the Lion King, you know what we mean by this! Haha! Just think Raffiki and Simba!)

At 5 o'clock it was time for his first feeding! Mommy got to hold him and try his first bottle feeding. The goal was 21ml. He latched on really quickly at first and got about half of the bottle down, but then he lost interest and just played with the bottle.  He only took 16 of the 21ml. But that was just enough to not need the tube out back in.  His 8 o'clock feeding didn't go so well either.  He really seemed disinterested with the bottle and it took him a long time to get it down. Now was the time that he wanted to try to go to sleep. With Daddy's help he got almost all of his 23ml, but it was a struggle and he didn't seem to enjoy it very much!

So with all of this going on, we are hoping that the feeding goes well tonight so that the NG tube doesn't need to go back in.  And if his IV comes out soon then all he will have left are his pacer wires, PICC lines in his neck and leg and his nasal cannula.  The less tubes and wires, the better.  He even got to graduate to the big boy crib, or what I like to call the baby cage! His scar is looking great so far and tomorrow we might even be able to put a onesie on him!

Our big goals for the next couple days will be to get better at feeding and to try to get this heart block to self regulate. They aren't talking about a pacemaker yet, but that is the likely solution if it doesn't resolve. But they are going to give him a few more days. After those two things are doing better we could then move to the step down unit and we are one step closer to going home! We are so proud of his progress!