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Wednesday, August 11, 2010


It has been one week and one day since Jonah had his Norwood surgery. Even before Monday when Jonah had his chest closed, his medical team was already prepping us for the goals and expectations they had for him once this big milestone was reached. This was explained to us very loosely; no guarantees, no promises.

Jonah has continued to tolerate his chest closure very well.  Yesterday was another big day...the tentative plan mentioned previously was executed. One chest tube was pulled. One central IV line was pulled. Epinephrine was stopped. Feedings of breast milk started at a slow drip. Sedation significantly decreased. The next goal was set for Thursday...Jonah's doctors want to remove his breathing tube. Rob and I could not have been more thrilled to even hear them speak of this so soon. Again, when the path was mapped out for us, the timing of this was, and still is, not written in stone.

Before they can remove the breathing tube, Jonah is "tested" to evaluate his ability to breath on his own. This took place today. The staff do this by essentially turning off the breaths of air that the ventilator is giving him and allowing him to take those breaths on his own. He continues to receive assistance from the machine but it is only intermittent and serves to give his own breaths a little boost. While this trial is being run, there are many things to monitor. The nurses draw frequent blood samples called arterial blood gases. This results in several values but an important one is Jonah's carbon dioxide levels in his blood. Carbon dioxide is exhaled normally when we breath...too much left in the body is not good. It truly becomes about the quality and not the quantity here. During Jonah's first go of it, he did okay. Not great, not horrible, but just okay. Basically, the quality of his breaths were not quite sufficient enough to plan on taking the breathing tube out tomorrow; his carbon dioxide levels were a little higher than the doctors would like. Also, Jonah is still kind of shaped like a bowling pin (as Rob has described it). He has just a bit more fluid to loose around his belly, a factor that is not helping the situation. With that, they will "test" him again tomorrow looking at possibly removing the tube Friday or Saturday.

We are so thankful for many other things today. Jonah has been handling the breast milk in his stomach wonderfully. It's the first time in his short life that he has actually been fed!! Pretty basic, I know, but this is major. Until now Jonah has been getting his nutrition through an IV.  He is waking up a more and more from his sedation which he needs to do in order to start working on his own. And, Jonah continues to get rid of the extra fluid. So, we are giving credit where credit is due....Way to go big guy, keep up the good work!! We love you !


  1. Yay Jonah! Olivia is rooting for you. So glad to hear that the chest closure went really smoothly. Even better that the little guy is getting some much needed food. Stacie, that has to make you feel good that all the time invested in pumping is finally going to some good use.
    Rooting for you guys!
    Lisa, Brian & Olivia

  2. We are so happy to hear one good thing after another. Jonah sure is a fighter! You all are amazing! We are sending you prayers, positive thoughts, and love from Minneapolis.
    Connie, Greg & Liz