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Well it's actually Day 62 here in the ICC at Children's Hospital. Felix is now 6 pounds 9.5 ounces! His progress is slow and steady. He's opening his eyes more. He's moving more. He continues to make sounds, but doesn't cry out. To be honest, it's been described as faintly "goat like" but in a completely charming goat like way. He continues to keep his mouth closed -- not interested in bottle feeding or pacifiers (more on that later.) And he's enjoyed a steady influx of awesome visitors. Thanks so much to everyone who's stopped by or sent us their thoughts. We greatly appreciate all of the positive vibes -- in person, online and via prayer.
The photo above is from Day 60 -- and you're seeing the waning days of the Nasal Gastric (NG) tube. Felix has been fed Haley's milk via the tube through his nose, down his throat and into his belly since birth. But the NG tube is going away...
...Because today, March 28, Felix underwent surgery to install a G (Gastric) tube - see the white device in the middle of his stomach, which will allow us to send milk directly into his stomach. Yes, there's a hole in the middle of his stomach (click the link above to learn more). The G tube means we don't need a tube down his throat, which reduces agitation and will hopefully speed up his interest in consuming milk through his mouth.
There's a lot of information in the full body photo. Here's what you're seeing.
In the lower right, there's a red light attached to Felix's left foot. That's a pulse oximeter ('pulsox') that measures oxygen saturation, which is a another way of asking, "Is Felix breathing properly?" He's been 'wearing' the 'pulsox' for the past 62 days. When he goes home we'll switch to a different kind of monitoring system.
In the lower left of the photo, on his right foot, is a splint used to wrangle an IV. That should go away in the next 24 hours. You can also see three wires. They lead to sensors. You can see one of the sensors just under his chin, and another peaking out of his diaper. The three sensors work together to monitor Felix's heart rate.
The red hat is critical. It's an homage to Bill Murray's outstanding performance as Steve Zissou in The Life Aquatic.
And there's the diaper. Also critical.
During today's surgery we also inspected Felix's ear canals. He had been given a hearing test earlier last week which he didn't pass. There was some speculation he might have fluid in his ear canals which would inhibit hearing -- but we learned today that he doesn't have fluid. The current hypothesis is that Felix is, you guessed it, immature. Meaning, the parts of his body which enable him to hear are slower to develop. Now, he can hear. But his ability to hear is reduced, i.e. He can't hear whispering but he can hear louder speaking. It's very likely Felix will acquire hearing aids in the near future to help amplify sound, and he might need them his entire life.
In addition to inspecting Felix's ears today while he was under anesthesia, the Ear Nose and Throat (ENT) doctor also clipped Felix's "tied" tongue. Ankyloglossia restricts the tongue's range of motion. In Felix's case, it was very minor. But it could have been impacting his ability and desire to feed through his mouth. About six hours after surgery was over we witnessed Felix opening his mouth widely -- and take a pacifier -- which he hasn't done, or shown interest in to date. So, we're very excited to see this positive result so soon after surgery. It's the little things.
We don't know yet why Felix keeps his mouth shut. It could be neurological -- the signal to open isn't making its way to the jaw, or there isn't a signal to begin with. Or it could be a reaction to all the suctioning done when he was first born -- and he's developed an aversion to opening his mouth. It could have been the tied tongue. It could be all of the above. It doesn't appear to have anything to do with the muscles in his jaw. The answers will come slowly, over time.
Speaking of time: When does Felix go home?
First, we have to prepare. Today, Tim, Haley and both grandmas took courses in infant CPR, apnea and choking resolution. We learned how Felix's take-home breathing monitor works. We understand how to monitor him at home.
And now it's more or less up to Felix. He's already proven his ability to hit the wall while peeing from his crib, on his back. (We learned that lesson.) He will begin to receive milk through his G tube tomorrow morning. The key is stability. If he continues to breath consistently, as he has been; if he continues to grow, then he's demonstrating stability and can head home. This could mean a week from now or a few days from now.
Anyway, tonight he's got a Tylenol up his butt and he's sleeping soundly. (Seriously, that's the most effective way to administer pain meds in this scenario.) On a related note, please enjoy the following performance of "It's Time to Go Poop," a proven poop-inducing ditty.
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