S'Been One Month!

Henry's one month old!
Time flies when you're hangin' out at at CHOP!

"Smile, Henry!" - - and he did!

Henry's band surgery is officially a success; it is doing it's job of limiting blood flow through the pulmonary artery to his lungs. As a consequence, it has lowered his heart rate and respiratory rate. He still breathes faster than a healthy-heart baby, but it's working for him.


Post-surgery, we hit a couple road bumps, such as some irregular stools prohibiting Henry from eating for four days. They supplemented him with IV fluids and IV fats/nutrition and after many tests and xrays, the problem resolved itself. He's almost back up to full feeds which are being continuously delivered through his NG (nasogastric) tube. Another yellow flag, which we're still dealing with, are occasional Bradycardia episodes, or "Bradys" for short. This is when Henry's heart rate dips unusually low, usually less than 60 beats per minute. His Bradys can range from 40 bpm to 80 bpm per episode and usually only last for about 1-6 beats, mere seconds, but noteworthy. They seem to occur several times a day. Because of this, more various testing has been ordered, including an apnea test (Trivia: apnea comes from the Greek for "want of breath"), which is going on yesterday into today.

In order for Henry and I to come home, several things need to happen. First, they want him to start actively gaining weight. As of yesterday, he weighed 6 lbs 9 oz, which is 1 oz less than he weighed at birth. Usually babies lose weight in the first week after birth but then start gaining. Henry is 30 days old and still not up to his birth weight, but he's doing well on getting there.

Oh, big yawn!

Second, they want to decide how he'll handle his feeds. Ideally and usually, they do not like to send home babies/children that need CONTINUOUS feeding through their NG tube. They like to see at least 50% bottle feeding. In Henry's case, this might be difficult. You might think it is due to his cleft lip/palate, which is actually NOT Henry's case; it is due to the effort it takes to eat because of the cleft l/p, the amount of energy it takes to WORK at eating. That works his heart too much. Also, because of his open palate, his airways are combined. Usually babies breathe through their nose when they breast/bottle feed. If Henry does this, he will suck fluid down into his lungs and choke. His sucking reflex is quite strong, it's all the other OBSTACLES that are causing him such grief to bottle feed, poor guy. As a result of ALL THE ABOVE, Dr. Ravishankar, Henry's cardiologist, mentioned the possibility of inserting a "G" tube, or gastrostomy tube. This is a surgically-placed permanent feeding tube that lasts for up to 6 months and will come out of his abdomen.

Third, and more generally, they need to figure out what kind of monitoring will be needed for Henry. Will he continue to have Bradys? Will his respiratory rate continue to dip now and then requiring a monitor? What about if he has an apnea issue - is that a separate monitor? And if there are a bunch of monitors, what will that require from us, as parents? Can WE work all this stuff or will a home care nurse need to be set up? So many questions, many still unanswered...

So, as usual, Henry's and my stay here in Philly is "Day to Day." I no longer really think ahead. I figure when they're ready, they'll say the word and it will take me less than 30 minutes to get my stuff together and boogie out!