| Later updates | Aaron update 125 |
| Subject: Aaron update 125 Date: Sunday, August 24, 2003 4:36 PM From: Kevin Quick To: Aaron Update List We’ve returned from our 3-day trip to San Francisco. Thursday morning, we met with a team of specialists: a pulmonologist, a nutritionist, a pulmonary nurse and a physical therapist. Thursday afternoon, we met with Dr. Good, who checked Aaron’s eyes. Friday morning, Aaron was sedated and had a 4-hour pulmonary function test (see the attached photo). The good news is that Aaron’s eyes are fine; his ROP is completely gone. And, developmentally, Aaron is right on track with the things that he’s able to do such as reach for things, roll over, etc. The major concerns now are Aaron’s weight and pulmonary (lung) function. We don’t have the final results of Aaron’s pulmonary function test; it’ll take two weeks to analyze the data from the test. Initial assessment, though, is that there is some restriction in Aaron’s breathing, especially when exhaling. His chronic lung disease, which involves scar tissue in his lungs, is causing the air passageways in his lungs to be constricted, so it takes more effort for him to breathe (hence burning more calories), and his lungs are not as efficient in processing O2 and CO2 as a normal baby’s lungs would be. Again, we’ll know more about the condition of Aaron’s lungs in two weeks. The major concern now is Aaron’s weight. At 9 months (Aaron’s chronological age), the average baby weighs 20.5 pounds and is 28 inches long. At 5 months (Aaron’s corrected age), the average baby weighs 16 pounds and is 25.5 inches long. Aaron currently weighs 11 pounds and is 22 inches long. The chart that I got these numbers from (given to us by Dr. Karen Hardy, Aaron’s pulmonologist) shows a range from the 3rd percentile (small babies) up to the 97th percentile (large babies). Even using Aaron’s corrected age, his weight and length are off the chart, below the 3rd percentile, and probably below the 1st percentile. Also of concern is that his growth curve is actually growing away from the “normal” curve, so he’s getting farther behind in his size and weight, rather than catching up. Dr. Hardy was concerned about this. She said that at Aaron’s low weight and small size, any illness (colds, etc.) could be very serious and would probably result in him having to be hospitalized. She said that we need to continue to keep him and us relatively quarantined through the coming winter (it doesn’t look like we’ll be returning to church soon, unfortunately). When we asked whether it might be good to expose Aaron to some germs so his immune system can develop antibodies, she answered that no, any illness right now would be far too risky. Dr. Hardy said that Aaron needs to eat more, so she and the nutritionist put him on an accelerated eating schedule. If this doesn’t do the trick, we’ll have to put Aaron back on oxygen (his damaged lungs may be be burning too many calories). Dr. Hardy said that the longer Aaron waits to catch up, the harder it will be to do so. So, we need to do all we can NOW to get Aaron up onto the growth chart. Aaron was on a 20-calorie-per-ounce mixture of powdered formula and water (standard mixture as per the instructions on the formula container). This has now been bumped up to a 24-calorie-per-ounce mixture. In a week, if the 24-calorie-per-ounce mixture is tolerated well, we’ll bump it up to a 27-calorie-per-ounce mixture. Also, he’s now on a strict six 5-ounce-feedings-per-day schedule which, if successful, will result in Aaron eating 30 ounces of formula per day. He had only been eating about 16 ounces per day with his on-demand feedings. So, he’ll be consuming more than twice the calories that he had been consuming. Assuming that his damaged lungs won’t be burning TOO many extra calories, this should result in a weight gain of 2 pounds per month, or 1/2 pound per week. We’ll be weighing Aaron at home weekly, and charting his progress. So far, the 30 ounces of formula per day has been a challenge for us. Aaron is so stuffed that he fairly frequently throws up at least half of what he’s eaten. If we can’t get Aaron to eat his 30 ounces of formula with this schedule, the next step is to add a nighttime feeding or two. While we were in the PICU (pediatric intensive care unit) on Friday morning, we re-connected with 25-weeker James’ mother Kerrie. Apparently James went home for three months, then had to be hospitalized again because he wasn’t eating enough and wasn’t growing fast enough, among other things. He had a G-tube (gastrointestinal tube) installed through his abdominal wall and into his stomach; he receives most of his nutrition now through this tube. Soon after the G-tube was installed, James developed a staph infection, which made him quite sick. As of Friday, he had been in the PICU for a month, but was expected to go home in a few of days. He’s still on oxygen, and weighs 10 pounds. Next to Aaron in the PICU was a little girl who had some kind of serious lung problem. Her little cry was heart-wrenching, and she had a terrible-sounding cough. She and James reminded Kathleen and me of how fortunate we’ve been thus far with Aaron, and how very careful we still need to be to make sure Aaron gains some weight and doesn’t get sick. Thanks for understanding, everyone, why we’re not back at church yet. We’ll get there eventually, Lord willing. Please pray with us that Aaron is able to tolerate his new feeding regimen, and that his lungs continue to heal and grow. Aaron was very well-behaved on this little adventure, and didn’t seem to mind all the commotion. He’s a great traveler, and seems to enjoy new things. Love, Kevin, Kathleen & Aaron |
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