Eating, Growing...Soaring

Caili is soaring. Lauren and I are both reticent to speak or write about it because it feels too good to be true, and we live in fear of another (always possible) setback. However, one of the many things that this experience has made clear is how important it is to enjoy the moment, and this moment is good. Really, really good.

First an update on the impedance test—the main test for which we came to DuPont. As Lauren mentioned, the test is designed to measure both acid and non-acid reflux, and was hoped to provide a definitive answer on the question of aspiration, which the previous testing suggested wasn’t an issue. Caili underwent the 24 hour test--which consisted of a second tube (in addition to her feeding tube) routed to her stomach with some sort of wire and electrodes that measure the pressures in her esophagus which are in turn recorded by a little monitor in her crib. Unfortunately, the monitor had some sort of issue that prevented the results from being read. It's been sent to Phoenix for a recovery attempt, but we're guessing results will never be known.
On the day before the impedance test, we were allowed to feed Caili a small amount of milk by bottle, which she loved. When the test was over on Tuesday, they let me try giving her a bottle with her entire feed, which she joyously ate in full. Lauren got to do another feed by bottle that night, and again Caili loved it. Watching her eat is actually amazing; the act of eating is extremely hard work for her given her sick lungs, and she has to periodically stop and catch her breath. She pants like a puppy-dog during this "catch-up" breathing which is cute, frightening, and just a little sad--eating shouldn't be so much work!

Early Wednesday morning, Caili took charge as she has done countless times before; she decided that she'd had enough of her feeding tube, and pulled it out herself. Given how well she had handled the feedings to that point, the doctor decided she could eat all of her feeds orally and changed her feeding orders to "ad-lib," meaning she could be given a bottle whenever she seemed to want one. And the decision was made to go without the feeding tube until it was needed--if it was needed.

Even though it's been tough work, since Wednesday AM, little Caili has eaten every ounce of her food herself, which is a joy for all of us. She's even been able to gain weight while doing so; as of this morning she's just over 7 pounds, 5 ounces. The feeding tube has not been replaced, and she's doing so well that at this point they don't intend to repeat the impedance test even if the results cannot be recovered.

Of course the remaining issue is the level of breathing support she continues to require, which is beyond a level at which she could leave the hospital. They're slowly weaning, and the hope is that at some point in the not too distant future she'll get to the point where coming home will become an option. She was nearly at that level of support in early January before the last setback, so we're optimistic that she can get there again--maybe even before spring!