- Oliver still isn't eating well by mouth. He'll suckle vigorously on a bottle for a brief time, but then his breathing becomes noisy quickly.
- It's therefore no surprise that when he had a swallow study, the speech therapist assessed him to be aspirating milk into the lungs. When the milk was thickened, he did not seem to do this. Now, his milk is being thickened with rice cereal. Mouth feeding attempts are being limited to a small volume and he's still receiving NG feeds for the rest. Rachel practiced putting the NG tube in yesterday (it will probably be changed at home once per week and as needed). Oliver will be following up with a speech therapist at Riley Hospital for Children.
- While there isn't consensus regarding his feeding difficulties amongst his providers, most seem to think that his laryngomalacia is the main factor causing this (rather than a neurologic issue).
- It's very clear that Oliver's hearing is not normal. He doesn't startle to loud sounds as a baby should, and doesn't seem to respond to voices in any way. He didn't pass his hearing test in either ear. He'll undergo further evaluation of this in the coming weeks.
- Oliver has had a number of tests to evaluate for other conditions, and thankfully, they have all come back normal. He's acting like a normal newborn now, other than the issues above.
- Oliver's GRCS has always been quite high and continues to rise. (See below for more explanation.)
- We're still anticipating his discharge to home early in the week.
- How soon he'll be able to eat by mouth alone.
- The severity and permanence of his hearing loss.
- Probably a lot of other things.
What's the goal of parenthood? Is it to help our kids be productive members of society when they are older and realize their "potential?" Certainly, that's a reasonable goal, but not likely the one that is most important. At a more basic level, the goal is to make sure that they know they are valued by those around them and help them find value/meaning in the world around them, even if it means that they'd rather go to bed with numbers than a stuffed animal!
Disclosure: Not a nightly routine. |
*By me.
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