4.16.06: eggstraordinary fun

(I had intended to post an update as soon as we got Avery home and settled, but besides the new routine being a little of an adjustment, I found myself really sick again (!) for several days this week. Now both mommies are on antibiotics and maybe we can finally beat this crud! )

A full week has passed since Avery was discharged from the PICU at Sutter Memorial. Everything happened as planned on Saturday. There were a few complexities with the two new prescriptions and the new feeding pump that needed immediate delivery, but outside of some minor hiccups, it all went smoothly.

Over the course of the week we've noticed daily improvements in Avery. He clearly showed signs of being seriously weak and overtired when he came home, although now he looks rested and significantly stronger. Avery's mobility had very noticeably regressed, but with each day this week witnessed him loosen up. I wouldn't say he's back to where he was before getting sick, but pretty close.

Avery still has no voice and therefore we still need to feed him exclusively through a nasal gastric (NG) feeding tube. If there is any paralysis of his vocal cords his airways could be unprotected and his risk of aspirating high. Because of this, we are better off not taking chances and holding off on oral feedings until the vocal cords have healed. Meanwhile, Avery gets 5 feedings a day every 3 hours and then a continuous feeding over a period of 8 hours during the night, for a total of 840 mls (28 oz.). The best part about this is that he should return to his previous weight (15 lbs.) in a short time and it might even give him the boost he needs to get closer to where he needs to be. He was as low as 13 lbs 8 oz in the hospital, but he's already regained a full pound as of yesterday. The weight setback is definitely more pronounced when you have a twin to compare to ... Mason is now 7 whole pounds heavier, weighing in at 21 lbs. 9oz.

Within a few more days, Avery will have been completely weaned off of both the methadone (for morphine addiction) and prelone (steroid) that he came home on. We will follow up with the pulmonoligist, pediatrician, GI specialist, speech therapist and physical therapist this week ... so it will be a busy one, but geared toward making even further progress.

Although the pediatric ophthalmologist cleared Avery in January, stating his vision and alignment were fine, we're now strongly considering having him rechecked. Previously, Avery's eyes both drifted inward at times and we were told it would likely work itself out over time before he reaches one year, adjusted age. Now he is 11 months (adjusted) and they are very noticeably more consistently out of alignment -- most often the left eye. Maybe the month spent in the hospital with the need for additional oxygen had some influence, or maybe this would be happening anyway. It's hard to say. Either way, I have a feeling we will be looking at some vision therapy ... but hopefully not surgery.

A second bottom tooth has now broken through Avery's gums and he's gnawing away on everything he can get his hands on. This is exacerbated by the fact that he is needing and wanting more oral stimulation since he isn't receiving oral feedings. The little green pacifier from the NICU has become his best friend again and you can find about a dozen of them scattered throughout our house.

As for Mason, he's changing in so many ways right before our eyes. I have plenty to write about what's new with him but I'll save it for a future post.

For now I will just say that it's great to have the two boys back together again. Mason enjoys having his brother home to entertain with his antics, and we really enjoy the moments we catch them smiling at each other. Avery clearly just enjoys being back home, surrounded by all things familiar to him ... Mason, his mommies, his pets and all his favorite activity spots and resting places. It's eggsactly what the doctor ordered for the whole family.