Here is a day in the life of Jacob, thanks to a camera. Thankfully it was a great day, regarding his irritability! It makes such a difference!! Not everything is captured by pictures, but most things are.
8:06 - peacefully asleep
9:51 - still asleep
10:54 - wow - still asleep!
11:00 - time for meds
11:03 - Jacob's tube extension needed to be replaced. It must have been leaking in the night, because the nurse left the old one on the counter.
11:03 - ready to put the extension on
11:04 - extension on and water flushed through
11:04 - we're ready for meds and feeds
11:06 - meds given
11:06 - finally awake!
11:24 - bath time
11:33 - time to dry off
11:35 - weight time (still no gain!)
11:42 - relaxation - he loves the bean bag chair!
11:48 - feed made and ready to go
11:49 feed being administered
11:50 -feeding pump running at 44ml/hr (18 hours of the day)
1:18 - repositioned in the vibrator chair - another favorite
1:54 - Jacob's learned to grind his teeth :( if we put the soother in, it usually helps him to stop
2:04 - Caleb to the rescue
2:41 - time for therapy in the 'little room'
2:53 - working with lights, not much success lately
3:04 - not happy
3:06 - time for more meds
3:09 - asleep (due to the sedation drug) - within 3 minutes
3:16 - after every batch of meds or at the end of a feed, we flush his tube with water
3:20 - feeding bag cleaned
3:39 - time to clean syringes
3:44 - his med chart - the only way I can keep things straight
3:47 - time for more meds
3:51 - Caleb loves to help! The amazing thing is, we didn't have to tell him how fast to administer the meds. It shows us how much he watches!
3:56 still asleep
5:12 - one med and a water flush
6:00 - feeding time (he'll be fed from now till 7:00am) only with small breaks every 4 hours to clean the bag and refill
7:07 - awake from his nap
7:47 - not happy again
9:00 - more meds - so so many every day :(
9:05 - working with music therapy with his feet - every time he hits the music toy, it plays a song
9:07 - making his night feeds
9:10 - folding his laundry
9:15 - he's responding well with the toy
9:27 - diaper changing time and play time!
9:33 - peaceful again
9:35 - mommy and son time - precious beyond words!!
9:39 - chest physio time - another thing that Jacob loves, which we have much to be thankful for!!
10:47 - Daddy flushing his tube and spending time relaxing with his little man
10:56 - feed bag being cleaned with hot soapy water
10:57 - feed bag being rinsed with hot water
10:59 - another feed ready to go
11:00 - Jacob falls asleep as the nurse walks in the door.
11:32 - a report is given to the nurse and I leave a boy peacefully asleep for the night (or at least for the time being.)