A Day in the Life of Jacob

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.)

Blog Troubles :(

I've been experiencing blog issues.  It's extremely frustrating, yet things like this also happen for a reason.  All the problems we've had with the blog is the reason why it's been so long since the last update.  Hopefully things can be sorted out soon, because I have a fun update in mind.

Jacob is doing ok nowadays.  His lungs are clear sometimes and congested or wheezy at other times.  It's so hard to figure out.  Every day continues to be different.  His sleeping is improved with the increased dosage of the sleeping med.  At least he is responding to it as is expected:)  On a typical day, he gets 2 doses, but he's allowed up to 4.  As we continue to move through cold/flu season it brings many added concerns and stresses.  How much do we keep him isolated, and keep the family in two?  We can't always keep him home when there is an event, yet it brings so much extra stress to bring him to birthday get-togethers and the like. 

Every day we are given him, we count as a blessing!  Words can not express how thankful we are that we are still able to experience the highs and lows with our little man!