Midnight...Dad puts milk in my pump and starts it. I'm asleep.
12:50 a.m....Pump goes off. Feed complete. Dad turns my pump off.
2:00 a.m....I wake dad up with grunting and explosions in my pants. I'm actually still asleep. Dad changes my pants and thinks I'm still asleep. Then he looks up and I chuckle at him. I'm wide awake. I can tell he appreciates my jollyness.
3:00 a.m....Dad puts my next feed in the pump and starts it.
3:50 a.m....Pump goes off. Feed complete. Dad turns my pump off and heads to bed.
5:25 a.m....Mom wakes up and gives me Diuril at 5:30
5:30 a.m....My mom pumps, then gets my 6 a.m. feed ready in the pump.
6:00 a.m....She gives me my breakfast along with my Captopril and Lasix.
7:30 a.m....I wake up grinning which melts my mom's heart so she has to play with me.
9:00 a.m....My mom pumps, then gives me my 9:00 a.m. feed, my vitamins, my Miralax, my potassium chloride, my baby Aspirin, my Synthroid, my Pepcid.
9:30 a.m....I hurl a considerable amount of my 9:00 a.m. feed.
9:45 a.m....I take a nap because hurling makes me tired.
9:50 a.m....my feeds go off because I'm done eating.
10:30 a.m....I wake up and am ready to be entertained.
11:30 a.m....I receive my calcification meds called etidronate. Once I receive this (which has to be on an empty stomach), then I have to remain upright for 30 minutes because it is pretty harsh on my esophagus, so mom and dad hold me.
Noon....I get my lunch.
12:50 p.m....My pump goes off and my feeds are done.
1:00 p.m....I get my ativan and my second round of diuril.
2:00 p.m....I get my 2nd round of Captopril and my second round of lasix.
3:00 p.m....Its time for me to eat again.
3:50 p.m....My pump goes off and my feeds are done.
5:00 p.m....I get my Coumadin to thin my blood.
6:00 p.m....Its time for me to eat again.
6:50 p.m....You guessed it, my pump goes off and my feeds are done.
7:00 p.m....I'm in my rarest form...laughing and playing.
8:00 p.m....I'm exhausted but my evil parents won't let me fall asleep.
9:00 p.m....I get another round of feeds, my 2nd dose of potassium chloride, my 3rd dose of diuril, my 2nd dose of pepcid. Then my mom and dad put me in bed.
9:50 p.m....My pump goes off and my feeds are done.
10:00 p.m....I get my 3rd dose of lasix and 3rd dose of captopril.
If I'm an obedient, God-fearing child, I sleep from this point until we start the process all over again with dad at midnight.
Throw in diapers and normal day to day living tasks and to put it plainly, we are not bored.
But we're home.
And its worth it.