I've been wanting to do a day in the life of Caleigh for some time now. I finally got inspiration from Ellie's parents when they blogged about Feeding Gut Girl.
Back when Caleigh was getting over 24 doses of medicines a day I didn't even have time to think about journaling our day. We barely made it day by day and just keeping Caleigh's schedule back then was good enough. Now that things are going so well and have calmed down a bit I have time to breathe and think about what we really do on a daily basis.
It all starts at 6:30 or 7:00am, Caleigh wakes up. We get up, turn off the Apnea Monitor, change her diaper (that inevitably leaked everywhere), proceed to change all the bed sheets and strip her down to her new fresh diaper. We give Caleigh's seizure med, Keppra, & Ursodiol, liver med, through her g-button about 7:30.
Caleigh plays on the floor while we work on waking up, coffee or green tea is a must at this point.
8:30am, it's time to unhook Caleigh's TPN. We glove up and flush her central line with saline and then push about 2cc of heparin to keep her line open and clot free. We weigh Caleigh every morning at this time to. (This morning she weighed 19lbs. 9oz.) Then we get her dressed so that she doesn't mess with her lines.
At 9am we turn off her Feeding Pump and wait an hour for her blood sugar to drop enough to try feeding her baby food. This is new for us this week. After we feed her what she will take, we will replace the 'missed' formula by giving a bolus, or slow push of what was missed. We also hook back up the feeding pump for the remainder of the day.
Somewhere around 10 or 11 we mix up 24 hrs worth of formula. This is about 23 ounces right now.
From 11am to 2pm we are free to do whatever. This time is filled in with our appointments. Caleigh's nap times are still whenever she wants them. Most of the time around 11am and then around 1pm, but it completely depends on the day.
At 2pm we give Caleigh Ursodiol (helps her liver) and 3 drops of Oregano Oil through her g-button.
From 2pm to 6:30pm we are free for more appointments and naps as needed. I think we might try turning off the feeding pump and doing baby food during this time as well.
At 6:30pm Caleigh is ready for her bath. We unhook her feeding tube, fill up the tub and put a naked, playful Caleigh in the water. I've been asked a lot lately about the water. We don't fill the tub up too full because we can't get her central line wet at all. About to her ears. No dunking the baby! I love the new bath mat I bought. It soaks up the water so it is warm on her back, but it doesn't let her slide around.
After the bath, we wrap Caleigh's apnea belt around her chest. Get her all lotioned up and put her pj's on. At the same time we prime a new feeding tube with fresh formula and then hook up the feeding pump again. Then we are off to bed for bedtime stories and some cuddling. (The past few days Caleigh is out before I can even read a sentence to her) We give her 2nd dose of Keppra for the day. As soon as she is asleep, the clean up begins. I start with the bathroom and then move on to her room where I weigh all of the day's diapers and record each one. This is called I's & O's (Intake/Output). I fax them to our GI every Tuesday.
About 7:45pm we get Caleigh's TPN out of her fridge to warm up to room temp. At 8:15pm we start mixing Caleigh's TPN. Eric and I take turns doing this. There is about 6 things that we have to add to the pre-made bags. We prime all the tubing and then clean Caleigh's hub/cap with betadine and alcohol. We hook her back up at 8:30 for her 12 hour infusion.
Eric and I prep for the next day. At 10 we add enough formula for the rest of the night and put an ice pack with the formula bag. Caleigh gets ursodiol and Omega 3 DHA at 10. We also give Culterelle in her formula at this time. We finally make it to bed somewhere between 11 & 12. Caleigh might wake up for a diaper change around 2ish but lately she has been sleeping through the night.
At 7am we start all over again. Rinse & Repeat.