Making A Schedule

Sleep is a rare thing in our house right now for Mira and me. With her cathing and feeding schedule overlapping only twice in a 24-hour period, there's not much time for sleeping, or much of anything else, either. Here is our schedule:
6am: Cathing and feeding
9am: Feeding
10am: Cath
12pm: Feeding
2pm: Cath
2:30pm: Give antibiotic, clean her incisions, give her a bath
3pm: Feeding
6pm: Cathing and feeding
9pm: Feeding
10pm: Cath
12am: Feeding
2am: Cath
3am: Feeding
Repeat.
Each part of her schedule takes 10-30 minutes to set up for, and 15-45 minutes to complete.
We also have to check her shunt track regularly to make sure spinal fluid isn't traveling around the tube instead of in the tube.
We have to do physical therapy stretches on her club foot a few times a day to try and stretch her foot in the right direction, and make sure there's no skin damage in the creases where her foot is turned in.
We have to change her diaper on a near constant basis because she can't control her bowels at all, and this has caused some pretty bad diaper rash, so we have to keep her as clean as possible even though she is almost always pooping.
We have to swab her belly button with alcohol much more than normal, because with her being belly confined, her umbilical cord stub doesn't get the chance to dry out like most baby's because it can't get the proper air to it.
We also have to change her butt flap regularly. A butt flap is a little square of plastic, cut from a sandwich bag, that keeps poop away from her back incision. On the top of her little butt crack, we have to keep a strip of stuff called duaderm. Duaderm is a piece of 'adhesive' that melts onto the skin. It can stay on her back for days at a time before you have to remove it with adhesive remover. You use duaderm so you can tape the butt flap onto the duaderm instead of constantly taping and untaping directly on her skin. The butt flap is necessary for keeping poop away from her incision to limit the risk of infection. So last night, I precut a bunch of little butt flaps out of sandwich bags to make it easier and quicker to change.
We also have to clean her catheters. We use syringes to spray soapy water through the caths, and another syringe to spray rinse water through them. We have to use either Joy dish soap or liquid dreft laundry detergent because these are the only soaps that don't build up and leave residue. Residue equals infections when cathing, so using the right kind of soap is important. Then the caths need laid on a surface to dry where they won't gather lint. Lint also equals infection. So thin paper towels are the best. Fluffy dish towels are a bad idea. The caths have to dry completely before being put into an air-tight container because if any water is left in the caths, bacteria will build up in the water. And festering bacteria also equals, you guessed it, infection.
We have to wash our hands vigorously, and use only antibacterial soap that doesn't have added moisturizers and fragrances. Those additives leave build-up on your hands that can transfer onto Mira and her catheters. Again, infection risk.
We've also noticed that she has REALLY sensitive skin. Even though we have to swab her belly button a lot with alcohol right now, as soon as the alcohol touches her, the skin gets bright red. And when we change her duaderm, the adhesive remover contains alcohol, and her skin gets really irritated. We have to wipe it off immediately to try and keep her little skin from getting too irritated. Because of her sensitive skin, we also can't use regular baby wipes because a lot of them contain alcohol and other additives that bother her skin. So instead we use paper towels and water. That's it. Fold the paper towels, put them in a conatainer, and soak them in water.
Since we are still monitoring her food intake, I also have to pump every 2-3 hours in between her schedule and make sure I'm storing the breast milk properly.
With a schedule like this, getting everything down pat and as efficient as possible is crucial, considering Joe works long night hours, and we also have two other children to take care of that are also at demanding stages. Aryanna is about to start walking, and Dustin is about to start school. Speaking of school, I'm currently scheduled for a six month leave from college, which began a couple of months before she was born, so I'm marked to start college back up in June. I really hope to be able to start classes back up by then to keep the overall well-being of our family headed in the right direction.
I kept hearing people say that spina bifida is a group effort, and now I see why. She needs so much, and she is counting on others to provide that for her. She needs a lot of preparation, a lot of attention, a lot of monitoring, and a lot of care. She counts on a schedule just to make sure her organs aren't damaged by her own urine, or to make sure that her skin doesn't get rubbed raw by her own feces. But that same schedule that is crucial to help her body be as healthy as possible is also so off-putting because I have to be disturbing her almost every hour, so she doesn't get to just rest like babies should. It's not fair, but it is necessary. At least for the time being. So while this is a crazy schedule, it's hard, we're exhausted, we're busier in our own home than any job I've ever had, but this is what she needs from me. This is what she depends on. Every sleepless hour, every bump in the road, every busy, frustrating moment is worth it, and I wouldn't have it any other way!