taking care of jules

Tomorrow, I am taking Jules back to Keren at Children's and she is going to do her first bottle feeding experiment with him. I am SO excited! Even though he won't be ready to do bottle feedings with us until he passes his swallow study in mid april, it is a big moment for him to try with PT professional extrodaneire - Keren and see what he can do.

A lot of people have asked me what the schedule is like in terms of taking care of Jules. Here is a rough outline.

10pm-6am nurse on shift

6am: scott takes over from nurse, preps meds (takes a long time to individually draw out nine medications into syringes and prepare everything) and makes Julian's special food. He also switches out the ice packs in the feeding pump backpack and makes sure there is enough food.

I wake up with Gigi and get her ready for school and take her to school at eight fifteen.

8am: scott begins the 45 minute medical infusion of meds and heidi arrives to take care of Jules. when the pump finishes, heidi flushes out the line. Both heidi and scott try to fit in binky trainings if at all possible.

During the day, Heidi keeps Julian comfortable with all normal baby stuff, like changing diapers, etc... but also, she checks to see if he is saturating with enough oxygen on the monitor, refills the oxygen tanks if necessary, and keeps those binky trainings coming.

Heidi and I take Jules to the doctor for at least one appointment a week, the lab for an appointment a week, we will  stay home for PT/OT stuff up to a few times a week, and I try to remember to order medical supplies, stay on top of all his appointments, and tomorrow I need to refill all his prescriptions.

Heidi does his Meds at 2pm.

I leave to pick gigi up a bit after three and come home at 4pm with Gigi and take over from Heidi. I watch Julian and Gigi until Scott gets home for dinner. I try to binky train, diaper change, and play with him with Gigi as my helper.

After dinner, we give Julian and Gigi baths and I take care of Jules while Scott puts Gigi to bed.  We administer Julian's meds again at 8pm and make more formula if necessary. We try to put more food in the pump for the nurses, make more food if we need to, and switch out the ice packs again. The six to nine o'clock stretch is the most difficult for us.

And at ten our nurse returns and we fall into bed.

And on that note, I am off to bed! Goodnight, Joy