Every time I sit down and try to write an update something changes with our sweet Claiborne. I wanted to do a day in the life post to show what it is like to have a baby with a feeding tube. Throughout the post I will share what has changed in regards to our routine.
When we left off after Thanksgiving Claiborne was getting a continuous 12 hour feed over night and bottles every 3 hours during the day.
7:30am Wake Up! She is always so smiley in the mornings even though she's soaked through her pjs and swaddle. I turn off her pump, unhook her, give her her medicine, and flush her tube. I then change her diaper and get her dressed for the day.
8:00am to 9:00am we snuggle in bed and play with toys while Daddy gets ready for work.
9:00am - 10:30am Nap
10:30am - 11:30am Claiborne eats. When I first started this post Claiborne had a failed her modified barium swallow on December 30th and was immediately taken off all oral feedings or NPO. We would feed her by taking a 60ml syringe and filling it halfway and letting gravity take its course.
After 5 days of this we went back to the GI for the 1st time since the failed test, because C was still spitting up/refluxing they decided we should use the pump to feed her and spread it out over an hour.
We dip her soothie in milk or sugar water during the feeds so that she doesn't lose her sucking ability.
1:30pm - 2:30pm Feed
2:30pm - 4:30pm nap. We still swaddle her when she sleeps to keep her from pulling out her tube, we use the rock in play because I have to wash sheets every morning.
4:30pm - 5:30pm Feed
5:30pm - 7:00pm playtime and bathtime
7:00pm - 8:00pm feed and bedtime, we put C down at 7:30pm and then stop her pump at 8. She gets hooked up again at 11pm for 8 hours.
New Years Eve we drove down to the river...this is how you jerry rig your pump in the car!
While at the GI the neurologist could see us within the hour, making it impossible for me to go home and feed Claiborne. They happened to have a syringe, can of formula, spoon, and cup of water....so I mixed up some formula and fed her in the waiting room. I had been very nervous about doing this in public but I did and it wasn't so bad.
This is how she sits to eat now, I hate not being able to hold her in my arms and give her a bottle or nurse her.
At food therapy the other day they let her try some pears! She only gets about 4 or 5 licks once a day so nothing big but I really didn't think that I was going to be able to feed my baby so this is amazing!
She loves her weekend snuggles with big brother!
He's also kind of smitten with her!
We have lots of appointments and lots of doctors in our near future and some big decisions to make but we are so blessed to have these 2 amazing kids.