10/24 - Home life

Life at home is spent trying to make a normal routine, and finding a spot for all of our new medical accessories in the small house with even smaller closets.  Part of the routine includes cuddling our sweet baby! She loves to be held. We're told she is hard of hearing, has problems with her vision, and because of her trach, her taste and smell are lessened (like plugging your nose when you eat).... so her one super sense is her sense of touch.  We are more than happy to cuddle her at every opportunity, and our night nurse is happy to hold her when she wakes up in the middle of the night with no intention of returning to sleep👀
Here are some updates:
Health: Annelise is doing well!  Her puking stopped when we switched from the formula to fortified breast milk!  Hallelujah!!
She may be developing allergies.  There's more boogers and snot to help her get rid of this past week.  I was concerned that she might be getting sick, but it hasn't gotten any worse... Kevin has allergies, and although I escaped much of it, there are lots of allergies in my family... So it makes sense for Annelise to have them too.  I'm hoping it's not the cat🙀
She has a follow up appointment every day with a different specialist during the first week of November.  Praying for great communication with her specialists on those appointment days.
Home:
We have a home nurse for overnights, Monday- Friday that we like.  We'd like a morning weekday nurse too, to help me get to appointments, since I can't drive alone with Annelise, but so far, nobody has been found. Truth is, I don't really want to have another person in our home for 8 hours during the day.  It has really been so hard for me to share this small space and the care of my most precious baby girl with a stranger.  I have to remember that my most favorite NICU nurses were once strangers too.... I need to give them time to show us that they are capable and caring.  The possibility of them not being capable is also possible though... and that unknown is causing anxiety for me.
Our day:
Consists of medication, food, naps, cleaning, organizing, phone calls to set up our new life, googling info, diapers and more diapers!
She sure is cute and sweet though, we love her so much, being here with her and overwhelmed with the tasks is real, but easily balanced by the boatload of joy that she brings to our lives❤️