-Emily wakes up
-mix formula for the day
-change out Emily's feeding bag, tube, etc
-do a load or two of laundry
-clean up whatever Em doesn't keep down
-give Em a bath
-change out gauze on Emily's feeding tube
-get Em dressed for the day
-if I'm lucky Em might take a nap
-sometimes I get a shower
-pack up Em's diaper bag
-give Emily her meds through her tube
-work with Em on physical therapy
-run any errands I might need to, both for work and for me
-head to work
-try to work while Em plays
-take Em for a walk while she winds down
-Em finally takes a decent nap
-I have about an hour or two to get as much work done as I can
-pack up and head for home
-run any errands that I need to
-get Em ready for bed
-change feeding tube gauze
-play with Emily
-give meds through tube
-Em is finally ready for bed
-snuggle in the rocking chair until Em falls asleep
-a load of laundry if I'm lucky
-mix more formula
-find something to eat for dinner
-pull out computer and work for two or three hours
-start Em's overnight feed
And then, hopefully, I can crawl into bed.
* * * * *
Emily's occupational therapist, who helps with feeding issues, came today.
I've been telling her for a couple of weeks that Emily is getting worse, not better, when it comes to being interested in food.
The OT tried to feed Emily and after 15 minutes of fighting with Emily she looked at me and said, "She won't eat anything will she?"
And then she said to me, "What did you eat for dinner last night?"
I told her I ate a bowl of cereal.
"What do you have in your fridge that we can give Em?"
I haven't been grocery shopping in weeks.
"Does Emily sit at the table with you and Jason when you sit down for dinner at night?"
We don't sit down for dinner at night.
We rarely even eat at the same time.
"Are you increasing her feeds as fast as we've talked about?"
I'm going more slowly than the therapist would like...if I push Em too fast her tummy doesn't do too well.
"Until you can feed her a feed in 15 minutes she won't ever eat well."
"You need to find food that Emily gets excited about. Make pasta and let her taste the sauce."
"You need to get to the point where you don't feed Emily at night. She won't ever eat until you do that."
About 20 minutes after the OT left I got a phone call from another therapist.
"Noelle? Emily's OT tells me that Emily needs help in other aspects of her development. I'll be coming next week to do an evaluation and tell you where I think Emily is lacking, and what help she needs."
I hung up the phone and cried all the way to work.
* * * * *
A friend of mine has been pushing me for weeks to get together.
I finally found a time where I could fit it in and I texted her and told her I would leave work early and come and visit her.
She offered to feed me dinner and then sent me another text:
"Can you please bring that dessert my kids love?"
That dessert takes me three hours to make.
I haven't made it since Emily was born.
I waited a little while and texted my friend back and told her that I wouldn't be able to make it to dinner after all.
* * * * *
There's a line in the movie Return To Me that I love.
A girl who had a recent heart transplant found out that her new heart came from her boyfriend's deceased wife.
In tears she yells out to her friend, "What was God thinking???"
I sat on the floor of my sister's office today and cried and cried to my mom and asked her the same question.
"What was God thinking? I can't do this. I'm failing Emily."
Although it wasn't at all intentional, Em's OT made me feel like it was my fault entirely that Emily isn't eating.
On any given day I feel like I'm failing at most things in my life: my job, and my role as a wife and a friend.
I try really really really hard not to blame myself for Emily's not being able to eat.
I try to tell myself that Em will develop as she develops, and that no matter what, it will be okay.
But today ... today ... if you were to tell me Emily's heart defect and chromosomal deletion are my fault, I would believe it.
I'm grateful that every day isn't today.
* * * * *
Em and her bunny and I watched American Idol for a little while tonight.
Em loves American Idol almost as much as she loves Mickey Mouse Clubhouse.