I hope that one of the most helpful things about this blog is that you get to watch me go through things that you might have to go through.
So today, I'm literally going to think out loud in a post (that I'm typing with one hand on my phone).
I'm having a very stressful day and I need a release.
It starts with the dog. She cannot stand to be confined and we can't stand to see her going insane. Yesterday when I got home, she broke out of her crate and was upstairs sleeping on our bed. Long story short, the bandage was irritating her foot (from occasionally putting weight on it) and the vet reiterated that we MUST crate her.
I can't handle it so I told dh that he is on dog duty -I don't want to make any decisions.
Because she needs to stay in the crate, my mom is not going to spend the day unpacking stuff from the house tenting which really needs to be done.
But that's just the peripheral stuff. We decided yesterday that we will take out Dylan's tube again today and that I will stay and do all of his feeds for 24 hours.
I need to devote all of my energy to solving his problems right now. Not the other stuff.
Lisa at Hapa Hopes posting a great article about preemie feeding on my last post. I read it before getting out of bed this morning and it set my mind racing.
First, I see all of the signs of feeding aversion in Dylan; arching, pushing nipple out, making faces. He doesn't so all of them all of the time but he definitely has issues due to months and months of having various tubes down his throat coupled with reflux.
I worry that I have pushed him too hard and have caused some of the aversion. That makes me sad and pisses me off at the same time because I am not a doctor or nurse. They leave me on my own a lot because I am competent and show confidence, but they need to ensure everything is going well. It is their responsibility to make sure I'm doing it right.
That being said, I do really follow his cues and give him lots of breaks, I just push him a little bit past where he probably wants to stop.
Because of all of these thoughts, I did some more research this meowing regarding reflux and feeding aversions. Lots and lots of babies have this issue Nd they are not in the NICU. So the bottom line is that we need to go home. I think I could push to go home without the g-tube, but I honestly think it might be the best thing. It will take all of the immediate pressure off of each feeding and will ensure that he doesn't lose weight.
If we do the g-tube, and I think we will, it should be next Wednesday. Then, he'll need about a week of recovery before coming home.
But last night he took 52, 66, 60, and 52 from 9:30 pm to 6:30 am. That is his best stretch ever!
Then for me at 9:30 am he only took 19...possibly because he had to take his nasty vitamin orally.
So that is all stressful, but I also have a nurse that I don't really like. I have talked with every level of nursing here and they have all promised to give us consistency, but it doesn't happen. Yesterday and today we've had nurses that have only had him once before. I think the issue is that the system of assigning nurses is not computerized, but still..,I've given them lists of nurses I prefer. The little babies should definitely have priority, but when a nurse that I've just had the week before for 4 days in a row gets assigned to a stable baby in neighborhood c and I get a brand new nurses, I get really annoyed.
So I'm sitting here on a really big day without feeling much support. I don't feel like I can ask this nurse many questions because she doesn't know Dylan. And frankly, I don't like her.
I did ask the OT to come in and voiced my frustrations and asked her advice on how to do things today, but why do I always have to ask? It's exhausting! What would happen if I weren't here every day?
I feel much better now than before I talked with the OT...now I just have to wait for Dylan to wake up and hopefully take 60 again.
The whole goal of taking the tube out is for him to get hungrier. I'm also really hoping it'll put him on more of his own natural schedule.
I think he's stirring...