Things have been going well. Today we got X up to 200ml/hr over an hour for all three bolus feeds. Tomorrow we will slowly work on increasing the rate so he eventually gets the 200 ml over half an hour. There is so much math involved in this process, and I completely suck at math, so it's been fun.
However, he is on the feedings at night for just over a little 9 hours now. I remember when he used to be on that thing for 20+ hours a day! Life is good and peaceful at the moment.
The ultimate goal, of course, is for him to be tube free and eating on his own. The goal below that is for him to be getting 800 calories during the day divided over four half hour feedings and 700 calories at night over 7 hours. Then, after a while we will begin decreasing the day feedings by 10% and see if X picks that up orally.
That's where we are at.
He is refluxing a little during the day, but he says it doesn't hurt, so I'm not going to get concerned yet. All of this is such a huge step for X. When we tried this last year, that's when everything went to hell and he basically threw up for 4+ months every time he got a feeding. We had puke buckets in every room of the house along with wet wipes, sippy cups of water, towels and diapers to vent his tube into. We even had a bag we had to bring with us that was packed with puking items. It was like our American Express card. We didn't leave home without it.
Now, all of that stuff is put away. Well, almost. I do have a bucket hidden under X's bed and one in our room. It's an amazing feeling having more freedom with out the puking and a little nerve racking as well. Part of me is just waiting for all of this to go bad, but most of me is really enjoying it.
The other night X woke up upset and when I checked on him his shirt was soaked as well as his bed. I was sure he puked, but he said he didn't, then I was sure his balloon that holds his feeding tube in place Burst and stuff was leaking around that. Turns out it was just a cap that popped off a port. I was completely freaked for a few minutes though. Thankfully, it was nothing.
Our doctor's office called Monday to check on X's energy level because he had lost a pound the week before (but grew half an inch in 2 1/2 weeks). Good grief. X is nothing but energy. That boy is non stop motion and talking and exuberance and noise from the minute he gets up to the minute he passes out at night. I sometimes wonder if he is hyper active. But I do not worry about his energy level. Not at the moment anyway.
So, that's it for now. Things are going well. X is moving along with the feedings and we are increasing things at an incredibly slow rate. We could probably go faster, but if I've learned anything with X, it's that he needs small, slow changes.
Another big event over here is X is sleeping in his own room. Can I get a hallelujah!!! This is h-u-g-e. Momentous! Since Aug 29, 2011 I have been sleeping in X's room or he has been in our bed. It has been over a week since he started sleeping in his own bed. He will wake up to pee and will sometimes be afraid and want me to hum (usually for 15 minutes at 3:30 in the morning), but then he stays in his room. I am actually getting sleep. Beautiful, amazing sleep. And my body is craving more and more of it. I still can't wait until the day my sleep is uninterrupted, but this is the best sleep I've had since before I was pregnant with X. During the pregnancy I had insomnia and restless leg syndrome so I did not sleep. Then, about 2 months after he was born he was so miserable with the eczema, hives, reflux, and allergies, he didn't sleep for more than an hour at a time (and that's being generous) until about a year. After that he didn't sleep for more than a few hours at a time until he was about 2 1/2. I remember almost starting several fires in our kitchen while cooking because I was so out of it and I had too many near misses while driving.
But now, I have energy and can think straight, and function. It is good.
Lots of good stuff happening here and I am taking advantage of the peace ( well, as much peace as I can get with an energetic X ;))
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