Well, Emma has gone up and down in weight worse than a yo yo dieter. The good news is the trend overall is upwards. She had a g.i. appt. today to burn off some granulation tissue (type of scar tissue) that formed around her button. She's 27 1/2 inches tall and 16 lbs 7 oz. (this bumps down to 16 lbs. Frequently). She is finally sitting unassisted (if we sit her up and bend her knees. hehe) Nowhere near standing, crawling or walking. She doesn't even roll, she scoots around on her back which has left an almost bald spot. It's kinda cute. Right now she is on 50 cc/hr for 20hr/day. This equals about 660 calories. She needs about 750/day. Her doctor typically switches tubefeeders to pediasure at 1 year and she is only a month away so she'll be switching within the week. The good news is Pediasure is covered by insurance so we'll have a copayment but better than the hundreds of dollars on formula each month! So, she'll start on Pediasure 3/4 strength, 50cc/hr for 20 hours. This equals 750 calories/day.
Some more good news. Emma is FINALLY on the growth chart. WOOHOO. She is 25% in height and 3% in weight (skinny minny), as far as height/weight proportionate she is 10th%. Not too shabby! Her weight goes up and down but the overall curve is upwards so we're thinking positive.
On a semi blah note, Emma is still not tolerating any solid foods. She has shown a lot of interest in eating as does really well, but anything except water makes her reflux flare up bad. We now are not even guesstimating a date to take out her tube. We will focus on just getting her the nutrients she needs to grow and meet milestones. Her prevacid is being upped to 1 solutab, twice daily. We're also throwing carafate back into the mix. Hopefully this will help keep her reflux at bay so we can introduce more solids and eventually wean from the tube. Like I said, we're not really aiming for a date other than "before she starts Kindergarten", according to the doctor. I don't mind the tube at all. It makes it a lot easier to not even think about it or to not dwell on it.
So, overall it was an okay appointment. We go back in 6 weeks again. On a side note, the new pump we got doesn't work right so it has to be sent back and an infinity needs to be ordered. So, we have the pet pump for a few more weeks. It never ends. lol.