A New Feeding Plan?

Well, today Kinley had an appointment at Children's Mercy. She saw her nurse practitioner at the Special Care Clinic and the occupational therapist. We were told that Kinley is still doing well with weight gain. She has not gained as much as she did the last time we were at the clinic, but we have been trying to wean her off the NG, so she has not been eating quite as much as she used to. Today Kinley weighed in at over 15 lbs. Way to go, still good weight gain!

This was the first time that we have discussed weaning the NG with Kinley's NP and OT at Children's Mercy. We have been weaning based on recommendations from Kinly's OT from Infant-Toddler Services of Johnson County and her pediatrician. The NP and OT today were not opposed to us trying to wean Kinley because she is still keeping up with her growth curve, but they thought we should go about it another way.

It has been a little while since I posted an update on Kinley's feeding progress, so just to get caught up here is the latest. Just like any other kid Kinley has her good days and not so good days. For the most part though, she is doing well, slow and steady progress. For the past couple of days Kinley has taken 500 mls from bottles during the day, and Kevin and I have been giving a 200 ml/hr bolus feed at night. We feel pretty good that she is taking over 50% from bottles. The problem is in how Kinley is taking her 500 mls from the bottle. Kinley still does not eat a large amount of food at one sitting. She is more of a "grazer." This may be healthy for adults, but is not necessarily the thing you want an almost 6 month old to be doing. Kinley will have some bottles that are as small as 30 mls and then she is a little hungry an hour later. She will take another 30-60 mls then. Occasionally she will have a good feeding over 100 mls, and then she can go about 3 hours before eating again. This has been going on for the past month or so, ever since we started weaning and trying to feed her based off her hunger cues. It has been really hard on Kevin and I. We are basically confined to the house since we are feeding so often. If Kinley does have a good feed then we quickly try to get out of the house to run errands if we need to. We can't really go anywhere with Kinley or do anything if she is eating every 1-2 hours. Kevin and I have been doing it this way though because we were trying to feed her based on her hunger cues rather than on a schedule. Like I said earlier, it is working to get Kinley to take more by bottle, but it is not the ideal situation.

The NP and OT suggested that we go back to feeding Kinley on a schedule because that is how most healthy (normal) babies eat. They thought it was important for Kinley to learn to eat full quantities less frequently and get on a normal schedule. Plus as an added bonus for Kevin and I we would hopefully not feel like the whole day revolves around feeding Kinley. Their suggestion was to feed Kinley 130 mls 6 times per day. (FYI Kinley is still getting fortified breastmilk that is thickened to a nectar consistency.) We would try the bottle first and whatever Kinley does not take by bottle would have to be pumped into her via her NG tube.

I am not sure if I am totally on board with this new plan. I kind of feel like it is a step backwards to use the NG during the day again. Plus, if Kinley throws up during the day we would have to replace the tube right away. Now we just leave it out if she throws up and replace it for the night feed. It has been so nice not to have to worry about replacing the tube all the time. Kevin and I have been discussing the pros and cons of both feeding plans and have not come up with our plan yet. I guess I was just disappointed that the NP and OT didn't say to go ahead and take the tube out and just see how Kinley does. Wishful thinking on my part. I know in my head that Kinley is not at that point yet, but I can't help to think how nice it would be without that tube. To make matters worse, the NP started asking Kevin and I if we had thought about a G-tube for Kinley! I was a little blindsided by this comment because I thought we were trying to wean Kinley OFF the NG tube. I didn't really want to hear that they didn't think Kinley would be able to come off the NG anytime soon, and that a G-tube would be something they wanted us to consider. I am still hopeful we can get Kinley off the NG tube and that a G-tube will not be necessary. We all know that Kinley is a tough little girl and can pull of miracles if she wants to.

On a brighter note, Kinley was able to try cereal at her OT appointment. The OT said the cereal was just for developmental purposes, and not to increase nutrition. She said it was good to let Kinley get used to eating from a spoon and having a different texture in her mouth. (It is also a good photo opportunity.) We still have to rely on the milk to deliver the nutrition and calories that Kinley's needs though. Kinley looked so good sitting in the highchair and acted like she was enjoying it. The hospital was out of rice cereal, so Kinley got to try oatmeal instead. I was hoping that since Kinley is at that stage where she puts everything in her mouth, the oatmeal would not be a big deal, but Kinley was not a fan. She moved it around inside her mouth for a while and then started to cry. It will just take some time for Kinley to get used to this new experience. We are supposed to sit Kinley down at the dinner table with Kevin and I once a day and feed her rice cereal at home. I am looking forward to that.

Here are some pics of Kinley eating her oatmeal at her OT appointment.

The before picture, Kinley looks ready to eat!

This is Kinley during the feed, she kept looking away and trying to bat the food away with her hands. Looks like she needs a little more practice eating from a spoon.