Monday, October 6th - Weaning the NG!

On Monday Kinley had a visit from her occupational therapist from the Infant-Toddler Program. Once again, I had to miss the appointment because of work, so this is what I have been told about her appointment.

Kevin fed Kinley before Jami (the OT) came over. This left time for Kevin and Jami to do some talking about Kinley. Kevin asked questions about g-tubes since we have started to accept the fact that Kinley is just not eating well and we don't really see her getting rid of the NG tube anytime soon. Since we still have to replace the NG fairly often we were wondering if a g-tube might be easier on Kinley overall. It would mean no more sticking a tube up her nose, but would require a surgery for the initial placement. In case you are not familiar with a g-tube, it is a tube that goes into the abdomen and directly into the stomach. I haven't really done much research on them since we are not at the point of placing one in Kinley yet. Kevin and I are not to thrilled about Kinley having any more surgeries right now, especially if it is not a necessity.

Jami said she thought Kinley was not ready for a g-tube yet. She actually wants Kevin and I to try and start weaning Kinley off the NG tube!! Jami thinks that Kinley could be weaned off the NG by the end of the month! That would be great, but I am not holding my breath. Jami said that since Kinley has done so well lately at packing on the pounds it would be ok to try and starve her a little to get her used to feeling hungry and learning that eating from the bottle would cure her hunger. Jami wants Kevin and I to feed Kinley a bottle when she shows signs of hunger. This will be a learning experience for all of us since Kinley doesn't really know what hunger is (she has never had to feel hunger before) and Kevin and I don't know what her hunger cues are. Kevin and I are supposed to stop feeding Kinley after she is done with the bottle. (Normally we would give her the rest of her feed through the NG tube.) If Kinely gets too far behind only eating from the bottle during the day we can give her a feed through her NG, but otherwise we are just supposed to let Kinley get hungry and eat what she can from the bottle. We will still supplement her bottle feeds with an overnight tube feed so that Kinley gets enough milk to maintain her hydration status. It is exciting to hear someone talk about weaning the NG tube especially since Kevin and I were starting to think we would never get Kinley off of it.

Jami and Kevin also talked about Kinley's reflux and how to better manage it. Kinley has been waking up and having a lot of thick, clear mucus in the morning. A few times the mucus is so thick that it causes Kinley to gag and throw up. Jami said that is common with reflux babies, especially when they have an NG tube. The thick, clear mucus is Kinley's way of combating the reflux. The body makes the mucus to line the stomach and esophagus to protect it from the acid that comes with reflux. Since Kinley's reflux is already being managed with meds, Jami came up with an additional way to help. She is letting Kinley borrow a Tucker Sling. A Tucker Sling is a device that allows us to keep Kinley at an angle when sleeping so that her head can stay elevated. The Tucker Sling hooks around the head of the bed and Kinley is strapped in kind of like she would be in a swing. This prevents her from sliding down her bed when the head is elevated. This is a little hard to explain, so I have attached a picture.




The picture doesn't really show how elevated Kinley's head gets in her bed, but hopefully you can get the idea. Kinley actually sleeps really well in the Tucker Sling. I was worried she wouldn't find it comfortable, but that is not the case. Doesn't she look relaxed with her hands resting under her head?

Jami also stated that Kinley is doing so well with her head control that we can finally use her Bumbo chair now.

Sounds like Jami is pleased with Kinley's progress and so are we!!