Getting ready for the new tube

We are waiting to hear back from radiology. They will be placing her new tube either this afternoon or tomorrow. Since it is already after 3 here, I am assuming it will be tomorrow. Then they will try the advancement on Friday. Hopefully this plan of action will work a little better than doing it all at the same time as before.

The infections doctor has monitored her site infection daily and says it is looking good. We have been putting some duoderm tape snugly around her stoma and the hole is closing up much better. We are hoping this will help prevent future infections.

I am being optimistic and trying to get a few things in order in respects to going home. Baby girl is doing so great. Desats have been very minimal. Each head ultrasound has come back stable. We just need to get this tube issue taken car of.

Her physical therapist continues to be very pleased with how she is doing developmentally. She is getting so strong with her head control. We still have not seen a speech pathologist even though I have asked numerous times. The OT has only been in maybe 3 times over 6 weeks. I am concerned because we really need to be working with her on oral stimulation to get her swallowing. This is a huge hurdle that in hindering many areas right now. For one, we cannot even attempt bottle feeds because of the high risk for aspiration. It also impedes her airway when she gets too much saliva in her mouth and she cannot swallow it. She LOVES her paci but the more she sucks, the more saliva she creates. Then she just gets a pool of liquid sitting in her mouth that either comes out of her nose (because of the cleft palate) or she starts choking on it which makes her upset which makes her want her paci which starts the cycle all over again. Needless to say...we must have a suction machine when we go home. A bulb syringe is not going to cut it for her.