Preemie - feeding therapy

AlwaysSunny925

My son was born at 25 weeks and has developed hydrocephalus due to a brain bleed that occurred after birth.  I posted a few times before when he and his brother were getting their shunts put in.  Today our NICU told us that they want to transfer Ryan to a rehab facility that can work on his feeds with him since he is having hard time swallowing.  He sucks but doesn't swallow, so the milk just pours down his throat and goes into his lungs.  We have been in NICU for 13 weeks and now we are looking at an indefinite amount of time before he can come home.  His brother will most likely be sent to same facility later on because he has a cleft palate + hydrocephalus, which will make it hard for him to feed.  Anyone experience feeding therapy with a newborn?  Just wondering what it entails. 

Edit: spelling

MrsAmyB

Hi there! My triplets were born at 33w5d (so not as early as yours) and my son (also Ryan) has hydrocephalus except that he hasn't needed a shunt yet. He has another checkup tomorrow. He fed just fine but his sisters were both in feeding therapy since about 2 months when I realized that they were eating differently. A streaming xray showed what you described, pooling the milk in their mouth but letting it just pour down their lungs. Mine were silent aspirators which means that they didn't cough it up either. We used SimplyThick to thicken their milk and a feeing therapist who helped us hold their jaw a certain way to promote strengthening their muscles. They also had wedges that we would feed them in and keep them in for 15 minutes after a feed to reduce reflux. Wth twins, I would highly recommend getting a pump of simly thick. Otherwise, the little ketchup packets of thickener can be annoying when you have to rip open two per bottle and your babies are wanting food now! We were able to wean the girls off of thickener at about 9-11 months and a second streaming xray showed that the therapy was successful.

AlwaysSunny925

Hi MrsAmyB.  Thank you for your response.  I hope Ryan's checkup goes well and that he dodges the shunt!  Did the girls get in-home therapy?  And was this after they were discharged from NICU?  If so, did they go home a feeding tube?