Every 2 weeks, we meet with a team of therapists and doctors to help the boys with their feeding issues (to one day get off the G-tube). The team has an OT (occupational therapist), pediatrician, dietician, physical therapist and psychologist that all work together to continue creating and tweaking a feeding strategy for the boys. We’ve only been for a few appointments so far but I can tell they will be so helpful already!
It’s been a tough few weeks as we slowly accept that our boys will never take a bottle and are 100% fed via their tubes. We used to have hope that a few weeks or months of being home would change things and that they’d get back to finishing full bottles like they used to.
That hasn’t happened. The feeding team shed some light on why they won’t anymore.
Before a certain age (2 months I think?), sucking is a reflex. Put a bottle in a baby and they drink it, for the most part (other problems can come up obviously). After that time period, their reflexes start to fade and instead they must take conscious action to drink a bottle. They have to think about what they’re doing. And, as much as I hate to think it, it looks like everyone was right about their brain damage. Because now that they have to think about it, they can suddenly no longer do it.
Perry loves his bros.
It’s hard to see such a regression in their skills and even harder to endure this transition. They still feel hunger and cry forcefully to say, “Feed me!” There is not a more helpless feeling than holding your screaming baby while the tube is running and waiting for the feeling of fullness to kick in. That takes at least 20 minutes if not longer sometimes, of crying and flailing. (We can’t run the pump too fast otherwise it fills them too quickly and they puke it all back up.)
We are now feeding them more often which means even less sleep than we were getting before, but reduces their puking and makes it so they’re not TOO hungry each time (sometimes – babies have a way of not sticking to plans very well!).
Jaxon’s little smirky smile.
We still try a bottle at each feed like we used to, if only just for the practice of associating eating with their mouths. Right now our plan is to keep going like we are for another 2 months when the boys will be 6 months corrected age (9 actual) and we can begin purees/foods other than milk. FINGERS CROSSED on that!
The Ax Man.
So while we have a good system at home for dealing with their tubes now and everything, it’s still hard to leave “my bubble” and enter the real world.
I can no longer interact with the world like I once did. It’s like I’ve been to this other world, this hellish place, and come back to the real world without quite fitting back in like I used to. A puzzle piece taken out, changed, and trying to fit back into its old puzzle.
Jaxon’s almost 13lbs now!
Seeing other babies is still hard for me, although I love to see them. Talking about pregnancy is hard for me. Talking about anything motherhood related is hard for me, even though I love to talk about my boys. I can want to talk about something and love it and hate it all at the same time. I love the tubes for providing nutrition to my boys, but I hate that this experience of motherhood is SO not what I ever dreamed of happening… even when we entered NICU life. I can love and hate at the same time. And I suspect I’ll have these duelling emotions for at least a few years to come…
