One of our passions at Feed to Succeed is tubies (tube-fed kiddos). I recently asked one of my long-time, favorite moms to share her insights on what she would have done differently in regard to feeding her tubie if she knew then what she knows now. She put so much thought and care into her reply, that I was touched and impressed, and told her we had to share this with other families on the long road of feeding a medically complex child. My sincerest thanks to Kristen for sharing her transparency and wisdom, and for letting us share her thoughts. -Betsy
I’ve been thinking about what I would’ve done differently when Levi was still a baby. This is a mix of feeding/oral aversion/home nursing thoughts because I think they all go together for the whole picture.
Had I had the slightest clue to see a dietitian prior to Levi turning 1, I [would have done so] when he started throwing up around 6mo. It seems like the docs tell everyone to see a dietitian at age one to wean off formula, but in reality the dietitians that are experienced with tube feeding are much more knowledgeable than the docs about that kind of stuff.
#1 Tube wean: The #1 thing I wish I would’ve been able to do was try a tube wean when Levi was still an infant. In my experience, the docs will never mention tube weans to parents and pretty much discourage them, but had I known what I do now I would’ve wanted to try a tube wean early on because I have since learned that prior to the age of 1 year, there is close to a 100% success rate for tube weaning, but after 1 year success rates drop.
#2: Syringe feeding: I wish I had known about syringe feeding when Levi was a baby and started doing that with thickened feeds. Syringe feeding works better with thickened feeds than using the bag/pump. The miracle o-ring syringes are the best! https://www.squirrelsandmore.com/products/60-ml-miracle-oring-catheter-tip-syringe?_pos=203&_sid=f7e5db45c&_ss=r&variant=18955321607
#3: Aerodigestive Team – I wish I would’ve had a true aerodigestive team (ENT, pulm, GI) that could’ve consulted with our dietitian and feeding therapist. Both our GI and pulmonologist are knowledgeable with this but don’t work together. And the one piece missing from that is a dietitian! If the docs consult with a dietitian with tube feeding experience about the kids that are really complex it could be so helpful for those kids.
Our pulmonologist did want to know what GI was doing with her patients, but she didn’t like to make too many recommendations about it because she said, “GI doesn’t like it when I get up all in their business,” lol. I would push her a bit and then she’d give me rec’s or things to ask about. 🙂 I wish I would’ve requested the docs to talk to each other. I was comfortable talking with GI about what nutrition was doing with Levi because I had a good understanding of it, but I really needed the three docs to be able to put their heads together about the post-tussive emesis (coughing until throwing up) and talk meds. Instead, it was me asking them if they had ideas and then them telling me, “ask pulm about this med, ask GI about this med…” We would just go in circles.
#4 The oral aversion – do anything at all costs to avoid oral aversion! If it can be avoided: no suctioning of the mouth. I should’ve never let the nurses suction Levi’s mouth. Most home nurses aren’t knowledgable about oral aversion, and as you know, it’s hit or miss with the quality and skill level of home nurses…
#5 Home nursing – In general, I’ve experienced that they love to suction, they have a hard time titrating feeds and like to follow a specific schedule. They like to feed with the pump because it’s easier, they don’t like constant change with feedings, and they don’t like it when the schedule changes. They have a hard time adjusting schedules to accommodate for developmental changes. They often don’t take into account that a baby is still a baby and changing a lot – they just want to feed “X” amount at “X” time.
They may push back against all of these things when a parent wants to do them. I found it best to just tell the nurses, “the therapists say no more suctioning of mouth, or the dietitian says Levi needs to do feedings this way…that way it’s not necessarily coming from the “bossy mom” who they have to deal with everyday but someone they don’t have to see often, so that hopefully they don’t lash out at the mom because it’s more work for them (even though it’s better for the kiddo). If necessary, the parent can get something in writing from a doctor because the home nurses “have to follow doctor’s orders.”
I hope some of this is helpful for anyone going through this now!
Stay strong on this journey! Feel free to contact me if you want to connect.
– Kristen Hanna, firstname.lastname@example.org