This one goes out to the desperate new mom of a Down syndrome baby researching this subject. Because I know that life! And also to anyone else who cares. :)
I have three kids, and I can honestly say that the biggest challenge I have had with each of them as newborns is establishing good feeding patterns! Those little systems always seem to struggle as they get up and going! My two boys each had their own feeding struggles. One was underweight and had horrible acid reflux, and the other deserves a book of his own chronicling our year-long strong with painful oral cysts (unopened saliva ducts) that had to be removed surgically and intense food allergies (FPIES to rice of all things--no baby cereal for him). I just share that to point out that feeding struggles seem to be a normal part of the newborn experience around here! And sure enough, what is our biggest challenge at the moment with Lydia? Feeding.
One of the attributes of Down syndrome is hypotonia, or low muscle tone. Essentially this translates to things like limited mobility/muscle strength and crazy flexibility. This includes all the muscles in the body, and can affect multiple systems and processes, including swallowing and digesting food.
Breastfeeding is a workout for any baby, but for a baby with Down syndrome it is especially challenging. Although Lydia's first nursing experience was positive, and although her sucking reflex was good and strong, she struggled with the coordinated whole-mouth process of suck, swallow, breathe required for breastfeeding successfully. One of the primary goals of our NICU stay was establishing healthy eating patterns with her and making sure she was gaining weight.
Eventually, much to my motherly disappointment, we decided that she wasn't getting enough food breastfeeding, and so we began to feed her expressed milk by bottle. The good news is that she was able to successfully eat and gain weight bottle feeding! This was much more preferable to us than inserting a GI tube! The bad news is, all that bottle feeding completely put her off breastfeeding for awhile, and thus the awful cycle of pumping and bottle feeding began.
While I am so thankful that I am still able to provide breastmilk for Lydia (the health benefits of which are even more important for DS babies), it can be truly exhausting to feed her and pump every three hours. The whole process usually ends up taking an hour and a half, so it's basically all we do. Still.
I kept trying to nurse her and for awhile there it was a battle---she would just scream when we tried. But after a lot of comfort nursing and skin to skin, she slowly improved. By 6 weeks she would actually breastfeed a little! I estimate she was getting about an ounce at each feeding. We're still working on improving from there. I think we started having success once we switched from the NICU bottles to a bottle that better resembled breastfeeding. I use this one from Lansinoh and it has been an awesome stepping stone for us! We also use a nipple shield to help her transition. I also got some Tommee Tippee bottles that we are going to try---but we have to work up to those, to. It's truly a process of baby steps.
Breastfeeding practice takes a lot of time and effort---on top of the already hour and a half long process, haha---so we honestly only work on it occasionally since for health reasons we're still primarily concerned about her successfully gaining weight (and also, sanity ;-). I have confidence that she will get there eventually if we stick with it.
A normal feeding currently looks like this: We wake Lydia up because she sleeps a LOT, and change her diaper. Then we start feeding her from the bottle. She gets the first 20 ml down really well, maybe leaking out her mouth to varying degrees because dang it, those muscles are hard to control! Then she usually falls asleep. So we burp and tickle and try to wake her up so we can continue through the rest of the feeding. Repeat every 3 hours. (We go longer at night. Because, again, sanity.) It's a really successful feeding if we get anywhere close to 3 ounces or 90 ml. We rarely hit that mark, usually getting closer to 2.5. But she is chunking up, and those big cheeks make me especially happy because they are a lot of work!!!
And here is a series of pictures I posted as an Instagram Story that summarize our feeding life and my feelings about it. ;-)
As monotonous and exhausting as the whole process is, look at the results! WORTH IT!!