I breastfed my oldest over 2 yrs and was equally, if not more determined to breastfeed my baby with Down Syndrome. Not only was I hoping for immunity benefits, but breastfeeding promotes oral strength that feeds into speech development. DS babies typically have low tone (which can be thought of as floppy muscle weakness) that makes this challenging.
There was another obstacle ahead of us. Heart babies tend to be sleepy, especially ahead of surgery, and fall asleep feeding quite easily. To repair my baby's Tetralogy of Fallot, which was inclusive of a VSD, we would be trying to wait until 3-6 months to do the surgery for best outcomes.
We found out prenatally about the diagnosis and her heart condition, so I sought help during pregnancy. I got to know a local La Leche League leader whom would talk to me for hours about how to prepare.
It did take me 9 months to successfully breastfeed directly, while in the meantime exclusively pumping. Along the way I compiled a practical guide for breastfeeding (any child). Too many moms start without being armed with the right tools.
The most important factor underlying success would be my milk supply. Since my baby wasn't strong enough to feed and remove much milk, and milk is demand driven, if I didn't pump my body could have stopped producing enough milk.
Babies with medical issues are often taken to the NICU, so figuring out how to keep my supply up while separated was extremely important.
Breastfeeding is admittedly a full time job on its own, while both exclusive pumping and triple feeding are truly next level commitments.
Exclusive pumping means feeding your baby with a bottle entirely through breastmilk. Ideally moms have help to feed with the bottle while they pump, but in reality many moms have to do both. If it's possible to do both at the same time, then great. Otherwise you double up the typical amount of time spent on feeding the baby.
Triple feeding means offering the breast directly first, then supplementing with the bottle, and then pumping.
I triple fed my Down syndrome baby for 9 months(offering breast, bottle feeding, exclusive pumping). There were definitely periods of bottle preference, or times I was too exhausted or busy to offer the breast first, but i latched her every day at least once a day.
The only way to teach a baby to breastfeed, is by offering the breast.
We started solids around 7 months, though because of the low tone she was not very skilled at eating. Feeding solids was mostly practice. I had been hoping we could transition her to solid foods and reduce the breastmilk intake.
Finally around 9 months she took the first feed of the day and seemed pretty satisfied. I was still unsure about when to transition her fully.
One day she had trouble with the avocado we gave her, started throwing up and ended up on pedialyte one afternoon.
And then it happened. She started taking all of her feeds entirely by breast.
The transition wasn't easy. I had to figure out how to stop pumping and still maintain enough supply for “easy” flow. But I could see the jaw motion and the connection she was making on the breast. It was magical.
She still didn't have total head control. But I was filled with overwhelming pride and joy.