Our breastfeeding journey started out different than I imagined at the start of my pregnancy. Having nursed Kaylee Dee for 21 beautiful months I felt SURE that I would nourish her younger sibling just as effortlessly for just as long, if not longer. Enter: Down Syndrome diagnosis coupled with duodenal atresia, and I knew Everly and I would take a different path. I would do whatever it took to make sure she was given that precious liquid gold, so the day she was born I kept bugging the nurses to make sure they didn’t forget to bring a hospital grade pump to my recovery room. In between visiting Everly in the NICU, I pumped. Every 2 hours, while waiting on her to come out of surgery, while David and Kaylee Dee visited, in between going upstairs to gently hold her hand and caress her little face in her incubator, I pumped. I felt helpless and like every aspect of being a mommy had been taken away from me. l may not have gotten to nurse my babe upon birth, or cradle her little body, or sleep with her next to me in a little sleeper I had carefully chosen. I didn’t get to give her sponge baths or gently clip her nails, but I could prepare for the day she was able to eat. So I pumped around the clock, setting my alarm, and buzzing the nurses in the middle of the night every 3 hours to bring Everly’s carefully pumped and labeled breastmilk up to the freezer in the NICU.
One very excited new big sister, helping mommy pump in the hospital.
I continued this when I was discharged and moved into the Ronald McDonald House of NWF, using the hospital grade pump in their Nursing Nook, and using one of the three pumping rooms they had in the NICU. I was getting an impressive 40-60 ounces of breastmilk per day, just building up a stash for when Everly was finally able to take her first tiny bottle of colostrum when she was 15 days old. She was in the NICU for 32 days while I continued exclusively pumping, because while the NICU doctors are VERY pro breast milk they are NOT pro breastfeeding. Down Syndrome also adds a challenge to breastfeeding; Everly was born with low muscle tone, so low in fact that her speech therapist labeled it as a zero(as in none) in her cheeks, which of course meant that she struggled to even have the stamina, or a proper latch.
Everly’s first tiny bottle at 15 days old in the NICU.
We came home to speech therapy where we were given a Bionix special feeding bottle to help teach Everly how to eat correctly, and which muscles to tone up in order to have a good latch. After being home for about 2 weeks I got mastitis which tanked my supply. It got down to only being able to get 6 ounces a day. I was so thankful for the large stash I had in the freezer to hold us over while I got my supply back up using different supplements. All told, I’ve used Reglan(made me exhausted), Fenugreek, Mother Love Tincture, Mother’s Milk Tea, Blessed Thistle, Mother Love Capsules, Domperidone, and lactation cookies, which worked wonders for a short period of time.
A shot of just some of the supplements I’ve used.
I was able to get my supply back to either the full amount she needed a day, or just 5 ounces shy of her intake. Around 5 months old I ran out of my stash which was holding us over and found out about Human Milk for Human Babies, an online community for milk sharing. Everly has been the recipient of donor milk from several generous women. As she grew stronger she was able to nurse occasionally, but never as her only source of nutrition, since she still lacked the muscles to nurse efficiently.
Down Syndrome did not stop this sweetie from eventually getting the hang of it.
I kept up my pumping routine until just 3 days short of her turning 8 months old. A feat that I’m both proud, and disappointed in. I worked hard, pumping at work, in the middle of the night, and all throughout the day, while trying to come up with different ways to entertain 2 little ones when I couldn’t get up and hold them.
Pumping in my office at work. I got to provide Everly with nourishment AND get out of taking my kiddos to recess!! Woohoo!!
I didn’t make the choice, and neither did Everly, to stop breast-feeding, which is why I’m disappointed. Today I pumped 4 times in the morning each time without producing a drop of milk. My body finally gave in and the supplements quit working. We still have donor milk, and will hopefully continue to receive breastmilk until Everly is at least 1, if not for longer.
I can’t speak enough about the wonder that is donor milk. We’ve been the recipients of milk from a sweet first time mother, who had her own early breastfeeding struggles(lip tie), but pushed through and is still going strong, a mother who lost her dear, sweet baby shortly after birth and continued pumping for months as therapy, a woman from a nearby town with some extra ounces to spare, and from a mother, Adina Pop, whom I met on HM4HB who I now consider a friend, who provides milk for 2 babies in addition to her own. She is a rockstar, and I am so glad I found her. I’ve been given support and advice on a Facebook site called Hot Moms Breastfeed; a title well deserved by the women on that page, because they are beautiful, both inside and out. All of these women have reminded me in the most raw, natural part of mothering, that it takes a village, and I will be forever grateful that they became part of my village, for however long or short they were there.