Raise your hand if breastfeeding was harder than you imagined it would be. I’m waving mine frantically in agreement. And even though breastfeeding was the right path for me and my two babies, I want to say that I support a mom in whatever method she uses to nourish her baby.
It’s hard work to feed your baby and you need to find what way works for both you and your baby. My son was primarily fed by a feeding tube the first two months of his life, so I really mean it when I say I support whatever method. But I also want to provide hope and encouragement to the mom who is trying to breastfeed in extraordinary circumstances.
Breastfeeding is hard. It takes so much time, energy and effort under normal circumstances. But my experience was anything but typical – both times. My daughter was diagnosed with Down syndrome at birth and stayed in the NICU for 9 days. My son was born prematurely at 32 weeks and stayed in the NICU for 66 days. But against these odds it was possible to breastfeed.
Especially during my son’s long NICU stay, I scoured the internet for stories of moms who had breastfed after a long NICU stay and I really couldn’t find much. So I wanted to give encouragement through sharing my story to the mom trying to breastfeed in extraordinary circumstances.
Breastfeeding is possible after a Down syndrome diagnosis
People with Down syndrome have low muscle tone and since your mouth is a muscle it can lead to a host of feeding obstacles, especially for breastfeeding. But the nurses, doctors and lactation consultants around me never dissuaded my desire to breastfeed, only encouraged it.
But it wasn’t easy! In the early weeks I was nursing, offering a supplementary bottle and pumping every 2-3 hours around the clock. Talk about exhausting. Everyday felt like two days without the reprieve of a long sleep. As days and weeks passed, we fell into a much more manageable breastfeeding rhythm as she no longer needed supplemental bottles and I didn’t have to pump after every feeding. It might take a little more work, but breastfeeding a baby with Down syndrome is possible.
Breastfeeding is possible after a long NICU stay
When my second baby showed up 8 weeks early, I felt like I was in new breastfeeding territory. I started pumping right away. It felt like the only thing I could do for my baby as he was swaddled safely under the watch of his medical team. I felt proud to provide the milk they were using for his feeding tube. And it kept my breastfeeding hopes alive.
For weeks they worked on his feeding skills using a bottle because his ticket out of there was consistent feeds by mouth. So, I embraced the bottles, while keeping my breastfeeding goal alive. The nurses were encouraging that once I got home he could breastfeed.
After 66 days in the NICU, we brought him home and the real work began. Two weeks after bringing him home, he showed little interest in latching. It was so discouraging and I was exhausted. I knew something had to change, so I met with a lactation consultant and we devised a plan to slowly wean off my pump because I couldn’t keep up the exclusive pumping any longer. It was at that time she encouraged me to put him to breast just 1 time a day. So for the next few weeks I slowly stretched out the pumping and would offer him my breast once a day with little improvement.
I was down to pumping twice a day and content with my decision to formula feed when he latched. And then he latched again and again. Something just clicked for him. He was 3 months old when he started exclusively breastfeeding. It might take longer, but breastfeeding is possible after a long NICU stay.
Breastfeeding is just one way, not the way
I struggled with feeling like a failure or that I was quitting when breastfeeding wasn’t working for me, especially with my son’s breastfeeding journey. But that is just not true.
I want moms to hear that it’s not giving up or failing if you don’t breastfeed. You are choosing what is best for you and your baby. Feeding your baby is hard work whatever method. But I also want to say it is possible to breastfeed in extraordinary circumstances. It just might take more work and time. If you have a desire to breastfeed, give it a go! But at the end of the day fed is absolutely best.
