Thursday, October 3, 2013

Nursing Nolan

In effort to spread more information and support for breastfeeding, and breastfeeding a baby with Down syndrome, I'm sharing my personal experience.

Breastfeeding Nolan was a struggle from the start. While pregnant, I had decided it was very important for me to breastfeed him. Fortunately, once I decide to do something, I follow through. Eventually, my stubbornness paid off, and even though it had its challenges, breastfeeding Nolan was one of the most rewarding experiences of my life.

I remember sitting down with Nolan’s pediatricians the day after we received his Down syndrome diagnosis. We were in a conference room talking about Nolan: what his diagnosis meant, how he was doing in the NICU, and what the plan was. I was feeling very emotional and overwhelmed by everything, and also just so overcome with a desire to take care of my baby. I asked the head pediatrician a lot of questions that day, including whether or not I should continue trying to breastfeed him. Her answer was, “Yes. Absolutely. Breastfeeding him is especially important now (meaning since we knew he had Down syndrome).” She explained that he was at higher risk of infections because of his diagnosis, and breastmilk would help keep him healthy. She also described how learning to nurse would help strengthen his mouth and the muscles in his face and tongue, which are generally weak in infants with Down syndrome. I was very comforted that I had this new task: to breastfeed Nolan. It was something I could DO for him. It was something I could do to get him strong and healthy. It was something normal in the sea of different I suddenly found myself trying to navigate. I needed to breastfeed Nolan as much as he needed it.
Daddy feeding Nolan some pumped milk.
Nolan's like, "I'm too tired to eat."

The first several days at home, I really struggled to breastfeed him. It was all new to me, and Nolan wasn’t very good at it. I pumped a lot and we tried to feed him bottles in between nursing, but he wasn’t good at bottles either. Finally, I decided we need to work on one or the other and I chose to focus on nursing. When Nolan was 2 weeks old, he was still struggling and I, desperate for help, took him to a breastfeeding support group I had learned about in my prenatal classes. Adam drove us and waited while I got help for almost 2 hours from the lactation consultants. I left the group that day feeling infinitely better. Nursing didn’t get easier overnight, and I continued to go to the group for help, but the information and support I received there from the lactation consultants, and other moms, made all the difference. Since Nolan had been in the NICU, I had been using a nursing tool called a “breast shield” or “nipple shield” to make it easier for Nolan to latch on. For weeks, his muscles were too weak to latch on without it. As he got stronger, and with help from the support group, I was able to stop using the shield when Nolan was a couple months old. (If you want more information on nipple shields, you can read about them here. They are easy to find at baby stores and our grocery store even carried them.)
Breastmilk makes for happy dreams.

I could really tell Nolan had finally got the hang of nursing around 4 months, and I could see him plumping up. However, I didn’t feel he really excelled at it to where I could really relax until he was about 6 months old. It was a long journey. I utilized the support group a lot as Nolan would go through different stages and phases. I continued to go even after we no longer needed help. I enjoyed the camaraderie of the other moms and the lactation consultants loved to watch Nolan grow. That group, and especially the two lactation consultants that lead it, really meant the difference between success and failure when it came to nursing Nolan. Last February, I wrote this letter to thank them:
I have been nursing my son for 17 months, and I would like to thank Mary and Kathy for helping me get there. I met them when my son was 2 weeks old, and they’ve helped me give him more than just milk. They've helped me give him health, security, comfort, strength, and so much more.

Breastfeeding my son was extremely important to me from the start. Since he has Down syndrome, he has an increased risk of illness/infection, so I knew breastmilk, with its immune properties, was crucial to keeping him healthy. In his 17 months of life, he has been 100% illness-free. His health is a testament to the benefits of breastfeeding.
All the benefits my son received from breastfeeding might not have been possible if it wasn’t for Mary and Kathy. I had numerous challenges breastfeeding my son at first, the biggest of which was latch-on. The support I received from Mary and Kathy was invaluable. They provided me with advice, guidance, support, and encouragement I couldn’t find anywhere else. Even as my son is older now, Mary and Kathy continue to be a resource I know I can turn to.

Thank you, Mary and Kathy. I cannot thank you enough for the priceless gift you helped me give my son.

(Nolan would thank you too if he could!)

A few weeks after writing that letter, one day, Nolan suddenly decided to stop nursing.

Cold turkey. Done.

I was kind of a mess. Firstly, Nolan hadn’t really learned to drink out of anything else yet. We had been working on a bottle (on days I was at work), and a straw cup, for months, but he was just doing ok at those. We suddenly had to do a crash-course in bottle and cup drinking! Secondly, no one warned me about the hormone fallout. Nobody! The whole time you’re nursing, your brain is sending you all these wonderful, lovey-dovey chemicals that make you feel good and loving. And then when baby suddenly stops nursing -boom! They’re gone. I felt like the bottom had dropped out. And, of course, it didn't help that my child, who every day of his life has needed me and wanted me, is now rejecting me like I'm poison. Love you, too, Nolan. :) I tried to get him to come back to it for a week or two, thinking maybe he just needed a break because he was teething. (I’d heard that some babies go on “strike” from nursing sometimes related to teething.) I pumped for a couple weeks, and then realized he was really done. I cried the day I packed up all my nursing stuff to put away in storage. That was a huge, wonderful, fulfilling part of my life for 18 months, and I was sad to see it end. After that, I really did recover quickly. Nolan was growing and developing and seeing him become more independent was exciting. (Plus, I'll admit, it was nice knowing I could leave him for more than a couple hours without needing to pump!)
Just chewing on some pump supplies...

Daddy, Nolan.... and a breastpad.

So, from a bumpy beginning, to a surprising end, nursing Nolan was quite the adventure. I’m so fortunate I was able to do that for him. And, I’m so fortunate that I had such incredible support from my husband, Nolan’s pediatricians, and the breastfeeding support group. Breastfeeding can be hard, especially for babies with Down syndrome, and support and education is vital in those situations. (Believe it or not, I know of one mom who was told by the pediatrician that she couldn’t breastfeed her baby after receiving a Down syndrome diagnosis!) Even though breastfeeding wasn’t easy for us, it was so worth it and I know it did so much good for Nolan.

Thanks for reading! 

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