I read a memoir called Raising a Rare Girl and, the author, Heather Lanier spoke about the difficulty she experienced nursing her infant daughter. The author later discovered her daughter, like our daughter,  had a rare chromosome deletion.  Memories of my experience nursing Jessica rushed back in waves. I understood what it was like to nurse an infant with disabilities,  the frustration of needing-wanting to naturally nourish my firstborn child, and the inability to do so without intervention. What was I doing wrong?  Why wasn’t it working?

When Jessica was born, we didn’t know that she had a diagnosis.  She was our teeny first baby. She came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her peanut at the time.

Breastfeeding Jess

If you read my book, Raising Jess, you know that I had chickenpox when I delivered our firstborn, and, I could not hold or breastfeed Jessica during her first week of life. It was 1982, and, I pumped manually in anticipation of Nursing Jess. Did they have electric pumps in 1982? If so, nobody told me, so I pumped away, preparing for the day that I would nurse my peanut in person.

Jess came home a week after her birth. Yes, we had a baby nurse.  I was from Long Island, and, isn’t that what everyone did?  Apparently not in Buffalo, where folks wondered what was wrong with me?  The experienced baby caregiver, who seemed so OLD to me at the time, said Jess was the tiniest baby she ever cared for; kindly, the nurse did not say anything else that could alarm us about our future. And, for the record, I am probably way older than her now!

What Was Wrong With Me?

I was a card-carrying La Leche member when Jessica came home.  Determined to nurse and, grow this baby from a peanut to a Coconut, I sat down to breastfeed for the first time.  Jess struggled, and, I struggled; we weren’t a fit, and, it wasn’t working.  What was wrong with me and why couldn’t I naturally feed my own child?

I didn’t know that others struggled.  No internet tutorials to guide me.  The baby expert helped but to no avail. After many trials, Jess and I exhausted, we surrendered to the bottle of breast milk.

“Pump It Up”

I continued to pump every feeding, all day long and, into the evening.  I was Elsie the cow with my manual pump, creating bottles. 

Jessica’s suck was not strong enough; it would never happen during those first weeks.  I called LaLeche, and, they encouraged me to continue, so I did.

Every day and, every feeding for the first month, I would try to breastfeed, and, each time was a failure. I felt defeated.

When Jessica was three weeks old, somebody suggested a NUK pacifier.  Perhaps Jessica needs to build her oral muscles.  Ok, I’m game. I swapped Jessica’s standard pacifier for the new NUK. Jess loved her new “Passy,” Yet she still didn’t nurse.

Heart-to-Heart Conversation with my One-Month-Old Infant

And, so our days moved on with the manual pump, 6-8 times a day. We were closing in on Jessica’s one-month birthday, and, I sat her down and, looked Jess in the eyes and said, “Ok, this is it. If you don’t learn to nurse, I am going to need to stop pumping.” It was our first heart-to-heart conversation.  Perhaps I could have held on longer if there was a mechanical pump.  The manual pumps just didn’t recreate an infant’s suck, and, my milk supply was dwindling, as was my resolve for success.

I cradled my little peanut and, gently guided her to what I thought was my last time nursing, and, she LATCHED!  She NURSED!  It WORKED!  Was it my little speech? Nah! It was that beautiful NUK passy that strengthened her muscles. Ok, maybe my speech had some influence.

“Un-Support” Call

Jess and I were on a dedicated breastfeeding team for close to two years.  When I was ready to stop nursing, we knew that Jessica had significant developmental delays.  I called LaLeche and, asked them how to gently transition our nursing to bottles.  Unfortunately, the wrong support person answered the phone. “What! You are going to stop nursing a handicapped baby!” (1980s language) I replied that she was almost two.  The phone “un”-support made me feel like I was sending Jess off to fend for herself at two years of age.

I hung up and, figured out how to transition on my own. I have no ill will towards LaLeche; they helped me through a confusing time. I think if it was up to them, I would still be nursing – Not a good visual!

The First Step Towards Advocacy

I learned a lot from our nursing experience, and, I didn’t know at the time how much I would need the practice for advocacy and, the determination not to give up.  Every experience builds our foundation for the future. Even manual pumping and, NUK pacifiers and strong speeches to one-month-olds.