Nichole seemed to be doing things by the book when it came to nursing. So much so, that not even one nurse thought it would be a good idea to have a lactation consultant come, just in case. Just in case, because babies with Down syndrome tend to have low muscle tone, and sucking requires the muscles in the mouth to work properly.

Although I was no expert when it came to nursing, I sensed Nichole was not really nursing well. Her diapers were barely wet between feedings.

“I am concerned about Nichole’s wet diapers,” I said to a nurse shortly after lunch.

“Oh, what do you mean?” she asked sweetly.

“They are barely wet” I responded.

“Oh honey” she replied, “Babies are really small, so their diapers might not feel very wet.”

“The diaper feels almost dry between feedings,” I demanded.

“Don’t worry! She is doing fine!”

It bothered me that the nurse was not concerned like I was. More important, it bothered me she did not take me seriously, like I did not know what I was talking about. She should have been checking to make sure Nichole was eating well.

“I would like a pump so I can measure and see how much Nichole is really eating.” I finally said.

“We don’t just give pumps unless there is a real reason. Sometimes insurance will not cover some things unless there is a real need.”

“Do I seriously need to ask my husband to drive home so he can bring me my pump?”

“No, that will not be necessary.” The nurse assured me, “Your baby is eating just fine. I have seen her eat.”

“Well, at least I want the lactation consultant to come in and watch her eat. Just to make sure she is okay.”

Later that day, the loud and robust woman I had met 2 years before when Ellie was born walked in.  I knew her “technique” and I knew she was not shy or afraid to grab body parts. Impossible to forget someone that touches you in private places without asking.

We sat on the couch. Same furniture that became a bed to my husband at night. Her face, too close to my chest as she listened intently at Nichole’s sucking and swallowing.

“She is doing beautifully!” she announced vociferously, flailing her arms to accentuate her expression.

“Then why are her diapers so…dry?” I asked.

“Hmmm… that certainly should not be the case!” the concern in her expression seemed cartoonish, “She should be having full, wet, diapers.”

I felt relief. And suddenly, I found myself fond of this woman.

“Well, she is not. I was wondering if I could get a pump to track and make sure how much she is really eating.” I asked.

“Yes, I will make sure to send one to you.”

As we were talking, a team of nurses came into the room, wheeling a large machine.

“We are here to do an echo.” One of the nurses announced.

With that, the lactation consultant left and a nurse took Nichole from my arms. They placed her in her clear, plastic crib and stripped her down to her diaper. Her dry diaper. Nichole, tired from nursing, quickly fell asleep. Unaware of the warm gel on her body, and of the ultrasound machine that moved around her chest.

The pediatric cardiologist came in the room to go over the results of the echo-cardiogram.  The doctor was a man with soft dark eyes and a gentle disposition. His Indian accent pronounced, yet easy to understand.

He began by be-bopping what a normal heart sounded like.  Then he proceeded to be- bop to Nichole’s heart. A talent I found helpful in understanding what he was talking about. He said the echo had showed 2 different heart defects. A VSD (Ventricular Septal Defect) and an ASD (Atrial Septal Defect). Basically, Nichole had 2 holes in her heart. He reassured us that most babies are born with a VSD, and that they usually closed on its own. However, this was not always the case for babies with Down syndrome. Because of this, we would not be able to go home the following day. Instead, they would do another echo and watch for progress.

Her heart is broken, just like her. This is happening because she has Down syndrome. 

Down syndrome. Those words consumed my thoughts and my feelings. They robbed me from enjoying my newborn baby. When I looked into her face, I did not see Nichole, I saw Down syndrome. The holes in her heart were magnifying glasses announcing in bold letters…YOUR BABY HAS DOWN SYNDROME!

I knew I was not the only one who saw Down syndrome when looking at her.  My mother had seen it. Even my friend’s 6 year old had exclaimed with innocent delight “She looks just like Jennifer when she opens her eyes!” I knew that if a child could see it, so could everyone else. And I hated it. I hated that it was obvious, I hated that people could see that my baby was different. I hated that I saw her as different, that she was different. I hated that she had Down syndrome.

By the end of the day, I still had not received the promised pump. I felt sure my baby was not nursing successfully.  Sure that it was because of Down syndrome. I needed the pump. I needed to be successful at something, and making milk was the only thing that seemed promising. But there was no pump. I kept asking for the pump, and the answer was always the same. “I will bring it to you as soon as it gets here.”

I had a baby with a broken heart and a broken sucking reflex.

I don’t know if I can do this much longer.

I picked up Nichole from her bassinet, and our bracelets sang their song in their close proximity.

“We belong together,” I repeated, feigning a happy tone for my husband.

Do we really belong together?

I settled on the couch, time to nurse her once more. Time to worry she was not getting enough to eat. Time to be reminded that she had low muscle tone.

It is because of Down syndrome.

“We belong together,” I said once more.

Do we belong together? Because I don’t want to. I don’t want us to belong together.

“We belong together.” My mantra, willing it to the deep places of my heart. Desperate to make it be true.

Yet all I could think was that my baby had Down syndrome. My baby was not getting enough to eat, and she had a broken heart.

So I smiled while I stared at Nichole. Because I was pretending. Pretending that I was okay. Pretending to the nurses, to my husband. Even pretending to myself.

***

It is Down syndrome awareness month, so I am sharing our story of finding out our daughter had Down syndrome and the first few weeks of her life. If you missed my last post, make sure you read: Mom, your grandbaby has down syndrome.

Next post: My baby is broken.

If you just joined in, make sure to read the first post introducing you to this journey: The road less traveled.