The hospital felt like a detention center. A detention center of the emotions I was trying to keep down, yet threatened to burst out in a display of fireworks. My mantra, “We belong together” was keeping the fuse unlit. On the other hand, the lack of a pump that had yet to be delivered, teased me with its flame.

On the day we should have gone home, I asked one of the nurses for the pump. She was a new nurse to us. She was friendly, she understood. I had spent some time talking to her that morning about Down syndrome. Pretending to her, telling her God did not make mistakes. Later that afternoon, when she realized the pump had not been delivered, she assured me she would make it her mission to find out why the milk machine was not in my room.

When she left, she forgot our hospital file. I picked it up. Medical jargon along with hand written notes covered the pages of the “observations” section. My heart beating fast, I began reading some of the lines written in black ink.

“Parents are aware baby has Down syndrome.”

“Mother was holding the baby”

“Father was holding baby”

“Mother says “we belong together” every time the electronic bracelets ring. It is cute.”

“Father is loving.”

“Mother  is loving.”

“Mother is concerned about feeding issues and requested a pump.”

“Mother changes diapers”

“Mother requested some information on Down syndrome.”

“No concerns”

I did not understand why these nurses kept a log on our emotional stability. I did not know if this was something they did for all babies, but to me, it felt as if they were watching our every move. All because my baby had Down syndrome, and Down syndrome was bad. They were just waiting for the moment of the fireworks. The moment I would break down and cry over my baby’s diagnosis. Yet, line after line, the log revealed a typical mother and her baby.

I had fooled them. They did not know that all I saw when I looked at Nichole was Down syndrome. They did not know that the fireworks were waiting just for the right time. Not at the hospital, not with strangers, and not with people that would not be a part of our lives. I had fooled them all.

When the friendly nurse returned, she carried with her a blue, sturdy, nursing pump along with the attachments and tiny bottles.

“Do you know how to use the pump?” she asked.

“Yes. Thank you!” I responded.

The nurse noticed the file, sitting on my bed. She grabbed it and said, “I should have taken this with me before.”

She did not make a big deal of it, but somehow, her comment made me think I was not supposed to read it. I settled down to pump, and in no time, I had 2 bottles full of milk.

Another nurse came into the room. She was there to take Nichole for another echo. This time, they would perform the echo in the nursery since they had the machine set up there. I sent Nichole with a bottle of milk. The simple act making me feel like I was doing something. Andy and I followed Nichole, who was wheeled around in her bassinet, all the way to the nursery.

A baby boy full of dark hair slept soundly next to Nichole. His small features and pink cheeks making him look angelic. He was beautiful.

“Your life will be great.”

The statement pulled me away from the baby boy. The nurse, performing the echo, smiled lovingly at Nichole. She looked up at Andy and me, bright smile still on her face.

“My brother has Down syndrome.” She continued, “And he is the best thing that could have happened to our family.”

“That is great” I responded shortly, “Is it okay if we actually wait back in the room for the echo to be done?”

“Sure” she said, “I will bring her right over as soon as we are done.”

Andy and I left the room. I took one last glance at the baby boy. He was so perfect. His face was perfect. He was beautiful. And it wasn’t fair. It wasn’t fair that my baby had Down syndrome, that she wasn’t perfect. It wasn’t fair my baby did not look like the other babies. It wasn’t fair that the nurse had a brother with Down syndrome and felt it was okay to tell us about him, as if we were a part of the same team, somehow. It wasn’t fair.

Very early the following morning, a nurse came in the room while I was using the restroom, waiting for the dreaded first bowel after birth. Andy slept, so she knocked on the door of the bathroom.

“Yes?” I asked annoyed. She could have waited for me to come out.

“I just wanted to tell you” the nurse said through the door, “That I will be taking your baby. We are doing some blood work, she is really sick.”

The situation was ridiculous. I was sitting on the toilet, and a nurse thought this was a good time to talk to me?

“Okay, can’t you just wait a second?”

“If you are going to be quick.” She responded.

To be quick? I wanted to smack her. I pictured my fist, hitting her nose, and making it bleed. “You can wait!” I firmly said.

I opened the door. “What do you mean my baby is sick?” I asked.

“We check for billirubin levels every day, and hers have been very elevated. We are considering having her go to the NICU.”

“Wait a second. How long has she had elevated numbers?”

“Well, since she was born!” she exclaimed.

“Then why is it that NOBODY has said anything about it until now! And you are telling me she might need to go to the NICU?”

I was going to lose it. Breathe Ellen, breathe!

“You must have not known what they were talking about” she explained.

“NO! No, no, no! I have been concerned about her eating since she was born and asking for a pump and nobody thought to tell me about the billirubin. Or thought maybe those 2 would be connected?”  

Breathe Ellen, breathe!

“Well I am sorry, but I do need to take her now so we can decide if you can go home today or not.”

I watched as she wheeled Nichole out of the room, and then went back to the bathroom. I sat once more on the closed toilet seat. Breathing deep, trembling. A sob, bursting out. Breathe Ellen! Another sob. BREATHE! But I couldn’t keep it down, I couldn’t do it anymore. My baby was broken and there was nothing I could do about it. I was helpless, and I felt so alone. I covered my face with my hands, and wept.

My sobs were loud enough that Andy woke up. He made his way to the bathroom and knocked on the door, “Honey, are you okay.”

I could not answer.

He tried the door, and it was open. He made his way to me and squatted in front of me.

“Honey, what’s wrong?” he asked.

Between sobs I replied, “A nurse just took Nichole. She says she is sick. I just want to go home.”

Later that afternoon, the pediatric cardiologist came into the room. He explained the echo showed one of the holes in Nichole’s heart had closed on its own, which was good news and we could go home. However, due to her billirubin levels, she would be under the care of a home-health nurse. Someone would come to our house every day and take blood to check Nichole’s numbers. She would also have to have a billi blanket for as long as necessary.

I thanked the doctor with tears in my eyes, eager to go home.

Our family posed for a picture as we left the hospital. We smiled. I was finally taking my baby home…my broken baby home. Broken, because she had Down syndrome.

***

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: Poor nursing, a broken heart, and Down syndrome.

Next post: In my mother’s arms.

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