I am The Proud Mother of Johnathan David

 “I am the proud mother of Johnathan David, J.D.” born April 4, 2019

I am not sure if I am ready to write our story but I keep seeing other people do it so I figure here goes nothing. I can always hit delete, revise it, come back to it, do what I need to do. This is draft number five.

This is supposed to be catharsis. As today marks his first birthday, we are filled with so many mixed emotions.
So who are we?

What is our family story?

I am the proud mother of Johnathan David Nagy (J.D.).

People always misspell his first name but what they don’t know is the significance of the “h”. Johnathan got his name from my father “John”, who had died several years prior. It was after my father died unexpectedly that we knew we wanted to be parents. It gave us something to hold onto, to hope for. However, our happy ending would not come for a long time.

Shortly after my father’s death, my mother also passed away within a year. The short answer to her cause of death is to say from a broken heart. However, she was a recent heart transplant patient with countless health problems.

During all of this world of death, we learned we could not conceive a child naturally and it was the beginning of a long journey with fertility medications and homeopathic treatments.

All we wanted was a baby, a healthy baby, a healthy family to call our own.

I turned to grad school, yoga, a group of strong fierce women, my oldest brother, and therapy to help me learn how to navigate all of the chaos. Meanwhile my husband turned to working out, eating healthy, and dabbling on numerous house projects. With each year we could not conceive we would invest in another pet. We are currently at three cats and two dogs to date.

After years of trying, and a failed trial of In Vitro Fertilization (IVF) we gave up for the millionth time. The month after IVF failed, I took a pregnancy test to be safe. I was ready to throw it out until my husband saw the plus sign. Could it be? Our dream baby, after four grueling years? All the ultrasounds and blood work confirmed it to be true but the whole time I was always waiting for the other shoe to drop.

Matt stood by me as we did all of the natural birth classes, read book after book and he watched me take every yoga class and suffered by my side through all the mourning sickness and heartburn. I worked on eliminating anything that might jeopardize this baby’s health. I wasn’t considered to be high risk but I was still cautious.

I even caved to deliver at the same hospital where my dad had died because they could provide me with an option to have a water birth in a tub. The maternity ward seemed like a world away from the small beeping room where I saw my father flat line before my very eyes.

April 2nd we went in for the routine anatomy scan. My doctor asked if we were "ready to have this baby?"
"Sure” we said happily.

“Good because you are going to have him today.”

“Uh, what, what do you mean?”

“He is showing that he is on the lower end of birth weight and your amniotic fluid is low.”
I remembered from my birthing classes to always ask the question “What are our other options?” I automatically asked.

“There are none,” she said.
What if we wait?” I asked.
“Then he will most likely have breathing problems... and struggle to live,” she said.

And just like that I was told I was having a baby and his induction was scheduled. He did not want to come though. After a 32 hour long induction Johnathan was finally here. He was perfect, except he kept making a slight hiccuping sound. The nurse took him off of me for some tests. I was exhausted and went to the other room for what I thought would be sleep but then my baby never came back after the tests.

I rushed out of my room “Where is my baby? Where is my baby?” I kept asking. The head nurse told me I had to decide what NICU to send him to, that he was having breathing problems and was not responding to the CPAP. I said “Rainbows downtown”. My husband asked me what he should do. He was conflicted about who to be with. I told him to go with Johnathan and just like that, the first thing I signed my name to anything with “mother” was the permission form for the ambulance.

Our Doula came to the hospital and taught me how to pump and express milk so he could have that “liquid gold” right away. My friend picked me up from the hospital that morning just freshly stitched and carried a colostrum in a vial to give to the hospital.

When I got there, the doctors told us he would not be there long and that he would be going to the step down unit the next day. We were told he just needed some extra oxygen but he kept needing more and more and he was screaming every time they would put the CPAP on him. Something was not right. I refused to leave my baby and slept on the NICU pullout bed.

Two days later we were eating when we came back to his room all of the sudden he was surrounded by a team of doctors in a dark “low sensory room”.

His initial diagnosis was Respiratory Distress Syndrome. This we were told was common for late term preemie males. In fact my friends who are nurses confirmed it and that the extra oxygen was very common amongst this demographic. A risk factor no one mentioned to us before the induction. Our son was now part of a statistic.

He was getting worse and needed permission for more tests, more sign offs on other things. We would later learn he had a pneumothorax, a bubble in his lung and would need a chest tube. He also could not breath at room level oxygen so he needed a ventilator. He was being given oxygen at 100% which was still not enough and they brought in nitric oxide. The overarching diagnosis was Pulmonary Hypertension with jaundice so he needed to be under a sun lamp. His room with only a couple of lines and machines quickly became filled with additional screens and monitors. Every few hours it seemed people were coming in for another procedure to run another line (a feeding tube, IV line, catheter, etc.).

I didn’t know it but the previous day would be the last day I would get to hold my baby for the next two weeks. They took stats on him every hour and we yearned to hear him cry, to hold him, to do what normal parents do when they first get a newborn but that was not in the cards for us. Our lives were anything but normal.

Never in our lives had we felt so much pain. I had flashbacks from my mother being in and out of the hospital. The sounds of beeping monitors had just begun to fade and I thought my days of living at the hospital waiting for someone to live were over. Now I was doing it with my very own baby. Every time we heard a code in the hospital our bodies would tense up.

Working in the field of counseling, I knew I needed more support. I called my therapist who gave me a mantra that is still with me to this day: “I am the proud mother of Johnathan David Nagy”. She did this because somehow I told her I felt less of a mother and that I had let my baby down. I then would go onto to add when ever I saw him:

“this is a small moment in a very long, happy and healthy life you are going to have”. I would say this as I would put my hand on a part of his frail body that was not covered in tubes and wires.

One of my other “rituals” was saying a prayer that my friend and her husband gave me that his parents would say when he was in the NICU. I would recite it right before I left him.

The nurse would give me a “mommy cloth” and him a “baby cloth” to wear. It was a cloth I would wear on my person so when I would see him he would learn my smell. His cloth would usually be stuck under a part of his body or over his eyes so I could smell his scent.

I don’t know how or when but it became our new normal. I refused to leave him. They put me into the maternity ward as a boarder so I could have my own shower and allowed me to pump away from the sounding beeps and bustle of the NICU. Pumping became a way for me feeling like I was doing something in action for my baby. Apparently my milk was something they could use to swab out of his mouth and were giving my milk through the feeding tube. I so badly wanted to nurse directly, and had learned to cross off a lot of what was on my list about what I thought motherhood in the early stages would look like. Priorities took on a whole other meaning.

My husband on the other hand fielded the phone calls to family and friends, and even did some work from home to keep his mind focused. He would go home in between and spend time with our pets, do laundry and bring me back comfort items. He was on double duty it seemed for both worlds, and he made sure I ate and slept. How he ever kept it together so well I will never know. We held on tight to each other and refused to let go, we were a team and vowed to make every decision together and back the other person with whatever they needed to help our baby.

In the windowless room of the NICU, our days would often go like this:
I would wake up, pump, order breakfast, Matt would go down to the NICU to check in on him.
After breakfast we would head down for the team of doctor’s rounds, and we would be giving an update from every doctor who was working on him to determine the course of treatment for the day.
After the doctors gave the report, I would pump again. Matt would call his dad and I would check in with my oldest brother.
Pump, eat lunch, see J.D. repeat. Daily we would go for walks just to take in the fresh air to remind us what season it was or what hour. Time stands still in the NICU and fresh air was needed from the monolithic feeling of the hospital rooms.
Matt would go home some time in the late afternoon, do chores around the house and bring us back fresh clothes.
Usually 1-2 family members or friends would visit in the evening, bring us food or just sit with us in encouragement.

I started reading J.D. poems and prayers during my hourly visits, kissing his forehead, trying to imagine him healthy, strong, even tried to imagine what his cry would sound like. Matt would discuss his political Twitter feed and make jokes with him.

Then one day it all changed. They said they said the Nitric Oxide was working, that they could begin the weaning process. Suddenly hope became attainable. Within a week he was weaned from everything.

They say your baby’s first breath is the most powerful sight but let me tell you, seeing Johnathan breathe for the first time without a machine was truly a miraculous and surreal feeling.

Within a day, his pneumo dissipated and we graduated to the step down unit. Last hurdle was getting him to eat and he just wanted to sleep. He was so tired from all of that “pushing to survive” work. He just wanted to snuggle in our arms. When I got to hold him for the first time with even just one tube it felt like a void was filled that I didn't even know how big it was until I felt his heartbeat up against my chest.

This was it, this is what all of the love songs were written about.

I am the proud mother of Johnathan David Nagy. Always.

Johnathan is now a healthy gregarious child. He loves playing with all five of his pets and of course getting into everything. We are incredibly grateful to our families, friends, and the team of doctors and nurses who never gave up on our little boy and who continue to support our journey as a family.

Beautifully written by Kate Nagy