After my sweet but brief introduction to my son, Noah was rushed to the NICU and the next couple hours were sort of a blur. At some point in the next couple of hours I was able to go up and visit Noah. My legs were still wobbly as the epidural wore off, but I insisted on walking. Visiting the NICU is quite an ordeal. I thought I knew how to wash my hands, but judging by the signs describing in detail how to wash your hands in 6 steps including an illustration, this was clearly not the case. Once properly sanitized, I walked past rows of isolettes containing tiny babies into the corner where Noah lay. He was surrounded by several doctors examining him. The head doctor, an older gentleman with a gruff voice but friendly demeanor, began to give us Noah’s status.
First the good: breathing fine on his own, loud cry, strong heartbeat
Then the bad: low weight, low body temperature, jaundice
And finally, the “markers”: a space between his first and second toe, a pinky that curled slightly inward, slanted eyes, epicanthal folds, low-set ears, low muscle tone.
“I honestly can’t tell,” the doctor said firmly. “Sometimes you can tell right away, but so far I only see soft markers for Down syndrome. We won’t know anything for sure until we do a karyotype. You did know that there was a possibility that your baby would have Down syndrome, right?”
I just stared at him speechless. “I guess,” I stammered. “The ultrasounds showed short femurs, but that was it. We really didn’t know…”
Cameron and I clasped hands as we looked at each other, trying to absorb all of this information and what it might mean.
“Do you have any questions” the doctor asked.
My mind struggled to piece together the snippets of information we knew into a coherent question, but I couldn’t do it. The doctor proceeded to tell us we would know for sure after we received the results of a blood test called a karyotype, which would show if Noah had 3 of the 21st chromosome instead of the typical 2.
Those 10 days that Noah was in the NICU were some of the hardest I have ever experienced. Anxiety, fear and sleeplessness pervaded both our days and nights. In hindsight, 10 days in the NICU really isn’t that long, but at the time it seemed like forever. The hardest part was the uncertainty.
What we knew
We knew that Noah was small (4 pounds, 3 ounces) and the doctors wanted to see him consistently gaining weight before he could go home. Despite being 5 weeks early, he had no trouble breathing on his own (likely thanks to the two painful steroid shots I’d been given while pregnant to help develop his lungs). He had difficulty regulating his body temperature so he had to remain in a warmed incubator and had several monitors checking his oxygen levels and heart rate. He needed to be treated with light therapy for jaundice for 24 to 48 hours. And he had some markers for Down syndrome.
What we didn’t know
We had no clue how long Noah would need to remain in the NICU, we’d been told anywhere from a couple days all the way to his due date, still 5 weeks away. We still didn’t have a good idea what had caused the IUGR and why my amniotic fluid had gotten so low. We didn’t know for sure if he had Down syndrome or any other condition.
The first 5 nights we stayed at the hospital. I had 2 nights in my postnatal room for recovery and then the NICU allows 3 nights in their “family rooms”. It was such a blessing to be near Noah and be there when the doctors would do their rounds. Rounds are such a strange thing. They would happen 3 times a day, around 7am, sometime mid-day and 10pm. You never knew exactly when they would be happening or which doctor you would see, but we always wanted to be there to ask questions and try to get answers. Rounds were not just doctors, but also nurses, residents, interns, specialists. Sometimes there would be about 10 people walking through the NICU together! They would go from baby to baby, spouting off stats. When they got to Noah we would hear:
Born at 35 weeks, IUGR, marginal cord insertion, soft markers for Trisomy 21, low birthweight, jaundice
The nice doctors would introduce themselves and ask if we had any questions. Our least favorites would state their facts hurriedly and make it clear that they didn’t have time for all of our questions. I had so many. How long will Noah be here? What is his release contingent upon? What other health concerns are there? What is the likelihood that he has Down syndrome, or some other genetic condition? If he does test positive, what other concerns are there? Will we have to stay longer? So many questions and so few answers. The uncertainty was killing me. I hate ambiguity. I’m a numbers person, I want a straight answer.
Our time in the NICU revolved around Noah’s feeding schedule. They had him on a 3 hour schedule, so he’d eat at 6am, 9am, noon and so on. The nurses were very regimented so we could always count on being there in time to feed him. When Noah was under the bili lights, he could only come out of his “warming hut” (as Cameron called it) during feedings for 30 minutes at a time. We wanted to be there for as many feedings as possible in order to hold him. At 5:45am we’d roll out of bed in our family room on the 3rd floor, still in our PJs, and head to the elevator to the NICU on the 6th floor. Cameron would feed Noah a bottle while I pumped and then I’d get to snuggle him until our 30 minutes were up. Sometimes the nurse wouldn’t notice how much time had passed and we’d get a little extra time with him. Looking back, those were some very precious moments. Just us and him, and the steady hum of the incubators and soft beeping of his monitors. Before he had the label, when he was just “our baby” not “our baby with Down syndrome”. After the 6am feeding, we would shower and then hit up the Starbucks in the lobby for breakfast and coffee. The 9am feeding would come soon and then it was nap time before the noon feeding. After that we’d head home to be with Landon, who was having a great time playing with my mom, his Ama. What a blessing to have my mom there during that time. She was able to stay with Landon at our house so that his routine could remain normal. We wanted to shield him as much as we could from the fear and anxiety we were feeling.
Landon came to visit his brother in the NICU and seemed to take everything in stride. Of course he was most interested in all the computer screens, flashing lights and cords hooked up to his little brother. He took it all in with wide eyes, but didn’t seem scared or upset at all. This is our first photo of all 4 of us:
After we’d maxed out our permitted nights in the NICU family rooms, we were back at home at night but still driving back and forth from the hospital several times a day. July was one of the few months during the year we could enjoy driving Cameron’s Jeep with the top down. We would head to the NICU after breakfast, usually stopping for coffee along the way. It was our little retreat, something that felt normal in the midst of chaos. When we arrived at the hospital, we would check in and follow the NICU protocol of sanitization before we could enter. Once clean, we’d make our way past rows of babies in isolettes, many even smaller than Noah. We would always scope out which nurse was on duty. Was it the friendly one who was positive and encouraging, ready to give us a rundown of how Noah’s night went? Was it the quiet one who didn’t say much to us, but held our baby with such love and tenderness? Or was it the young nurse fresh out of school trying to adjust to her night shifts with a Red Bull in hand?
Every time we arrived we would get Noah’s most recent stats: weight, temperature, how many milliliters (mLs) he’d eaten, what his bili level was (bilirubin is what they test in the blood to determine if babies have jaundice). At two days old Noah had to go under the blue “bili” lights, which is a type of light therapy used to treat jaundice.
On the days Noah wasn’t under the bili lights, we could pick him up and hold him as much as we wanted. We’d pass him back and forth, talking, reading, sometimes listening to music (quietly since we’d already gotten in trouble for being too loud). I was allowed to nurse him twice a day. The doctors were concerned he would burn more calories trying to nurse than he would be taking in. Being a preemie, coupled with his extra small size, made it difficult for him to maintain a strong suck and have the energy to eat. He sometimes had trouble “getting organized” as the nurses would call it, meaning he was still figuring out how to suck, swallow and breathe in a regular rhythm. He managed to take in enough milk from the bottle that he avoided being on a feeding tube, which we were extremely grateful for. I continued pumping every 3 hours to provide Noah with the milk he needed to grow strong a gain weight. They supplemented it with a high calorie formula Cameron deemed “muscle milk”. It became a bit of a competition (I know, surprising for Cameron) to see who could get Noah to take the most milk at a feeding. “You only got 10 mLs in him last night?” we’d tease. “I did 15 this morning.” After initially dropping down to 4 pounds 1 oz from his birth weight of 4 pounds 3 oz, he slowly began to increase at a steady rate, which got him closer and closer to being released from the hospital.
At that time we were primarily focused on getting his birth weight up, getting his jaundice under control and waiting for him to be able to maintain his body temperature. But in the back of our minds was the lingering fear of the karyotype results. I spent hours on Google, primarily on my phone while pumping, poring over baby forums, blogs and medical pages. I’d look at photos that showed typical characteristics of babies with Down syndrome and then study Noah’s face and body to see if any matched up. Did he have epicanthal folds? He so rarely had his eyes open those first few days that I couldn’t tell. He had smaller features than other babies, but then again he was 5 weeks early and only 4 pounds. Were his ears low set? Did his eyes slant upward? I hoped, I prayed that the blood test would come back normal. But then again, I knew. Everything seemed to add up to a Down syndrome diagnosis.