I barely got a few hours of sleep. I was still delusional from the pain killers and lack of sleep. When I woke up, for a second I didn’t know where I was… my hand instantly went on my belly (this is so natural for all pregnant women to do). That reminded me of yesterday, that it was not a dream and I was not pregnant anymore. My uterus was empty and so were my arms. Sunay wheeled me to NICU. The NICU can be an unforgiving place. So many little, strong yet fragile lives fighting it out with some assistance to flip Darwin’s theory upside down on its head! The one at St. Peter’s is a large hall filled with bays or pods in a horseshoe manner. At the center of it is the main nursing station. It is not one bit cozy in and in no way is it meant to usher privacy. The cacophony of incessant beeping sounds from all the equipment always keep you on guard. Screens need to be setup 360 degrees in order for the mother to breast feed. The pumping room is way too far down the main hall. Over the course of the next few days, I would be wheeled to the pumping room adjacent to the NICU, every 3 hours, to squeeze whatever colostrum I was producing and either myself, or Sunay would run back to Suvir’s bay so he could benefit from as much natural nourishment as possible (colostrum is very thick, comes in low quantity before milk and dries quickly).

I entered the NICU for the first time and I wobbled my way to my baby. He was covered in tubes, tape and wire, hooked up to machines. I couldn’t even pick him up or hold him. How was that even possible? How did we get here? Did he need comforting or was it me who needed that comfort? I wanted to scream and cry on top of my lungs but I couldn’t. I just wanted to hug him and cry…my whole body was so swollen and I couldn’t even stand to see him properly because my legs were still numb from the epidural. What kind of punishment was that? What did I deserve to get this? What did I do wrong in my pregnancy? The feeling of guilt took over me! We mothers really are hard on ourselves and I was and still am no different. I loved how he held my finger.

Instead of discussing who he looked like, whose smile did he have or if that head full of hair was from me  or Sunay; we were discussing and researching about everything he was hooked on. Fortunately, Sunay has a health care background and he could explain to me most of the terminology and some of the equipment. But I still needed to research on my own. I needed my own intuition to guide me. As this story unfolds, this intuition became more and more important. I was able to think out of the box. I was able to think like a mother. Let me tell you this right now! Never and I mean never doubt your intuition when it comes to being a parent. Follow your gut until you prove yourself wrong! ADVOCATE for your child and yourself relentlessly!

Anyways, Suvir was on CPAP machine, had an IV, an oral gastric feeding tube, sensors for oxygen, heart rate and temperature. What did all that even mean? In the simplest terms, CPAP was helping him keep his airway open so he could breathe. The IV line was his primary method of nutrition since it was unclear what went wrong and if putting something in his belly would cause more harm than good. However, he would not be able to bottle feed or breast feed because of it.

A bunch of scans tests were ordered… blood counts, chest X-rays for lung evaluation, urinalysis, echocardiogram. Everything came back clear, negative, normal! No issues with his stomach either. Apgar scores normal. His brain MRI came back normal. I was happy about everything coming back normal and naïve enough to ask the question, “well when can I take him home?” Naïve because, though everything was coming normal, Suvir’s actual clinical presentation was far from well! When he cried, there was a high pitched, crowing, vibrating breathing noise which we were told was known as STRIDOR. I researched it and found that it was a symptom of upper airway obstruction. There seemed to be some debate within the physician team that damage to the upper airway could have been caused by the two intubations. The team wondered if the stridor was present at birth. At this moment, Sunay recalled that he had recorded the delivery and immediate moments of birth. We watched the video and it was clear that Suvir had a little high pitched cry right at birth. It was clear as daylight to me that the stridor was NOT caused by intubation.

While I pumped, I researched! I researched the heck out of everything! Google was my best friend! I went through tons and tons of terminology and articles. Articles mostly about stridor. I found a recurring connection between the larynx, vocal cords, trachea and stridor. I came across a blog written by a Mom which laid the foundation to understanding Suvir’s symptoms. Needless to say that today, I have come full circle and writing a blog of my own in hopes that perhaps I can impact a complete stranger’s life in the same way mine was. And the beauty of it would be that I wouldn’t even know it!

Anyways, what was very clear to me is that we needed an ENT to examine Suvir. He had gone from being on CPAP first, to now BiPAP, then back to CPAP. 24 hours had passed since birth, it was Saturday evening and I was not receiving any answers from the medical team. I knew that the only way to find the answers was to get an ENT and I started heavily advocating for one to be called. I feared that Suvir’s airway was not secure and he would need to be reintubated. I point blank asked the director of neonatology if there was something wrong with my son’s vocal cords. His exact response, “you have been doing some research, haven’t you?”. I soon found out that St. Peter’s did not have a pediatric ENT on staff. I was told by the director of neonatology that he was doing everything possible to get a consult before Monday but it wasn’t happening and that we had found “the one chink in their armor.”

It was at this point that I was introduced to the hospital “weekend mentality”. My mind was blown about this approach and I would encounter this mentality over and over again! Furthermore, to add to my frustration, the attending physician felt that there was nothing wrong with Suvir and that it was a “clear case” of laryngealmalacia secondary to intubation which we had already ruled out earlier. I was told by this physician that the ENT would not come because Suvir was “stable” aka not critical. I was appalled! Are you waiting for him to code again?! Do you want him intubated again and then will the ENT come?!

Down the road, a few blocks away, Robert Wood Johnson (RWJ) University Hospital definitely had an ENT on their staff. But they were not affiliated with St. Peter’s. So its not like they can just hop on over. (Internal scream moment!). I felt like pulling a Meryl Streep moment from the movie “…First Do No Harm” where I would take Suvir and flee because he wasn’t getting the help he needed. But this was real life, so my husband and I, started brainstorming a possible transfer. Hours passed like this. Just waiting…I held Suvir as much as I could. And we took pictures…lots of them!

Sunday came along and the day of my discharge was here. I filled out the form for Suvir’s birth certificate. We had shortlisted many names and it was on this day we decided on the name Suvir because of its meaning and connection with Rihaan. Both Rihaan and Suvir are used as names for the Hindu God Shiva. The “vir” in Suvir also means brave, fighter. It fit him perfectly after what the little guy had already been through during his short time in this world.

As we wrapped up packing, my heart got heavy again. I was going to go home empty handed. No welcome banners or balloons for me or the baby! We spent most of the day in the NICU, continuing to advocate for an ENT. We left the hospital right before midnight and came home to pump, so I turned on Suvir’s web camera next to me. He was inconsolable that night and I called them to please hold him or comfort him. I found out he got a dose of Fentanyl, a potent opioid analgesic that is used in newborns to calm them down and put them to sleep. My sadness grew into anger and I wanted to break everything around me.

By Monday morning rounds, Suvir’s status was close to critical. He was practically running a marathon just trying to sustain his breathing. It was decided that he would be reintubated for the third time! My fears came true! I was sobbing and angry and it was at this point that Sunay lost his usually comforting and visible coolness. Our anger had now become so palpable that suddenly, the ENT who could not show up for 3 days, showed up in minutes! A team gathered around Suvir’s bay. They extubated Suvir to perform an indirect laryngoscopy and in under 5 minutes a diagnosis of vocal cord paralysis was pronounced! And then Suvir was reintubated for a 4^th time!

FIVE minutes! THAT WAS IT! It took five minutes to perform a bedside procedure I was begging for almost 3 days! FIVE minutes! And then in the next 5 minutes, the ENT proceeded to tell us that our little baby boy will need a tracheostomy. He hadn’t spent more than 10 minutes with us, he didn’t know anything about us, he didn’t understand why Suvir had this condition, he hadn’t shown up for 3 days and now he wanted us to put our baby boy through a major surgical intervention and decide that in a day’s time if we wanted the procedure performed prior to the holiday weekend! We still did not know why the vocal cords were not working. We were told that the part of the brain (cranial nerves) which control the vocal cords did not seem to be affected as visible from the MRI. There was no chiari malformation which commonly causes vocal cord paralysis. So there was no explanation why the vocal cords did not function the way they were supposed to. We realized we needed a second opinion.

Soon, Sunay found himself on the phone with the office of a renowned ENT at CHOP. Suvir’s case piqued their interest and they agreed to start working on a transfer. Their NICU was full and the transfer would happen once a bed became available. It took 36 hours before CHOP obtained a bed and the sent transport to take Suvir in an ambulance 1.5 hours southwest to Philadelphia.

We watched as the CHOP transport team worked with St Peters nurses to secure Suvir into their incubator and get him hooked up to their system. It was a 2 hour process and then we were off! I thanked the NICU nurses. I am forever thankful for those exceptional humans. I cried at them, I screamed at them, and I laughed with them. They took great care of Suvir and even myself. I rode shotgun in the ambulance with Suvir and Sunay followed behind. It was now the evening of Wednesday June 28^th, five days after birth and instead of getting closer to home we were heading further away!