Our little Suvir passed away 3 years ago today. So many life events have happened between then and now because life goes on but we remember our little boy almost everyday and talk about him often. The process of grieving takes its due course and there are things we do to try to help ourselves through it.

Earlier this year, in June, Suvir would have turned 4 years old. Ever since he passed, each year on his birthday we have been giving back to the people and organizations that supported us through his life journey. Doing so has brought us closure year after year and helped in the grieving process. This year we were not able to do that on his birthday so instead we are picking up where we left off today. This year we made a donation to the Children’s Hospital of Philadelphia (CHOP). Specifically, we donated to one of the NICU funds there.

Through Suvir’s blog (suvirstory.com), I have tried to give snippets of what our life at CHOP was like and what CHOP means for us. CHOP is a charitable, nonprofit hospital devoted exclusively to pediatric medicine. It’s an oasis of its own where life comes to a standstill for many children and parents. Suvir was there in the NICU for almost 3 months during which life came to a standstill for us. We were pulled apart from Rihaan until social workers at CHOP got us into the Ronald McDonald House; we spent on gas, tolls and meals while driving back and forth between NJ and Philly without a full income stream as parental leave soon turned into a medical leave of absence. It all started adding up quickly. We became disconnected socially and isolated from what was going on anywhere else. We had only one routine and that was the life of a NICU parent. We would drive back from Jersey well past midnight only to sleep in the parents’ room in the NICU. CHOP had a break room for parents serviced with coffee and some snacks which were complimentary. That was clutch because it helped save your money, the coffee felt so good and it got you going to be present and attentive for early morning rounds. CHOP offered parents meal coupons, parking coupons and in some instances even travel funds if a family lived far away and needed help to pay for their flight to and from home. No matter where you were in the NICU, you would have access to a breast pump and pumping supplies. We were truly awed by the support and service we received in the NICU during Suvir’s stay there. CHOP’s NICU Social Work Fund supports many of these initiatives so this year we chose  to donate to this fund.

If you would like to follow up our donation with one of your own, firstly thank you very much! The way to do so is by visiting https://www.chop.edu/giving. You can donate an amount that is comfortable for you and if you like you can choose the option to make the donation “in memory of” Suvir Shah. We donated by selecting “a specific area of the hospital” option in the drop down asking what you would like your donation to support. In the free textbox you can type in “NICU Social Work Fund”. The NICU Social Work supports things like stocking the parents room with amenities, purchasing baby gear for parents in need, providing meals to parents who can’t afford lunch every day from the hospital. Thank you for reading!

Suvir’s Song of Love

On June 23rd 2017, our little Suvir was born. Today, he would have turned 3 years old. Happy birthday my dear Angel!

Each year on his birthday, we attempt to do our part by helping organizations that helped us tremendously during our time of need. This has been one way for us to not only celebrate his birthday but also his life. We are also fortunate and grateful to be surrounded by friends and family who have been part of previous celebrations and continue to support us in doing so. And still more people have been asking how they can help. So I thought that this year, in Suvir’s memory, I will open this celebration up to a larger group.

One of the things that made Suvir smile was music. He loved all kinds of tunes…from nursery rhymes to pop music. So when we heard of an organization called Songs of Love Foundation, we thought it would be a nice touch to have a song created just for him.

The Songs of Love Foundation is a nonprofit organization that creates free, personalized, original songs to uplift children and teens currently facing tough medical, physical or emotional challenges. Each “song of love” is professionally produced with lyrics containing the child’s name and references to all of his or her favorite activities, things and people.

The immediate needs of children who go through serious medical and physical challenges are often overlooked. For instance, imagine how special an eight year old child undergoing chemotherapy and battling for his or her life would feel when they hear a song made just for them! It’s empowering and uplifting to have a complete stranger pause their life and dedicate some time to not just think of you but write a song and sing it for you.

Suvir’s song of love is attached to this post. Songs of Love acquired details from us about Suvir like his favorite rhyme (twinkle twinkle little star), his favorite thing to do (bath time) and his brother’s name which the song writer creatively placed into the lyrics. They put genuine thought and care into their compositions and a beautiful song as a result of this effort gets delivered to the child without any cost to the parent or caregiver.

While Suvir is no longer around to enjoy it, we certainly cherish it and find strength through it. This year, we want to do the same for other children and their families. It costs $250 to produce one original Song of Love. It is delivered in a personalized box, complete with a lyric booklet and the child’s name on it. So, in honor of Suvir’s 3rd birthday, we are looking to raise funds to produce unique, personalized songs for 10 children with a goal of raising $2500. The following link provides us means to “sponsor a child” or in this case ten.
https://www.songsoflove.org/make-a-donation/

(see option 2)

We hope you’re able to assist us in meeting this goal. If so, please forward your contribution to my Venmo account @Neesha85. The donation will be made in memory of Suvir. Once Songs of Love completes each song, they will send a copy to me and I will be happy to share those details with you if you like.

Thank you!

One year ago, on September 26, 2018, my sweet little Suvir took his last breath. He passed away in Sunay’s arms. In the last few days before Suvir’s passing, I often felt that his soul had already left his body. Even so, there was something distinct and different about the last breath that he took and in that moment I just knew… As I write this, tears uncontrollably rolling down… the memory of that last breath stirring, I have often wondered if that was the breath when his soul finally departed and if he did I hope he stayed around and looked down to find me looking up.

It was difficult for me to start this blog when Suvir was alive and it is extremely difficult for me to write this blog after his passing. Each keystroke is met with not just tears but memories of so much that has happened during his life and now even after his passing. All of which makes me painfully aware that my little baby boy is just a memory that has passed and is passing instead of memories that should have been making. I can’t bear this thought when I write due to which I don’t write and so I have not yet touched on some of the most important parts of the SuvirStory like the tracheostomy, gastrostomy and most importantly FOXG1. What you need to know for this post is that Suvir suffered from a rare neurodevelopmental disorder called FOXG1 which caused him to be severely delayed. It was a diagnosis we found out sometime after we were back home from CHOP.

Anyways, I mention this in this post, because on the day of his passing we made a decision that his life wouldn’t be defined by just suffering he experienced or the smiles and joy he provided us. It had to and needed to mean for something more. We made a decision to donate his brain to an organization committed to understanding the FOXG1 syndrome in hopes that this would enable a path to better treatment and therapies for the 400 patients currently affected and living with it. We also donated his heart valves which have already matched and have been transplanted successfully and making a difference in the lives of the two children who received them so they can continue growing and making the memories that our family stopped making a year ago on this day. It brings me peace and comfort to know that a part of my baby boy’s strong heart is helping someone else’s and through it a little part of him lives on in this world.

It has been a long year without Suvir around. It has certainly been very difficult with even more grief at times when you thought that wasn’t possible. There have also been some truly happy moments as well.

I am grateful for the support I have received from friends, family, acquaintances and even complete strangers. While I do smile, joke and have fun with people around, my greatest strength to fight off deep sadness and anger has been Rihaan! But when he’s tucked in at night, my mind starts thinking. Sleep has been hard to come by…tears too easy to come by. But my grief is healthy and perhaps I have begun to heal a bit. Over this past year, I have heard many times from folks now to give it time…and they think that they mean time will make it better but I have realized that time will eventually make your grief a part of you. The tears may never go away but at least slowly I am learning and accepting to allow them to flow yet sometimes smiling harmoniously through them. After all, I am Suvir’s mother because that was very often what he did as well.

Everytime I look up at the clear night sky

I wonder which twinkling star are you

Then I remember your smile

And I know that the brightest one is you.

I was blessed to be your parent

But wishing you long life is not a blessing I can give you

I wish you all the happiness in your world

Cuz that is all I can do.

Hope you’re partying it up in heaven my angel.

Happy 2nd birthday Suvir! We miss you so so much… especially your smiles, curls, cuddles, kissing you non-stop all the time!

On September 26th our dearest little Suvir passed away and is now an angel watching over our family. I have tried my best to avoid writing this, thinking about this for the past 2 months but it doesn’t seem to get any easier. With lots of courage, I want to continue telling his story, even when he has left us mid way. Suvir was just 15 months old but he left behind many incredible memories. He also left behind a huge void that will remain forever. I know already that the grief of losing him is a burden Sunay and I will carry in our hearts for the rest of our lives. Suvir suffered a lot,  but he smiled right through it all and that was a testament of the strength in the heart of my little boy. This strength is his legacy and my inspiration.

The moment Suvir entered my life, he changed it forever! I grieved everyday for 17 months for lost opportunities many of which I have already detailed in previous posts and some of which I have yet to speak of. Thought it might get easier as time passes but it’s actually getting harder. How many times am I supposed to change my “new normal”? The overwhelming sadness creeps upon us unexpectedly and how it just flashes with memories and pain. Many days I wonder if this is reality? Death is inevitable, but a child’s death for a parent is just not fair! I read this somewhere…

A wife who loses a husband is called a widow.
A husband who loses a wife is called a widower.
A child who loses his parents is called an orphan.
There is no word for a parent who loses a child.
That’s how awful the loss is.
– Jay Neugeboren – An Orphan’s Tale – 1976

With Suvir’s passing I will now grieve for the fact that I can no longer look at his beautiful face and gorgeous eyes and I can no longer pick him up and play with him and I can no longer feel his soft hair in my face and I can no longer smell him on my clothes like I once could and I can no longer see that love for me in his eyes and his face light up at the sight of me..his mother. And now he has closed his eyes forever. I will no longer have 2 boys in my arms, a family of 4! At the age of 33 everyone around me is adding a family member, where as I went backwards, how is this fair? I question this everyday. My Suvir will be my eternal grief. I will have to live this life while missing him everyday…a part of me no matter how happy will always always have that shard of grief of not knowing where my Suvir is. That is somehow my debt to pay.

I still truly hope and pray that wherever he is, he is happy and more importantly free and at peace. Sometimes, what gets me through the day is a belief that someday I will see him again. That someday I will be reunited with him and be able to live a lifetime with him that I could not in this life. And in that distant alternate future, I hope that I can have the honor of being his mother again. That…will be my salvation and the only way in which SuvirStory can come full circle.

*Below are some of the last pics we have of Suvir where he is smiling and interacting and doing the thing he loved to do… just simply look at me!

Sunay and I wrote a little poem for Suvir that I am sharing here. Its titled Suvperhero.

Exactly a week after Suvir was extubated, Sunay and I had to make the heart wrenching decision to intubate him for the 6th time! AGAIN, I was taken on this emotional rollercoaster ride..the high of almost going home…to not knowing what suddenly went wrong..to now intubation. Intubation also meant no bottle feeding and trying to get IV access again..so more pricks for my little guy! More heavy meds. Now he was also on reflux meds. He was getting older so there was more awake time, more fighting the endotracheal (ET) tube, more agitation, more sedation as a result. Such potent meds..for such a tiny guy. And despite all this, there were still no answers! We needed to understand why Suvir started refluxing and vomiting suddenly. Was this actually reflux or was he working too hard to breathe which caused him to reflux. When respiration is compromised and the lungs are working too hard, the contents of the stomach start filling the negative pressure in the chest cavity by rising up and thus the patient starts throwing up (imagine running on full belly, you would get sick and throw up). It was like the chicken and the egg thing. Which came first?! My instinct told me that this was reflux. I asked for a GI consult…didn’t get it because everyone disagreed with me. Suvir still kept spitting up while intubated. He had a secure airway now and that supported the reflux theory. So now, he went to radiology to have a naso-jejunal (NJ) tube placed for feeds straight into his intestines to see if he would stop throwing up if we kept his stomach empty. My little guy was even going to be deprived of having a full belly. A mother’s worst defeat!

The nurses were in love with Suvir and yet feared his temper! His big eyes, long lashes, head full of hair were enough to make you fall head over heels for him. Then, at some point they would see how strong his arms and legs were when they upset him. The nurse would tape and retape the ET tube and the NJ tube over and over again in fear that he would yank them out! Even the smallest, and I mean the smallest bit of a dirty diaper was enough to set him off! Once he started crying it was tough to console him, especially since it was not so easy to pick him up anymore again. I feared that in my absence, he would end up receiving a sedative if he couldn’t be consoled. Sunay and I realized that we were going to be at CHOP for some more time to come.

Until now I was in disbelief that we would be here for long. I refused to bring a lot of Suvir’s clothes or toys to the hospital for that reason because I always felt that we would be going home soon. I had turned down the social worker’s suggestion that we should look into staying at the Philadelphia Ronald McDonald House (PRMH) instead of the parent rooms. More on PRMH later. But now, I finally accepted that we need to have a proper “home away from home”. . we got his toys, clothes even his Mamaroo. We would try to be close to Suvir and at the same time have a proper bed to sleep on, fresh healthy, cooked food to eat and most importantly…get Rihaan to come stay with us and be together as a family of four!

Suvir remained intubated for a week and was now receiving feeds directly into his intestine. Another extubation attempt began… This time we knew what to expect. We would closely monitor for any signs of respiratory distress and increased vomiting. Those early signs would be enough for us to know that he would fail the second extubation attempt. The good thing about knowing what to expect is that you can make some plans around it! Based on the previous attempt we knew that we had atleast 2 days worth of time if not more where Suvir would be fine. So we decided to introduce Rihaan to his little brother in that time! Suvir would have a ton of tape on his face but atleast he won’t be intubated.

Rihaan walked into that NICU like a boss! He won over nurses as he strolled in looking every bit the part of his “Super Cool Big Bro” tee; balloon in hand, introducing himself to everyone. He turned the corner and saw me in the rocking chair holding a sleeping Suvir and he paused for a few moments like a realization had just dawned upon him. He exclaimed..baby Suvir! and in the next seconds, in classic big brother-esque fashion he attempted to wake his brother up. But he was so gentle with his little brother as he called on Suvir, “wake up baby Suvir” while rubbing his forehead.

I was so happy that they finally met. Even if it was in this manner! I still long for that proper moment of introduction between my two boys that was taken away from me! With all the tubes and IV hanging off Suvir, Rihaan couldn’t hold him. That simplest of joys to watch your older child hold his brother in his lap so you can ogle and take tons of pics and capture it in your heart forever, that so many parents take for granted, was never mine to have I guess..it’s a difficult thought to overcome but I stayed positive and powered past it. Hopefully they would be inseparable after all this was over.

I did everything I could to give Suvir the best even in this setting. CHOP let me bring in a photographer that I had found who used to be a nurse in the NICU at CHOP many years ago before she found her passion for photography. She worked with the spacious yet limited amount of space of Suvir’s bay, inadequate lighting of the NICU, Suvir’s NJ tube, a slightly uncooperative Rihaan, and obtained some fabulous memories that are pure treasure to us! I still can’t get my head around what an amazing job she did here to let us have that one pic of his newborn photoshoot without a tape on his face. This one is a true gem!

I am so happy that I had opportunity to do this photoshoot because a day later, Suvir started re-exhibiting the nose flaring, retractions, vomiting (despite NJ tube). These warning signs were a clear indicator that he would fail this second extubation attempt as well. So we intervened early this time and Suvir was reintubed for the 7th time!

Whatever small hopes we had remaining of avoiding a tracheostomy had now been crushed! Honestly, there wasn’t much hope at all after the first failed extubation attempt but we had prayed for a miracle anyways. The wait to go home just got that much longer. After the tracheostomy, Suvir would have a long recovery period and Sunay and I would need to be trained as caregivers. More on this later. These two factors together would determine the remaining length of our stay at CHOP which could be anywhere from 8 to 10 weeks! Suvir was going to be a month old at the end of that week and yet there was still no end in sight.

And what about him? How much more was this little life going to endure? WHY was he enduring so much? After all, he was an innocent child who just entered the world and this is how the world welcomed him! SEVEN intubations! So many IV lines, 2 visits to the OR due to which his feed was stopped so many times for hours. Use of potent medications so early in life! What were we doing to him? Were we making the right decisions? I wanted to take away all his pain onto myself. I wanted to somehow take his spot and I felt that it should be me who should be enduring this and not him. He was just a part of me not too long ago. My flesh and blood. And now that he was physically not a part of me, he was going through so much! I felt like I was responsible for this! If only it could be me… if only..

And after all this we were still searching for answers for root cause of the vocal cord dysfunction. We knew the line of treatment now! That question had been answered and there was no doubt that a tracheostomy was needed. But the why which we didn’t understand was scary! Either way, the need to be together as a family in Philadelphia was that much more real! Enter…the Philadelphia Ronald McDonald House.

The Children’s Hospital of Philadelphia (CHOP) is a world of its own. It is a state of the art children’s hospital and handles a lot of incredibly complex pediatric medical cases. If you have a sick child, especially one with a diagnosis that may present a challenge, CHOP is the place to be! Yet you don’t want to run into anyone you know at CHOP for the same exact reason! It is such an enigma. You tell anyone the word CHOP, means it’s got to be serious and something big.

We arrived at CHOP on the evening of June 28^th, 2017. When transport brought Suvir into his bay at CHOP, an army of physicians and nurses was already waiting by his new bedside. We felt like rockstars in a weird way. We were huddled around by these medical professionals who were all very interested in knowing Suvir’s history. They made us feel very comfortable by trusting what we had to tell them. For the first time, Sunay and I felt like our voice and opinion mattered. They had a parent’s room ready for us to crash in for the night not too far from Suvir. Since they see families from all over the country and overseas, the main hospital building offers daily parent’s rooms that one can sign up for single overnight stays and then vacate those rooms the next morning. I glanced around at the NICU. It was wonderfully setup and extremely cozy. Each bay was spacious with room for one parent to sleep by the bedside overnight if they wanted to. A breast pump was always available at the bay so you could pump right next to your baby. We were far away from home but our basic needs for the first night were already taken care of.

We settled in and facetimed Rihaan. I missed him so much! I was so far away from him! I couldn’t bring him in the parents room but the NICU at CHOP welcomed siblings of all ages. Everything was happening so fast! Atleast now, Rihaan could visit his little bro at CHOP whenever that moment would come and the time would be right. I tried to hide the tears rolling down my face and said goodnight to him. Soon, the renowned ENT Dr Jacobs, who was the reason to transfer Suvir to CHOP, came over in the wee hours of the night and introduced himself to us. His presence and calmness was reassuring and we knew in our hearts we were in good hands.

Friday, June 30^th, would be a very important day. Suvir was taken into the operating room, extubated, and Dr. Jacobs and his team performed a bronchoscopy and a microlaryngoscopy under anesthesia. He found that Suvir did NOT have vocal cord paralysis. Infact, Suvir’s vocal cords did have some movement but that movement was abnormal or inverse. In medical terms, Suvir had paradoxical vocal cords. Instead of the vocal cords opening up and allowing air to enter the trachea, Suvir’s vocal cords would from time to time do the opposite. They would be open and suddenly, wham! They would shut down! Leaving him gasping for air. In simpler terms, Suvir had “floppy” vocal cords. This explains why he would “desat” (lose oxygen) especially when he would cry or get agitated.

Suvir was intubated for a 5th time (in OR after his scope). He was one week old and was intubated 5 times!! The only upside to intubation is that you know your child will have a secure airway. That he will have oxygen and he will survive. One week old, still intubated and no end in sight for the simple act of breathing which is something we take for granted every single day. We were informed that some people go their entire lives and think that they have asthma, but in fact have mild vocal cord dysfunction. Dr. Jacobs said that if the vocal cords were to regenerate and heal themselves, as they can, they would come back realistically around 2-3 years of age. He wanted to focus on decreasing swelling in his throat and reassess him the following week. He wanted Suvir to grow and his airway to get bigger. Another week?! We would be here for another week? I kept hoping and praying that he would be out of here and everything would be back to normal.

Meanwhile, many more tests were performed including an EEG. I took the below picture of the EEG being performed. There was sticky gel all over Suvir’s scalp and a bundle of intertwined wires came off his skull! Every time I look at these wires, all jumbled together, I find it ironical that in a weird way they represent my life. All convoluted and twisted. The path to the end unknown with no light at the end of the tunnel!

Apart from the EEG, many needles went in and out of Suvir’s body to keep changing the IV port (veins collapse fast around an IV site in a small child). Every time he was pricked, it was as if I could feel the pain myself!

The weekend came around. Even at CHOP, weekend mentality is “a thing”. I decided to go home for a night to be with Rihaan and to refresh our clothes and food. I cried so much that I had to leave Suvir in the hospital so far away from home. My post-partum body was breaking and aching. I was pumping in the car on the ride to and from the hospital so I could spend more time with both my kids (especially Rihaan) instead of being stuck to the pump. I could have taken more care I should have, but I couldn’t see anything beyond my children at that time. I hadn’t comprehended what being a mom of 2 was like and I thought I was already picking my one child over the other.  I was worried before delivery how Rihaan would do without his mom and dad for 2 nights and here it had been 8 days and nights. I was supposed to focus on Rihaan more as per the advice I had mentioned about in an earlier post. Instead, I didn’t have much focus on him at all. But Rihaan was and is a trooper. He was extremely mature for his age and still is! But even he would have his weakest moments when we would come home for a half a day or one night and then leave again. He would cry so much! He would scream, yell and beg us not to go. He would realize at that time how much he had missed us while we were gone. He was so confused why suddenly we had disappeared from his life. We had to drive away watching him like that. Sunay and I both broke down each and every time and asked what kind of test is God was putting us through?! We cried when we left Suvir at the hospital and we cried when we left Rihaan back home!

Monday, July 3rd 2017, was a big day! Suvir had been prepped with steriods over the weekend to attempt an extubation. Dr Munson, the chief of neonatology at CHOP, wanted to see how Suvir would do. Extubation is always the hardest. As resilient as children are, the first 24/48 hours after extubation takes a serious toll on their body. Failing to extubate is defined as the inability to sustain spontaneous breathing after the removal of the artificial airway. You know, that thing I told you we all take for granted?

Suvir was extubated and thankfully, he sustained! This was a HUGE step forward! Dr Munson even had the nurses take out his nasogastric (NG) tube temporarily so I could finally see my baby without anything on his face! This was the first time after birth I saw his face! No tape on his face either! Just my Suvir! For the first time in 10 days I smiled!

Sunay had yet to hold him. Finally, he held Suvir after 10 days!! Sunay’s birthday is on July 4th and he was ecstatic for this wonderful pre birthday gift…to be finally able to hold his son! Amazing how happy you become when your expectations have been set so low that holding your child suddenly means the world to us!

However, Suvir continued to have stridor and made the loudest little squeaks, almost like a little hiccup, each time he took a breath. As caution, a little CPAP mask was put on his face. I didn’t know which was worse for Suvir…a tube down his throat or that ugly thing on his nose! It was no surprise he hated that thing so much he threw a big fit!

So, the ugly nose mask was swapped out for a nasal cannula. He was so fiesty, he would pull our everything from his face and hands, so they had to double tape everything.  He still looked angry but he knew that this was the best we could do for him at the moment! HAHA..he looked like a little angry doll!

Suvir was doing fabulous! Dr. Munson and team were impressed. He was tolerating my milk well and we were already working with a feeding therapist to introduce our little guy to the bottle and help him practice his suck..swallow..breathe! It was Wednesday, July 5th and Suvir was doing super on 1/4 Liter oxygen (the lowest oxygen setting you can have..its like practically being on room air). We were told that on this setting, our little guy could go home with nothing more than an oxygen tank! All he had to do was show us that he could tolerate incremental amount of bottle feeding without aspirating the feed.

We were at the hospital every single day. I spent every waking moment by his cribside! The only ones I spent to myself were the ones I woke up for to pump in the middle of the night in those parent rooms. Sleeping on those beds (sofabeds) was now taking a toll on our backs, especially mine! The constant sound of NICU alarms was always going off in my head even at home. All this time, we would have no time eating, taking shower, or talking to anyone else. We had no idea what was going on in the real world. This had become our world. We were consumed by it!

On Friday night we went home and decided to bring Rihaan the next day, to meet his brother. We would take Rihaan to a museum in Phill and introduce the two boys to each other and come back home for the night. But I found out that Suvir did not have a good night. He had thrown up a few times. So we improvised. Sunay, my dad and Rihaan when to the touch and feel museum after dropping my mom, myself and my breast milk at CHOP. I go in an found out that Suvir had a serious decline in his respiration. He was retracting (pulling air in the chest at the ribs, breastbone, collarbone), flaring nostrils (widening nostrils to get in as much air as possible) and dropping oxygen levels consistently below 90%. He was panicking and unable to remain calm. I could see a fear of some sort in his eyes when he would throw up! It was like he was looking at me asking for help. I feared he was aspirating because he was throwing up left and right. If I held him upright he would be fine, the moment he was laid down he would vomit. There was no way we could leave him and go back home. I called Sunay and he cut short his trip to the museum with Rihaan.  We didn’t want Rihaan to meet his brother like this, so my parents and Rihaan went home. Robbed of getting the two boys together once again!  Life.. at its cruelest! Sunay and I didn’t have any change of clothes since we were not planning on staying the night. Now we also had no car to get back home.

But that was the least of our concerns. I held Suvir non stop for 12 hours straight (with pumping and meal breaks in between when Sunay would hold him. His irritability had increased suddenly! There were tremendous bursts of crying that went on and on. Different things were tried all through the weekend. Different oxygen and flow settings! Nothing worked! Suvir was even on Heliox at one point (a combination of helium and oxygen that comes in giant tanks). He couldn’t go home on that! My heart sank!

The next day, our friends were kind enough to get our luggage and car from home and drop it off to the hospital. It was such a huge help!

The neonatologists who were on for the weekend were baffled just as much as we were at this sudden turn of events! No one had any answers, I wanted Dr. Munson back!

Monday came back and so did Dr. Munson. By this time is was the third day of us holding him non stop. Dr. Munson, explained to us that we wanted to go home but this was not practical life. We couldn’t hold him 24-7 just to keep him from vomiting and crying. I knew in that moment that all the progress we had made over the course of that week was in vain! He broke the news which I feared! Suvir needed to be intubated again. 6th time! Suvir has failed his extubation trial and we were back to the drawing board.

We were no where close to going home…

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!

Suvir was born on a Friday evening. After everything that had happened, Suvir was taken to the Neonatal Intensive Care Unit (NICU). Sunay was torn whether to go with our son or to be with me. I was inconsolable and overwhelmed with helplessness of my baby being taken away from me! He could not understand who needed him more. But I asked him to go with Suvir while the nurse, Amy, who I had bonded with over the past 12 hours stayed by my side despite being at the end of her shift.

A couple of floors down in the NICU, Suvir was extubated in a controlled setting and Sunay was able to get some pictures of our little guy without any tube down his throat or any mask on his face. This is the most precious picture that I have of him which I am sharing! The reason why it is so precious is that this is the ONLY picture I have of Suvir as a “newborn” without anything on his face.

Sunay hurriedly came back to Labor and Delivery, packed whatever belongings we had in the room and we rushed to get me settled into the recovery room after which he went to the NICU again.

Instead of cuddling with my newborn and taking it all in, I was separated from my entire family. I was empty just like the room I was in. I was in physical pain, which was only a fraction of the anguish I was going through mentally. I didn’t even know how much my baby weighed or how tall he was.

Suvir was born at 38 weeks. My pregnancy was full term. If I were to be delivering early, I would be more prepared to accept that he was not by my side getting skin to skin, bonding with his mumma, keeping his body warm against mine as secure and safe who he had been with for 9 months. Instead, he was far away from me where I didn’t even know if someone was holding him, or if he was crying and looking for the familiarity of my touch, voice or warmth? We know how much a baby needs its mother after entering the world. But the mother needs the baby just as much to over come the trauma of birth. Thats her way of healing. Thats her reward!

Soon, I spoke on the phone to my parents to bring Rihaan to the hospital. I realized that I had no little brother to show to him. The plan was for Rihaan to come to the hospital to meet Suvir and record his reaction, take lots of pictures with the two boys and then kiss him farewell for the night while Sunay and I would have to stay back.

But now, I had no baby to show him, no story to tell him, no answers for the questions I was sure he was going to ask. I had looked forward to this moment for so long where I could watch Rihaan’s reaction at meeting his brother. Would he be excited and happy? Would he be jealous right away? Would he not care at all?! Would he talk to Suvir and sing to him or pull Suvir’s hair or just stare at him indefinitely? But now, I realized I didn’t even know when Rihaan would be able to meet Suvir? Infact, after what Suvir went through, fighting like that for his life, I realized I didn’t know IF Rihaan would meet Suvir.

St. Peter’s doesn’t allow children younger than 6 years of age in the NICU, not even siblings! So, even though I had laid out the big brother tee that Rihaan was supposed to wear before I left for the hospital, there wasn’t much of a point to have him wear it. (I wanted to save that special tee for the special day, when he would meet his little brother). By this time Sunay had made his way back to my recovery room. Rihaan came in, saw me and gave me a smile that stretched ear to ear. I fought my tears back, but inside I was shattered and broken. My heart was so heavy! Rihaan saw me in the hospital gown, in the hospital bed with swollen eyes and he sensed that mumma needed a big hug from him. It was as if he could feel my pain and knew what I needed at that very moment! Usually he is all about daddy and would have run to give Sunay a hug in a heartbeat. But though daddy was in the room he only cared to give me the longest hug ever! He did not ask me any questions. He just simply looked at me between hugs!

I spent some time with him. I read him a book. I tried give him as much attention as possible following the advice I had received. Ultimately, I had to kiss Rihaan a goodnight.

I was exhausted and needed rest. My body was begging me to rest. But I wanted to see Suvir too! Thankfully, St. Peter’s NICU has a neat camera setup where parents can see their newborns remotely. So, Sunay and I turned it on and tried to get some rest.

This was how my baby spent his birthday; separated from his parents. Happy? Birthday Suvir!

I became pregnant with Suvir in the fall of 2016. I was thrilled that I did not have gestational diabetes as I did during the pregnancy of Rihaan, my firstborn who ended up in the NICU 4 hours after a natural birth due to neonatal hypoglycemia and then stayed there for 4 days denying me of precious mommy-baby early bonding days.

So, I turned my focus to enjoying my pregnancy. We did a gender reveal photoshoot on a gorgeous spring afternoon. Voila! We were having another baby boy! I was so happy! How exciting! Two brothers only 2.5 years apart..they would grow up together, play together, go to school together and just basically, be each other’s rock, BFF for life!

Once I knew the gender of the baby, I started prepping and decorating a little for his arrival. My friends also threw me a cute little sprinkle!

At the same time, I turned my focus to prepare Rihaan to be promoted to big brother status. I worried how he would cope without me for 2 or 3 nights when my husband and I both would be in the hospital? Would he be comfortable staying with his Nana and Nanima (maternal grandfather and grandmother) for that period of time since they usually lived half-way across the world for up to 11 months at a time? Will I be able to spend enough time with him upon my return home with the new baby? How will my husband and I manage with two little ones when it seemed as if we had our hands full with our 2-year-old?

The one advice I received from many second time moms, was to devote my focus and attention to my older one as much as possible after the baby’s arrival. “It would reinforce a sense of security for him that mommy still loved him just as much”, is what they told me.

I realized that most of my worries were well founded and within the normal limits of allowable anxiety for a growing family. What I didn’t realize, is that I was taking the process of birthing and what followed it for granted. And why shouldn’t I have done that? After all, I was already withheld once from a new mom experience and this time I made sure that wouldn’t happen by emphasizing “bonding” in my birth plan. Even the hospital had changed post-partum protocol since the last time I had delivered there. Now, they would no longer whisk the baby away to the nursery to perform first vitals, bath, etcetera. In fact, they had initiated performing all of that agenda right next to mommy, never separating baby from mommy.

So when my water broke around 2am on June 23^rd, in a deja-vu-esque fashion to when I delivered my first born, I already knew what was happening. I knew I wouldn’t be dilated and laboring for a while and so I didn’t need to rush over to the hospital immediately. I got my rest and made my way over with my husband to the hospital by 7am. On the elevator ride up, we took a picture similar to the one we had taken during my first delivery 2.5 years ago.

I got into a room and sure enough, I was only trickling fluid and not dilated at all. Sunay made his way down to the cafeteria for my last meal as a mother of one before my OB would come in and order some Cytotec to start moving things along. From, the meal, to the onset of laboring process, everything was eerily similar to my first delivery.

However, this time, by the time I needed the relief from the epidural the most, it had stopped working and I found myself rising up to the challenge of facing intense labor pain. This was definitely different than my first delivery! I endured intense labor pain! I begged, and I am not exaggerating, I begged for additional pain relief. I begged to use my pain pump but I was told I could not because it wouldn’t allow me to feel my legs and push. Anyways, if I consider myself fortunate in the face of an ineffective epidural; unlike my first delivery, I didn’t have to push for 2 hours! 10 good pushes and out he was!

Suvir was born at 6:06PM. His cry was gurgly (what I now know as stridorous). A quick bulb suction later, my husband cut the umbilical cord and the nurse placed my little peanut onto my chest.

Before I could even look at him properly, before I could even touch him with all the affection in the world, before I could take the focus away from my pain and focus on his existence, before it was even more than a second, my motherly instinct of protecting my newborn and knowing that something was wrong had already kicked in! I noticed he was turning blue and pale and he had stopped crying and I immediately called for help. Instead of whisking the baby away to weigh him, the nurse whisked him away on to a tiny table too far away from the reach of my left arm. Before my baby could even enter this world and cry properly to announce his arrival, he had already “coded” for respiratory arrest and an army of doctors, nurses and respiratory therapists stormed my delivery room trying to save my newborn son. My husband held my right hand, the nurse who helped deliver Suvir held my left hand. I kept asking both of them what was wrong while I was still sprawled with my legs open barely remembering that I had just delivered and that I was a bloody mess and my OB had delivered the placenta and was stitching me up. We watched helplessly as Suvir was intubated, not once but twice. We watched helplessly and I was sure that his chest did not rise for what felt like an eternity. A million thoughts went in and out of my head. I looked at my husband who could do nothing more than ask me to look at him. With a crackling voice and nervous exasperation, he said to me unconvincingly that “he (our baby) will be okay”.

In the very next moments after birth, Suvir was intubated. I could not even see what he looked like, let alone hold him. I don’t think I even fully knew and understood what intubation meant. “Why is his face covered in all this tape?”, I remember asking myself. This was my first picture with him!

Remember what I said to start this story? Don’t take life for granted because it will flip upside down in a split second. This moment in time is that split second in my life. I went from experiencing immense labor and delivery pain to pure joy at the birth of my child to complete heartbreak in a matter of seconds! This moment in time turned my life upside down. My life, my baby’s life, my family’s life changed forever in these moments!

I was going to be to be robbed of a bonding experience for a lot more than a few days this time around. Not just that, I was going to be denied any chance to catch my breath, or to let my guard down, or to heal my body and mind from the pregnancy and the delivery. But you know what, a mother endures whatever is thrown at her no matter how horrendous it is. But what a mother cannot endure are the ripples of these denials that spill onto her family and little did I know that this was the just the start of many such experiences that weaken you from the core and rip your soul out of your body.