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.