Your Baby Needs a Trach - Jack's Diagnosis

When we had the boys 15 weeks early we knew that we would spend a significant amount of time in the hospital. But we were now a month and a half past our due date and while Jack was finally leaving the hospital he was leaving it via ambulance in what looked like one of those contraptions they use to keep delivery pizzas warm.

The first few days in Jack’s new digs weren’t a walk in the park. We were not only in a new place but in a place completely different than our OG hospital. We knew no one, we were in a much larger unit and things were not only set up differently but done differently. We were optimistic about having a new, fresh pair of eyes with more advanced capabilities but it was a rough transition for us. However, if you looked at our sweet Jack you would never know.

Jack’s first cuddles with Daddy in Hospital 2.0

Within the first week of Jack’s arrival it was decided that the level of support he needed could not be accommodated with the nasal cannula any longer and he needed to be intubated. We also decided to start him on a fifth round of steroids. Seeing your baby intubated when they are itty bitty is rough but seeing it when they are bigger and stronger and have an opinion of their own is much harder.

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Jack hated it. He wanted his binky, he wanted his cuddles and most of all he wanted that big tube out of his throat. It lasted all of 10 days before he went beast mode and yanked it out. He was stable enough that he was able to go back to the nasal cannula and we got straight to cuddling.

Happy baby Hulk!

Sixteen short days later Jack started going downhill at a rapid rate. We found that he had rhinovirus, also known as the common cold. While a cold seems harmless enough, in the NICU it’s a full blown situation. Jack was put in isolation - meaning that everyone entering his little space had to be decked out in PPE Body Armor, he would not be able to see his brother at all, and he had to be intubated once again. This time we could not afford for him to hulk out so he had to be sedated and often strapped down. This lasted for four painfully long weeks. Our sweet happy Jack was a tiny shell of his normal self a vast majority of the time we were with him but there were a few moments of light in the dark.

The neo-bars they normally use to hold the tube in no longer fit Jack’s cherubic cheeks so he had to have all his tubes taped to his face.

One of the only good things to come from this crummy cold was that as long as Jack was intubated we could get a 4D CT scan of his under grown lungs and airway which could give us a definitive diagnosis and our plan of care. We found that Jack has what is informally know as a floppy airway (Tracheomalacia) For which the treatment was a tracheostomy, and with a tracheostomy comes a gastrostomy tube for eating. We knew when we came to Hospital 2.0 that this could be the road we would have to go down and we were terrified of it. However, we were relieved to have a definitive answer and a way to finally get our baby home. Jack had to wait four full weeks before he could undergo surgery to ensure that he had kicked his cold to the curb before going under anesthesia. Surgery day came and while it may seem strange it was a calm and relatively peaceful day. Surgery seemed like nothing compared to what he had gone through during the last four weeks. Surgery meant he could get back to his old self and surgery meant a real and tangible road map home.

Jack Pre and Post Surgery

Jack’s surgery went perfectly and he came out with a fancy new trach, a g-tube and for the first time since he was born (193 days) he had nothing on his face, no tubes, no tape just big juicy cheeks. Within no time Jack was back to his happy self and was especially happy to be reunited with his long lost twinsie.

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