Breathing Should not be this Hard

I believe it was about four days after he was born that they had to intubate him. I remember we had left the NICU fairly late the night before, distraught to leave him because he had been quite upset. The next morning when we arrived, the nurses told us that he never calmed down, and his sats kept dropping lower and lower. Finally, they were forced to intubate him.

When I saw him, it was the first time without tape and tubes all over. He simply had one tube peeking out the corner of his mouth, like he was sucking on a straw. He was sleeping. And for a short, blessed time, not struggling to breath. I'll never forget the sound of his stridor--the sound he made when he fought to get air in. A terrible choking, rasping sound. But for now, he was calm and his chest/back raised and lowered peacefully. As upsetting as the intubation was to us, I was so glad for it.

Unfortunately, it was short lived. By that afternoon, he had coughed or pulled it out, so we were back to square one. I think it was around this time that the ENT suggested the 'trumpet' breathing tube. This was a nasal-pharyngeal tube that went in one nostril and a short ways down the back of his throat, just far enough to get past the offending tongue. This kept his airway 'patent' or open. The tube stuck out his nose about 2-3 inches and we were supposed to keep this little humidor on the end so that the inside of his nose and airway didn't get dried out.



As it was, he needed to be suctioned a fair bit. This was always an unpleasant affair, that we soon learned how to do ourselves. There was a bit of a protocol to get by--laying out all the parts to the suction tube, putting on a clear plastic glove just the right way--not touching it with your other hand, opening the pieces---of course they're all one use, disposed of immediately after, attaching it all together, and then shoving the thing down his nose. Unfortunately, it was necessary at least every 3 hours, sometimes more often, because his 'secretions' would build up and get in the way of the breathing tube. If his sats were low, or we could hear more raspiness then usual from his breathing tube, then suctioning him was the first consideration.

One of the most important pieces of advice we were given, was to learn to watch his colour. It didn't take long after he was born, to find us watching his O2 sat monitor more than him. We lived by those numbers. But it was a machine, and not always reliable. He would kick off the probe and send the numbers spiraling down. I'll never forget an early experience holding him and watching the oxygen numbers go down, and down. I started to panic and called out for a nurse. She came quickly, and, taking one look at his dusky face, took him from my arms and moved him about, spraying an oxygen tube across his nose. He picked up quickly, but I took much longer.

It was around this time though that emotionally, things were looking up. I had gotten used to pumping milk on a schedule, I was discharged from the hospital and feeling more human. We were learning how to take care of his various needs and not feeling so helpless. And we started to take a look around and realize how blessed we were.

Our son was 6 pounds, 7.5 ounces. In the NICU, that was considered huge, as most babies there were premature. Our son was beautiful, with lots of dark hair and ruddy skin tone. Many other babies were too tiny and early, with many more tubes, translucent skin, no hair and continually beeping machines.

One evening when we were feeling especially upbeat, a new baby came in. Jairus was in a covered isolette, with two little portholes that popped open on hinges. The whole front could come down to take him out, and his tubes and IV were threaded through holes at the end of the isolette. At this time, McMaster had one NICU made up of two large rooms, so you were only feet away from another baby, and sometimes another mom or couple keeping vigil. We rarely interacted however. The nurses strongly discouraged any interest in the other babies and would scold you for allowing your glance to hesitate on the other tiny patients. I found all that intensely unnatural. The families in the NICU were all going through crises and many of them had no other family to help. We needed the support each other could give, especially as some babies improved. But the nurses were only concerned with the privacy of each baby and their parents. (More on that later)

But this evening seemed different. Perhaps it was because this was early in Jairus' hospital stay and we simply hadn't learned to 'mind our own business'.

This new one came in on a different crib. It was open all around, with a lamp attached to one end, extending over the top like the light the dentist angles to see in your mouth. If he was wearing anything, it was only a diaper and I wondered how this newborn was staying warm. He had more tubes and wires than I could count and he wasn't moving. He lay on his back, arms and legs splayed out unnaturally. He didn't cry and it was hard to tell that he was breathing. I knew he must be though, because the machines would alarm if he stopped.

The rule in the NICU was that only two people were allowed in per baby. If James and I were there, and my mom came, one of us had to go out so she could come in. This must have been a special situation though, because as we watched the baby wheeled in to a pre-set location in the room, four distraught relatives followed: mom and dad, grandma and grandpa.

They were Italian. I grew up in Stoney Creek where there's a large Italian population, so I could tell right away. Mom was short and dark haired, still in hospital clothes. Dad was tall with dark hair slicked back and gold jewelery flashing. I don't remember the grandma, but it was grandpa that caught most of my attention. A older picture of his son, his shiny black shoes moved down the aisle soundlessly. His black pants and dark golf shirt were pressed and immaculate. His hair was also glistening combed back away from his face. His gold necklace and wide gold watch spoke of their wealth. It was a crass thought, but my first impression was that they looked like the typical movie style mafia family. You almost expected to see a handgun wedged in the back of his belt as he passed.
We watched this sad parade as it ended not far from Jairus' isolette. It was impossible to tear our eyes away from the palpable grief as they gathered around the baby. I was moved to tears to watch this hulking, self assured grandfather as he wiggled his finger into the baby's hand until the tiny fingers curled around his knuckle. And he wept.

Someday the Lord will tell me what became of that baby.