NICU Ropes

I was discharged from the hospital when Jairus was 6 days old, a very hard day. To pack up my things--including the baby clothes that I thought Jairus would be wearing home when we left....to get in that elevator without the car seat we thought we'd be carrying....to arrive home and walk in the front door the same as we left--just the two of us. It was a very depressing thing.

But we turned right around and went back to the hospital. Over the next many weeks, and James had to go back to work, we fell into a schedule. As soon as I woke up, I'd call in to the NICU and get a report of how his night went. My mom would pick me up a little later and we'd go into Mac. We'd spend the morning and our lunch hour there with Jairus, then mom would have to leave around 1:30 or 2 to get home for my siblings return from school. I'd be on my own for the rest of the afternoon, until James got there around 7pm, as he was commuting to London at the time. We'd usually stay quite late, heading home around 10 or 11 pm. We'd often phone once more before we crawled into bed to see if Jairus was settled for the night. And then it would start all over.

In those first few weeks, we had a few meetings with the ENT specialist, Dr. Reid, and the neonatologist, Dr. Marrin. There was also a few other specialists that would be in on it, but I don't exactly remember now. Respiratory therapists, Occupational therapists, an endochrinologist, a geneticist. The biggest question in that first month was whether Jairus needed to have a tracheostomy. Since his graduation to the naso-pharyngeal tube, his breathing had improved some, but his sats still often dropped below 90%.
James and I despaired over the thought of Jairus needing surgery so soon, and so young. And the idea of this hole in his neck, with an instrument inserted into it to let him breath was intolerable. He would have it for at least a year, maybe two, and it would mean that we would never hear his voice. I couldn't stand the thought.

Meanwhile, he was tolerating breast milk feeds through his naso-gastric tube very well and gaining weight nicely. I was very proud and kept pumping!

In the end, we decided NOT to have the tracheostomy done. Fortunately, Jairus' case was considered moderate, which meant that our decision was not opposed by the medical team. That was a relief.

You can really see in this picture with my dad how small his chin was (actually, you can't really see it at all!)

During the six weeks that Jairus was in the NICU, the nurses patiently (most of them) taught us how to take care of Jairus' special needs. By the time we brought him home, we'd even learned how to remove and replace both his breathing and feeding tubes.

As he grew bigger and his breathing stabilized, the RT's started instituting 'tubeless' times. These were terrifying. At first it would only be for a minute or two--the RT would come to change out his tube and would just wait...and watch to see how he did without it. One time the RT 'forgot' something he needed to do the change and had to go back to get it. He left a tubeless Jairus--and a completely panicked mum. It was about a five-ten minute wait and I stewed the whole time. Inside, I knew it was good--he needed to learn how to breath without tubes, but it was one of the scariest things.

Then just before he was six weeks old, we got some great news...