Tuesday, June 12, 2007


Noah went to see Miss Mollie today (the pulmonology NP). It was a good visit as far as lungs go. I was worried because we had our first wheezing episode with a cold since our last appointment, but she said his lungs sounded beautiful. We are allowed to cut back pulmocort to once a day for the summer, which is sooo nice. As we were leaving she said "The lungs are the least of your worries.". I imagine that she meant that his lungs are doing really good, not that the rest of our life stinks, but it did get me thinking. When Noah came home from the NICU our biggest battle was to avoid the vent and a trach. All of our energy was focused on not getting him sick and giving him those darn breathing treatments every 3 hours around the clock. Somewhere along the line that changed. In spite of the fact that we still have O2 tanks in the bedroom closet for our 2 year old, he hasn't needed them since he came off of nightime oxygen in August. We went from a baby with severe BPD to a toddler who might actually avoid the family asthma curse. But in the place of lungs we first worried about Noah's seizures, then his kidneys, and then vision and hearing and so on.When Noah turned one he had at least twice as many issues as when he was discharged, and that was a tough time for me. But over the last few months I've been thinking about all of the things that I don't worry about anymore. I much prefer the issues we have now to watching Noah gray and lifeless while the neo did chest compressions and I don't even remotely miss walking into the NICU and checking the vent settings to see if it's a good or bad day. I read today about sextuplets born at 22 weeks - I'm so glad I'm not dealing with their issues right now. I have a lot to be thankful for.

1 comment:

Emily said...

I often times feel the same way. We came home from the NICU with our trach and ventilator and that was our biggest problem. She was still eating 50% of her feeds by mouth at that time and everyone was confident that if we just gave her time she'd improve.

Fast forward to 8mos later and now we have a congenital kidney disorder, a mysterious metabolic disorder, a complete feeding aversion and our developmental delays continue to become more evident. Our lungs are now on the back burner compared to everythign else. We're on more medication now than we were upon discharge and now we're blessed with weekly-bi-weekly blood draws too.

I'm glad his appointment went well. What a joy to cut back on neb treatments.

In regards to your comment, where did most out of town families stay? What was the average age of the kids in the program?