"The Long View"

For someone who has a lot to complain about - you don't really hear much of that from our son. Charlie took a couple of unpleasant situations in stride today, and earned a lot of praise from his parents for his patience. Overnight he spat up most of the milk he was eating, so early today he got another tube in his mouth going in to his belly. This time it's a pyloric bypass, a micro thin chute for milk that will skip the stomach altogether and pour direct to his small intestine. The nurses said an x-ray showed some air building up in his tummy that he's not capable of venting himself, so this bypass will keep him nourished but not exacerbate his bloating. At the end of the day Charlie was comfortable, keeping food down, and resting.

Charlie was doing very well with his breathing so his physicians moved him back to the bubble c-pap machine which is wonderful and his blood gasses remained at steady, clean levels.

It was another day of blood pressure management too. The doctors are incrementally stepping up his medication dosage as he gets some, responds well, then when his BP ticks up they gently nudge him more meds. None of this seems to bother Charlie one bit. The frequent pin pricks to the heel for blood draw seem to stress him very little now. He's quite a soldier!

I'm trying to follow his lead and be patient but it is not easy. We would like to have him home TODAY but that's not going to happen. One of his doctors suggested to us that he could be ready in 8 weeks - that would be well before his July due date! Marie and I are not counting on it and that finish line seems incredibly far away when we look at our tiny little guy through the incubator glass.

Some really sound advice landed on me recently when we had a visit Sunday with a wonderful friend of many years. After a light lunch at her house we brought her to the hospital for a look at Charlie and I've been thinking about what she said all this week. First of all, she said, we need to pick the things we are going to worry about. Of the numerous troubles that Charlie is dealing with every day, we cannot focus on all of them or we'll be simply buried in worry. The concerns for his heart, the blood pressure issue, and the mystery that surrounds his brain bleeding are all the kinds of things that have singly and on the whole provided plenty of sleepless nights for the two of us. They are important problems Charlie has and all need be addressed in time. But we cannot let them all pile on our minds and hearts.

Secondly, she advised, one of us needs to find "the long view." So far we have been tightly focused on the immediate, day-to-day care of our boy - unable perhaps to imagine the miles and miles we have to go with Charlie. Now that Charlie's condition has stabilized and we have had a generally positive week or so of developments in his care, we can think and talk about the long term steps ahead and imagine the day we'll bring him home from the hospital. There is much to do. Beyond painting his room, Marie and I didn't do a whole lot in anticipation of our baby's arrival. We are getting a loaner crib from friends this weekend, so that's something, but I imagine the to-do list will have to evolve as we learn more about Charlie's health and any continued care he may need. Adopting "the long view" now is absolutely the right idea and our boy will be better for it.