Saturday, April 25, 2009

Dad finally rambles - patients versus children

Most of the time we've been in the NICU we have been treated like the only people in the hospital. Whether nurse, doctor, or support person, they are informative, hospitable, and compassionate. You get the feeling they are really fulfilling a calling to make sure the whole family grows up well together and keep us involved in the kids' care as much as possible. Knowing Adam and Sara are being watched over and cared for by the best NICU in the world has at times made it easier to leave them at the hospital and come home after each visit.

But a couple of days ago I heard one of the nurses talking to someone else and say something about "my patient" and it clicked: Adam and Sara are patients in a hospital but they are still my children. Adam is the son who will carry on the family name and Sara is the daughter who has her father's heart wrapped around her little finger. No matter what kind of care they are getting at OSF St. Francis, ultimately, God has entrusted them to JoLynn and I for a short time. OH MY!

The kids' caregivers at CHOI can only get so involved in their lives. They change shifts, take turns watching over them, go home to their own families, and see some kids go home and grow up; others go quickly to heaven for eternity. Their investment can only go so far. And from time to time we have to help them in the continuity of care from shift to shift, day to day. JoLynn has a tremendous memory for each day's events, vitals, challenges and accomplishments when it comes to the Wonder Twins. Thankfully, too. Sometimes the staff takes a very short view of our 3 week-old kids and make generalizations about their behavior, responses to treatment, outputs, etc. JoLynn has to give them the bigger picture - like when they say Adam has always had trouble with milk. Truth is, he was eating quite well for a few days and inputs and outputs were normal. JoLynn reminded them of that so that Dr. Clark could make a more reasonable attempt at diagnosing his current digestion problem. Without that perspective, they could spend a lot of time guessing at why he's not processing correctly and having him on IV's more than needed.

JoLynn even observed that Adam has enjoyed the all-green pacifier when they were trying to give him a mostly clear one that has a different size and shape. They went back to the green one and he takes it willingly. That wasn't in his chart.

Caring for and seeing preemies develop is complicated. They don't do all the things full term babies do. They don't have an easy way to communicate problems. Even internal systems like bone marrow production of red blood cells isn't up to speed yet, because it wasn't scheduled to be needed until June.

So, I'm thankful there is a facility that has been in the business of bringing up preemies since the 1940s when such a concept was rare. And I'm thankful that we live close enough that we can be actively involved in their day to day care and provide observations to medical staff when they're determining a plan of care and facing challenges. I'm thankful that I have both a son AND a daughter who are wonders of God's creative power and perfect timing.

As with most of the major and sometimes seemingly minor events in our lives, timing is seldom what we plan. I'm just looking forward to finding out what great things God has in store by bringing them here 12 weeks early when I'm unemployed.

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