Isaac has been out of the hospital for a month now. While we were frustrated by some communication problems (the glucometer being a prime example) over all we treated very well by the staff and were informed and included in Isaac's care. We suspect that the geneticists, endocrinologists, and NICU neonatologists do not often work with one another and there some bumps there too. Despite this, everyone was very willing to answer questions and upfront with what they knew and didn't know.
When we brought Isaac to the hospital, we did so knowing full well that there would be plenty of tests and interventions. Something was wrong, and as hard as it was to watch, we WANTED intervention. Our baby wasn't growing, and he should have been. In the ER they did several blood draws to rule out XY&Z (infections, a full blood panel, ect). After getting some of the results back, they didn't believe the first glucose reading was accurate. So after rehydrating him, they tested again. Same results. So we went up to the fourth floor, and I carried Isaac there with an aide on one side pulling the IV and another with the portable monitors. The NICU staff was skeptical of the ER results. "That can't possibly be right." So they tested again. Of course they got the same results. Intravenous insulin was started promptly. Thank goodness Isaac was born when he was, where he was. Even just fifty years ago it is very possible he would have died.
Roughly thirty years ago one of my uncles was diagnosed with type I diabetes. Back then they didn't have home test strips. My grandparents were given the prescription for insulin and told to watch out for signs of hypoglycemia (they called it insulin shock). It's hard to fathom controlling glucose in a teenager without any way to monitor it, much less an infant! Isaac couldn't really tell us when things were off. Occasionally I could tell by his cry, but not always. Even though we checked every 2-3 hours we were still surprised by both high and low glucoses from time to time. At least twice I awoke in the night and felt something wasn't quite right. Isaac was fast asleep but I checked him anyways. Both times his glucose was in the 60s! So I woke him up, fed him, and checked again 15 minutes after feeding him and he was fine. At about a dollar a pop, the test strips are expensive, but so worth it for peace of mind.
While Isaac was in the NICU Jonathan and I made it a point to meet nearly every nurse that took care of Isaac. We often took turns going up to the hospital, which made for a lot of driving. We felt it was important for Isaac to have one of us seeing to his needs and holding him as much as possible. We also wanted to see who was taking care of him, see that things were going well, and to advocate for him when necessary. I personally wanted to be there to breastfeed him at least several times a day so that he didn't forget how to do it. I was very concerned that he might turn into an exclusively bottlefed baby, and I really didn't want that to happen. Breastpumps just aren't as cuddly as a baby.
versus
(Bathtime with Grandma)While there we observed lots of different parents and babies. Some babies were scarcely visible with all of the tubings, wires, and lines in them. Others just had monitors and maybe a line or two. The parents were all ages, from very, very young to maybe mid thirties, and from all different kinds of backgrounds. I saw parents visiting all of the their babies there, with the exception of one baby. In the big room with many babies, I observed one with a high-pitched inconsolable cry. She wasn't hooked up to anything except monitors, so her nurse walked her around the halls of the NICU until she fell asleep. I saw this same gentle nurse with her more than once, so I think she'd chosen this baby as a "primary." (Isaac had a few nurses who'd chosen him as a primary, so when they were on shift they would often be assigned take care of him.) This small baby concerned me though. She often cried (very shrill) and had no visitors. I wonder.... I sure wanted to scoop her up, take her home and love her though. I think of her and wish her a loving home and beautiful future, but I am troubled...
No comments:
Post a Comment