I'm trying my best not to make the trip to NICU a play-by-play Gamecast. I know many of you might be checking often, but I can't bring myself to unload at all of you every three hours. Trust me, I doubt you could handle it either. But I do have some updates on the other happenings of Day 5 of our NICU journey (and Sam's long trek home...he will get there eventually).
Our nurse today was Allison, and she was wonderful. In fact, almost all of the NICU nurses have been incredibly special. We've had a couple where we realize the standard isn't being met, but we just power through a 12-hour shift and make fun of them behind our backs. Okay, not really. I just tweet sarcastic comments to my 6 random followers. Okay, not really. But I think these sarcastic thoughts and then quickly think about the look Elisa would give me if I said them and I bite my tongue. But back to Allison. I love her for a couple things. First, she consistently commented on how great Sam looked. When a NICU nurse says "I know he's sick, but he sure looks like a normal baby", it is both helpful and heartbreaking that we're in this situation at all.
Second, she got permission to fiddle with Sam's oxygen levels. I told my Mom the other day that all I wanted was to see them backing off some of the things, as opposed to adding on. For the first four days, it really felt like we just kept adding interventions, and the doors home got a little farther away. But Allison proactively started dropping his oxygen levels to see how he did. You see, there is a blue line and number on Sam's monitor...it's the one that measures oxygenation in Sam's foot (to show that his extremities are getting oxygen rich blood). It kept capping at 100%, so Allison started moving it down. At the start of the day, Sam's oxygen level was 32%. By his 5:00pm feeding, he was at 27% and she was toying with the idea of dropping it a bit more. For those less scientifically inclined, human beings breathe 20.9% oxygen from the air. 27% doesn't feel that far away.
Tomorrow, we don't have another D-Day. But we have a critically important one. Tomorrow, they are going to gradually start weaning Sam off of the Nitrous Oxide. They must do it slowly, so that Sam doesn't have a relapse. It feels like we're three big steps away from seeing progress towards taking Sam home: 1) Successfully weaning off of Nitrous Oxide. 2) Successfully weaning off of oxygen. 3) Another echocardiogram that shows that the pressure in Sam's heart hasn't increased.
Before I do sign off for the day (don't worry, I'll be back tomorrow for more riveting explanations of blue lines on monitors!), I do have one more story. Elisa and I have stopped the vagrant lifestyle and will be sleeping at home tonight. We live 5 minutes away from St. Mark's, so we're going to try to do the driving thing over for his feedings. If that is successful, we'll bring the boys home tomorrow and try to establish some normal routine while Elisa and I go back and forth from the hospital. I love my boys more than anything (well, okay...equal to the rockstar of a wife that gave them to me), and I can't imagine the toll that this is taking on them. Lukas told my Mom this evening that it felt like Sam didn't exist since he had only seen him on the first day. He also said that he was supposed to be home with Mom, Dad, Miles, and Sam by now.
Children have a way of seeing the truth of a situation and not being afraid to speak the hurt. I guess my point is that I want to thank you all for allowing me to be a kid in my blogs. I'm trying to say the truth. I'm trying to speak the hurt. Because deep down, Sam's heart and each member of our family is broken right now. And we need to individually heal as well. The boys will do it through snuggles. Elisa will do it by hitting me (or by other means). I tend to do it by writing to my best friend...my pen, my keyboard, my writing. I just appreciate the opportunity to lean on that vast community of quiet observers that let me.
Brad
P.S. I also changed the comments section on here...I realized that you had to sign your life away to a Google account. Now you can anonymously mock my writing. :P
2 comments:
Thanks for the update. and for changing the comments look in. love and hugs and prayers....love, Cuz Heather
I love Luke's ability to so openly express his feelings. So important to keep the needs of all as balanced as possible. No small feat. Thanks for keeping us all posted this way.
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