Good afternoon, all. I'm sorry that today's first update is a little late. We decided to return home between feedings (going so far as sleeping for a couple hours before trekking to the hospital for night feedings) and have also brought the boys home today. I think the boys (and us) need a bit of normalcy. But that doesn't mean things haven't been happening with little Sam. Today is another day of news, progress, and, of course, hope.
Last night's nurse was a new one...who I will forever know as Waldo socks. We walked into Level 2 NICU at 8:00pm last night and from across the room, every eye (even the other NICU babies, I'm thinking) was drawn to these pink, red, and white socks. The nurse was wearing scrubs, but they were hoisted up like knickers (you know...the Payne Stewart golf attire special). From calf to foot, these socks appeared brighter than the bili lights shining on Sam. As we approached, I was hopeful that I could deliver a sarcastic comment that would be taken as a compliment. My "hey, nice socks!" was dripping with sarcasm...and she thanked me for the compliment. I am quite accomplished in this area of specialization.
More importantly, however, was Sam's appearance throughout the night. Our 3-hour routine had developed into the following: 1) change Sam's diaper. 2) repeat as necessary. 3) repeat as necessary. 4) feed Sam 5) reconstruct his bed 6) turn on the bili lights and 7) go home. As we went through this routine (don't worry, more on steps 1-3, 5 below), you couldn't help but notice the change in his skin color. Sam had never progressed to pumpkin status, but he was yellow/orangish. Each time we saw him, he seemed more caucasian (with a hint of tan, of course). She drew blood at 5:00AM to test the bili levels and we waited.
Which takes me to those steps I mentioned earlier. Ladies and gents, we have a pee and poop specialist. We also have a pee and poop strategist. Specialist: he sure is doing a lot of it. You can count on him peeing and pooping at basically every meal. Strategist: he doesn't make it easy. More often than not, he poops first. And while we're cleaning that up (exposed to the cool air), he pees through everything. Keep in mind, I'm not saying that he pees through an outfit. No, he hits the outfit, the bed, the towel that they use to keep him stationary, the bed cover, and the bed itself. Literally, they have changed all of them 6-7 times in a 12-hour shift. Needless to say, the specialist and strategist is getting better at his job. But I'll take pee and poop in any fashion right now. I'll regret saying that when he gets home and starts spraying the walls. But for now, specialize and strategize all you want, Sam.
This morning at our 11:00AM feeding, we got good updates on Sam's progress. When we arrived, we were a bit disappointed that the doctor hadn't made it to Sam yet. However, this wasn't due to not trying. The NICU had an influx of Level 3 kids last night and into this morning. At one point, I think there were 7-8 total kids in NICU. This morning, there were 14. And as the parent of a micro mini graduate, I say give the Level 3s all the love and affection they could ever need. Every child needs to get better. Every parent needs to get their baby.
First up was the bili update. When they started the lights, they did so because his levels were above 14. Again, don't ask me what the number means. I just put into a chart in my head and need to know if we want it to go up or down. The goal here is to go down, and this morning's reading was a 10. The nurse was waiting for the Dr. to give orders to stop the bili lights. So as of now, he's still suntanning but that seems to be getting close to stopping.
As we were wrapping up (from Sam's best feeding to date, I will say), another nurse came over and alerted us that the Dr. also wanted to start weaning from the Nitrous Oxide. This is a slow process, and a critical one to show patience with. Dropping it too quickly will lead to a relapse of the pulmonary hypertension, so taking deep breaths and awaiting small baby steps is the key. Sam was on 20 ppm (parts per minute?) of Nitrous Oxide. We watched as she dropped it to 15. They will hold steady for 6 hours. If he keeps his oxygen requirements below 40% (he's at 27% now), they will take him down to 10, then 5. Interestingly enough, the hardest part to wean is from 5 to 0. So they go one at a time. 5, 4, 3, 2, 1. And then off. If he continues to tolerate, they continue to drop. If he has a hiccup, they return to the last level he tolerated. As an example, if he dropped all the way to 5 and then struggled, they'd take him back to 10, not to 20. Make sense? So every level that he tolerates means that the previous level is toast. We shouldn't visit it again. So the magic number is 0. We're currently at 15 and hoping that we see a kid that's tolerating the drop when we go at 2:00PM.
It's interesting what seems to hit me the most when I wonder how Sam is doing. Sure, all of these interventions and his levels are critical. From a medical perspective, they are the key to him coming home. But for me, the best thing I've seen since early this morning to the 11:00AM feeding is that Sam is just more awake. He fully wakes when we arrive. He cries for milk. He eats more, burps like a champ, and then stays awake when we put him back down. As our nurse (the oxygen fiddler from yesterday is back) said this morning, "maybe he's starting to feel better!". Two days ago, the statement was "he doesn't know how sick he is." Yeah, I'll take the new statement. And will happily buy every NICU nurse a brand new pair of Waldo socks when we get to hear that Sam is better.
Who knows? Maybe it'll start a NICU fashion trend.
Brad
1 comment:
It's like reading a book on your family. Thank you for the updates, I'm so happy for his progress!! In my prayers.
Jen
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