It makes me realize how very little was actually do something 100 times. We are on our 13th day in the NICU, and this is Sam's 14th day of life. 2 weeks. Less time than we typically give an employer when we quit a job. Less time than it takes to go buy a car...well, give or take a couple hours. These are some things that we've done over the last 2 weeks (and likely, you have to) that don't come close to 100.
- Eaten a meal <40 li="" times="">
- Grocery shopping 3 times
- 20 blog posts written
- 80 hours of missed work (so far)
- Lukas has attended 66 hours of school
- Miles has attended 12 hours of preschool
- 36 episodes of Friends watched (about 12 hours worth of shows)
- 4 total football games (2 Utes, 2 Saints) for a total of 12 hours of football
- 7 days/nights of snuggles with the kids
- 39 hours of missed sleep while at the NICU
Just to name a few. Ask yourself this...what, in the last 2 weeks, have you done 100 times? It's amazing to quantify our visits and Sam's journey thus far. We do so few things 100 times, even in a year. We've gone to see Sam, religiously, for 100 visits across 13 days. An average of about 8 a day.
Not that it isn't worth it. Everything we're doing (or helplessly watching) is going to make Sam whole. To bring him home. To wake us up from a nightmare that doesn't seem to want to let up, just yet. However, I'll celebrate, as we near our 101st visit to little Sam's NICU, a couple developments and some hope for next steps or answers.
Today, I got a call from the hospital Social Worker. Amazingly, she has been one of the first people through this to express her sorrow and apologies that we have had to go through this. Not that I need someone to do it...it just struck me that we haven't heard that from people involved (outside of family and friends). Perhaps the NICU staff just realizes that these are their regular days...nothing special to see here...move along. The Social Worker stated that Sam was making progress and that she promised they were making every attempt to get him home "before Kindergarten". Before I move forward with the rest of the conversation, I will say that her joke might have been the worse placed levity in the history of NICUs. Is it ever appropriate to joke about the length of a hospital NICU stay? But I digress. The Social Worker let me know that once they feel Sam is stable enough, she, the Neonatologist, and Sam's Case Manager will work together to get him released. I expressed my frustration that we keep being told what milestones Sam needs to achieve, and then when we achieve them, we go into silence mode.
At the end of the conversation, she brought up Sam's chart to see how he was doing. We gleaned two critical pieces of information from her view. First, it appears that Dr. Peterson is going to start new attempts to wean Sam lower on oxygen. While this is great, it also made me realize that I have been misspeaking regarding Sam's oxygen levels for quite some time (since he moved to the wall). Hey math majors, did you know that there are 1000 CCs in a liter? So Sam isn't on .4 liters per minute. No, he's on 40 CCs. Doesn't that make it .04 liters of oxygen per minute? Yeah, that ain't a lot folks! We are planning on talking to the Doctor at our 2:00pm feeding, and we will hear what her weaning plan is. Apparently, all 5 Neonatologists are aligned with the same vision - to send every NICU baby home off of oxygen. At least we know a bit of their end game.
Second was some good news, mixed with some annoyance. The Social Worker was reviewing his file and said "and of course you know, his PDA has closed." I stopped her in her tracks. What? The hole in his heart has been resolved. It closed on his own. Apparently, the murmur is no more. That's fantastic news...and a welcome relief to his continued progress in his heart. I bit of annoyance, though. Ummm...why am I finding this out as the Social Worker reviews his file? He's in there for a heart condition. Wouldn't it be a "scream from the rooftops!" kind of moment? The Social Workers advice was to see if the Dr. mentions it at 2:00pm. I told her that if no mention was made, I would be sure to do so. If the Dr. doesn't volunteer the information, she and I might have words regarding how parents are kept informed on critical developments in their NICU child.
So as we stand right now, Sam is stable and tolerating 40 CCs of oxygen. He's been doing so for the last 24+ hours and doing it really well. We "think" they are going to try to wean it down a little more. We'll see. Sam's PDA has closed, which means his heart continues to heal. Hopefully that will help his progress as well. And I say all this as we gear up to head for our 101st visit to the NICU. I know that many other devoted parents have probably cleared the 200, 300, or 400 visit mark (especially related to any preemies). But the milestone can't be ignored. And the reality of just how much this has affected our lives is plain as day.
Let's hope that we aren't looking back at 125 visits. Or 150. Or more. Because every day that Sam gets better, I picture a reality where we are doing 100 other things. Like holding him. Letting him sleep on our chests. Feeding him on the bed. Supporting his head as Lukas and Miles hold their baby brother. Buying 100 balloons for Sam's "I'm home" celebration. Sending out 100 thank you cards to all of you. Yeah, right now, I'd rather be doing 100 other things in my life. Yet these 100 (and counting) continue to be the most important things on Earth.
Brad
No comments:
Post a Comment