When we got pregnant with Miles (but before he was born), I remember a bunch of people warning me that I'd never sleep the same way again. I scoffed. After all, we'd had Lukas. And although we lived in a fog for a few weeks, we made it through. We'd divide and conquer. Plus, Lukas was already sleeping in his own bed. We had this. And then Miles arrived and I realized that I'd never sleep the same way again. We didn't count on Lukas going a little cuckoo for cocoa puffs when Miles arrived. Lukas already was the kid that liked to get out of his bed (once he realized he had the freedom). Suddenly, we were trying to get Miles to sleep while Lukas kept wandering around. It got so bad that our Pediatrician told us to lock Lukas in his room at night. It was equally heartbreaking and hilarious to hear him beg and plead the first night we put the safety lock on his door. But we eventually figured it out. We adjusted.
After we got pregnant with Sam (but before he was born), I remember a bunch of people warning me that I'd never sleep the same way again. I scoffed. After all, we had persevered wandering Lukas and colicky Miles. How much worse could it get? And then Sam arrived and I realized that I'd never sleep the same way again. Sure, you have the fact that you never really relax. We live with a constant stomach ache and it is common practice to wake up 2-3 times and wonder if this has all been a nightmare. But more than that, the constant running back and forth to and from the hospital is making us more tired than when we would have been with a little newborn next to our beds.
But when I step back and compare the three, it's hard to know which was the hardest. Until I realize that strange things are starting to happen this time, due to our exhaustion. The other day, Elisa headed upstairs to clean the bathroom. 90 minutes later, I got a panicked text that she had sat down before heading to clean and had fallen asleep. Two nights ago, I pulled myself out of bed, got into the car, and headed down our street. Out of the corner of my eye, I thought I saw Santa Claus pushing a stroller down the street...at 11:00pm. In the dark. When I got to the end of the street, I looked back and couldn't see anything. Yeah, I think I was losing it. And then last night, as I was walking down the stairs to head off to feed Sam, I "might" have slipped on the 5th stair from the bottom. My heels glanced off of each stair as I literally rolled down the stairs in the dark. Elisa got out of bed and asked if I was okay. I told her that I just slipped on the last stair. When I got in the car, I looked at my arms. You could see where the stair railings had ripped up the skin. Hey, at least I had war wounds, right?
Regardless of how tired we are, though, we plug further along. After all, today's 2:00pm feeding was to be the grand unveiling of the plan, right? And my, did they deliver! We were like rockstars! Not only did the Doctor come and see us, but we met Sam's Case Manager and the hospital Social Worker. And we started to understand the plan.
From the Doctor
Sam's progress continues to be strong. Instead of resting on our laurels, the Doctor indicated that she wanted to start weaning him below 40cc of oxygen, with the goal of getting off of it. Apparently, this is a joint goal of all of the Neonatologists - as many kids as possibly leaving NICU without the need for home oxygen. We have 48 hours to wean before we re-evaluate. The expectation is one of two outcomes: 1) He has weaned, or is close, and we make the choice to keep weaning before we leave or 2) He gets stuck in the weaning process (somewhere at or below 40cc) and we go the route of home oxygen. Either way, he'll be weaned and home or sent home with oxygen, with D-Day #3 to come on Thursday.
From the Case Manager
It is important to start planning for life away from the NICU. So the Case Manager helped us with information related to an Infant CPR class (that's tomorrow), as well as trying to secure an appointment with our Pediatrician and a Cardiologist for continuity of care. They had made contact with a Pediatric Cardiologist by the name of Dr. Day at Primary's and instructed us to call and get an appointment within the next 1-2 weeks. She cautioned us that Dr. Day is very difficult to get into, and that we might have to just go with a Cardiologist in the shorter term. Additionally, she walked through home oxygen and the process that we would go through to get and administer that. As she stated, while weaning at home is very doable, the preference is always to have the baby leave weaned from oxygen altogether.
From the Social Worker
Honestly, we got zilch. My understanding of the Social Worker is that we were supposed to get some emotional support...that's how she set things up on the earlier telephone call. I appreciated her initial comment and understanding that this was a very hard thing to go through. As we sat and talked with the Case Manager, the Social Worker just stared on, making one or two comments that didn't really drive the conversation forward. When the Case Manager left, the Social Worker stayed. I fully expected her to ask how we were...and what were we doing to deal with this. I expected some emotional support. First, however, was the problem that all three of today's participants simply talked to us behind nursing screens, while other nurses, doctors, and parents meandered about the NICU. Ummm...couldn't we have talked off of the NICU floor? The Social Worker continued her conversation with us in the same setting. And her emotional support? I kid you not, we got two things: 1) "I'm really glad we have a plan" and 2) "Do you guys feel better now that we have a plan?" I actually know people in the Social Work profession that are wonderful at their craft. For this one, I simply decided that her "work" was trying to be "Social". Because, trust me, the Social of her Social Work seemed like work and seemed like it needed work.
From the parents
You might think that Elisa and I left with the overwhelming feeling like we were in good hands. You'd be wrong. Because one of the key lessons I have learned through this process is that there are plans that are spoken and plans that are enacted. And more often than not, plans stay spoken until the parent forces action. On the way home from the hospital, I called and set Sam up with an appointment for a Cardiologist. I told the scheduler that we were already in consult with Dr. Day (does it count that I heard his name mentioned and turned that into "in consult"?). I stressed that we needed an appointment within 1-2 weeks. We got scheduled for a Monday appointment...with Dr. Day. I immediately called the Case Manager back and instructed her to get all scans, disks, and files over to Dr. Day immediately and that I really had to work my magic to get that Monday appointment, so we really needed to target our efforts to be out of NICU by then.
Then, it was Elisa's turn. My Mom and Dad went to visit Sam around 4:00 (they go every single day as well...so cute) and they informed us that Sam's oxygen was still at 40cc. Ummm...what part of "we want to aggressively wean him over the next 48 hours" includes doing nothing for the first 3? So Elisa headed into the 5:00pm feeding and asked the nurse what was up. The nurse said that the Doctor hadn't included weaning in her orders. Wha? So Elisa just stared at her (in the jungle, the mighty jungle, the lioness sleeps tonight...) and the nurse promptly went over and lowered Sam's oxygen to 30cc.
We found at the 8:00pm feeding that Sam seems to be tolerating the change well. And we have an assertive nurse for the evening, who wants him stable but hopes to adjust him down one more time before the 7AM shift change. Now 7 hours removed from the presentation of the plan, I realize that much of the plan was "we're going to vaguely paint a picture for you to placate you and then we'll see what happens". The problem with that? Elisa and I are motivated parents. And we're simply exhausted. This is a bad combination. We go into overdrive. And we decide that we WILL get Sam home, whatever it takes. As wonderful as everyone has been (and they really have been), I am coming to understand that Sam is and will always be their patient. That's how it should be. But you treat a patient differently than you do a son or daughter. And if you, as a parent, don't start standing up and making things happen, they won't happen at the appropriate pace for your child. And in a blur of feeling helpless (all the time), that realization is wonderful, freeing, and...full of hope.
I say all of this while I stare at my computer screen, more blurry eyed than ever. I'm so tired that I feel like turning the lights off and going to sleep for 3 days. But I won't. I'll get up at 11:00pm. I'll get up at 2:00pm. Elisa will head out just before 5:00am. And we'll rinse and repeat tomorrow. Because that's what we've signed up for as parents. We'll deal with colic. We'll go to great lengths like locking our kid in his room for his (and our own) good. I'll even slip and slide down the stairs in an effort to get my NICU baby his feeding.
I am comforted by one thing, though. I might be tired, but I'm not going insane. It was strange (and strangely wonderful) when I jumped in the car last night at 11:00pm and pulled out of our driveway. As I turned to go up the street, there was Santa Claus, pushing a stroller in the middle of the night. I "might" have turned my brights on just to make sure that this wasn't a recurring dream. It wasn't. He's real. And creepy. And really creepy. But he's real. Thank God I'm not at "hallucinations" level tired quite yet.
Brad
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