Sunday, September 21, 2008

Off Oxygen and Steppin' Down!

As best as I can remember it:

The day after my last post, they took Becca off the nasal cannula. We had joked about her taking the vapotherm to kindergarten, and she almost did it. Every time we took her off it, she would last for a couple of days and then poop out. Finally, it just kind of took, and if I remember correctly, she only had to be on the regular nasal cannula for a couple of days before they decided she didn't need it, either. It seemed like she needed the flow before just because her lungs were so tiny, along with the rest of her, and needed the extra support to keep them open, not so much for the actual oxygenation. Once she hit the magic size, she was fine without it!

THE DAY AFTER she came off of oxygen, we had a big surprise. I mean, we were expecting her to have to go back on the O2 - I think we even kept the vapotherm machine in her room in case we needed it. Just before I left for the evening (to get back to another church meeting), the charge nurse called Carla (who - if you time travel back to 2009 - just had her sweet baby boy yesterday! Yay!) into the hall to talk to her. Carla got an odd look on her face, came back in the room, and said, "Guess what? Becca's moving to Pod A!"

Huh? I was dumbfounded. Pod A is the step-down unit. It's like a different world, even though it's really just another pod in the NICU. It's for intermediate care babies, so the nurses have more babies to take care of, parents can stay in the room, and is usually used for patients who are near discharge. Most of the time, doctors make the parents spend a night or too with their babies and take care of them without the nurses' help so that they (the parents) can make sure they are ready to take on whatever needs their little one has. I think I mentioned on here once that there were parents in the unsupportive support group (which I'm actually going to start working with some soon - in 2009, that is) complaining about having their baby in Pod A because they were expected to do everything for them. I was not very patient with these people because I was dying to do everything for my baby. And to be close to discharge. Like kids in Pod A are. So why the heck were they moving Becca there? She had just come off of oxygen and would probably be going back on it. We had just popped the top of her isolette because she was holding her temperature pretty well. And she definitely wasn't anywhere near getting all her feeds by nipple (bottle or breast, as is required for discharge).

Turns out, though, that the NICU was totally full, and they were getting new, fragile patients in. And Becca was the most stable kid in the unit. That was a first! An exciting first - but a nerve-wracking one as well. The doctor assured us that she wasn't anywhere near going home, and we could be over there for a long time. She also said that we might end up back in the main unit if a room opened up or if she hit a bump. But like they had told us all the way through, when these babies take off, they really fly. And Becca had flown a lot in the past couple of weeks. So she was ready.

I, on the other hand, was not. I've mentioned before how disorienting it is when your baby moves rooms, so you can imagine how it was moving to a completely new setting, as a total surprise, as I was supposed to be driving out to Bethpage for some very important meeting went over. I mean, it was exciting, especially that we would be able to spend the night with her, but I needed some time. Which I didn't have.

Thank God for Carla. She is one of the sweetest, most sensitive, incredibly competent, and ridiculously funny nurses I've ever met. And I can say that now because she'll probably never get around to reading this because she is now a mother. ;) She handled the move for me, while I went to the stupid meeting. Of course, after so long in the NICU, Becca (and John and I) had accumulated quite a bit of stuff (clothes, blankets, books, etc) in her room, so I threw it in bags, kissed my baby, and ran out the door. Looking back, I'm quite sure that whatever meeting I felt like I had to be at was not nearly as important as I thought it was. I mean, look at me now - I'm not even working at the church any more. Would my absence have made that big a difference? I really wish I had been there for the move. It's like a graduation of sorts, a kind of NICU ritual, and I missed it. So thank God for Carla, who shared this moment with Becca (who was clueless, of course), recognized it as a moment, and - as an added bonus - managed to make it over without losing any of our things. Just the amount of emotion stirring up as I write about this great change - the one that I missed - tells me that we've made the right decision in my quitting my job. I know I still won't be there for every moment of Becca's life, but at least now she can really be my number one priority without my feeling so conflicted. Not that a working mother's children are not her first priority - not at all, of course - but I found, particularly given our circumstances, that I was not the best at dividing my attentions - and I feel like this is one moment in which I chose poorly. So again, thank God for Carla - and for all of Becca's nurses who were there to care for her when we couldn't be.

Pod A turned out to be awesome. Like I said, we could room in, though I quickly learned that having a slumber party with Becca in Pod A was, in one way, similar to the parties we had in middle school - you pretty much had to bank on getting no sleep that night. Like, no sleep. If Becca's monitors weren't going off, which they did often, even if she wasn't desatting or anything because she is a squirmy worm, another baby's monitors were, which flashed and beeped on Becca's screen as well. While we could turn out the lights in her room, the hospital was still very much a hospital at night, and the nurses needed light (and conversation with each other) to do their work and stay awake in the wee hours of the morning. And there was a window. Not to mention the fact that my baby was in the room. But it was GREAT, too. My baby was in the room, remember? And we had our own bathroom, and a T.V., and a mini-fridge, and I got to be there for rounds the next morning (when the doctors came by for their daily eval.). It was kind of like being in a hotel. Kind of. Except the "bed" sucked. But, still, my baby was in the room. That was pretty exciting.

The definite down-side of Pod A, though, was the nursing. Okay, that sounds awful. Becca still got great care. But the first few days we were worried because the nurses over there are used to "feeders and growers," not babies with ongoing problems, and they had 3-4 babies each, instead of 1-2. And we were more isolated from the nurses. And we weren't convinced that Becca was ready to be there. But mostly, the problem was that we saw less of "our" nurses.

From her very first day (and night!), Becca had primary nurses, who are nurses that have "signed up" on a baby, so that (theoretically), they are assigned to that baby whenever they work. With a baby like Becca, who was unusual in many ways, but particularly in the way that she was much older than she looked and thus kept fooling her new doctors into thinking she wasn't ready for this or that, it's important to have primary nurses, especially in a teaching hospital in which the attending change every few weeks. These nurses - Millie, Heather, Leigh, Stacy, and Carla - provided the consistency to Becca's care that was crucial. They, like us, could point out something abnormal or assure a doctor that, say, Becca's tummy was always big and didn't necessarily indicate an infection. They were able to advocate for her. And, let's face it: after 3 months with these wonderful women, I was kind of in love with them. You know, in that you're-saving-my-baby's-life-on-a-daily-basis-and-loving-her-while-you-do-it kind of way. And I know they were kind of in love with Becca. We were spoiled by usually having a primary nurse on either the day shift or the night shift just about every day. Because of the way Pod A is staffed, and because there are some NICU nurses who only work in Pod A (and some who never do), we only sometimes saw our night nurses and only very occasionally had our day nurses.

Like I said, the nurses in Pod A were good, but it was just different. The little things started to slip. For example, there was The Great Blanket Loss episode in which our favorite blanket, the purple fishy prayer blanket from Susan Williams that we covered her isolette with for months and months got tossed in the hospital laundry (instead of the laundry we did for Becca), never to be seen again. Not by us, at least. I hope someone is enjoying it somewhere. The blanket wasn't a big deal (though I still miss it!), but overall, we found that we had to advocate for Becca even more, as we were the only consistent members of her care team. Again, not that anyone was treating her poorly, but things were apt to slip through the cracks when you're being passed from nurse to nurse, doctor to doctor, NNP to NNP. We did have some consistency in her therapists, which helped, along with the fact that we had been in the NICU so long that we had rotated through most of the attending and were starting to have repeat doctors and NNP's.

I guess that's why Pod A is Pod A. It makes sense for us to be taking a stronger and stronger role in our daughter's care when she is about to be released into our care. It makes sense. Except that we knew she wasn't about to be released into our care. She still had a long way to go. So we rolled with it, albeit not particularly gracefully. This was definitely the hardest month in the NICU, but I'll get into more of that later. Still, it was an extra-special treat when we had one of our nurses, and I always slept better the nights that Heather or Stacy were on. Even if I was there, too.

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