Thursday, August 14, 2008

Just breathe...

Thanks for the post title, Cousin Faith. 

Leigh Greer, this post's for you!

Becca's doing well.  She's up to 1020 grams - that's 2 pounds and 4 ounces!  John's giving her her daily bottle right now.  She's up to 15cc's on her feeds, which is more than she's ever had!  She's just under full feeds (which will be somewhere around 18cc's), and she's back to getting a bottle once a day (after a weekend off to let her catch up on breathing).  I forgot to mention in my last post that she had come off the vapotherm, but since then, she had to go back on it.  Now she's off of it again, for now at least.  She may have to go back on it, but there is a massive vapotherm shortage in the NICU right now, so we're hanging out with the nasal cannula. 

Let me try to help you make some sense out of everything I just said.  I have been avoiding explaining the intricasies of her respiratory care because I cannot manage to wrap my brain around it, but I'll give it a go.  All you friendly medical folks out there can clarify for me if necessary. 

The highest level of respiratory support involves being intubated and connected to the ventilator.  There are a couple of kinds of vents that I've seen around here.  Some of them basically breath for that baby, and others send quick puffs of air at a really high rate.  I think some of them are cued by the baby's attempts at breathing, and others just breathe at a regular rate.  They are really complicated, and I know very little about them because I never even saw Becca on one, as (thankfully!) she was only intubated for less than a day (when I was still chained to my bed in the recovery room).  So let's not worry any more about them.

Becca quickly moved to vapotherm, which is kind of a modified C-PAP that is delivered through a nasal cannula.  It looks basically like a regular cannula (not the fighter pilot mask that you may have seen some folks wear to sleep), but it gives a continues flow of air at a rate of x liters per minute.  The "vapo" part is that the air is humidified (even more so than most nasal cannulas), which helps keep things moist.  When she first went on vapotherm, she was on something like 3 liters per minute.  Eventually she weaned down to 1/2 a liter, and they switched her to oxygen "from the wall."  That happened before we moved over to the children's hospital.  When her infection popped up, though, they had to put her back on the vapotherm so that she wasn't working as hard to breathe.  They almost had to intubate her (again, not because she wasn't breathing, but to give her some support while she was feeling so puny), but she stayed strong enough not to have to do it.  After her infection, it took longer than before (or so it seems to me) to wean down again, but last week they were able to take her off the vapotherm and switch to a regular low-flow nasal cannula.  Then, like I said, she had to go back on it, and now she's off it again.  Pirate ship, anyone?

After you come off vapotherm, you get hooked up to the wall (literally), from whence is delivered either pure or blended oxygen.  Becca's on the blended version, meaning they can control the amount of oxygen in the air that is blowing through her cannula.  They can also control the flow.  At the moment she's on 1.5 liters of flow, with her oxygen level at nearly 40% - which tells me that she's likely to be back on the vapotherm as soon as one becomes available.  She's "satting" high, meaning that the level of oxygen in her blood is high (which is good, unless it hangs out too high for too long, which can damage her eyes - weird, I know), but she's usually on around 25% (room air is 21% oxygen), so it looks like the cannula isn't cutting it yet.  The air from the cannula is humidified a little bit, but not much, so if she continues to require this high a flow for a while, drying her out becomes a concern as well (but not a big one, I think). 

Before she goes home, she'll have to be off of all of it.  I think some babies are sent home on oxygen, but since she doesn't have any structural issues or (at this point) chronic lung disease (from being on oxygen too long), she really shouldn't need to be discharged on oxygen.  Overall, she's done very well with her breathing, but she has consistently needed some sort of flow (or pressure), even when she's been just on room air.  Theoretically, she should be growing out of her oxygen needs soon (as in, a baby born at her current gestational age probably wouldn't need much - if any - support), but she's not there yet.  As usual, she'll tell us when she is.  And I'll be thrilled to mark that off our "to do before Becca can go home" list.  Then she's got to take the bottle and hold her temp.  But we're getting there.  I don't see her going home by the end of the month, though, like we had started to think might be a possibility (though a very optimistic one).  So she's made a lot of progress, but she's got more to do...and my patience is running short.  But we'll take her whenever.  She's a keeper.  And I love her!

Saturday, August 9, 2008

NICU Pirates

I haven't posted in a long time, obviously.  For a while, I was too frustrated to post.  Then, I just got lazy, though I'd rather call it "exhausted and busy," as I'm trying to learn to cut myself some slack here.  Every now and then it occurs to us that our life is, indeed, even crazier and more stressful than the norm (which is generally pretty crazy for us anyhow).  But we're used to it now, and in a pattern, so we usually forget that we're carrying a lot right now.  Yesterday, for example, John said, "It seems like it [meaning life] should be easier!"  After I reminded him that our newborn (that we thought wouldn't even live) has been in the hospital for 7 weeks (and an hour away), we just moved, we just started a new ministry (for us), we're trying out this whole co-pastor scheme and working closely together at it, and we're still trying to sell a house in Louisville, he conceded that, well, there's really no way it could be easy.  And it's not.  Especially now that I've gone back to work (albeit part-time), I'm finding that we end every day utterly exhausted, both physically and emotionally.  I'm just ready to take my little baby home.  I'm done. 

People often use the analogy of a roller coaster ride when talking about life in the NICU, and I definitely see what they are getting at.  For me, though, it seems more like the pirate ship ride at the state fair.  You know, the one that constantly goes back and forth and back and forth and back and forth, getting higher and higher with each swing.  And that's the kind of motion that really makes me sick.  Because Becca has been so stable, it hasn't seemed so much up and down as a roller coaster, but we definitely seem to be taking several steps back for each step forward. 

Take last week, for example. 

I wrote on here on July 27th that Becca had hit full feeds.  Just a few hours later, however, they stopped her feeds COMPLETELY.  According to her doctors and nurses, her belly had started looking big and she had been having more spells, which made them suspicious that she was developing an infection.  Apparently it's not all that uncommon for babies to get an infection right after their PICC line is removed; there's a theory out there that a few bacteria lingering in the end of the line are shaken loose when it is removed.  So they stopped her feeds completely (dropping to 0 from the 13 we'd just finally worked up to), gave her IV fluids, put her on antibiotics, drew a blood culture, and (the next day) put another PICC line in and started TPN feedings again.

Big step back.

It had taken weeks to finally get her up to full feeds, and she was only on them for less than 12 hours.  The really frustrating part, though, was that she didn't seem sick to me.  She was still acting like herself, poochy little belly and all.  Obviously, I'm not a professional, and I'd rather be safe than sorry, but this momma was pretty darn sure that she wasn't getting an infection.  I think the timing was just off.  Because Vanderbilt is a teaching hospital, Becca's doctors rotate every 3-6 weeks, as do her primary nurse practitioners.  Her primary nurses, however, stay the same, thank goodness.  Well, the rotation happened to hit right when all of her primary nurses (who know Becca very well by now) happened to be off, so she ended up with a new doctor, new NNP (neonatal nurse practitioner), new day nurse, and new night nurse, all at the same time.  Becca has always had a poochy belly, even before she started eating, and those of us who know her well are used to it.  I have listened to and watched many brilliant and talented doctors, NNP's, and nurses be very tentative with her belly at first and then eventually get used to it.  She's just got a big belly.  (Let's face it; it runs in the family.  ;) )  But when she ended up with all these new folks at once, there was nobody to say, "Let's give her a chance - that's just how Becca looks.  If she's really sick, she'll give us another signal."  And, so,  because we've got to be so paranoid about NEC (it's BAD news), they stopped her feedings cold turkey. 

That was July 27th.  It's now August 9th, and we're just now halfway back up to full feeds.  They gave her a few days of "bowel rest" (great phrase, right?) and eventually restarted her feedings.  When you restart, though, you've got to start at the very beginning again.  So we're back on the long road up to full feedings.  They did keep her on antibiotics for 7 days, though her culture never grew anything, meaning she either never had an infection or they caught it so early that the antibiotics knocked it out right away.  I'm sure you can tell which I thought it was.  Some of her regular nurses and I were quite, um, annoyed that they automatically stopped all feeds instead of backing off some and seeing how she would do then.  When I tried to ask the attending NNP if she had seen Becca's belly normally, I was (for the first time, I'm glad to say) met with some resistance to my input.  Resistance, that is, along the lines of, "I know what I'm doing, thank you very much."  Yes, you do, but, like I said, I've also watched lots of other professionals be scared about her belly and then come around to it.  But it was late in her 24-hour shift, so I'm willing to cut her some slack...but, darn, I wish that this bump in the road - legitimate or not - had not put us back at least three weeks behind.  And that makes me want to make my pirate face, hook my finger, and say, "Aaaargggh!"  I'm a NICU pirate. 

But her time has not been totally wasted!  She has still been growing, and she's now up to 2 POUNDS!  Wow!  What a fatty!  She's also starting to take a bottle, which she's getting to try once a shift.  (Because it takes  a lot of energy to suck - and thus burns precious calories - they limit it to twice a day.)  She's doing pretty well, sometimes taking up to half of her that feeding P.O. (that is, by mouth), though it's usually much less (I think overall, she's taken an average of 12% of the bottle feedings she's been offered).  She's also started breastfeeding a bit, though "feeding" is too strong a word for it.  We're not depending on it to actually get any food (so she's still getting her 8 cc's even when we nurse) - her NNP (named Nancy, by the way!) says that we're just doing it "for fun" right now.  And it is fun!  It's nice to have her so close to me, and I think she likes it, too.  I can imagine, though, how frustrating it must be for new moms and babies who actually are trying to get the whole breastfeeding thing down while trying to meet all their nutritional needs through it.  She probably won't be able to exclusively breastfeed because we'll need to monitor her caloric intake (to make sure that she's getting enough), even when she goes home, but it's nice to be able to do it some now, and eventually, she may be able to nurse a few times a day.  In the meantime, she's up to 8 cc's each feeding (down the tube, unless she takes some of it from the bottle).  With her new chubby weight - 900 grams! - full feeds will be somewhere around 16 or 17 cc's, so we're halfway there. 

I'm awfully proud of her these days!  When I'm giving her her bottle or nursing her and she looks up at me with her puffy baby cheeks and her pretty eyes open, I just melt.  It's like she takes a suck and looks up at me like, "Is that what I'm supposed to do?  Am I doing it?"  It's so cute!  She's pretty much the cutest thing ever. So that's the update.  Sorry it took so long.  I really appreciate all the comments, though.  I read them, even when I'm keeping my own (electronic) mouth shut.  So keep those prayers and chubby thoughts coming!  I'll have John post some more pictures below.  They're adorable!