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.

Tuesday, September 16, 2008

More of the same

From my last post, my reminder to myself and the outline for today's program:

"Hopefully I’ll soon be able to update again and (this is a note to myself) be able to tell you about her growth, my results from the doctors, her moves around Pod E, the milk catastrophe, the unsupportive parent support group, and her parties. "

Okay, I'm totally out of energy today, so I'm just going to bullet-point you through the past couple of weeks.

  • Becca's growth - Um, I think I was going to tell you that her growth had stalled some, but she's picking back up now.  She's been up as high as 1550 grams (3 pounds, 7 ounces) and is currently 3 pounds, 6 ounces.  She's getting 1/2 milk and 1/2 Similac Special Care formula, which is way beefed up - for an average of 30 calories an ounce (which, based on her weight is a TON).  As of last night, she was 14.6 inches long.  She able to wear some of her smaller preemie clothes now, so we're loving all those tiny onesies!  (Note:  she has TONS of clothes to wear, so don't get too excited on your next trip to Wal-Mart or anything.  :) )

  • My results from the doctors - Okay, after weeks and months of leaving each appointment with another couple scheduled from it, I have been released from all of my doctors.  The specialist's best guess about what went wrong is that I was likely pre-eclamptic early on, which caused the placenta to be funky and resulted in her growth restriction.  Apparently, most women with pre-eclampsia do develop it early in the pregnancy, but we don't see the measurable, diagnosable signs until later.  Based on a study of women who had pre-eclampsia and developed H.E.L.P.P. syndrome before 28 weeks of gestation, it looks like I have around a 55% chance of recurrence of pre-eclampsia (to some degree) and around a 20% chance of recurrence of H.E.L.P.P. (which, I believe always indicates immediate delivery).  So....those are definitely scary numbers, but we'll probably give it another try sometime down the line.  I will have to continue to live near Nashville (or another major metro area with good hospitals), as I will automatically be on the very-high-risk track, with lots of extra early tests, visits, etc.  Good to know, but of course right now, we're just focused on getting this little one home.  Also, it looks like I may have a proclivity towards forming blood clots while pregnant (which will also be monitored in subsequent pregnancies), but outside of pregnancy, I seem to be fine there.

  • Becca's moves around Pod E - Okay, it shouldn't be a big deal, but whenever my baby moves rooms, it really freaks me out and messes with my mind.  Our pod (set of 4 rooms, 2 of which are "twin rooms" that hold 2 babies) had been really stable for weeks - until one of the twin rooms developed a mildew problem in the ceiling (not good for anyone - especially preemies, of course!).  Those twins moved to Pod A, and they cleaned up the room.  The NICU census went way up, and they got some really sick babies, so Becca had to be moved into the (now fresh) twin room with another baby.  So after a month of semi-privacy at "Becca's house," we had roommates, which was fine, but it kind of sent me over the edge a little.  It doesn't take much these days.  Anyhow, it worked out fine, though it was a little awkward at pumping time, and after a week or so (maybe longer??  I have no sense of time anymore) we moved back to a private room - even Becca's old room, thanks to super-champ nurse Stacy.  So we're back at "home" now...if only we could live here, too!

  • The milk catastrophe - Speaking of sending me over the edge....that was another bad week.  Ugh.  I'm not even sure I can write about it yet.  It physically pains me to think about it.  Okay, remember all the work I had been doing pumping?  And all the bottle-washing John had been doing?  And how my life had to be scheduled around and really revolve around that beautiful yellow machine?  Yeah, so we were storing the milk in the deep freezer at church and someone accidentally unplugged it.  Almost all of it thawed out, making it unusable.  That sucked.  It especially sucked because a) I had hoped to stop pumping soon and b) my milk supply was starting to dry up.  Because the same hormones aren't released when pumping as when you are actually nursing a baby, it's much harder to maintain your milk supply when you are exclusively pumping.  Given the fact that stress (hmmm...think I've got that?), exhaustion (check), and poor nutrition (like the fast food I eat nearly every day) all contribute to a decrease in milk production, it was no surprise that after 2+ months I was having trouble.  But, after The Milk Catastrophe of 2008, I had to recommit to proving my sweet girl with the best nutrition possible and re-prioritize so that I can keep producing.  So if you wonder why I'm never in the church office before noon or why I don't update you as much as I should, there is a good chance it is because I am a) trying to make up for the rest I don't get b/c I have to wake up every 4 hours, b) trying to stay sane (which is really very hard work these days, no kidding), or c) guzzling as much water as humanly possible.  The upside(s) of this story is/are a) my milk supply has picked back up some and b) some of the very kind folks at Bethpage UMC took pity on my and actually (very exciting!!) purchased us our very own deep freezer, which is now in our kitchen (where I can keep an eye on it!) and chock full of milk (or will be once I get around to reorganizing the milk in the other freezer). 

  • The unsupportive parent support group - Okay, I shouldn't be too hard on those other parents, but really, we're kind of out of their league now.  That sounds awful, but let me explain.  We have been here for over 12 weeks now.  We have had to go back to work and somehow try to do it all.  We live an hour away, and even though we have lots of folks who have offered to let us stay in town, we need to be out in Bethpage for the dogs and for work.  We're looking at many more weeks here.  Nearly our entire pregnancy was grief-stricken.  And, yes, we are ridiculously thankful to have Becca and to be here, but I'm teetering on the edge of sanity here, and I just don't have a lot  compassion?  for parents who are here for a 1-2 week stay.  No, that's not right - I do have compassion for them...but I can no longer identify with them.  One parent at the group kept talking about how her baby was so tiny, "and any procedure on a baby that small is just dangerous!"  I asked her how big her baby was, thinking that maybe there was another tiny one in, and she said that her baby was "415" - meaning not 415 grams (which would at least be in Becca's ballpark), but 4 pounds, 15 ounces.  He was only 1 ounce away from not even being considered premature.  Ugh.  I wanted to say to her, "You know, when they [performed the same procedure on Becca] they had NEVER BEFORE done it on a baby her size.  NEVER, EVER.  And you think you were scared?"  This baby's biggest problems is one that Becca has as well, but we don't even think about because it's so minor in the scope of her concerns.  Ugh.  So I guess they weren't really unsupportive; they were just not the support I need right now.  (By the way, I was very polite through the whole meeting; I did manage to behave myself.)

  • Becca's parties - HOORAY!  We had not one, but two showers for sweet Becca - and there's another on the calendar!  Though they have had to be a bit non-traditional, complete with pictures of the already-arrived babe in arms (or in incubator, more accurately), Becca has had a book shower with some friends in Nashville and a regular shower with the Bethpage UMC family.  Both were SO fun, and we were overwhelmed with gifts!  Becca enjoys her story time (when we catch her awake), thanks to the book shower (and she won't believe all the stories she's got waiting for her at home, thanks to Aunts Lauren and Ashley!), and she is currently wearing one of the onesies she got at the Bethpage shower.  After so much grief around the pregnancy and her -frankly - traumatic birth, it's been great to get to celebrate our adorable - and feisty - little girl.  Her nursery is slowly taking shape (we're waiting on a furniture order to come into Babies-R-Us before we can really get things organized), and I'm determined to have it all set up long before she comes home.  It's therapeutic for me to work on it in the evenings, and John even gets into helping occasionally.  I'm sure when it comes time to actually arrange and stock everything, he'll be on it, too.  I organized diapers yesterday and took an odd pleasure in sorting and inventorying them by size - much like sorting Halloween candy.  I'm a bit weird that way.  By the way, we are good on diapers.  We definitely don't need any more preemie or newborn diapers - especially at the rate she is growing now!  :)

  • New business - Becca is so excited about the birth of her future best friend/boyfriend/PK-commiserator/punching bag, Hunter Isaac Snow!  He was born this morning and weighs in at a whopping 9 pounds, 6 ounces.  He was due a few days before Becca (whose due date, by the way, was this past Sunday), but he's nearly 3 times her size...but I'm pretty sure Becca will be able to take him.  Even though they won't get to meet for a few more months, we're telling her all about him and making plans for big time fun and photo shoots come this January.  So big congrats go out to Jason and Sarah - especially Sarah today, as she had to work for hours on the whole birth thing - she managed not to get out of the whole labor experience like some of us labor-free c-section moms.  :)  (Which means big props to you moms who labored AND had a section!)

Alright, it's pumping time again!  Catch y'all later!

Saturday, September 6, 2008

A series of unfortunate (and mysterious) events...

Finally, I know.  This is actually a post I started weeks ago but never finished.  Now that we get to play with Becca more at the hospital (and now that I'm a youth minister at work), my leisurely internet time is quite scarce.  So now I'll see if I can even remember back far enough to put the past few weeks into words. 

Okay, flashback, just after the post on breathing, I I think that's 3 weekends ago...

I got a call from the hospital that Saturday morning.  Katie, one of Becca's nurse practitioners (who also happens to be Coach Hart's sister, for all you Bruins out there), immediately said, "Becca's doing okay, but she gave us a pretty good scare."  That woke me up.  Becca had (of course) just gotten up to full feeds, but at that morning's 8 or 9 o'clock feeding, she had refluxed and then either aspirated some of her milk into her lungs or (genius that she is) closed her airway to keep herself from aspirating (as in, inhaling some of her milk - not a good thing).  Either way, she stopped breathing, had to be bagged, and even had to have little baby chest compressions because her heart rate dropped so low.  Thank God her nurses were right there and able to respond quickly - further proof that we are, like it or not, right where we need to be (as in, not at home).  When it was all said and done, she was breathing on her own, but so worn out and working so hard that they ended up putting her back on the respirator to give her a break.  She was still breathing over it most of the time, but her tiny body just needed to rest after all that trauma. 

That was scary.

They ran all kinds of tests immediately following, and, of course, stopped her feeds completely.  Her platelets were still inexplicably low (as they had been), but her CRP (essentially an infection or inflammation index) was through the roof.  Like ridiculously high.  Anything over 10 is considered high.  Hers seems to hang out around 0.3 when she is well.  This time it was 301.  Yes, 301.  One of our NNP's said that she's seen babies dying, and their CRP's don't go too much over 200.  So this was weird.  They also drew a blood culture, which grew a particular kind of bug that would also be really weird for her to have, since the 2 antibiotics that she was already on (and had been on for a week), would normally knock that right out.  And she still wasn't acting that sick - just really worn out.  Also odd was that her white blood cell count was normal.  (Normally, your WBC count goes up when you have an infection because your body is trying to fight it off.)  Trying to figure out what was up (and to check for meningitis), they decided to do a lumbar puncture on Sunday.  That's fancy talk for "spinal tap". 

That was scary.

They did the "LP" while we were at church and kept her on the ventilator through it just to keep life as simple as possible for her.  Turns out she didn't tolerate it well.  Well, I didn't exactly like it when they stuck a needle in my spine, either, and I knew why they were doing it.  The fluid they pulled looked good, so they were able to rule out meningitis.  They did go ahead and start her on another antibiotic just to throw what they could at whatever infection might be lurking.  They were able to extubate her that evening, and she was back on Vapotherm - starting again at 3 liters.  That Monday, they restarted her feedings (more on that later) and drew another CRP and blood culture.  This culture never grew anything, and her CRP was, I think, 2.1.  Big difference.  We finally concluded that the initial CRP was wrong because there is just absolutely no reason why it should have been that high.  One of our sweetest and kindest NNP's apparently got quite upset with the lab and, in her sweet, kind way chewed the lab folks out.  That would have been fun to watch. 

Now, back to the feedings.  Thankfully, they were able to bump up her feedings pretty quickly, and she was soon (I don't know - a week, maybe?) back up to full feeds.  They did it a different way, though, and that has seemed to really help her.  Initially, her feeding tube went through her mouth and down into her stomach, so it was a oral-gastric tube.  Now they are feeding her transpylorically, meaning that the tube goes down her mouth, throughher stomach (and through the pyloric sphincter), to the very top of her intestines.  That way, if she had been refluxing all along and we just didn't see symptoms until this major episode, it would be harder for the milk to come back up that far (and through 2 sphincters).  Also (and this is how I know she's my girl), they are feeding her continuously (sweet!) so that she doesn't ever have quite as much volume at once.  This arrangement is both good and bad.  It's good in the sense that she seems to be doing really well with her feedings this way (she's been at full feeds ever since we worked back up to them) and she's growing great, but it's bad in the sense that it doesn't get us any closer to going home.  She still has to be able to take all her feeds by bottle before we can take her home, and now we've got several more steps to go before we can even try the bottle again.  (The tube has to go back to her stomach, then the feeds need to go over 2 hours, then they have to go over an hour, then they have to go all at once (as in bollus feedings), and thenwe can start working on the whole bottle (and/or breast) thing again.  Eventually, we'll probably have to do some kind of suck/swallow study to see if she is refluxing regularly or if this major episode was just a random occurence.  If she does have reflux (more than a normal baby), we'll have to deal with that somehow.  (Perhaps with more meds.)


Also in the meantime, they started looking at her heart and lungs more closely.  They originally started doing echoes (taking ultrasounds of her heart) to see if there was an infection that could be attracting those mysterious platelets.  They didn't find an infection, but they did find some fluid on her heart (a pericardial effusion) and evidence of severe pulmonary hypertension.  I'll go ahead and let you know that the effusion has cleared up of its own accord over the past few weeks (we don't know why it was there or why it disappeared), but the pulmonary hypertension is a bit more complex.

Here's today's physiology lesson: the 2 halves of your heart supply blood to different parts of your body.  One side pumps blood to your lungs, and the other side pumps blood to the rest of your body.  Basically, when adults have hypertension it affects the side of their heart (the left??) that pumps blood to the non-lung part of your body.  Becca, in contrast, has hypertension (high blood pressure) in the arteries (on the right side of the heart?) that pump blood to her lungs.  This could be caused by fluid in her lungs (due to microaspiration that we hadn't noticed) of by some other things that I just don't remember right now.  (Remember, I'm sleep-deprived.)  If it worsened, they were going to treat her with drugs - namely, Viagra.  I kid you not.  Apparently Viagra (under a different name) was originally used for such conditions, until they accidentally discovered its intriguing (and lucrative!) side effect.  It is a blood-flow issue, after all.  At any rate, they have been following up with weekly echoes, and it does look considerably better, even without the medicine.  She still has pulmonary hypertension, but it's no longer severe.  I think they are switching to bi-weekly echoes now, and she'll still be followed closely after discharge, but she's improving.

In the course of all of this drama (and while I was, somewhat unexpectedly, adding youth ministry to my portfolio at work), we also realized that Becca is also now diagnosed with chronic lung disease.  That kind of snuck up on me because she is considered to have it essentially because she is past 36 weeks gestational age and still on oxygen support.  I'll have to save a full explanation of it for another post because it's time for us to go home now, but suffice it to say that she will also be followed closely for that after discharge and will likely have a very sensitive respiratory system for at least her first 2 years.  She has a higher chance of developing asthma, but by no means will she definitely have it. 

And I'll have to leave you hear for now because it's 10:00 on Saturday, and we still have 40 miles to drive before we sleep.  Hopefully I'll soon be able to update again and (this is a note to myself) be able to tell you about her growth, my results from the doctors, her moves around Pod E, the milk catastrophe, the unsupportive parent support group, and her parties.  Sounds like fun, eh?  I will go ahead and tell you that she hit 3 POUNDS tonight! Wohoo!  She's such a big (little) girl, and she's acting like it!  She's officially a full-term baby now (39 weeks tomorrow), and she's acting like a newborn, even though she's 11 weeks old now.  She LOVES her pacifiers and would like you to hold them in for her 24/7.  She's also addicted to her Fisher Price Rainforest crib toy, so it is now on the "To Buy Before Becca Comes Home" list.  It's on the top, now, in fact.  She usually pitches a fit between 6:30 and 7:30 in the evening, and pretty much demands to be swaddled then.  As pitiful as she is, it's great to hear her finally able to wail so loud!  You can actually hear her down the hall now when she's all riled up.  We knew this day was coming...she's little, but she's loud!