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!


  1. Oh, Nancy. Thank you for updating us. I wondered if things weren't going so well since we hadn't heard an update in a while. What a roller coaster! Sending you lots of love and hugs,

  2. Nancy, thanks for the update. I've been checking this web page each day, and have been keeping Becca, you and John in my daily prayers. I know you are so busy and exhausted, and you truly have my ongoing support! I am so sorry to hear that Becca is going through so much! And both of you, too. I'm glad to hear that the pulmonary hypertension isn't as severe as it was, and I am excited to hear that she weighs 3 pounds now. Yeah! Sorry to hear that the parent support group was unsupportive! Yuk!

    Take good care,
    With love, Jan

  3. John & Nancy,
    Thanks for the update, we hate to call & pester when your energy needs to be spent on just daily "stuff". Know that we love you......if you need ANYTHING, call.

  4. Nancy and John,
    I have been checking daily to see if there have been any updates and was so excited today to read Becca's journey even though it's been a long and very winding road!

    I just want you all to know that I pray without ceasing for your sweet family! Our youngest was in NNICU for just two weeks and I know how exhausted I was at the end of each, I appreciate your ability to keep us all informed when you just need to lay your head on the pillow and sleep!!!

    Your story is touching so many lives and God is already using little bitty Becca in such amazing ways! Please know when you feel that your strength is completely gone, there are those of us who care deeply for you supporting you in a blanket of prayer!

    Hugs and blessings,

  5. Nancy, John & Becca,
    It's great to hear that Becca's growing. We are so excited to hear that you get to experience the evening grumpiness that both of our kids had. Enjoy every minute. Don't work at the church too hard and take time for yourselves! We'll keeping you in our prayers.

  6. Wow--what an adventure...just when you think you've seen it all...wham! And you still find time to fill us in with your entertaining wit. No wonder Becca's so amazing...she's got your genes :-)
    How can we best support you, aside from our prayers? What are the things that you think...I wish someone would _______ (fill in the blank)? Let me know. Hugs all around

  7. Sooo good to have this update!!I check the blog almost every day and blogging is a new experience. I appreciate your time and effort to do this with your hectic life. So glad to hear the update and thankful for the 3 pounds and improvements from the bumps. I keep youall in my prayers and on sevelal groups' prayer list.

    Much love to all,

  8. What a journey! 3 pounds - that is AWESOME!! Can't wait to hear about all of Becca's other adventures. Prayers for each of you!

    =0), Narcie, Mike, and Enoch

  9. Our guest room is available to you when and if you need it....Just call 818-0898 or just show up! love and prayers, Todd, Sara and Drew

  10. We love you and are thinking about all of you. We all send our love and good thoughts. xoxo

  11. What a great kid! She is such a fighter! Wait until she is a teenager!!! Lots of love and blessings to all of you! Pam and Jimmy

  12. John & Nancy,
    I'm John's Mom's cousin and have been following Becca's progress through emails...just heard about the blog. Reading what you're experiencing brings back Angel was in NICU for six months. The next time the unsupportive 'parent support group' strikes and you want to talk to someone who's 'been there; done that' please feel free to email me. Aunt Janice has my email. You're in my thoughts & prayers.

  13. Yay! What a great update. 3 pounds! wailing through the halls! I can't imagine what day to day life must be like for yall, but I enjoy that we can all celebrate the victories with you.