The Art of Consumption

by Anonymous 5:05 PM 0 comments

Let’s start off with an update on Miss Juliet.  Last night they removed her cannula and she breathed solely room air just like you and me for the first time (for an extended period) in her life.  She did fantastic!  It is astonishing to see the progress she has made in less than one week post-surgery.  Her heart is functioning beautifully and her lungs have mostly cleared up, so her cardiovascular recovery is beyond where we’d hoped.  Praise God, and thank all of you who have been lifting Juliet up in prayer and keeping her and us in your thoughts.

With respiratory issues primarily settled, the final big hurdle in order to leave the hospital is feeding.  Post-op babies with Juliet’s heart condition generally have challenges associated with feeding.  Apparently, there is somewhere around 16 distinct processes associated with feeding for a newborn, starting with the sucking and continuing through closing of the airway, swallowing, and moving the food into the stomach.  Who knew?  Something so simple that most of us take for granted, is actually fairly complex and takes a good deal of coordination to accomplish.  Due to the need for a breathing tube and feeding tube as well as the fact that several key nerves are in the vicinity of the top portion of the heart where the surgery takes place, there is a distinct possibility of damaging the vocal cords during intubation/extubation or surgery itself.  Quick anatomy lesson: the vocal cords look like two little membranous flaps on either side of the throat that move back and forth to alternately meet in the middle to close the throat or open up to the outsides.  It works kind of like a door on a spaceship in a sci-fi movie.  You know the ones I’m talking about, like this: 

So, when one (or both) of the vocal cords is damaged, it gets stuck in between open and closed.  This is important, because they are supposed to open all the way to breathe, close all the way in order to protect the airway from foreign substances during swallowing, and move back and forth in the middle as air passes over them to generate speech and other vocal sounds.  If damaged, it almost certainly means the baby will require an additional surgery first to implant a gastric tube in order to be fed safely.  It will likely involve another surgery later in life to repair the cords to facilitate proper speech.  For all these reasons, we were rather concerned for Juliet’s vocal cord study.  It would mean a great deal for her future in the hospital and at home.

When the otorhinolaryngologists (I just love that word; Ear/Nose/Throat or ENT docs to most non-nerds) came to the room, I was a ball of tension. I rambled on nervously, asking them about a bunch of little unimportant things and telling them all about Liliana’s bump behind her ear and asking their advice.  When they’d had enough of humoring me, they set out to scope her airway and inspect her cords.  A tiny camera on the end of a long, thin tube was inserted into her nose and guided down the back of her throat.  I watched in anticipation on the nearby video monitor.  Of course, Juliet was no fan of having yet another tube crammed up her nose, so she was doing her best to cry and fuss as this was going on.  So, when the camera finally reached its target, the results were unmistakable -  two perfect vocal cords flapping brilliantly in turn from fully open to fully closed.  Thank the Lord. 

While this was a huge step in the right direction, it was only the first step.  This only gets us through the first few of those several feeding processes I mentioned.  However, I did allow myself a few moments, at least, to rejoice and to be thankful for this small blessing.

Having confirmed Juliet’s ability to protect her airway, Speech Therapy was ready to take the next step.  As I’ve pointed out before, they’re called Speech Therapy, but really in Juliet’s case should be Feeding or Nutrition Therapy or something, but I guess since they are concerned with the mouth, tongue, airway, and vocal cords, it is somewhat interchangeable here.  At any rate, since she’d already proven her penchant for sucking a pacifier, the next logical measure would be to introduce a bottle with a small amount of sterile water just to see if she would latch, suck, and swallow. 

Now, I don’t know if it is more of a maternal or paternal trait passed down, but princess Juliet does not like to be bothered when she is sleepy.  She’s a very content baby and really only fusses on her own when she’s wet or occasionally when she drops her binky.  But she always pitches a fit when a nurse, doctor, or therapist comes in to rudely pester her with their pesky tests, prods, and probes.  Even the simple diaper change (which you’d think would be pleasing), elicits intense squealing.  By happenstance or not, Speech always seems to show up during a nap.  Needless to say, Juliet has not been very compliant with their promptings.  She was able to take around 5 ml of water each of the first couple attempts, but it took quite a long time and plenty of provoking.

The next big milestone will entail a more formal swallow study.  For this, Juliet will be required to drink milk laced with barium, and an x-ray will follow the barium to observe where the fluid goes and ensure that none ends up in her airway.   Because of the requirement for monitoring the flow with radiation, the slow feeding time is incompatible.  The longer it takes her to feed, the longer they will be required to x-ray, and the more she’ll be exposed to harmful radiation.  This is not ideal.  So, for now, the biggest prayer request we have is that Juliet will become more interested and organized in her feeding processes, so that she can safely have the swallow study.  This will determine whether to continue her down the path of normal feeding or to schedule yet another surgery to implant a gastric feeding tube. 

The gastric tube (g-tube) is not the end of the world, and they are frequently temporary, but obviously it would be a major win for Juliet and all of us if she does not need another surgery and recovery.  A g-tube placement surgery would mean additional weeks here for all of us, and would make home care more difficult going forward.  So please, pray that this baby is as hungry as her big ‘ol daddy.

Now for a bit of a more lighthearted anecdote.  About a week ago, as we were preparing to leave the Ronald McDonald House (RMH), one of the ladies who works there mentioned that there was an upcoming barbecue for one of the sororities that supports RMH as part of their philanthropy/community service efforts, and she asked if we would be willing to attend and say just a few words about our experience there.  Because RMH had been such an indispensable blessing to our family, I said of course that I would be honored to speak on RMH’s behalf and to let these young ladies know what a fine organization they are supporting.

Now, in my head, I’m thinking this is like their monthly girls’ get-together for the sorority and there’d be 30-40 girls hanging out having burgers and hot dogs.  So when we rounded the corner at the Alpha Delta Pi house to see some 200-300 people packing the lawn with a line halfway down the block for the extensive catered affair and a live band jamming out on the balcony, I was just a bit taken aback.  When they informed me that I would also have to climb the stairs to the balcony to receive the mic from the band and address the rather large and boisterous crowd from the balcony over the sound system, I was just a tad more unnerved.  The crowd was about half sorority girls and about half frat bros.  Immediately, I’m picturing Bluto from Animal House smashing my microphone like he did the guitar or Ogre from Revenge of the Nerds chucking me out the window.  As a very, very happily married man, I’ll have to be delicate and discerning in how I put this, but… the chicks were hot.  I realize I’m almost old enough to be most of their fathers and, again, very, extremely happily married, but I just wouldn’t be a human male if I wasn’t intimidated by the thought of speaking publicly under these circumstances, to this audience.

Thankfully, my incredible, gorgeous wife voluntarily decided at the last second to accompany me to the stage.  Whether she did this out of loving support for her husband, or to formally exhibit her dominance and possession of me over the crowd of potential rivals, could be a topic of some debate.  In any case, the RMH executive director assured me afterward that my ramblings weren’t entirely incoherent and I managed to hit on the high points, so it was a success overall.  As a side note (and I say this as a Texan), when y’all make it out here for the A&M/UF games in the future be sure to hit up Adam’s Rib Co. for BBQ.  They do a great job, and not just by Florida standards.  Really good BBQ, outstanding sides, and they are great people who provide a tremendous amount of support to the community here.  The catering for the event was largely donated/heavily discounted to aid in supporting RMH.

That was my 15 minutes of fame here in Gainesville.  I’m thankful to RMH for giving me the opportunity to share just how much they have done and meant for us through this difficult time and to share with the girls of ADP how much their fundraising and volunteering efforts truthfully mean to families like ours.  Despite a few butterflies and a lot of perspiration, it really was an honor and a pleasure.

More has gone down since I started typing this post a couple days ago that we’re really excited to tell you all about, but I’m going to keep this one to its originally intended content and try to hammer out another over the weekend.  God bless.

Blue Steel Bonus Shot to Close!