Rockstar.  That’s what Juliet’s cardiac surgeon, Dr. Bleiweis called her.  Early on, there were discussions as to whether surgery was even worth pursuing since it was a strong possibility that she would never breathe or feed on her own.  After surgery, many were certain that she would require a tracheotomy to breathe and a gastric tube for feeding.  One by one, Juliet has left all of her detractors behind.  On Monday, March 14, 2016, six and a half weeks after her birth, Juliet Rose Boykin left UF Health Shands Children’s Hospital in the arms of her mother and I with only the small internal shunt and few scars.

 

Rockstar.

Jordan’s best friend from high school, Alyssa Lawther, flew in that Monday afternoon to meet Juliet.  It was great as always to see her and for her to get to be a part of such a big moment in Juliet’s and our lives.  Jordan and I were so excited for Juliet to get to breathe fresh air for the first time in her life.  We knew all too well how stuffy and stale the air in the hospital could be.  There were times when we emerged from the hospital after days by Juliet’s bedside to be blown aback by the crisp freshness of the outside atmosphere and the feeling of the warm Florida sun on your face.  Though she couldn’t exactly tell us in so many words, I know that it was a pleasant and satisfying experience for her.

The doctors would want to follow-up with Juliet before we left town for good to head home over five hours away, so we would stay in the apartment for a few days.  Juliet did fantastically.   Special thanks to Carol and Buzz Coady who sent us the Rock n’ Play which would become Juju’s first bed outside of a hospital.  She slept great in it - so serene, only waking to eat every three hours or so.  This has been a new experience for me.  Having had two breast-fed babies before this sweet girl, there wasn’t a whole heck of a lot for me to do when a hungry baby woke for a night feeding.  I did my part by staying soundly asleep to ensure I was well rested whatever duties may call the next day. ;-)  This go around, I’ve been an intimate part of the feeding process.  It’s been both exhausting and deeply rewarding.  There is definitely a closeness that is formed through the bonding experience of feeding a newborn that just isn’t built elsewise. 

We continued to diligently attempt to cram every calorie possible into our baby girl, as her weight gain was still a concern.  Later that week, we went in for a follow-up and although Juliet gained about 100 grams in those few days, she was still just hanging on to the bottom one percent of the growth curve.  The doctors gave us a bit of a hard time about it, and it’s difficult not to become defensive after how hard we’ve struggled with her and pushed her to even get to this point.  I try to calmly point out once again just how much she’s had to overcome.  For starters, she had severe hydrocephalus at birth which means a significant volume of fluid was built up on her brain and counted in her birth weight.  Following her shunt placement, she had lost over a full pound as the fluid drained and she endured surgery and the fasting, sedation, and liquid diet that came along with it.  Then, just when she was taking tube feeds well, they decided to open her rib cage up like a pair of French doors and play around in there for a while and send her through the whole recovery again from the beginning.

We just wanted to go home at almost any cost.  We didn’t want to hear about a g-tube again, we didn’t want to hear about more hospital visits or tests.  We missed our kids.  We missed a sense of normalcy.  And we just wanted to be home and be a family again.  After some discussion, the doctors agreed that we could handle her at home and in the care of our pediatrician.  Thank God, we were finally going “home home”.  Or were we…

My cousin Vanessa and her husband Jamie stopped by for a visit on the way to Universal Studios

Around this time we, heard back from Duke University where we had been working since before Juliet’s birth to get her into an experimental stem cell treatment.  There isn’t a lot of literature available on the internet, since they have not published results as of yet, but Dr. Joanne Kurtzberg at Duke has been a true pioneer in stem cell technology and treatment for a number of maladies.  She and her team have treated over 80 kids of various ages with hydrocephalus, and have seen marked improvement versus control groups.  They are currently gearing up for similar trials with cerebral palsy kids.  Stem cells have fascinated me since graduate school, and I wrote a number of papers on the potential promise and ethical dilemmas associated, so I was particularly excited to be a part of this for my own interests and as a firm believer in the promise that stem cell treatments hold, I couldn’t have been more excited to be able to give Juliet this opportunity.  

Duke would be able to treat Juliet either that weekend or the following.  It was extremely tempting to go home and spend a week with Jack and Liliana, but ultimately we decided that it would be best for them and all of us if we stretched this journey out one more week and made the trek to Durham, North Carolina.  Of course, after the wreck with Liliana and everything we’ve been through with Juju, we were terrified to transport this precious cargo for this kind of a distance.  Because of her head size and inability to support it upright, we had to get Juliet a special car bed (basically a car seat, but laying down flat).  Despite our nerves, she did amazingly well on the trip and the trip was relatively uneventful.

Somewhere along the way, we stopped at a sort of tourist trap place to feed and change the baby and stretch our legs.  This was the type of place with lots of crafty cutesy junk and all the different varieties of overpriced roasted and candied nuts and the like.  Jordan found a “handwarming” coffee mug that she just couldn’t live without, and as we were deciding which one she wanted (they’re hand glazed so each one had a slightly different pattern and color scheme) and checked out, the nice older lady working there chatted with us and we explained where we were headed without giving any of the details.  We said thanks and left, and as we changed Juliet’s diaper one more time at the car before hitting the road, the lady came out and said that she just couldn’t let us leave without giving us something.  I told her she was too kind but she insisted and suggested that we go out to eat or something while we are there as she handed me a $50 bill. 

Little angels are everywhere, and going through something like this has been amazing in a way to see just how much good is left in the world and in people.  People really do care about people.  Sometimes it’s hard to tell as everybody is zipping by in their electric cars and on their hoverboards with faces buried in phones, tablets, and smartwatches.  But at the core, when you peel back the layers and remove the distractions, we are all filled with the same humanity and people can’t help but feel that connection and empathize with others.  We continue to be interminably grateful to all of you who have donated to the GoFundMe or have given us gifts directly or have shared the blog to your Facebook or prayer group at church.  We sincerely can’t thank you enough.

Happy St. Patty's from Juju!

We arrived in NC safe and sound but road-weary.  In another little God-given coincidence, our friends Bob and Kathryn Buckland from back in Niceville just so happen to have a second home less than two miles from Duke University Children’s Hospital.  We can’t adequately thank the Bucklands for their hospitality in taking us in, and we thoroughly enjoyed visiting with them and letting them get to meet and love on our Juju bean.

At the hospital, the process was relatively straight-forward.  We checked in and Juliet was checked for vitals and to ensure there wasn’t anything else going on that with hinder the procedure.  Once clear, they begin the process of thawing her stem cells which were harvested from her umbilical cord at birth, picked up by a courier, and flown to Arizona within hours of her birth.  They were subsequently cross-checked with Juliet’s blood sample taken in Florida and shipped overnight to North Carolina, and once confirmed that the blood and cells belonged to the correct recipient, they were once again sent on a plane from Arizona to North Carolina.  After all that has gone into these cells, they don’t want to risk wasting them, so the thawing doesn’t begin until the recipient is at the hospital and ready to receive the infusion.  The thawing process takes a couple hours, so they sent us down to the coffee shop for lunch and chilling.  They gave us a restaurant-style pager with the red LED lights which I thought was kind of funny, but when it went off we couldn’t contain our excitement.

Back in the infusion room, the nurses were super sweet and kind getting us set up and we met the music therapist who asked if we had any special requests for during the procedure.  Yes, you read that right, there is a music therapist who serenades the patients during their procedures.  When Dr. Kurtzberg arrived, she was everything I expected in all of the best ways.  Incredibly petite and sweet but confident and in control.  She arrived with an entourage, which we were told she always does.  As she made final preparations we cautioned her about Juliet’s small, flat veins and told her how everyone who has tried to stick her for IV or blood has had an incredibly difficult time, required multiple attempts, etc.  Dr. Kutzberg felt around Juliet’s hands and feet a minute or two, and then slid the IV into Juju’s elbow on the first attempt without any difficulty.  We were even more impressed.  The infusion itself only took a few minutes, and after a brief observation period, they sent us on our way.  The whole thing was sort of unbelievable after months of preparation and all of the logistics of moving cells and blood and people back and forth across the country, the actual procedure went off without any pomp and circumstance.

The next day, we called in to tell the Duke team that she had done well overnight and hadn’t had any side effects, and they told us we were free to leave town and head on home.  So we did.  We thanked the Bucklands again and set off to our home for the first time in ten long weeks.  We broke the trip up, stopping back in Gainesville for the night, then we cleared the rest of our stuff out of the apartment we’d been so graciously gifted, and headed home. Despite one minor torrential Florida rainstorm, we made the trip with ease and Juliet slept most of the way.

Last minutes in our apartment

It’s indescribable the feeling of seeing our big kids again after so long away and reuniting as a family of five after such a long time and having endured so much.  We are so thankful to God for this blessing and to all of our doctors and nurses and friends and family and supporters.  We are so delighted to be home.

Happy Easter from our three love bunnies!

More from home next time, and so sorry it's taken so long to post this update. Life with three kids ain't no joke!

As it often does, life got rather hectic the last couple weeks with everything going on here and work back home (which I’m doing my best to keep up with remotely), so I’m a bit behind in providing an update.  I’ll do my best to catch you all up on the life and times of miss Juliet.

When I last posted, we were anxiously awaiting the formal swallow study.  The results of this study would determine whether we could even proceed with attempting to feed Juliet orally or whether she would have to undergo yet another surgery in order to implant a gastric/gastronomy tube, or g-tube.  It’s quite the production whenever you are required to go for imaging at this hospital.  Everything is on a basement level, usually down some dark, foreboding corridor through several sets of double doors.  When we arrived, Nicole the speech therapist, met us with a smile and her familiar face provided some relief of the anxiety we were experiencing.  We were each given a leaden smock with a thyroid-protecting neckpiece, and as we were donning our gear Juliet was situated on a sort of pedestal in front of the x-ray.  It’s a somewhat imposing looking setup, but we were extremely hopeful that our little fighter would overcome yet another obstacle.

Essentially, some of Jordan’s breast milk was fortified with barium to act as a tracer for the x-ray.  Nicole would watch the fluid as it enters Juliet’s mouth and follow it down her neck to see whether any would be inadvertently diverted into the airway and to the lungs or whether the full volume would travel the esophagus to the stomach.  There’s a monitor to the left of the apparatus where the x-ray can be viewed in real-time.  It would’ve been fascinating if we hadn’t been so heavily invested in the outcome for our baby’s future.  We had been working extremely hard to get her to take the mere 5 ml of milk that they would need in order to get a good look.  At times, she would take it relatively easily, and at others she would not take any at all.  She’d need to take a decent amount in a reasonably short period of time, as she could only be exposed to the radiation for so long before they would abort the study and consider it a failure.  There were worlds riding on a couple of swigs. 

Three perfect swallows was all that Nicole needed to see.  Our diminutive champion had beaten the odds .again.  Thank the Lord.

This victory would be short-lived, though, as almost immediately the focus shifted to nourishment sustainability.  In order to thrive, Juliet would demand approximately 130 milliliters per kilogram of body weight.  At around 3.7 kg, she’d have to ingest around 480 ml daily.  We just struggled for days to work her up to 5 ml.  We had another battle looming just ahead.

Initially, progress was slow.  We attempted feeds every three hours around the clock.  In light of the importance of all of this, Jordan and I decided to trade off night shifts.  One of us would stay at the hospital overnight to make the midnight, 3:00, and 6:00 feedings while the other got a decent night’s sleep back at the apartment, and we’d rotate each night.  This was exhausting, challenging work.  Juliet was trying, but it just didn’t seem that she would ever be able to consume the kinds of volumes they were demanding.   She was progressing, but in baby steps.

We found it to be quite an achievement when she got over 150 ml for 24 hours, and we should have known that the roller coaster was due for a dip…  Last Thursday, while Jordan was holding her, Jujubee had a series of full-body tremors.  I wasn’t there, but Jordan likened them to shivers - not violent, but concerning enough for a baby with multiple risk factors for seizures.  That evening she had an odd eye flutter that only added to the trepidation.  The doctors immediately called for neurology to send someone down, and before too long the EEG machine was being wheeled to Juju’s bedside.  She hates this thing.  The poor baby was born with more hair that I have and they use this thick, greasy goop (worse than petroleum jelly) to stick the dozens of probes onto her head.  It pulls at her hair and is uncomfortable on her already distressed head.

It might go without saying, her feeding progress suffered.  She backslid not insignificantly over the next two or three days while she was hooked up to the EEG.  The good news: the EEG did not find any seizure events or unexpected abnormal activity.   Thank God.

We were extremely relieved, but again, the celebratory period was fleeting.  With the neurological concerns out of the way, the team of doctors shifted focus back to the feeding.  As Juliet’s numbers were dropping and she was already far short of the mark, they began to apply pressure to pursue the g-tube.  We weren’t convinced.  We knew that she could do it, if she just had the right opportunity.  We fought for her.  We argued with the doctors, we played every delay tactic we could and we bought her more time.  The nights were long, and that made the days weary, but we pressed on. 

 We pulled out every trick we could think of to get this baby girl to eat, we held her sometimes upwards of 14 hours a day.   She continued to make progress.  She continued to surprise us all.  On Wednesday, we had gone to the apartment to shower and change and grab a bite to eat.  When we walked back in Juliet’s room, her feeding tube was gone, and she was dressed in little baby clothes for the first time in her life.  We were ecstatic! She had finally done it, satisfied all the doctors and avoided the surgery…  That’s what we thought… Our hearts sunk when our nurse made her way in and informed us that Juliet had pulled her own tube.  No decisions had been made, and the doctors were still leaning toward the g-tube.  The general surgeon even came by to try to get us on the schedule.  He had an opening Friday, two days away.  Absolutely brutal.  We pushed back to next week.  We just weren’t ready to concede defeat for her.  We still believe in her.

We persevered.  We kept up the feeds.  We stayed up all night.  We started a scoreboard on the window with dry erase markers.  We tracked every drop of fluid our sweet girl took.  We rejoiced with the good feeds, and we lamented in the bad ones. 

At around noon today, the attending physician came in to let us know that we are being transferred from the ICU to the regular pediatric floor, and unless there is some unexpected significant regression… we will be going home early next week.   Praise Jesus.

This is only the beginning of Juliet’s adventures, and the realization that we will truly be doing this all on our own without the help of our amazing PCICU nurses is terrifying.  Thanks again to every one of you for supporting us with your thoughts, prayers, best wishes, encouraging words, gifts, friendship, and love.  We honestly could not have made it through these last two months without all of you.  Please continue to lift us up, that these next few days go well and that discharge and transition home will go smoothly.  Lord willing, my next update will come from home.

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!

First off, praise the Lord for what he has done and continues to do in Juliet's life and in ours.  She genuinely is a little miracle baby.

Now for a few administrative items:  First off, apologies for the ongoing site construction.  I’ve never really blogged before and I’m still trying to figure out how to get the look and the navigability that I’d like. 

Second, I want to apologize to anyone who we have fallen behind in thanking, returning calls and texts, etc.  Things are happening rapidly up here, and there is often a doctor, nurse, surgeon, respiratory tech, nutrition tech, x-ray tech, or any of the other helpful and crucial members of the Shands staff stopping by to talk to us.  We get sidetracked easily anyway, and in our state of exhaustion we hard pressed to remember even to eat.  We’re not ignoring you.  We don’t take anything any of you have done for us for granted.  We love you all and we are extremely appreciative.  Our heads are just spinning around like Beetlejuice most of the time (I hate it when that happens).

Now on to the main attraction….

Our little gladiator has taken on every challenge she’s faced in her short three and a half weeks, and she has heroically risen to the occasion.  After handling neurosurgery at 24 hours old, battling through ups and downs with her head and her respiration, and ultimately readying for battle with her congenital heart defect, she has taken that on stalwartly as well.  Our first time to see Juliet post-op, was one of the most shockingly pitiful things I’ve ever seen.  I thought that she’d had innumerable tubes and probes after her birth, but somehow they found a way to cram even more inside her tiny body this time.

We have the utmost confidence in Dr. Bleiweis, and he assured us that she had done very well and exhibited excellent heart function after the surgery.  For the surgery, Juliet required a breathing tube to be reinserted and the assistance of the ventilator again.  The road back to self-sufficiency might not be an easy one, but we were encouraged by how well she’d done off the vent in the NICU.  We are grateful to each of our nurses, doctors, and respiratory staff that all held out faith in Juliet and gave her the opportunity to try again after failing initially.

We knew that the tube was a necessary part of the procedure, but still it was dismaying to start back at square one, so to speak. 

**BREAKING NEWS** What began as a celebratory occasion just turned harrowing and potentially calamitous.  Jordan was given her first opportunity to hold the baby since her surgery.  We were delighted that Juliet had come so far in such a short time and had shed enough of her hardware to permit for handling.  From the first time she was held, Juliet has proved to be happiest when cuddled.  This time was no exception.  Her numbers immediately settled to even more comfortable levels, with her heart and respiratory rates relaxing and oxygen saturation pegging at 100%.  I love seeing the two of them together like this.  There is just something about that mother/baby bond that I find unbelievably heartwarming. 

As I stood over them doting and snapping pictures with my phone, my bliss was shattered when Juliet began to choke and gag.  I had no idea what was going on at first.  It was honestly one of those traumatic experiences where everything seems to be going in slow motion and fast-forward all at the same time.  Jordan was frantically trying to tell me and her mom what was going on.  She had fluid coming from her cannula and it was going directly into her nostrils.  I looked at the machinery on the wall and tried to figure out what I could do to stop it.  There was no time to trace the line through the octopus' garden of cords, cables, and hoses.   Finally, I realized that I had to remove the life-supporting tubes from her nose.  I reached for the cannula to pull it out, but I was too late. 

My unbelievable daughter, who may never walk or talk, knew exactly what to do and reached her petite, but mighty, little hand up and ripped the offending tube from her face, taking her trans-pyloric feeding tube with it.  Water continued to shoot out of the end of the cannula.  Jordan was soaked, the floor was soaked.  We were all drenched in our own perspiration.

By this point, our nurse and the respiratory tech had made it into the room, and they too were trying to decipher just what had transpired.  Apparently the machine which uses fluid to provide moisture to the delivered air, had malfunctioned, sending steady streams of liquid directly up our infant daughter’s nose.

Jordan put it better than I in the subsequent conference with the nurse, respiratory tech, and the attending practitioner when she said, “…in three weeks of life, to survive brain surgery and open heart surgery, only to be drowned in your hospital room by faulty equipment…”  We were dumbstruck.  As I mentioned, we had discussions with everyone on staff, and we were assured that measures would be taken and the incident elevated to the appropriate levels, but how could we ever be comfortable again?

It’s flat-out crazy that I was in the middle of typing an update to tell you all how wonderfully things were going, when in an instant, we quite possibly could have faced the worst of outcomes.

To pick up where I left off, Juliet did admirably on the ventilator and was quickly weaned.  So, they put her on the CPAP, and again she did swimmingly as they weaned her support.  Next came the high-flow cannula, and she was exceeding expectations until the aforementioned incident.  One small silver lining: while it took a few minutes to get things in order afterward, Juliet was literally on no support whatsoever and she did perfectly fine.  Because of that, the doctors decided she could handle a regular flow cannula.  She continued to thrive, and it is possible that she may get to breathe entirely on her own tomorrow.  What an incredible little girl we have.

Well, this post didn’t go as planned, but really nothing in our lives the past few years has.  I actually had a few light-hearted updates to share, but I'll continue to save those.  We are exceptionally grateful that our sweet little one is doing so well.  We know that it is in no small part due to the fantastic team we have around us at Shands and to the remarkable team of friends, family, and strangers that are keeping Juliet and us in your thoughts and prayers. 

Wow, a lot has happened in a relatively short amount of time.  So I will try to be brief and will probably skip over some stuff, but since today is such a crucial day, I wanted to get another update out.

Over the past weeks, Jordan and I have had much consternation over the effective function of the shunt.  We were so encouraged by the progress over the first couple days, that I believe we had unrealistic expectations.  I have a thought that the nurses may have had some bias in their measurements for the same reason.  We saw a decrease in head circumference of 1 cm each of the first two days post-surgery.  After beginning at 50 cm, at one point she got as low as 46.5 cm.  However, the measurements began to fluctuate and were trending mostly back up.  Our neurosurgeon and his practitioner (a husband/wife team) left the country right after the shunt placement surgery.  So we dragged every neurosurgery resident we could find down to look at Juliet’s progress.  Jordan and I call the residents “little buddies”. At a large teaching hospital like this, most doctors have a "little buddy" that follows them around.   We don't mean it in an insulting way, we just can't remember the names of all the people we talk to, nor whether they are residents, fellows, nurses, research assistants, etc., etc.... We've recommended military-style rank insignia as part of hospital attire, but I don't think it's catching on. Of course, we didn’t entirely trust their assurances that all was functioning as expected and we shouldn’t be concerned.

When the Pincuses (Pincii?) returned from attending their “conference” in Aruba (conference, huh?), we were very relieved to have them examine her.  I’ll skip over some of the drama since it was ultimately inconsequential, but in the end they determined that the shunt was functioning , but she was retaining fluid due to her hydrocephalus being low pressure and simply due to physics.  Because of her respiratory and other issues, she is sedentary most of the time.  While other newborns are picked up, held, burped, and generally jostled, she has not had much opportunity for these movements.  As a result, the fluid was just not able to take advantage of a little push from gravity.  Dr. Pincus recommended as much time upright as possible.  This meant Juliet got a fancy new chair, and more importantly, more holding time for mommy and daddy.

Almost immediately, we began to see progress.  We had noticed when her head did not look good, she was lethargic, irritable, and lost most control of her eye movement.  When her head was improving it was immediately apparent that she felt better, was more awake and alert, eyes tracking better, and just generally a better temperament.  We are so thankful for every little bit of advancement.

Out here in Gainesville, away from home, our kids, our friends, and our everyday lives, it is so easy to become engulfed in everything going on here.  We are so deeply invested in what is going on with Juliet in the hospital, that it’s easy to forget the outside world.  We live and die each day with her successes and setbacks.  Because of that, we are exceedingly grateful for every opportunity to be reminded of just how much our lives are blessed.  We thank you all for the cards, calls, flowers, and care packages.  A specific shout out to the Nundersons for  the BBQ and boat work and to Jason and everyone at my office who contributed to the care package you all put together.  We cannot adequately express how much these things all mean to us.  A very special thanks to our good friends, the Steve and Erica Laine, for making the trip out to see us and bringing Jack and Liliana to visit.  It buoyed our spirits to have a little bit of home.  Our smile muscles must have atrophied in the hospital, because our faces were sore for days afterward. 

Another particular thanks to my mother-in-law, Kim, for making the trip from the DFW area to see us.  I know that the trip was not an easy one for her to make, and the airline certainly didn’t make it any easier.  Delays, missed connections, lost bags, etc. can test the patience and resolve of even the most seasoned travelers.  Whether or not we admit it, sometimes no matter how old we get and how much we’ve been through on our own, there is just no substitute for having your mama with you.

Jumping ahead, this week they moved Juliet out of the NICU and upstairs to the Pediatric Cardiac ICU.  While we were eager for Juliet to take the next step in her healing, we were genuinely saddened to be leaving all of our friends in the NICU.  We honestly miss our nurses, practitioners, doctors, and other staff from the NICU so much.   I’d be remiss if I didn’t say a special thanks to Sandy for everything she did for us and Juliet and specifically the Gator basketball tickets.  It was so nice to have a taste of “regular” life outside the hospital if only for a couple of hours.  Also, I can’t thank Marissa enough for everything you did for us and for working diligently with our social worker to give us the incredible gift of a place of our own.  We are so appreciative and indebted to everyone at Ronald McDonald House, and we will miss our many wonderful friends there (though we have and hope to continue to see and visit with you all at the hospital), but it is a true blessing to have a place we can really call our own for the remainder of our time here.  I also have to mention Lulu by name, your sweetness and caring helped us immensely.  There were nights I don’t know if I could have gotten Jordan to leave and aid her own healing process if it wasn’t for her faith in you and her recognition of your authentic compassion for the babies in your care.

Our stay in the cardiac wing began true to form.  Within hours of being there, Juliet pulled her feeding tube.  And before hitting the 24 hour mark, we’d battled a broken PICC line and a yeast infection of Juliet’s neck.  The infection nearly delayed the surgery, but the PCICU team was right on top of it and managed to have it cleared up in no time at all.

Last night, on the eve of the surgery to repair Juliet’s coarctation of her aorta, we were blessed to have Rev. Debra come to Juliet’s room to perform a baptism.   It was a beautiful little ceremony, and her heartfelt and honest prayer left both Jordan and I in tears.  She even gifted Juliet and us with a lovely impromptu acapella version of Juliet’s favorite song, You Are My Sunshine.  This song is special in our family, and continues to be a favorite of both Jack and Liliana, and we were truly touched.  We were proud to dedicate our daughter to the service of the Lord Jesus Christ, and to pledge to bring her up to follow and trust in Him.

This morning, we got up early after only a few hours of restless, anxious sleep, to go see our cherished baby girl off to surgery.  Everything went smoothly and we had every confidence in the team of nurses, anesthesiologists, and in Dr. Bleiweis, in particular.  After saying goodbye and telling Juliet just how much we love her, we sent her off to the operating room for surgery.  After that, we went back to her vacant room so that Jordan could have breakfast and pump.  It was quite a shock when, after 30 minutes or so, Dr.  Bleiweis showed up at our door.  Jordan later quipped that her first instinct was a Fred Armisen-The-Californians-style, “Wwwwwwhat are yyyooou doing herrre?!”   He explained that the support and anesthesiology teams take a while to get situated, and he usually just paces for a while.  It was good to see him and confirm in person that he was clear-eyed and in good spirits.

I just this very second as I’m typing had to stop to receive word from the cardiac practitioner that Dr. Bleiweis needed less than 20 minutes to do the actual coarc repair and she did very well.  She is off of the bypass now, and it will only be about an hour until we can see her again.  Praise God!  Thank all of you who have been praying and thinking about us and wishing us well.  Please continue to pray for her recovery.   We love you all.

[EDIT 14:05EST 02/18/16 - She is out of the OR and getting settled in back into her room in the PCICU! Dr. Bleiweis came up to talk to us and said that everything went incredibly well and she had great heart function after the repair.  She will remain sedated for a while and will have a difficult recovery ahead of her, but this is a huge milestone.  Please keep us in your thoughts and prayers as we help her through recovery and rehabilitation and help guide her through her various rehab and development therapies.]