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.] 

                                

My lovely wife is busy adoring our sweet little tenacious warrior right now, so I’m going to provide another update.  This one comes from a much different place than the last, and I’m happy to be able to say that.  We are physically and emotionally exhausted, but we have much to be grateful for and much cause to rejoice.

First, praise God for all that he has done and continues to do in Juliet’s life and in ours.  In a close second place, we have to give abundant thanks to our team of doctors, nurses, social worker, chaplain, and other support here at Shands Children’s in Gainesville.  They have been nothing short of remarkable.  

One of the most frustrating things for a parent of a child in this kind of situation, especially when your child is an infant, is the feeling of helplessness.  There’s nothing that we wouldn’t do for any of our kids, and Juliet is certainly no exception, but unfortunately there’s nothing you can do.  Immediately after Juliet’s birth was a particularly difficult time for me, because I was trying to help two people convalesce from traumatic situations.  As we mentioned, Jordan’s c-section was not exactly straightforward, and her recovery was representative of that.  She had a tremendous amount of pain and it was a bit of an effort to get her medication situated appropriately.

I’m sure that there is an actual medical/psychological term for it, but one of our primary challenges was associated with what we came to call the “baby high”.  As you’d expect, left to her own devices Jordan would have spent every single second by Juliet’s side in the NICU.  And, believe me, she tried.  At a certain point, though, the body simply gives out and you have to rest.  This is when you come down off the baby high.  When you leave the baby’s side and all the hormones and endorphins fade, the pain receptors that having been screaming behind the scenes step into the forefront – with a vengeance.   The nights were rough, and a vicious was cycle created that carried over to the days and compounded every night.

The frustrations were growing, and we were in danger of a catastrophic break.  Luckily, whether it was recognized consciously or not, one of our nurses knew exactly how to treat this potentially serious malady.  I may butcher the technical term, and I believe its etymology is from the ancient Greek, but it’s something along the lines of:  snuggle time.

It was as if I could see the demons of fatigue and frustration exorcised before my eyes in a mere instant.  This motherly bond, formed in the womb and cruelly severed at birth, was the precise elixir for both baby and mother.  Juliet’s numbers, which had been varying wildly and teetering on the brink of cause for concern, settled into comfortable levels and remained there.  The sight of my newest princess and my queen together was just what I needed too.

It’s a bit of a process situating all the wires, probes, and devices and a somewhat tenuous situation to actually move her out of the isolette, but we are exceedingly indebted to our nurses for recognizing the value and taking the time to make this happen.  It continues to be one of the highlights of our days at hospital.

 

I don’t mean to gloss over it, because at the time much of what followed felt so imperative and stressful.  But after going through so much and getting to where we are now, in retrospect much of it seems less so.  Every day Juliet seemed to get a little better.  She seemed more active, awake, and alert.  Her motor function improved.  The doctors ordered an electroencephalogram (or EEG) to look at her brain waves.   It reminded me of a science fiction movie, seeing her with all the wires and probes hooked to her head.  I half-expected a picture of an alien spacecraft to print from all the squiggly lines on the output sheet.

 We did receive some good news from the EEG results although her waves were generally slowed (to be expected with the amount of fluid in her head), she did not show any signs of seizure.  Seizures are common and can be seriously problematic in these cases, so we are massively thankful for this small blessing.

On February 3rd, at one week old, the doctors decided it was time to see if our beloved Rose could fly on her own.  Over the week, they had been weaning the ventilator settings slowly and she tolerated it each step of the way.  Although she was still intubated and hooked up to the ventilator, it was no longer providing breaths and the oxygen was set at atmospheric levels.  Essentially, she was breathing room air on her own, just through a tube down her windpipe.  Jordan and I were balls of pure tension.  We sent out calls for prayers to all corners.  We thought she was strong, but we feared the worst.  We were not allowed in the room for the procedure itself, so we filled the waiting room with our anxiety (and perspiration).  

The feeling of seeing our daughter’s whole face for the first time was indescribable.  She was so beautiful.  You could tell that it was a relief for her too.  Our celebration was short lived though.  We stayed with her late into the night, but ultimately our bodies gave out and we had to go home for some rest.  She had done so well all day, and we thought we were out of the woods.  I called the NICU multiple times to check on her into the early morning hours.  What were at first only minorly concerning reports, quickly escalated.  Operating solely on adrenaline, we threw ourselves into the car and raced back to the NICU.  Again, they made us wait outside, and again our anxiety permeated the room.  We were understandably devastated when the attending doctor told us that they’d had to re-intubate her.  We’d been told that the NICU is often a roller coaster ride, but this was our first major dip after mostly encouraging news since her birth.  It was a difficult setback to take, but our resolve would not be crushed so easily.

 

We had never been away from our big kids for very long at all, and definitely nothing close to three weeks, so despite having facetimed most nights, we were extremely excited for our big kids to come to visit.  Nana and Pop (my parents, Steve and Carol) have been an indispensable blessing, keeping Jack and Liliana (plus Beignet and Blanche) while we have been out of town.  It was finally time for them to meet the newest Boykin.  We absolutely beamed at the sight of our first boy and girl.  They were so sweet when they met their baby sister.  It was just what we needed to draw us up out of the depths of our disappointment from the extubation/re-intubation.

 

Having been told that Juliet would require supplemental blood for her heart surgery, we mentioned that my dad is O- and he donates all the time.  The nurse told us that we could set up a direct donation for dad to donate blood directly to Juliet.  What an awesome and special gift to be able to provide life-sustaining blood to a loved one.  Although I’m not the right type to donate directly, I went along for the trip and decided I should pay it forward by donating some of my blood to help someone else in need.  I had never donated blood before.  I hadn’t actively avoided it, I just never really thought much about it or made the time to do it.  Turns out, it was easy, quick, and relatively painless.  It’s going to be part of my regular routine from here on out.  There are numerous benefits to the donor as well that most aren’t aware of.  It’s sort of like an oil change for your body.  It helps regulation of iron levels which can decrease risk of cancer, lowers the viscosity which can improve flow, and burns around 600 calories. That’s like running a 5k while sitting in a chair sipping coffee - definitely my kind of workout.  So donate blood.  It’s good for you, a great for the world at large.

 

I huge sincere “Thank you” to everyone who has inquired about donation.  I actually found out more today about setting up a donation account in Juliet’s name so that anyone can donate in her name at any Life South Community Blood Center (located all over the southeast).  I’ll provide an update when I get everything worked out.  It’ll probably be mid-week with the holiday monday.  Don’t let me slow you down, though.  Do like I did and just use little Juliet as an excuse to get out and donate to the general supply.  Do it in her honor, and help save the life of someone else’s baby near you.  Save someone’s wife, grandma, brother… we all need blood and you never know when someone you love will need blood.  So donate now and start building the up your good blood karma.


[EDIT 2-15-16: I spoke with the group account officer at LifeSouth and we got an account set up for little Juliet Rose.  With this account, you can donate directly in her honor and they can potentially route the blood to her or do an exchange in which they would trade your blood if it is the wrong type directly for O+/- that she will need.  You can donate at any LifeSouth Community Blood Center and give them Juliet's group account number which is 21106-00265.  Thanks so much!]

Praise God for more progress for little Juliet Rose.  I don’t want to spill all the beans because there have been some developments worthy of their own posts, but I’ll just tease it by saying that our little fighter (her Nonni has been calling her Ronda Rousey) is battling and in the face of the small setbacks, she is making progress overall and we remain faithful that we have the right doctors, prayer warriors, and God to carry our little miracle through all of this.  Our most profound gratitude goes out to each and every one of you who has supported us in any way, from adding Juliet’s name to your pre-dinner prayer, to sharing this blog on your Facebook page, to driving our barfy kids 10 hours round trip to see us.  We owe you all a debt we’ll never be able to repay.

I don’t want to just go back over everything that Jordan already said, but I felt like I could give a little bit of a different perspective on everything.

Jordan’s pregnancy with Jack was like a dream.  I was probably too young and stupid to even know what to worry about, but it flew by without incident and I completely took it for granted.  Maybe partially because of that, the miscarriages hit hard.  It’s inexplicable how this little person you never even knew can imprint itself on your heart.  

It was quite an understatement for Jordan to say that the miscarriages were hard on her body.  Because of her blood overclotting disorders, she has to be on blood thinner shots daily from the moment she finds out she is pregnant.  For starters, the thinning causes bruises all over her body and particularly at the injection sites in her belly.  Every time I go with her to an appointment and we get a new nurse or doctor, I’m afraid I’ll be arrested for domestic abuse.  She literally looks beaten.  When Jordan had the natural miscarriage, she was on these shots and they caused or contributed to internal hemorrhaging and she lost a ton of blood.  When she finally let me take her to the ER, she was ghost white and I was terrified that I might lose her.

So for me, it was much more than the fear of losing another baby that made me hesitant to try for a second child for a third time.  At that point, I figured that we should just count our blessings for our little family of three.  But, after a lot of thoughtful discussion and prayer, we decided we would try again.  It is probably content for another blog altogether, but as I’m sure many of you know, battling infertility is a stressful and difficult struggle all its own.  Ultimately, with the assistance of fertility medication, we were able to conceive again.  It was a difficult pregnancy for all of us with Mama on bed rest and forced to miss out on family vacations, sporting events, and lots of things that moms and wives are supposed to be there for.  For Jordan and I, the constantly looming specter of losing another child haunted us every day.

I don’t remember much about Liliana’s birthday.  We were overjoyed to have made it to the finish line.  We couldn’t believe that this little baby had defied all the odds, even after we had been told she was a miscarriage and lost a twin.  I was happily sipping my morning coffee and joking with Jordan one moment, and the next I was spinning the steering wheel frantically trying to regain control, and the next I was awoken by a group of firefighters using the jaws of life to cut and pry the door off of my car in order to extract me. The first things I remember asking them were where Jordan was and how was the baby.  They assured me that they were alright, and I only recall flashes of pulling me from the vehicle and the ensuing trip to the ER.  Once there, the flurry of activity and my addled mind were dizzying, both literally and figuratively.  Strapped to a gurney covered in bruises, with body full of broken bones and a tube hanging out of my chest, I had only a brief instant as they wheeled Jordan past on her gurney to say goodbye and good luck to my wife as they hurried her off for an emergency c-section. 

It is only by the grace of God, that we are all still here and our precious Liliana is a happy, healthy, rambunctious, and very spirited 20 month old.

I never dreamed that we would endure anything like that again.  I thought that without fertility treatments, we would be the Boykin four forever.  Surprise!  When Jordan told me we were expecting again, I was thrilled, stunned, and petrified.  As the idea of it set in, I reasoned that there was no way that we would ever go through anything as trying and traumatic as the last pregnancy and that this would definitely be the last one, so I should take it all in and enjoy it as much as possible.  Fat chance.  Almost from the very beginning, there were problems. The subchorionic hematoma was the first, and of course I thought we would lose the baby again.  But she hung in there, and I thought we’d made it through the trials and would cruise to the end.  Think again.  I knew something was wrong at the anatomy scan.  Our sonographer is a friend and she is usually the first to share in our happiness.  She wasn’t laughing and joking or smiling with us as she did the scan, and when we were awkwardly ushered to a room to await the doctor’s review of the scan, I knew it was bad news.  I’m embarrassed to say now what I feared as “the worst”.  I’d give anything to have a happy, healthy child with special needs right now.

When the doctor told us it was hydrocephalus, I recognized the word’s meaning from it Latin roots, but I had no idea about the condition or the implications.  Again, it’s probably fodder for another type of blog altogether, but I went through some dark times after the diagnosis.  It was mostly selfish pity.  I wanted to know what I had done to deserve what we had been through over the last two years.  I have my many faults, but I’m generally a good guy.  Most people seem to like me.  I’m a hard worker and I’m extremely loyal to my family and friends.  Why isn’t this happening to some a-hole?  Surely that guy who cut me off on the way to work deserves this more than we do.  I wished it on everybody but me.  I tried my best not to feel any of it.  I drank.  A lot.  The state of Kentucky should give me some kind of medal.  I’d like to expand on that another time, but let it suffice to say for now that I haven’t been drunk in nearly two months.

As Jordan said, we never felt quite right about the coming delivery.  That’s not to disparage any of the doctors, except for Dr. Pearson, the neurosurgeon.  I think Jordan was being kind, but I don’t feel bad calling him out by name.  He should be held accountable for how he treats patients.  He may be a skilled neurosurgeon and may even be a great guy, but he treated us like garbage and there was no excuse for it.  He traumatized and belittled us.  There’s a way to present your professional opinion that is respectful and considerate of your patients.  He must’ve missed that class in med school to groom one of his cats.  Oh yeah, the man raises show cats.  And he allows that fact to be posted on his online profile as if he’s not ashamed of it.  That alone should’ve set off the alarms.

 

We investigated changing hospitals and looking for a new neurosurgeon.  We looked at moving to DFW or at least sending Jordan to stay there with her parents in order to be able to receive better care.  The neurosurgeons we contacted had month-long lead times to get in, and we would have to replace our OB and MFM as well, and the whole process just seemed too daunting logistically to add to our overflowing plate of stress.

Then we received the CDH diagnosis.  What seemed like just one more devastating blow in a long line of soul-crushing news, I can only now see as nothing less than a Godly intervention.  Seasoned doctors and ultrasound techs with years of experience diagnosing fetal conditions would not just mistakenly diagnose this serious life-threatening condition.  Because Sacred Heart lacks the facilities to handle a CDH, we were transferred to Shands Children’s in Gainesville (five hours away from home).  Before we even left that first visit, Jordan and I only needed to exchange a look to tell each other how impressed we were by the people and the hospital and how much more at peace we were there.  The decision had been made for us.  All the stress of the logistics was gone and we would deliver at Shands.  The nurses even put us in contact with Ronald McDonald house, so we would have a place to stay.  At this point, it’s hard not to look at this “coincidence” and wonder if Juliet would even be alive right now had the doctors not misdiagnosed the CDH and referred us to Shands.  Again, I don’t say any of this to run down any other hospital, but I just can’t imagine that they have the resources to have been able to give her the care she needed and still needs.

The day of the delivery, I was a mess.  My wife will take great joy at this point in telling how I turned the wrong way down a one-way street on our half-mile drive to the hospital.  One of her favorite pastimes is criticizing my driving.  I couldn’t let her see me crack though.  I felt the weight of all of it trying to be her strength and feign my own. 

At the hospital, it was an eternity before the nurses finally called me to the OR.  It’s a bizarre situation looking down at your beautiful wife’s face and then looking over at her insides exposed.  I could tell that the doctors were struggling to get the baby out, but I kept a smile on my face and kept telling her how great she was doing.  We laughed with the anesthesiologists and talked about what we’d have for lunch. Jordan had now been without food almost 12 hours.  I think that 12 minutes may have been the previous record during this pregnancy.  For most of the pregnancy, her nightstand looked like a junk food truck crashed through the bedroom wall.

Due to the extreme enlargement of Juliet’s head, it took quite an effort to get her out.  When they finally pulled her from the womb, she was completely blue, and the size of her head was, frankly, shocking.  I knew to expect some enlargement, but this was more than I’d ever imagined.  She didn’t cry at all, and they immediately took her to a table on the other side of the room and a team of doctors surrounded her, obscuring my view.  Jordan asked me why she wasn’t crying, and my heart broke again, but I managed to tell her that it was ok, they were just working on her.  I had never felt such relief as when I heard one of the doctors exclaim, “We have a pink baby!” I had never felt such a sense of relief.  I was overjoyed.

When I was finally able to go over and see her, it was a flood of emotion.  She was beautiful, big head and all.  I was so elated that she had survived her birth and so incredibly heartbroken for what I knew she would have to endure now. 

After getting Jordan situated in her recovery, the nurses eventually informed me that I could come to the NICU to see little Juliet.  I sat in a chair next to her in her bassinet.  I looked down at my baby girl with seemingly innumerable tubes, probes, and wires, covering and protruding from her tiny body.  Her little hands and feet were dotted with needle sticks from failed IV attempts.  I sobbed.  With Jordan away in her recovery room, I finally had a chance to let myself break.  And I did.  I had cried about the situation before, but I was crying for me.  I was upset about why all of this was happening to me, and why I was going through all of this.  This time, I wept for my daughter.  She was finally much more than black and white images on an ultrasound screen.  She wasn’t a test or challenge to overcome anymore.  She was my beautiful, innocent, perfect little girl now.  And she hadn’t done anything to deserve this.  I would’ve taken it all on myself in an instant if I could have taken it away from her.  I still would.

I don’t really know how to close this.  I could write a book – maybe someday I will.  At this point, all we can do is pray and be there for her.  We are confident that her team of doctors is as good as any in the world, and they are fighting for her as much as she is and we are.

Our most sincere and humble thanks to all of you who have held us in your thoughts and prayers. We can hardly fathom the unbelievable outpouring of love and support that we have received. We couldn’t do this without you.  Please continue to lift us up.  I don’t know how I could ever express enough gratitude to those of you who have supported us financially.  It is particularly difficult for me, as I’ve always been proud to provide for my family, but we are overwhelmed right now.  It is my hope and prayer that we can get through the most difficult times and use our experiences and resources to help others in need. 

Thank you all.

These people are my strength and my whole world.