Rock Star

E-mail of 3/29/2011:

All:

It is hard to believe that it has been over three months since I updated everyone on our favorite little diva.  We have not been sitting idly in that time, I can assure you!  We like to describe our house as "wonderfully chaotic" and, in some instances, I think we may undersell that. Elizabeth honestly relishes the frenetic energy.  She absolutely loves nothing more than to be sitting in her "recliner" (bouncer) watching Caroline and Michael rush around with whatever project/hunt they are presently on (most recently it was a chase where Michael was threatening to have Caroline smell his shoes! (I know!  It's like Norman Rockwell up in here!))  Elizabeth cackles constantly with those two.  Plus, she has decided that her voice needs to be heard in the cacophany as well.  She is usually squeeling and vocalizing to great extent --trying to have her say about the events.  Caroline and Michael just love it when Elizabeth starts "talking".  They frankly encourage it--and if I didn't secretly love it as well, I would be a bit more on top of squelching the protests. 

Elizabeth is no shrinking violet, and has absolutely no problem letting everyone within earshot know exactly how she feels on a subject.  As an example, recently, I apparently woke her up from her nap to change her diaper and do a couple other "upkeep" type things, and I was subjected to her wrath.  She screamed at me, and shot me some looks that made me feel two inches tall.  She was inconsolable.  Yet, when Kathryn entered the room, she cooed like a little angel and gave her one of her show-stopping smiles.  I'm no fool, so I handed over the diva to her mom and went on about my business.  However, whenever I would enter the room again, Elizabeth would interrupt her sweet cuddling and cooing with Kathryn to let out a little vocal protest directed at me.  I was properly rebuked.  While that example is funny and completely normal for a little kiddo, I will fully admit that that incident and others like it fill me with an unspeakable joy.  You see, there was a time not so long ago (January 2010, in fact) when Kathryn and I sat in a windowless basement office with a radiologist who had the emotional depth of an amoeba--and were told, while staring at an MRI image of our sweet unborn child--that our precioius third child would most likely not survive the birth process, and if she somehow did, she would be a lethargic, unresponsive vegetable with no quality of life.  Then, as if to add an exclamation point of insensitivity to that bombshell, we were summarily escorted out of the office to process this little nugget of sunshine on our own. So, now, when I see our little gift squeeling, cooing, and marinating in the happiness of being with her family--expressing her displeasure with a ferocity and her joy with equal passion--I just sit back and thank God for His eternal blessings, for being there to hold us up as we left that basement room, for being so faithful and loving to know that even though the human doctor had proclaimed Elizabeth's limitations, He had full and complete knowledge of Elizabeth's greatness and was not bothered with some doctor's opinion of His creation.  It's an unbelievably cool reminder for Kathryn and I of God's perfect and unfailing plan for Elizabeth.  Preach on, Elizabeth!  We cherish every sound.

We are fast approching an important day in our family--April 13.  That will be Elizabeth's first birthday.  While each birthday of all of our kids is special (in fact, it seems that Caroline and Michael begin a countdown to thiers about six months ahead!) this one will have a particular resonance for us.  It is hard to believe it has been a full year since we first met Elizabeth.  So much has happened.  We have learned so many lessons, been blessed with so many little insights into God's wisdom, His perfection of plan, His grace, His strength, His faithfulness, His provision in times of difficulty, and His preparation of us to handle things we couldn't fathom.  It kind of makes our heads swim. We have been inordinately blessed to watch our family grow exponentially with the arrival of Elizabeth.  Caroline has matured into a such a caring, sensitive little lady.  She has retained her silly loquaciousness, her giddy love for all things new, but has tempered that with a strength I can barely fathom.  She is completely unfazed by her sister's seizures--but, takes the time every single time to pray for her as they occur.  It is the most touching thing I have ever seen.  It is so completely Caroline and such a beautiful expression of her understanding of who is in charge of Elizabeth's well being.  Caroline is my hero in many respects and I love seeing the young lady she is becoming. (but, she is still restricted from dating until she's 40!)   Michael has assumed the role of court jester in our family with his usual zeal.  Michael does nothing halfway.  He always plays with Elizabeth and makes silly faces, funny voices, and generally does anything to make Elizabeth laugh.  And laugh she does!  She lights up when Michael enters the room--clearly expecting to be entertained by him.  But, Michael is also a soft, gentle spirit with her.  I have enjoyed watching him quietly hold Elizabeth holding her hand and being at peace.  He fiercely defends Elizabeth when anyone questions what is "wrong" with her. (She is just a baby, he says, duh!)  He is her knight in silly armor.  He is a very cool kid and we just love him to peices.  (But, seriously dude, we've got to work on those shoes!)  So, we ALL will enjoy her birthday in a few weeks.  We will celebrate Elizabeth's joyous first year--filled--as everyone's years are--with unspeakable joy and bouts of pain, of lessons learned and those yet to come, of God's consistent Hand holding ours as we traverse.  (And a special piece of her birthday cake will be sent to that radiologist who pronounced her limitatons...stick that in your MRI and study it!)

The last three months have also brought some very interesting visits with new doctors for Elizabeth.  We continue to go on Elizabeth's Magical Medical Mystery Tour, where we usually travel to Dallas to have various specialists in various areas stare in wonder at Elizabeth and express their confusion about how she is who she is.  We have, frankly, started to find all of this rather funny--we get some enjoyment at watching doctors of all kinds just shrug their shoulders.  It also gives us a chance to share with these learned people the real reason why she is such a blessed dichotomy.  It forces Kathryn and I into our "witnessing" mode pretty quickly.  Most recently, we had been referred to a Rare Disease Pediatric Neurologist and Geneticist at Children's in Dallas.  He has a very specialized practice where he only sees the most complex issues.  He has a two year waiting period to even see him for a consult.  But, thanks to the nicest Geneticist I have ever met (and we've, amazingly, met plenty) we got in to see him in only two months.  So, two weeks ago, we traveled up there to see this super-duper specialist.  In all candor, Kathryn and I were a bit cynical about how this would go.  We have seen dozens of doctors since Elizabeth arrived and each one usually just shakes their head and just stares.  No idea how to proceed.  We understand the confusion, but also rest easy that our Great Doctor is in control.  So, we fully expected this Genetic Guru to be the same way.  But, God is pretty funny.  He sets you up to think one thing and then, with dexterity, pulls the rug out from under you to show that He is running this show and has myriad surprises left.  We met Dr. Pasqual and he immediately shocked us.  He was very nice and friendly, genuinely interested in us and sweet with Elizabeth.  (usually, we have found that as you progress up the pyramid of medical specialites, the doctors get more and more cerebral and intellectual in presentation.  Their ability to communicate is somewhat lessened.  They are undeniably brilliant, but they lost a bit of the bedside manner in the exchange. I'm not complaining, mind you, just observing.) But, Dr. Pasqual was easy to talk with.  He spent over two hours with us (unheard of!) and went over all aspects of Elizabeth's medical diagnoses.  He put pieces together from her voluminous medical record that we had never thought about before.  And then, when Kathryn asked if he had ever seen anything like this, he answered.  "Well, yes and no.  I have seen some of these things, but not all together.  But" he paused, obviously thinking back "I think I have read about a child with similar things from a study in Spain in the 1970's.  In fact, I have talked to the doctor who wrote that study (he's in his 90's now) and I will have to call him and see if he has some additional insight."  As innocuous as that may sound, to Kathryn and I it was amazing.  First, I have trouble remembering my computer pasword...much less reading some study from the 70's in Spain.  Plus, he was in contact with the obviously retired doctor and wanted to find out more.  While we don't assume that this is dispositive of the issue, it was an enormous relief to know that God was putting this doctor here to help us find out more. It was almost as if God was saying:  "See, guys, I've got this.  We're moving forward a bit.  Don't worry.  Let me put these people in your path in my time frame."  It was a wonderful moment for us.  

Now, let me explain a bit more why this is big for us.  Elizabeth has been perfectly created by God with some neurologic issues.  Her development is not conforming to  any chart or expectation (except God's!) We struggle daily to get her to gain weight.  She eats her super fortified mush all the time, but we fight for every ounce we can get!  We think that there is obviously some metabolic issue involved, but those are notoriously hard to ascertain.  E tipped the scales most recently above 10 pounds and Kathryn and I nearly jumped for joy! As you all also know, she has frequent and significant seizures (which are mostly controlled by medication now!) and further is taking a bit longer to hit certain milestones (sitting up, etc.) We are truly walking into unchartered territory with Elizabeth.  We have no medical guideposts with which to follow or previous cases with which to compare our progress.  Elizabeth is doing great and we are so proud of all that she accomplishes daily, but it is very hard for us parents to know where we are headed or how we will get there.  We are truly breaking ground with her.  God is guiding us and we have cherished the lesson we are still learning about having to give up our fear and worry about the future and lean entirely and fully on His wisdom.  We have nothing else to rely upon.  (And we, in a twisted way, kind of love that!)  So, when God gives us someone who may allow us to see a glimpse of where we are headed or some guidance on a small aspect of Elizabeth's make-up, we are almost giddy with excitement.   

Anyway, later in our visit with Dr. Pasqual, he called in two other neurologists who he worked with to meet Elizabeth and see her.  They were also very nice and kind.  We visited with them, and one lady was talking to us while examining Elizabeth.  Elizabeth reached out and held her finger while she looked at her.  The neurologist smiled and continued to talk with us.  Elizabeth never let go.  Soon, this lady looked at us and asked how we were doing.  (We never get that question!)  Kathryn, my simply amazing wife and steel magnolia of epic proportions, immediately started to share the reason why we weren't curled up in a corner wimpering like idiots.  She boldly witnessed to these three neurologists--sharing that our strength and peace comes from our faith in God and His provision for us.  She then told them that God would never leave us or Elizabeth and that Jesus was the reason we could all have hope for the future--whatever the outcome.  It was a beautiful moment that I will cherish.  My sweet wife, who hates any attention or focus on her, boldly just told them all about it!  And, in a moment of awesomeness, I got to witness three neurologists of amazingly high academic learning in tears--hanging on Kathryn's every word.  Unbelievably cool.  My wife rocks!  I looked down during this conversation and Elizabeth (that little miracle) just kept holding onto that neurologist's finger with all her might.  It was as if she was in her own way making sure that doctor heard everything her mother was saying.  (And, if you all don't already know this:  Kathryn is pretty much the most amazing individual I have the pleasure of knowing.  She is a stunning, strong, spitfire of a lady who daily teaches me to be a better person.  I'm still not sure why she decided to marry little ol' me,  but I'm honored she did!) 

After Kathryn had finished, the neurologist holding Elizabeth's hand had the biggest smile on her face and she looked up and said "Well, Miss Elizabeth is quite a rock star!"  Elizabeth let out a little squeal and let go of her hand, apparently happy that she had been recognized for her rock star status.  It was a really wonderful moment.  In sum, that appointment was exactly what Kathryn and I needed to encourage us that this medical journey was not some Sisyphean effort--where we roll the stone of Elizabeth's myraid diagnoses up a hill to only have the unique nature and mystery of thier combination cause it to roll down again.  In other words, God put those doctors in that room to be an encouragement to Kathryn and I to continue to search for a medical route to explain the miracle we daily see. 

So, we are now back in our old routine--wonderful chaos--feeding Elizabeth and watching her mature and grow at her pace--seeing the awe-inspring ways that this sweet little person is pointing people who meet her to the wonder of her Creator.  We have our good days and our bad days, but we are constantly at peace because of each of your cherished prayers for Elizabeth.  We remain truly humbled by your interest in Elizabeth and our little family.  We thank God every night for the friends, family, and acquaintances who have been such an essential and encouraging part of this journey.  We remain in constant awe of God's blessing, His faithfulness and His promise.  Now, we just need to find a way to contain this rock star diva and get her to eat her mush!

Matt

Merry Christmas

E-mail of 12/16/2010:

All:

 It has been several months since I updated each of you on the amazing results of your continued prayers, thoughts and unwavering support.  Today is a particularly ironic choice for us to bring this update, as it is the one year mark since we had our initial appointment with Kathryn’s OB/GYN to have what we thought was an innocent and routine sonogram to determine the gender of our third kiddo—and were instead presented with the unimaginable and terrifying four words that—even today—seem to hang in space: “We see some anomalies.”  As each of you know, this single moment one year ago served to bring that always deceptive house of cards that Kathryn and I had built around our family’s health crashing down.  Now, please don’t read that last statement as some sort of negative dirge on our circumstance.  Because, my friends, nothing could be further from our thoughts now. We have a beautiful, vivacious blessing of an eight month old girl in our arms who is an integral (and somewhat diva-licious) part of our family—a strong fighter who teaches me more about how to live boldly and confidently than anyone before her—an innocent vessel through which I daily see the wondrous faithfulness and love of a God who has become more personal to me than ever before.  There are no negative things we can say about where we are—especially when faced with Elizabeth’s silly grin (usually framed by the most obnoxious pink ruffly outfits you have ever seen!).  As I said months ago when she first arrived here to rock our world—Elizabeth was simply perfectly made by God—it has just taken us a while to figure out exactly what this perfect creation entails…and we are still learning new aspects of it every day.

To bring you up to date:  Elizabeth was released from her little spa vacation at Medical City in late August and since then her seizures have been pretty well controlled by her new anti-seizure medications. We have had some periods when her seizure activity was more off-kilter than others, but, on balance, she has been much improved.  To give you a little insight into what “much improved” is:  She only has about 1-2 seizures a day (and these are not usually significant).  While to many that most likely seems awful, it is not anywhere as bad as the state we were facing in August that necessitated her little stay at Medical  City.  Many times the seizures are subtle and only Kathryn and I notice them.  Caroline and Michael (Elizabeth’s proud defenders and somewhat over-protective guardians!) have been nothing short of amazing in dealing with this new aspect of their little sister.  Last night, as an example, Caroline was holding Elizabeth (“Lizzie Leigh” to her older sister) and she had a pretty significant seizure.  Our brave and unbelievably strong eight-year old girly girl just sat there holding Elizabeth as it happened and stroked her hair repeating our little mantra:  “We love you, Lizzie.  We love you.”  Kathryn was right there, and soon Elizabeth emerged from it.  I hesitate to say this is “normal”, but we experience it more often than not.  Caroline just shrugged it off and when I asked her about it later, she just said it was no big deal—she had it covered!  Amazing.  Elizabeth gave Caroline her big grin that she reserves for her beloved big sister, and Caroline just started in again telling E of her day and all aspects of it (last night was about how the Lincoln Memorial is on the back of the penny and that Lincoln has a statue there where he is sitting down…)  Thankfully, Elizabeth listens very patiently, and even seems interested in this wondrous educational opportunity.  Caroline is thrilled to have someone to “download her day” to, and all is well.  Caroline is such a blessing to us, and she is our proud “little momma”. 

In an interesting turn of events, after we regulated the seizure activity and got that under control, Elizabeth apparently felt that she was bored with our descent into barely contained chaos, and decided to throw everyone a bit of a curve ball—she stopped taking the bottle.  Not a subtle gradual reduction in intake to ween herself off of the bottle—no, our little diva just flat out stopped taking the bottle.  Cold turkey.  (At least when she makes up her mind—she unabashedly lets her “no” be “no”!) Now, Kathryn, the steeliest of Steel Magnolias, immediately shifted gears and started to experiment with what Her Majesty actually would take for food.  I will admit that it caused us both no small amount of stress as we tried to figure out this little mystery.  Kathryn, though, was able to pretty quickly ascertain that our little gourmet was wanting to eat cereal with a spoon.  Enough of that baby stuff!  Elizabeth wanted to be a big girl.  So, at the whopping age of five and half months, our blessed little girl who was supposed to be behind and developmentally delayed had just leapfrogged those doubting doctors and decided to take semi-solid foods WAY early.  Who can explain that?  Well, not one doctor or health care professional can wrap their heads around it.  Our beloved pediatrician just smiled and shrugged and said “well, she befuddles me!”  God is pretty awesome.  He obviously was working in Elizabeth on this simple little thing and used a scary and panicky turn of events to show Kathryn and I that maybe—just maybe—we should trust that Elizabeth is fiercely loved by Him and is defiant of being boxed into a normal pattern.  Put differently, her little rebellion—while stressful—was a small example of Elizabeth defying the expectations and showing unabashedly that we should lean on God and quit trying to predict the unpredictable.  This ride with Elizabeth is going to be unique and not according to any textbook or study.  (Oh, and that silly little doctor who told us last January to not even expect to bring her home…I gladly and joyously revel in her mistake!)

So, now our days are filled with feeding Elizabeth her super-fortified cereal mush (supplemented with olive oil and Karo syrup for added calories!) at every turn and getting her weight up…and watching with no small amount of joy at the gradual exposure of a little personality in our little lady.  She is quick to laugh and enjoys nothing more than watching Michael run about and dance!  He is her entertainment, and those two enjoy many inside jokes.  No one can make her laugh like Michael.  Michael’s infectious joy and fun is not lost on Elizabeth.  He loves to make her laugh and always knows how to make E smile.   She follows anyone around with her eyes (tracks) and grips onto her blanket or someone’s shirt like a pro.  She likes to feel her hair and hold hands with whomever gets to hold her.  She is most definitely “present” and does not shy away from letting anyone know her true feelings.  She has most distinct opinions on things and does not hold back on letting us know.  Any of you who have been around her know that she has different smile for different people and it is beyond obvious that she recognizes different people.  She is sweet and loving—enjoying nothing more than being held and cuddling.  Every one of these daily occurrences--milestones in her development into the lady God designed her to be-- were absolutely dismissed by every doctor we visited starting last year before her birth.  We were told over and over again that she would not breathe, eat or function on her own, that her conditions would cause her to be vegetative and lacking in any developmental function.  I challenge anyone who meets her to see those negative predictions in our little blue-eyed diva.  God was holding her in His hands from the beginning—forming her exactly as He wished—knowing that the dire predictions would not only be mistaken, but that her defiance of any expectations would be a glorious testament to His faith and love. 

Now, do not be deceived.  Elizabeth does have some developmental delays.  She does have issues with growth and weight gain—she has some neurological challenges that she is facing.  Her long list of “-ephaly”s and “-ism”s is a bit daunting when you look at her medical records.  But, I would calmly encourage anyone to turn their eyes from that cold medical record that lists terms and names like some laundry list of unachievable obstacles and focus instead with steadfast clarity on the God who made her—who formed her completely with all –ephalies and –isms intact, but also with a soul—an iron will—that pushes past our finite human understanding and beams forth with unexplainable joy.

 Kathryn and I have grown so much in the past year—having to face our worst fears head on, learning to cling to each other—and most importantly our Heavenly Father—in seemingly endless times of uncertainty and negativity, learning far too much about neurological development and genetic/metabolic syndromes (and meeting a cavalcade of interesting and wonderful medical personnel along the way!), leaning on each of you in our support for these crazy times, laughing at the simply unexplainable being shown to myriad people without our effort, embracing our roles as parents to Elizabeth, Michael and Caroline and being fierce defenders of our family and our peace.  We haven’t figured it all out—not even close.  We struggle with the unknown and the fear of constant change.  We have our good days and our bad ones.  But through it all –and in fact, because of it--the unimpeachable peace of God and his comfort has enabled us to not only experience this event in our lives, but to appreciate in some small way the amazing way God works to move us all closer to Him.  This life is not some boring pre-game show before the main event.  This is the testing ground.  You cannot divorce yourself from the hard times and try to revel in just the good times.  All events work for the glory of God.  You may not enjoy them now, but I guarantee you’ll appreciate the lesson later!

So, in that vein, we come full circle back to that scary statement of four words uttered a year ago today: “We see some anomalies”.  Kathryn and I could easily choose to look back on that as the beginning of the fear, uncertainty and doubt…but, instead we choose to look at it as the beginning of a wonderful journey (not yet even close to completed!) of meeting Elizabeth Leigh Rowan and all the unique wonder she brings with her.  We see it as the beginning of a long journey of discovery about God’s faithfulness to us in the midst of unknown fear; the calm loving hand He offers to us to pull us up from our self-created worry; His perfect plan for imperfect people; and His unfaltering glory in all things--no matter how seemingly hopeless. 

 You know, at this time of year, we celebrate the birth of another baby who arrived under much more stressful times for his parents—much more hopeless outlooks on the fate or value of his life—much more restrictive expectations of his role in this world—and we see how God’s perfect plan turned those expectations on their ear in mighty and miraculous ways.  Because of that little baby’s birth, our little girl is a recipient of the grace that baby personified, she is loved by Him now and has hope because of Him.  In fact, we all do!  So, Merry Christmas to each of you!  We rejoice and give thanks even more this Christmas season as we are humbled by the love of the Father.  Thank you for your unfailing support and constant encouragement.  We stand amazed at how blessed we are in every way!

Matt & Kathryn

Diva in Residence

E-mail of 8/16/2010:

All:

At the risk of epic understatement, it has been quite a week!  Elizabeth has been awesome and even been minimally compliant with all of the poking and prodding.  However, we all knew the diva would rise up and we have reached that Rubicon.  At one point, she had a red sock on one hand to prevent her from messing with her IV, which was somewhat comical as she would raise the "red flag" when she was about to make a statement.  She had an NG tube for feeding which was NOT popular (in fact she had summarily removed it while Kathryn had turned her back for two seconds last week.  That little rebellion was short-lived!) and a blood pressure cuff around her ankle that she took great joy in kicking off at every moment, sending nurses running in only to find her giving them that look of imperious pride in her accomplishment.        Yesterday, she had been seizure free for 48 hours and was frankly looking around as if to say , "Really, guys, what else do I have to do to get this tube out of my nose?!". So, our great doctor, Dr. Olson, took pity on Elizabeth and authorized the removal of the tube and the sock.  I should have warned him that this would only feed the diva-tude... In fact, we were thrilled to have these things gone. 

Elizabeth is doing well.  She has not had a seizure since Friday and is feeding like a champ. (and who says we can't do bottle feedings!  In your face evil dietician lady!) The medication cocktail seems to be working well and she has stabilized.  The doctors are all frankly astounded at how fast she has recovered and popped back. I could have told them about Elizabeth's knack for surprises, but it takes all the fun out of watching her and God work.  So, now we are watching her close and if there are no hiccups we could be home by mid-week. God is good...all the time!

Thanks again to each of you for your invaluable help, sweet notes of encouragement, and visits.    Kathryn and I are truly humbled by the prayers of you warriors. While this week was scary and stressful, it was also another opportunity to see the wonder and faithfulness of God working His mighty work.  It is simply astounding to see Him using a little 10 pound wonder to further His kingdom.  Thanks to you all for everything.  We aren't out of the woods yet, but we are enjoying the walk a bit more today.

I have attached Elizabeth's morning glamour shot.  She is rocking the new hairdo and is exhibiting that diva-tude with flair.  She's a rockstar! 

Matt (Head Roadie)

Riding the Updrafts of Joy and Gusts of Gravity

E-mail of 8/3/2010:

All:

It has been several months since Kathryn and I updated everyone on Elizabeth.  I am quite sure many of you were glad to have the repreive of having to read my overly wordy updates on our youngest joy, but much has happened since our last visit and it merits an e-mail.  First and foremost, Elizabeth is doing really well and continues to simply astound myriad doctors, therapists, nurses, and caregivers.  She is apparently ignoring the learned diagnoses and just plugging along as she sees fit.  Kathryn and I are convinced that she and God are just laughing it up at us silly adults trying to explain the inexplicable.  I know she takes a good bit of joy in just doing what she should be doing.  Every day is a new glimpse into the simply perfect creation she is, and the indescribable faithfulness of God in giving us this miracle.  She rocks!

 Kathryn and I also wanted to express again how humbled and honored we are to have such a strong and valiant group of people praying for Elizabeth.  We have felt the strength and peace of those prayers, and are so thankful for them that we cannot accurately express it.   Elizabeth has been lifted up from the beginning and we thank you all for that.  Adding to this overwhleming support, Kathryn and I have been amazed at the width and breadth of this beloved group of persons.  Elizabeth and her unique story has been told to so many who we do not know, and we frankly rejoice for that as her story is ultimately and basically one of the wonder and perfect power of God to show Himself in the most basic of things and exhibit His perfect and unfailing love in ways one would never expect.  What an awesome little vessel to show the power of God.   Each of you has been so essential to this.  We thank you deeply and truly.  It is not enough, but it is fully heartfelt.

Elizabeth is three and half months along now and is growing "like a weed", as Michael likes to say.  Kathryn and I have been borderline obsessive/compulsive about feeding her and making sure she has all the nutrients she needs to grow.  I swear that if you asked me six months ago if I would be obsessing over high-caloric formula and proper additives to increase intake, I would have laughed.  We have basically been carbo-loading sweet Elizabeth to get her weight up and turning the corner.  (It is the exact opposite of what I am trying to do with myself...Ironic.)  She is tipping the scales at about ten pounds and Kathryn and I beam like Don King at every weigh -in.  (My hair is also starting to resemble that...)   Of course, since this is still Elizabeth and the lifetime struggle for control and power has begun in earnest with her, she does horse around with the bottle at every feeding a little bit to make sure we are paying attention.  Kathryn is on it and has tried to stop that.  She's a wily one, that Elizabeth. 

Elizabeth loves to kick around and move.  She is not still and quiet!  Based upon the pre-birth assurances of the medical team that she would have low muscle tone and not be very active, we beam with pride when she kicks for hours and proves that little assumption wrong.  She adores her brother and sister and, frankly, we are starting see the three of them formulating new ways to team up against Kathryn and I.  Caroline is our little mother, embracing her role as planner and observer of all things Elizabeth with gusto.  She watches her like a hawk and takes no small amount of pride in telling Michael when he wanders too close or needs to back away.  The girls have a special bond and Caroline is constantly picking out her outfits and deciding what she might need to know about for the day.  Elizabeth takes the orders well (better than I do!) and even seems to be relaxed while Caroline opines on the wisdom of library book card use or the necessity for the family to purchase Command hooks for her room.  Michael is Elizabeth's buddy.  She can be reading us the riot act and when his little curly head walks in she calms down and coos.  He loves to get in her face a bit and pretend to be hurt when she punches him.  He has songs for just her and loves to cuddle with her.  He wants desperately for Elizabeth to begin to eat Oreos (as he thinks these are heaven!) and is schooling her in the greatness of Buzz Lightyear and Wii Resort.  They are a dynamic duo, for sure. 

Kathryn and I have been so thankful to see the kiddos forming a family unit around Elizabeth.  She recognizes them clearly and can track things better than Lewis and Clark.  All of these "milestones" are things we are so blessed to have experienced with Elizabeth.  We continue to be amazed at God's provision for us and His winks at us with her development.  Elizabeth is a wonder and we enjoy learning about her together. 

A couple of weeks ago, Kathryn and I experienced a little "gust of gravity" as I like to call it.  Elizabeth was going to her geneticist and started to have seizures in the lobby.  We knew that this was going to be an issue eventually, but we had no idea that it would manifest itself so quickly and without warning.  Put simply, beginning that morning Elizabeth started to have major seizures about every hour.  I cannot think of a more terror-filled and helpless feeling than having to watch your little baby have a seizure and know there is nothing you as a parent can do, except hold her.  Kathryn and I got a lot closer to God that day.  We basically spent the day holding Elizabeth and praying constantly.  Thanks to our crack team of wonderful doctors, lead by a wonderful pediatrician who is a blessing from God, we immediately began the process of figuring out what anti-seizure medication to put her on to control them.  But, this required consultation with Elizabeth's pediatric neurologist and that took time.  They worked hard to get the medicine to her, but simple logistics caused the wait to be about 36 hours before the right prescription was determined.  That 36 hours was a huge test for Kathryn and I, but more importantly, it was a wonderful time of blessing.  I know it sounds wierd, but God knew that we all needed that time to be with Elizabeth and learn some lessons.  In these gusts of gravity, I am convinced that how you orient yourself will determine the outcome.  If you are caught leaning back, you will fall on your butt and curse the situation.  If you are leaning forward, you will fall to your kness.  And, that is where you need to be.  The lesson is there to be learned, but you've got to open yourself up to it.  So much of our lives are spent walking like normal...regular gravity keeping us secured to the ground...and we begin to forget that a simple force is holding us to Earth.  That's why I like the description of a "gust of gravity"...sometimes we are pulled down by an unexpected weight and God wants to see our reaction. 

Anyway, during the 36 hours, Kathryn and I would take turns holding Elizabeth and watching her sleep between seizures. (the seizures had a sedative effect on her).  So, we both got to experience a time of peace hourly interrupted by a time of intense activity.  We used this time to just encourage Elizabeth and tell her we loved her, and to pray for her and over her.  There was nothing else we could do.  For us Type A "fixers" that was highly frustrating.  But, God knew what He was doing.  He gave us this time to frankly show Caroline and Michael how Elizabeth had been made and how to react to a scary situation.  Caroline is our worrier.  She is a sensitive soul and likes to "marinate" in fear.  Kathryn and I were so worried about how to broach the subject of seizures with her for fear that she would be justifiably scared by them and react accordingly.  But, God presented us with the very thing we feared with no warning, so we just had to buckle down and present it to her.  And, dear friends, God just laughed as our Caroline walked up and amazed us.  Elizabeth was having a seizure and I was holding her.  Caroline walked up and put her hand on Elizabeth's arm and, without prompting, stroked her arm gently and said, "It's okay Elizabeth...it's okay.  We love you, Elizabeth!" in the most comforting voice I have ever heard.  She was not scared or excitable--intimidated or worried--she just knew that she needed to encourage and support Elizabeth.  Caroline amazed me right then.  It then gave me the opportunity to talk to her and Michael about the fact that God had made Elizabeth uniquely and that this was part of who she was.  It was nothing to be scared of, and they were just to get us if she decided to have another "spell".  A horrible and frightening situation became a beautiful teaching moment for me and a humbling acknowledgment of the strength instilled in my seven year old girly girl.  So, in that way it was a blessing.  Also, it gave Kathryn's and my parents the opportunity to see the situation and what to do if something should happen.  While I would never wish this on anyone nor want to experience the terror again, I thank God every day for that time.  It was a gust of gravity and we were forced to fall to our knees.  A beautiful moment that exhibited terrror and joy in equal measure.

Elizabeth is now on anti-seizure medicine that is working well.  She has not had any more seizures since going on the medicine.  She is alert and active and back to her old self.  While that was undoubtedly a hard week, it was a joyous week, too.  It re-instilled in Kathryn and I the comfort that God is in control and watching over all of this.  We were reminded that He knitted Elizabeth together exactly as He wanted and that she is ultimately His child.  She is an amazing witness in her young age of how reliance on our fragile and human understanding can blur the blessing.  Faith is a funny thing.  It is interminably hard and cannot be understood by my simple mind, but it is a way of letting go of the strangehold of control a bit and relying on an unseen force to take the wheel.  When explained like that it sounds crazy, but I can say it is also absolutely essential to Kathryn and I.  Explanations are fine and nice--a pretty box to place our situations in--but God, for some inexplicable reason, has chosen to allow Elizabeth to work outside those explanations and be a testament to the wonder and glory of her Creator.  Kathryn and I do not deserve this blessing, but we are doing our best to let Elizabeth shine for the world to see and attempt--though futilely--to explain the inexplicable.  So, humor us if you have heard the story we are telling, sometimes we just feel compelled to say it. 

The lessons in all of this are myraid and multi-layered.  But, Kathryn and I know that we are being shown how to rely on faith while seeking knowledge and assistance from the best we have to offer.  We crave an answer when really the questions may have just begun.  In essence, the answer is not in what Elizabeth has or is diagnosed with-- it is in thanking God for the gusts of gravity as well as the updrafts of joy.  It is appreciating the gift of every day and resting in the knowledge that there is a greater cause.  If it takes a beautiful, strong and unique three month old girl to do it, more the better!

So, that is where we are today.  We are happy and blessed and honored.  We treasure each of you more than you can know.  Sleep deprivation and a little bit of stress may have caused us to look as if in a daze, but I promise that we are sane--most days!  Sorry for the length of this, but apprently Caroline gets her loquaciousness from her dad...

Matt

Bottles, Bottles Everywhere

Email of 4/23/2010:

All:

Well, it has been a little over a week (!) since baby Elizabeth entered the world in the Plano Presbyterian Thunderdome.  A lot has happened since then.  We have had an abbreviated stay in the NICU, were pleasantly surprised by an early release for good behavior, and had a pleasant homecoming with Caroline and Michael (and the grandparents, too!).  Since our return this weekend, Kathryn and I have been united in one seemingly simple mission:  feed, feed, feed, feed Elizabeth to get her weight up and "turn the corner".  She was a whopping 6lbs 1.5 oz when she was born, and had trimmed that down to a svelte 5lbs. 7 oz. when we left the NICU.  So, we have focused on feeding little Elizabeth at every turn to try to get her to "bulk" back up to 6 lbs.  This has been met with some rather forceful resistance by the intended "fat-ee".  She has become creative with her mother and father on how to avoid/resist the bottle and expel the milk pre-digestion.  We will give her an "A" for creativity, but an "F" for necessary submission.  We met with our pediatrician on Monday and received the news we knew was coming, but was dreaded nonetheless:  Elizabeth needed to carbo-load like crazy...and to accomplish this task, we were going to increase her calorie count.  That meant more frequent feedings and thicker formula.   

To encourage/force us as parents to "suck it up" and keep feeding, we were told that Elizabeth would now have daily appointments to weigh-in and see her progress.  Great.  As if Kathryn and I were not stressed out enough trying to feed her every waking moment, now we had to go and have her "weigh-in" at the doctor's office like she was about to compete in the super-feather weight division infant fights.  In all candor, we didn't really mind, but it was a bit more pressure for us to "get her feed on" as my brother put it so succinctly. 

   So, for the past five days, Kathryn and I have been feeding Elizabeth at every waking moment (and even during several sleeping ones!).  And, every day of weighing we have just been hovering around the regular weight...some days a half ounce up, some days a half ounce down, , some days just even.  It was beginning to drive us crazy (though several would already attest that we had arrived!).  Kathryn and I would find ourselves at 3 a.m. arguing over such life altering issues as who was going to sleep near the swing on the floor to listen for Elizabeth to rustle enough to justify another bottle.  It was that crazy, nonsensical time of parenting where the most silly and trivial thing becomes the most important issue of our time.  (Add to the mix that Kathryn still has both of her ears stopped up with a double ear infection, so that she can't really hear anything, and the whole scene borders on slapstick.)  I further added to the stress of the situation by using my famous lack of opportune timing to joke that maybe we should just strap a nipple on some Eagle Brand milk and take a short cut to the goal.  (Apparently, the ear infections are not effecting Kathryn's throwing accuracy!)

  Anyway, today (Friday) we drove to the doctor's office for our daily exercise in static frustration.  I fully admit that I should have reflected on my whole "dip your foot into the Red Sea" discussion from before for a bit of encouragement, but I was so sleep deprived, I wasn't sure of my own name.  Well, in another example of God's perfect timing,we put Elizabeth on that scale, and she had gained an ounce and 1/4!!!  Another in a long line of answered prayers.   Elizabeth had once again shown that we may just have to let her do this stuff on her own time--and trust God to provide when we simply cannot do it on our own.  (Of course, we will continue to feed her like a tick at every opportunity).  So, thanks for your prayers on this front, we will continue to pray for her to gain weight.  Our doctor would like for her to be back to her birth weight by next week. (Cue the sound of me mixing the formula powder and water...)

Other than that,. Elizabeth is still amazing us at every turn.  She is alert and showing great tone and control of movement.  These are things we had hoped woud be present, but based upon our diagnoses were not sure would be as apparent as they are.  God is showing us every day that he is in control of Elizabeth and has knitted her together exactly as He wants.  We are enjoying seeing the inexplicable, but wonderful,  ways Elizabeth is defying the expectations and confirming the wonder of a kind God. 

Once again, Kathryn and I deeply thank you all for the cards, messages, visits, flowers, food, and conversations over the past few weeks.  We cherish each of you and truly feel supported and encouraged.  It is awe-inspiring to know that so many good and wonderful people are praying for Elizabeth, and we simply cannot thank you enough.  We are humbly amazed by God's grace and infallable wisdom in this chapter of our lives.  We continue to praise Him for all good things and stand ready for whatever obstacles may present themselves.   We are excited about our daily blessings and acknowledge the supremacy and grace of God in this.  Have a wonderful weekend!

Matt 

Whiplash of Joy

E-mail of 4/17/2010

All:

 I guess we can only describe the last twenty-fours hours as being chaotically joyful!  As my wife put it to many of you yesterday, Elizabeth has busted out of the NICU and we are all home in Tyler resting (sort of) comfortably at our home with Caroline and Michael asking myriad questions on logistics of delivery (totally mom's area), why Elizabeth sleeps so much (my area); and when Elizabeth will want to play soccer (kind of both of our areas).  Kathryn and I are sitting here basking in the blessed minutae of reacclimating ourselves to home and in shock as to how quickly and distinctly our plans for the next weeks have been realligned to where we could only hope we would be!  God is good...all the time!

On Friday morning, Kathryn and I were heading to the NICU, kind of burdened down with the weight of knowing that we were going to be there for a while trying to get Elizabeth to feed regularly and in sufficient volume.  While in the NICU scheme of things, it was realtively minor-- we were inordinately tired, worried and starting to feel the effects of having a family pulled apart by space and circumstance.  We were still filled with the peace only God could provide, confident that He was holding us up and showing us the glory of His grace in every hour.  And, we were in for the long haul to help Elizabeth take on whetever goals she had set for her to show the doctors that she truly is the miracle we knew she was.  But, it was getting harder. 

So, we got to the NICU steeled up for another day of feedings and small victories, when a new doctor arrived and changed everything.  She asked Kathryn why Elizabeth was in the NICU, and Kathryn prepared to begin the long littany of discussion about Elizabeth's unique situation, but was cut off when the doctor said, "No, I know all that...but WHY are you all HERE?!  She is not hooked up to any machine, she is only needing to feed and instead of being here trying to feed her, you need to take Elziabeth home and love on her and treat her like any other newborn.  You are going to get discharged today..."  Kathryn hugged her.  Then, this doctor removed Elizabeth's feeding tube as it was not needed anymore as a supplemental feeding source.  At this point, I think if Kathryn could hve gotten the paperwork together, we may have adopted this doctor as our own!   It was a simply stunning turnaround that we never expected, but held out hope for during the last few days.  After we confirmed that this dear lady was actually a doctor and was not some demented practical joker, we began to prepare to take our sweet strong daughter home for the first time.  My parents were already on their way to Dallas anyway to see Elizabeth and we re-tasked them to help pack us up and caravan home.  It has been pretty amazing to see how God had put all the right people in the right place to make this happen as smoothly as possible.  The doctor who was allowing us to go home was a neonatalogist who was only at Presby-Plano that morning (half day) and would not rotate back there until July.  I have no doubt in my mind that she was put there for the sole purpose of discharging us and giving us another opportunity to see God's unfailing grace in seemingly impossible circumstances.  

So, dear friends, we are home.  Elizabeth is continuing to do wonders in feeding and defying human expectations.  She is a blessed little girl who has shown her mother and I the wonder and power of God.  She has gotten comfortable quickly at home, holding court from her new Lamb swing, sweetly gripping her brother and sisters fingers with her hand as a sign of solidarity (we'll see about that!) and generally entering into the beloved chaos of our lives as simply as she can.  She is awesome and we thank God every minute for her.  

We continue to pray unceasingly for her to take her feedings and gain weight.  We are doing all that we can to accomplish this.  We also know that we may have several mountains to climb with her developmentally as we learn more about how unique and blessed she is.  But, that in no way dilutes the unbeleivable week we have had, being privy to God's faithfulness and grace.  The worry and stress and concern will never wane for us (in fact, it never does for any parent of any child, regardless of the circumstances) but it feels so much more attainable and sustainable with the knowledge of God's presence and each of your support and prayers.  Again, we are humbled and amazed at the outpuring of support each of you has given.  Thank you is never enough, but it will have to do for now.  Please know that we continue to thank God for each of you and can only be amazed at each of your unfailing faith.  You have taught us so much and are examples to us is so many ways. 

On a final note, I have found myself reverting back to Exodus a lot during these days.  I think that this particular time in history seems to resonate to me as an example of  when people are faced with the crisis of the unknown.  In particular, I have heard several times before that God only parted the Red Sea for the Isrealites when they dipped their foot in the water...in other words, you had to step out in faith and be willing to get hurt before God would show his great and unfailing love via a miracle.  While our circumstance pales in comparison to that, it has taught us that we had to go through this experience--we had to dip our toes into the fear and terror of a horrible diagnosis, days in the NICU where you pleaded with God to let your baby girl eat enough to merit a pass without surgery, marinate in the fear that we, as parents, could do nothing to change the circumstances or make her eat-- before He would part the Red Sea and let us go home.  God has unabashedly and without question done all of this for His glory.  He deserves all accolades and honor.  And, Kathryn and I will willingly dip our toes into any other water to allow Him to be seen like this again by others. 

Thanks for humoring us in reading these e-mails.  I will continue to update everyone on Elizabeth's progress and share vignettes of wonderful stories surrounding her journey.  Each of you is dear to Kathryn and I and we look forward to sharing many more miraculous experiences with each other as we continue forward in life.  

Matt 

The Futility of Hoarding Manna

E-mail of  4/15/2010:

All:

First and foremost, I wanted to thank each and every one of you for all of the e-mails, texts, and messages that you have sent to us regarding Miss Elizabeth.  Each and every one of them has been read and re-read as Kathryn and I draw strength and endurance from your kind words and prayers.  Please feel free to continue to send them as you wish, and know that we are treasuring them as we continue to care for Elizabeth.  For those of you reading this that have experienced the NICU and its unique sub-culture, none of the following will be a surprise, but to those of you uninitiated to the wonder of this place, let me set the scene from my rather skewed view:  I think the NICU is much like a casino--there are no windows or overt sensory acknowledgements to the outside world.  Once you enter the inner sanctuum, you have little to no idea what time it is or how long you have been there.  Further. in an attempt to blot out any memory of possible distractions, the rules in the NICU prohibit us from bringing in cell phones of any sort.  So, in essence, Kathryn and I go "off grid" when we enter the NICU.  As a result, if you don't receive a response from us, please know that it is not because we aren't reading your messages, we are just in the cellular black hole of Presby-Plano.  It is refreshingly retro in that respect--and yes, to many of you, there was a time when people did function without cell phones.  Strange, but true!

Anyway, Elizbeth is doing really well in her new digs.  She has continued to amaze and astonish many multi-degreed medical professionals in the way in which she is doing and performing things that frankly she wasn't thought to be able to do.  Apparently, no one thought to tell Elizabeth, so she has decided to just do them anyway.  You go, girl.  She is very alert and likes to follow people around who are talking to her, she lifts her head up often, as both a statement of her displeasure at whatever you may be doing at the time, and also, I think, just to show off.  We are going to have to work on her humility a bit.  She is not on any type of machine to regulate any systemic function--a true rarity down here.  Her sole goal in the NICU--for now-- is to get her feeding consistent and fully on a bottle.  She is working wonders on that as well.  Yesterday was tough, as Elizabeth decided to apparently let Kathryn and I know that she was still in total control and was not--I repeat, NOT--going to take a bottle if offered at the time offered.  We are pretty sure that she was ticked at us becuase we had allowed all those doctors to do a littany of tests to try to figure out why she is...well...awesome.  (I'm pretty sure God could have informed them, but then again, it wouldn't have been half as fun to watch!)  Anyway, she stood her ground and resisted the bottles and got a small feeding tube for her trouble.  (first little lesson in moral stands, I guess).  So, yesterday was tough on Kathryn and I as we wanted her to get consistent on feedings to justify her escape from NICU.  But, alas, so it goes...

Cue today:  After her little snit fit was over, she has decided to see the error of her ways and has had some pretty awesome feedings.  Her last one today--at 8:30 this evening-- was her best.  She is on a good road, and in all seriousness, we want her to continue to take the bottle well and take in enough volume to get her weight up and growing.  Our prayer remains for her to have consistent feedings on the bottle and increase her capacity as needed.  She is a pretty amazing little girl and we want to continue our good progress.  We know without a doubt that your prayers are assisting mightily in this task.  For that we truly and humbly thank you.

Kathryn and I cannot say enough great things about the Presby NICU.  It is a great facility with great professionals who have patiently and caringly taken in these two old parents who are confused, scared and emotional and--to their credit--they have not filed a TRO on either of us yet.  Kathryn remains a stalwart person whose endurance is simply astonishing.  She is in the NICU all day and never seems to tire.  She is an amazing lady.  Keep praying for her endurance and strength.

Finally, to explain my random title of this e-mail:  Our Sunday School class (headed by the now appendix-less Mr. Gillen) is studying Exodus and I was reading some verses to just keep my mind off the crazy stuff last week, and I came across the story of the Isrealites who had been wandering the desert after being freed by the Egyptians.  They were hungry and asked Moses to talk to God about this.  God decided to give them the wondrous miracle of manna every morning to sustain them as they wandered the desert.  But, in the story, God warned the Isrealites to not hoard the manna as it would spoil and rot by the next day.  They were told only to take enough for them for that day.  Of course, the Isrealites were not fast learners and some hoarded their manna.  And, it spoiled and rotted.  I thought about that little story today as Kathryn and I were trying to wrap our minds around all this NICU stuff and everything related to it.  I thought that maybe--just maybe--we should not try to hoard the blessings God gives us--storing them up to use as some type of credit for tough times--instead we should joyfully and fully accept the daily blessings He provides and have faith that He will provide again tomorrow as we need.  In other words, slow down and appreciate the provision.  So, we are doing so now.  We appreciate His provision for Elizabeth and her truly miraculous presence here and with us.  She is wonderful, and we will continue to have faith that God will provide exactly what He should for us as we need it.  (I think that was the lesson in that--or I have not had any sleep in four days and I am attributing nonsense with logic...)

Thanks to each of you for your continued support and prayers.  We appreciate them--and you--more than you can ever know.  Feel free to forward this to whomever.  I hope I got everyone, but I am positive I have not.  Lack of sleep and all...

Matt