Tattered Sails...

"I will sing of Your Mercy that leads me through Valleys of Sorrow to Rivers of Joy!  And though the pain is an ocean tossing us around, around, and around. You have calmed greater waters! Higher mountains have come down!  Alleluia!" 

[Jars of Clay, The Valley Song]

When I heard these words for the first time earlier this week - it took all that I had within me to hold back the healing tears! We have always found a place of sanctuary, reflection and devotion to our God when we are able to sing of the Joy we know and experience in His Mercy, Glory, Grace, Peace and Strength...and as we rearranged our family room to be more "functional" and "homey" in our new normal, this song ministered to our souls in a very real and powerful way! We sing of His Mercy - even as tattered as our sails are right now - for the blessings and joy far outweigh the sorrow and struggle! But, isn't this our life's journey in a nutshell? His Mercy leading us through and transforming Valleys of Sorrow to Rivers of Joy!

My heart breaks every time I look at my little man's chest. Knowing the pain he is experiencing, the discomfort, the struggle, the fight and strength required to live! And oh what this daddy would do to take the pain and suffering off my little man and place it on to my weak and weary shoulders! I would do anything to relieve him of this journey...but I am reminded that in order to stand on the mountain of God...you have to walk through the Valley! Our God's redemptive purposes and plan are at work right now - in our life, in Jackson's and in yours as we walk this reality! It may be a road marked with vast Valleys, but there are flooding Rivers of Joy! And our Joy...is in the Hope and Future we have in Christ Jesus -  for His rod and staff are our guide, protection and comfort as He walks before us!

You see...the Valley is a place of worship! The Valley is the place of growth! The Valley is a place of insight, wisdom, knowledge, foundation and preparation - as we are refined, molded, shaped and transformed to become more like our Savior! And our responsibility - is to fully embrace the Valley - not to turn and run, but to surrender, persevere and walk by Faith! For it is not in our own understanding that we journey, but in the wisdom and knowledge that is in the Way, Truth and Life! For in his kindness God called you [and me] to share in his eternal glory by means of Christ Jesus. So after [we] have suffered a little while, he will restore, support, and strengthen [us], and he will place [us] on a firm foundation. All power to him forever! Amen. [1 Peter 5: 10-11, NLT]


The Transition...
Wow - you want to talk about transition and change! This last week and a half has been off the chart! Everything - and I mean everything - in our life has been shaken over the last two years. A new role and calling with the Billy Graham Association, 2 moves, a new home, a new community, new phases with Carter and Jordyn, and then add Jackson to the mix! The transition from 2 to 3 kiddos is crazy - but with all the care, attention and energy Jackson requires – the stress has been overwhelming at times! And truly - we are absolutely exhausted! And not just physically! This journey is so emotionally, mentally and spiritually draining - BUT we are resting in His Strength and Peace! In the intensity of this storm He continues to provide opportunities to grab a breath, refocus, and take the next step! We are weary, weak and wounded no doubt...but we continue to embrace this journey by "playing the next play" - one step at a time!  I would be lieing if I told you that the last 10 days have not held very difficult scenarios - full of many glancing blows, disappointments and deep sorrows - but our peace is not in our circumstances!  Peace comes when we keep our eyes on our Savior and not on this world or the ways of man! We expect the greater reward that awaits us in the Rivers of Joy - and His glorious blessing, signs, wonders, miracles and divine provision witness to the Grace, Mercy and Majesty of our Heavenly Father!

His Grace is sufficient! Sufficient for every moment, every detail, every circumstance and curveball! Truly - we have pleaded with the Lord to take this cup away from us time and time again, but fully know and embrace His call and find great encouragement in the promise that "My grace is sufficient for you, for my power is made perfect in weakness." [2 Corinthians 12:9, NIV] And on this foundation is exactly how we have tackled the transition home (again) – leaning in and relying on His Grace to overcome the circumstances, challenges, obstacles and hurdles many moments present. There have been times of great struggle and pure joy as we learn to "re-parent" with Jackson's condition - but Praise the Lord for His Mercy and Strength!

Our new normal is so intense with Jackson's care/meds/feedings (and that does not include the desires/needs/demands of a 2 year old and 5 yr old!), and our days are now realized in 3 hour increments...for it is every three hours that the reset button is pushed in regards to Jackson's feedings! And it is more like every 2 hours - because it takes an hour to feed the "little bugger" (as Dr. Sherman has so affectionately named him)!

This past Wednesday we had our weekly visit at Children’s Hospital with the surgical team, and Jackson is doing well! The process of his feedings is simpler now without the feeding tube, and he is also on a more manageable med schedule with the 7 medications he is currently taking – which he takes like a champ! Working with/training/teaching Jackson to feed has probably been the most grueling and time consuming task over the last week and a half at home, and the doctors wish he was taking more volume at this point – but they and we were greatly encouraged that he is gaining weight! Praise the Lord!

The team tweaked Jackson’s formula recipe a little to increase his caloric intake Thursday - which has translated to more fussiness and gassiness – but through out the weekend he has been able to tolerate the change more! And amazingly, Jackson has actually increased his volume intake substantially over the last two days!

The leak in his tricuspid valve continues to present itself on the echo - but at this time the doctors are "ok" with its sustained velocity. At this time the plan is to continue maintaining - with the hopes of improvement - the leak through oral meds, but the team will watch it very closely with weekly echos and form a plan of action - if necessary - as we get closer to his second surgery. His Glenn surgery is tentatively scheduled for late February, and we will keep you up to date as we find out more details!

The stress of having a baby that is not allowed to cry (due to the added work it places on his heart and lungs) and – at times – forced to eat 60-90ml every three hours is extremely intense…but the constant reminder from our team of doctors that Norwood babies can turn in a moments notice for the worse, never knowing what to expect with their condition…can be and often is overwhelming. The majority of time Jackson is a very pleasant baby - very alert with quite the personality - but when he gets worked up, it is a true test on mommy and daddy’s patience and endurance to remain calm, focused and poised to console the little man and get his heart rate back to a resting stage. It is very scary when the little man gets fired up, but once again – God gives us the strength, knowledge and skill to “play this play!” One step at time…

Carter and Jordyn continue to do well, and are embracing their new normal! It has been a struggle at times, especially at bed time and through the night - but they love having their little brother home! Jordyn continues to amaze us with her care and playfulness with Jackson, and Carter – well Carter is just amazing! He wants to hold him all the time, and shows compassion in ways that I have never witnessed in a 5yr old! He is absolutely awesome - and is truly stepping up as a big brother! But then again - he is the one who has been praying for his little brother for almost two years now!

And even in the midst of the sleepless nights and difficult days - mommy and daddy continue to grow in our faith, love and unity - not just with our Savior - but with each other! This truly has been the hardest test our marriage - as well as individuals - has ever endured! There have been some very tense, stressful and frustrating moments dealing with "all" that this storm offers, but the greatest blessing is finally having the opportunity to have our family together under one roof! The blessing of getting to know the little man - his cry, his squirms, his burps, his smile, his eyes, his huge hands and his personality - has been awesome, and far outweighs any of the struggle and stress! It is still hard to believe that he is now 6 weeks old - in a new decade already - and yet has only been "home" for 14 days…and as daddy and Jackson rang in the New Year together (I lost at paper, rock, scissors for the midnight feeding - just kidding!) - I was reminded of the promise and Victory we have in the Alpha and Omega! He is the Beginning and the End...and in the Beginning - He created it all! Our Heavenly Father created Jackson perfectly, and continues to shock and amaze us all with His purpose and plan in Jackson’s life! Jackson is God's glorious creation - and what a testimony he is to God's Majesty and Sovereignty! He is in all, through all and over all – and in Him all things are possible, for He is our strength!

Specific Prayer Requests:

• Pray for Jackson’s feedings, weight gain and the leak in his tricuspid valve. Cover our team of doctors in prayer as well as they begin preparations for his Glenn Surgery.
• Pray for rest – especially for Mommy and Jordyn. Many nights – Jordyn has been waking as she hears Jackson, and then not going back to sleep. The midnight and 3am feedings are tough as it is on mommy or daddy, but when Jordyn gets up…that means that both of us have to be awake and lose our opportunity for rest.
• Pray for wisdom, focus and energy as we learn to juggle all that life has to offer in our new normal.

No doubt our sails are tattered...the storm is/has been intense...our oars are gone...the motor is out of fuel...yet we continue to sing of His Mercy for He is the Everlasting God and He is leading us through this Valley!

All Eyes on Jesus!

Snapshot Moments: 

[Think this one could win a beautiful baby contest?]

[Snug as a bug in a rug!] 

[Wouldn't you just love to know what they're thinking?]

[Carter started back to school this week!  He was so excited to meet his new friends and see Mrs. Koster!  He got to be the weather man this week in class and came home Wednesday and said - "daddy, why does it have to snow everyday?  This is getting old already!"  He even had his first snow day Friday after another 6 inches fell through the night!  It was a very emotional moment for mommy and daddy as we dropped him off Monday morning...as this is one routine from our "old normal"]

Let me lead...embrace it!

Then Jesus said to his disciples...
"If anyone would come after me, he must deny himself and take up his cross and follow me." 
because...
"anyone who intends to come with me has to let me lead. You're not in the driver's seat; I am. Don't run from suffering; embrace it. Follow me and I'll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self."
[Matthew 16:24, NIV and The Message, emphasis added]

Powerful words from the Great I Am!  And words that have gripped Kelly and me over the last week time and time again!  To many these words create disbelief, discouragement, worry, fear, doubt, trouble, and discomfort - but to those who believe that Christ born in a manager, died on the Calvary's Cross for the sins of the whole world (that includes you and me you know), on the Third Day rose again, is seated at the right hand of our Heavenly Father and is coming back...these are words of pure joy, peace, rest and redemption!  These are the words of Salvation, Eternal Life, and Strength because no matter how long the road, how wide the division, how deep the pain or intense the suffering...we will not be overcome!  Why - because Christ has overcome the world and the enemy and is, was and forever will be totally victorious!  Now that is something to celebrate!  And celebrate we did this week as we embraced some moments of deep sorrow and suffering! 

Day 26:  Embrace...  [Friday, December 25th - Christmas Day!]
Throughout this journey, Kelly and I have been committed to teaching Carter and Jordyn how to suffer well by setting the example in our own suffering!  Does it hurt that Jackson is not home for Christmas...absolutely!  Are there tears, tough conversations, moments of disbelief, anger, fear, worry, and doubt - you better believe it!  BUT...be transformed and live victoriously because “look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them. He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever!"   [Revelation 21:3-4, NLT]

Because on this day...the Great I Am, our Prince of Peace, Mighty God, Wonderful Counselor our Savior was born in a manager!  And these words spoken from the One - Christ Jesus - sitting on the Throne bring strength to the weak, comfort to the broken, hope to the lost, sight to the blind and peace to the suffering...
“Look, I am making everything new!...It is finished! I am the Alpha and the Omega—the Beginning and the End. To all who are thirsty I will give freely from the springs of the water of life. All who are victorious will inherit all these blessings, and I will be their God, and they will be my children."  [verses 5-7]

And so today...we did not run from our suffering, but truly embraced this step in His story - because we believe far better things are yet to come! This is definitely not the way we saw Jackson's first Christmas playing out - especially after having him home so soon after a miraculous recovery following the Norwood surgery - but God is sovereign and we embrace His good, pleasing and perfect Will for our lives!

And man did we ever have fun!  We spent Christmas Eve just the five of us at Children's hospital hanging out with the little man, playing Wii (that Santa's elves "just happened" to be able to drop off on thier busiest night of the year!) and enjoyed our favorite dinner in our new favorite cafeteria - chicken nuggets and french fries! [Note:  Many say that sarcasm is my number one spiritual gift!] 

What I would have done to have all three kids home, and snuggled up in front of the TV with our favorite Christmas Movies, a fire and hot chocolate tonight, but it truly was a night filled with moments we will never forget!  And after a long evening in the hospital with many of our new "family" members (the nurses and doctors continue to just amaze us at the "going the extra mile", care, comfort and compassion!)  we had to yet again say good bye to our little warrior!  The night was capped off with preparing a plate of cookies and milk for Santa!   We spread reindeer food all over the front yard (oatmeal and glitter so they could see it) and tucked 2 of the 3 munchkins in with "The Night before Christmas!"

Carter and Jordyn were so excited for Christmas morning...and the joy on their faces this year was overwhelming!  Carter was amazing, and truly embraced his role of big brother yet again!  Jordyn - was absolutely hilarious with her new baby!  And it was absolutely awesome day!  After Kelly's amazing breakfast brunch, Jordyn drinking sugar in her hot chocolate (captured below), Grandma and Grandpa Deer (the name Carter gave my mom and dad) coming over to visit for a little while - it was time for a quick nap for everyone and into the hospital to spend the evening again with Jackson!  We enjoyed another great night with Jackson and our team of nurses and families in the CICU who we have gotten to know over the last month!  And check this...we had an amazing conversation with our nurse and her passion to serve internationally with the YWAM mission organization!  Here - the reason she had to work tonight was because she spent 10days in Africa over Thanksgiving on a mission trip, and had to work Christmas! She is currently praying through God's call on her life to care and minister to the children/heart babies of Tibet!  How awesome is our God!  He truly has showed up in some powerful ways over the last two days and truly blessed us with some incredible memories that will forever make this Christmas a celebration of Life! 

Day 27:  It Came Upon a Midnight Clear...

Well - what an awesome Christmas and did we ever need a day to recover!  It has been quite a whirlwind over the last three days, and at Carter's request today was a pajama day!  We truly just relaxed today and embraced an opportunity to "be still"!  We spent the day playing, laughing, dreaming, and believing that God was going to continue to work miracles in and through our family!  And boy did He ever today in small - yet huge ways! 

After a long afternoon nap for all of us - we headed into the hospital again to spend a couple of hours with the little man!  Carter and Jorydn have really begun to enjoy spending time at the hospital - and as soon as we get there the first thing out of Jordyn's mouth is "juice please daddy"!  Which means a trip to the cafeteria with daddy and a "special juice" from the soda fountain!  It is truly amazing at what catches the curiosity of two year olds! 

Over the last two days Jackson had done well with his feeds - but we were amazed when we walked into his room (on the 8th floor now) and found that his feeding tube had been removed!  Did you catch that! The feeding tube was out yall!  It was so awesome to see his two little cheeks and cute nose with no tape and no tube!  He was now eating anywhere from 2 to 3 ounces every three hours - and the doctors were very encouraged by his improved feeding and weight gain - as tiny as it was!

And God was not done at that!  This morning's echo showed that the oral medication changes have controlled (not improved, but controlled) the leak at the tricuspid valve and the surgeons and cardiologists were very excited and encouraged by this finding! 

So...if things go well tonight - the plan is to discharge him tomorrow around 1pm, just as the Steelers game gets underway and traffic should not be an issue!  Only in Pittsburgh do we plan a discharge from the hospital around a football game! 

Day 28: Overwhelmed with sorrow...

He [Christ] began to be deeply distressed and troubled."My soul is overwhelmed with sorrow to the point of death..."  [Mark 14:33-34, NIV, emphasis added]

Even through the miracle moments of pure joy this past weekend - there have been many times that our souls have been overwhelmed with sorrow!  It truly has been a very exhausting journey and not just physically, but emotionally, spiritually and mentally...and today - truly was another gut check! 

After a morning of preparation and excitement, not just for mommy and daddy - but for big brother and big sister...it was time to head to the hospital and bring the little man home!  Jackson had a great night and the four of us were ready to be reunited at home - finally!  So after a half an hour trying to figure out how to put three car seats in the car (don't you wish I had a couple of pictures of that to post here!) we were headed down the parkway North to pick up the little man!  There was no one on the roads as the game was about to begin...and what can be a 45 minute drive in traffic only took 25 minutes!  It was great! 

We got parked, and checked in a the front desk - complete with a sticker for Jordyn's baby doll that she got for Christmas and carries everywhere with her - my cell phone rang!  And the funny thing was that number was from Children's Hospital. 

And as I answered, I was greeted by Jackson's nurse Jen with..."I am so sorry!"  Now that is definitely not the way to say hi to a daddy with his baby in the hospital, but Jackson was ok - just sick!  Here after going through all the preparations and minutes before discharge (literally all that needed to be done was to put him in his carrier and we were going to be on our way home) Jackson spiked a fever of 103 degrees. 

Immediately the ordered a series of tests - complete with a blood culture, urine culture, CBC and chest x-ray - and reinserted his IV they just took out 5 minutes ago to draw blood and begin an antibiotic treatment!  It was crazy!  It was intense! And the nurses and doctors were so apologetic! 

But GOD is so Good....and His timing is so perfect!  For if I had not wasted a half hour on those car seats we very well could have found the fever at home and been in an emergent situation!  He looked awful - a ghostly white color and his heart rate was sky rocketing!  His resting heart rate is somewhere between 135-145, but now was in the 170's when he was sleeping!  Obviously something was not right...and all the initial screens determined nothing!  They had no cause for the fever - and so the search was on! 

It was a huge let down for Kel and I...as we were so pumped...but it crushed Carter!  Jordyn just wanted another "juice please daddy" from the cafeteria - but Carter could just not believe that Jackson would not be coming home today!  He was bummed!  But after a snack together in the Cafeteria - we regrouped and spent the rest of the night with Jackson crib side!  Kel just held him...and looked. cared and loved him like only a mommy can do, and daddy just tried to keep Jordyn and Carter occupied!  Two highlights...we had an amazing surprise visit at the hospital by three awesome angels (thanks Paula, Rhonda and Tabitha - you truly made our day!) and hey the Steelers beat the Ravens!!!!!!!

Day 29:  7 years ago...

Well...7 years ago today Kel and I said "we do" before our Heavenly Father and a congregation full of eyes and tears!  Our wedding day was so awesome!  And if you were there...you would remember the snow that filled the air and made the luminaries dance as the ceremony ended and the drive to the reception began!  Oh what a night...late December back in 2002! (are you singing with me?)

When Jackson was discharged the first time, our team of nurses and doctors encouraged Kelly and I to continue our "date nights" and make time for just the two of us - because this journey was not going to be easy, and our marriage would be tested!  Our immediate response was...which nurse is keeping Jackson?  Little did we know...but that was quite the prophetic statement - with some pretty expensive babysitting!  But - we saw the opportunity that God had given us, and so we stepped out on Faith!  I arranged a surprise for Kelly, as Katie - her cousin - came to watch Carter and Jordyn...Jackson was in the best hands possible...and Daddy was taking Mommy out on a date!

And oh how the drive to Red Lobster (Kelly's pick) reminded us of our wedding day!  The snow was falling in Pittsburgh and the roads were slick!  It was so cold...but the conversation we shared over dinner true was an awesome blessing!  We had the opportunity to reflect back over the last 7 years and pray over and through our current situations!  It was an awesome night...that ended with a wonderful and peaceful 2 hours at the hospital just holding our little warrior!  We just couldn't stay away! Thought about catching a movie...but nothing is better than holding God's miracle!

Jackson looked a little better tonight, his fever had broke - amazingly with just Tylenol - early this morning!  Still no root cause for the fever, as his CBC (Complete Blood Count) came back normal, Rota-virus was negative and the cultures looked good.  Chest x-ray was "normal" and the team suspects it could have just been a virus.  But either way - they started a 48hour antibiotic treatment...and so the little man was in over night once again!

Day 30:  Be Still...

There wasn't much happening today!  Jackson continues to do well - and still no cause has been determined that would have prompted a fever!  I still believe the thermometer was broke - just kidding - but things look good!  Again - God has everyone speechless!

They finished his IV antibiotic treatment - just as a precautionary measure - and wanted to observe him overnight off the antibiotics, just to be sure everything was fine! 

It was a rather quiet day...but I had some awesome conversations with dear brother and sisters in the Lord today as I got caught up on some phone calls and work!  It truly is amazing how the Lord is stirring His people to rally and proclaim the Gospel...and it is so exciting to be apart of His work! 

Day 31:  Coming Home!  [Wednesday, December 30th]

We got the call early this morning from our team at Children's hospital that the doctor's had given the "all clear" for Jackson to come home!  So again...we prepared to bring the little man home!  This time - there was no waste of time putting the car seats in, we were ready! 

It was a great and seamless discharge!  It was seamless that we were home within two hours of leaving to pick him up!  And the only person that made a noise on the drive home was Carter!  Jordyn and Jackson slept the entire way!  But that was just the calm before the storm! 

We felt much more prepared and had a great sense of confidence bringing him home this time - but still scared to death!  It is hard for us to fathom that today - Jackson is a month old, even though he has only been home for a total of 4 days.  But today - was an awesome day!  And it was so wonderful having the five of us together under one roof - again!  

It has been a very tough week...and we are absolutely exhausted!  But God continues to give us moments that allow us to catch our breath as we come up for air on this intense swim in the midst of a storm! We Praise Him and know that He never gives us more than we can handle - in Him - but why does He trust us so much!  And we stand firm in this Truth...He never said it would be easy, He just promised it would be worth it!  So no matter how intense the storm, adversity, sorrow or difficulty...don't let your heart be troubled!  Embrace the suffering!  Keep your eyes off the circumstances and on our Savior!  Let Him lead...His Will - His Way!   All Eyes on Jesus! 

[I am sorry for the delay in updating the blog, and know this is still an incomplete update...but we are doing well!  Definitely exhausted, and weary...but the Lord is our Strength, and give all of our worries, fears and doubts to Him!  He is in control...and one step, on baby step at a time!  I hope to update the blog more frequently now as we have a tiny groove of the "new normal"!   Please be in prayer tomorrow (Monday, January 4th) as a new element gets added to the schedule...Carter starts pre-school again!  He is so excited!  Well...Kel, Carter, Jordyn and Jackson are now sound asleep...and it is time for daddy to grab some rest too!  Thank you for continuing to stand with us and blessing us with your love, prayers and support!  We serve and Awesome God...