"How kind the Lord is! How good he is! So merciful, this God of ours! The Lord protects those of childlike faith; I was facing death, and he saved me. Let my soul be at rest again, for the Lord has been good to me." [Psalm 116:5-7]

Day 12: Childlike faith.. [Friday, December 11]
How sweet are the moments in life when we are able to capture expressions and experiences through the eyes of a child. And over the last several weeks it has been awesome to watch, hear and share the ways Carter and Jordyn have responded to their little brother - his hospital visit, heart defect and multiple surgeries. Through childlike faith, Carter continues to share incredible wisdom..

One of the greatest experiences of this journey to date was the opportunity that the Lord provided Kelly and I to bring "Bubba" in today to see His baby brother for the first time after surgery! One of the greatest resources here at Children's Hospital in Pittsburgh is the Lemieux Sibling Center - an activity center designed to engage, encourage and educate the siblings of inpatients. But as we walked through the center - complete with a huge fish tank, tons of toys, an air hockey table and a big screen TV with a Wii and Playstation 3 (which Carter responded to with "that shocks me!"...it was hilarious!) - it was the care, compassion and attention that the specialists and assistants demonstrated to Carter that truly blew us away! Bubba is going through a lot right now...and for him to have two hours of undivided attention and the opportunity to ask questions and express his emotions of this journey where such a blessing!

In the two hours - after playing the Wii with Miss Meredith for an hour - the staff had prepared him to see his brother following surgery and had the chance to create a "Jackson doll" with IV's, diodes, oxygen tubing, and other medical devices! What an awesome idea...and Jordyn loves holding/playing with "mommy's baby" that Bubba made!

And then the incredible moment...the reunion of brothers! You should have seen Carter's eyes! So caring and so compassionate! And upon seeing Jackson, Carter's words were quick and simple..."he looks good!" And to see the two of them smiling at each other...I can't even begin to put it into words!

We are so excited to see how their relationship develop...and it continues to be covered in prayer! Prayer that all three would come to a personal decision, relationship and walk with Christ Jesus...and that their lives would reflect the Glory and Image of our Savior! And I trust that God will take care of the rest...

**Sorry I don't have a picture to insert here...our battery died on the camera today! Won't let that happen again ~ promise!**

Day 13: "Tree of Life"
Today was incredible! Over the last week we have termed Jackson's IV/infusion pole the "tree of life"...as there have been as many as 10 infusions/medicines and IV pumps on one pole providing Jackson's recovery, comfort and care. It truly was overwhelming to see all that the nurses/doctors were "pumping" into our little man, and the delicate balance that was required to ensure progress and recovery. And when the "beeps" and "alarms" would go off - whether it be on one of his two monitors or on an IV pump...it would immediately cause you to stop, drop and look!

...and speaking of alarms, the "beep" was going off on our "home front" over the last two days! Hence one of the reasons in the delay of updating the blog. The juggling act over the last two weeks has been extremely difficult - and this is just the beginning! But Kelly and I are not the only two worn out with trying to embrace our "new normal", Carter and Jordyn desperately needed some "mommy and daddy" time - so after an awesome family night last night together, and a morning full of pancakes, laughs and games, Kelly and I were off to spend the afternoon with Jackson...

But, as Kelly and I walked in this afternoon...we were blown away! The "tree of life" that once held 7-10 pumps over the last four days, now holds only...one! That's it! One lone IV pump...that contains magnesium of all things! No more heavy pain meds or narcotics! No more epi! No more alarms! It was amazing and truly stunned us! Who would have ever thought that in a matter of 4 days...God would allow Jackson to heal at a rate that would allow this miracle to become a reality! Praise the Lord...but that was just walking in the door! We didn't even get to see our little man yet...and when we went to his crib, tears flooded the room...this is what we saw:

Do you see it? Check out his nose! NO OXYGEN! For the first time since 30 seconds after birth...Jackson's lungs and heart were sustaining oxygen levels with no assistance! The tube coming out of his right nostril is just his feeding tube! Absolutely amazing Lord - considering that many times Norwood surgical patients aren't off the ventilator in a week...here is our little warrior off all oxygen in a mere 4 days of recovery! Unfathomable...and again - the doctors and nurses are stunned, shocked and amazed! God you are the Vine and we are the branches! And in You...there is full and abundant Life! Jackson is proving that we are born to fight for life! And so today we Praise our Healer as He continues to Reveal Himself through His Seriously Ridiculous Love and Life in which He Provides! Can I get an Amen?

But God was not done yet...over the last several days Kelly and I had been praying/talking through ways we could provide more consistent care for Carter and Jordyn - who have been bounced so many times over the last two weeks! And then my cell phone rang...on the other end - a true blessing! Her name is Kailey...the daughter of a great friend from NorthWay...who is home for the next month on semester break! It is a long story...but I actually met Kailey and her dad, Steve, almost 4 years ago on a mission trip to New Orleans in the wake Hurricane Katrina. Kailey was going into her junior year in high school at the time, and her dad and I were chaperones together - which has developed from that point into a friendship that has radically transformed this knucklehead, and actually the person who introduced me to the Casting Crown's song "Praise you in this Storm", which has been a theme song for us over the last 9 months! Kailey received news earlier in the afternoon that she did not have work over her break at the assisted care living home she worked at over the summer, which immediately allowed her to be available to help with Carter and Jordyn! And my immediate response..."you're hired!" When God presents an opportunity like this...you jump all over it! Talk about convergence and a win-win situation...especially since my brother Steve has been out of work for more than 7months! And you want to talk about a young woman passionate for our Lord Jesus - wow! Kailey is studying to be a nurse (pediatric nursing of all things - God spares no detail ya'll) and is praying through a calling into the mission field. She brings a great energy level, personality and faith perspective that Carter and Jordyn need - we need - as we venture through this next month. There is nothing more important than the care and stability of Carter and Jordyn, and we know that God will continue to Provide as He is Faithful and His Love is Unfailing! After all - He is Jehovah Jireh! God is so good - and we are so thankful for Him bringing Kailey into this journey with/for us!



Day 14: The "Icy Grip":
Today was a day to remember here in the burgh'! As we got ready to leave the house this morning (around 9:30am), I looked out the door and noticed that there was a slight glaze of ice on our front steps! It was drizzling a little outside...but there was no forecast of a winter storm, snow or ice! So just to be sure...I flipped on the TV, and to my amazement I found that all major interstates and the parkways had been closed! You have got to be kidding me! Closed for what? Here...it was the "perfect storm"! A little drizzle, mixed with temperatures hovering around freezing, and road surfaces below freezing that created what I never knew existed...a "flash freeze"! Come on...
But after three hours of waiting around for the temperatures to rise, and the roads to clear our plan was once again shucked out the door! Literally...as there was no way we were about to get down our front steps! You should have seen our awesome - and yet a little crazy - friend Rick try to get up our steps to drop off some soup! It took him three minutes...to climb three steps! And don't worry...I gave him the lecture about even thinking about driving in this weather!
But, the ice around our morning quickly melted when we heard from Jackson's nurse that he had an awesome night and early morning! The team had up'd his feeds to 3oz every three hours, and that there was even a slight possibility that he would be transferred out of the ICU to the step-down Cardiac Unit tomorrow! Let me say that again...6 days after his open heart, Norwood surgery...they are considering moving Jackson out of the CICU and on to the Cardiac floor to prepare him - along with Kelly and I - to come HOME!
For the last 6 months of this journey...God has taught us specifically His timing in the "not now"! All of a sudden it is "right now"! I can't begin to tell you how many times He has said "wait" through out this journey, but to think that the greatest Christmas present ever - may very well be coming true! From the moment we heard the "best case scenario" two weeks ago, we have been praying for the miracle present of Jackson being home with us this Christmas! And so...it is time to get ready! But would you believe that Kelly and I have become content and "comfortable" in waiting...and now all of sudden - it is time to move! And as you know...I am not one to drag my feet! But God...6 days? Now - not only does He have world class doctors stunned and amazed...He has a mommy and daddy "shocked" and a little overwhelmed! And so where do you turn when you are feeling a heavy weight and overwhelmed...for us, the answer is scripture:

Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. [Ephesians 6:14-18, NIV]

It is not a matter of waiting or not...it is a matter of being ready to move in His Perfect Timing...and now - it is time to tighten up the Full Armor of God, especially our feet that are fitted with the readiness that come from the Gospel of Peace!

And just in case that did not melt the "icy grip"...I got to feed my little warrior for the first time! Another "Seriously Ridiculous Moment" of God's Love and Favor!

Day 15: "Not quite yet!"
So after an incredible conversation of preparation last night between Kelly and I...we were ready to move out! And it started with a great night's sleep - even though daddy was up with Jordyn a couple of times with her cold. But then God said, "not quite yet"! Go figure...
Jackson put in a rough night last night and was pretty fussy today...following a precautionary morning test of his upper GI. Last night, he really struggled with his feeding - throwing up several times - and the team just wanted to be sure that everything was functioning properly. And it is! Everything is normal...but the delay this morning, threw the "move" schedule off a little, and beds were shuffled - and Jackson had one more day in the CICU. Which is just fine with mommy and daddy! God is Soveriegn...what is there to worry about!
But the incredible moment for the day...was for the very first time we got to see his beautiful face without any tape or tubes - as he is now off all infusions! None, Zero, Nada! Check out this little adorable face...



And to think that just 6 days ago...this was the scene following his Norwood Surgery!


Our God truly is the God of Miracles! And tomorrow - it is moving day! The plan is to move Jackson to the 8th floor in the morning, and begin preparing all of us to bring him home! When? We don't know...it just all depends on Jackson!

But we do know that bringing Jackson home will not be a normal transition! He will be coming home with monitors and medicines, and possibly a feeding tube to be sure that he receives the calories needed to gain weight. One thing we know for sure - it is going to require Kelly and I to change our parenting for this little man! Just as an example...Jackson will not be able to cry himself to sleep, as we have done with both Carter and Jordyn. It is just too much stress on his heart and lungs, and can have severe consequences - including cardiac arrest. Also - the slightest cold can put him right back in the ICU, and so we will have to continue to limit interactions, which is just not like Kel and I - but this too will have to become part of who we are over the next several months and year as a family. It will be a very difficult and a long road...as we are already feeling the exhaustion of a "new normal" day! BUT... God will continue to provide the strength, peace and grace for every moment of every day! His Promise...and we will stand firm in Him!

Please continue to pray! Pray for Strength, Wisdom, Grace, Unity and Discernment! Pray for Healing - not just upon Jackson, but for Carter and Jordyn who are both fighting colds now! And pray for continued courage to walk by Faith, as we suit up with the full armor of our Heavenly Father! May God continue to bless you, and draw you closer to Him!

All Eyes on Jesus!