The angel replied, “The Holy Spirit will come upon you, and the power of the Most High will overshadow you. So the baby to be born will be holy, and he will be called the Son of God. What’s more, your relative Elizabeth has become pregnant in her old age! People used to say she was barren, but she’s now in her sixth month. For nothing is impossible with God.” [Luke 1:35-37, NIV]
One of my all time favorite Christmas songs is "Mary did you know?"...and how these words bring back incredible memories of Christmas Eve and Christmas day's past...Mary did you know that your baby boy would one day walk on water, save our sons and daughters, has come to make you new, and that child that you deliver - will soon deliver you? Did you know that your baby boy will give sight to a blind man, calm a storm with his hand, has walked where angels trod, and when you kiss your baby - you are kissing the face of God?
The blind will see,
the deaf will hear and the dead will live again.
The lame will leap, the dumb will speak,
the praises of the Lamb!
Mary did you know that your baby boy is Lord of all creation, will one day rule the nations, heaven's perfect Lamb? This sleeping child you're holding is the great I am!
I am not sure there are any gifts that compare to the "first hold" or the "first kiss" of your baby in your arms! And we Praise the Lord for the Ultimate Gift we have in His Baby Boy that is the Way, the Truth and the Life! Who is the only reason that we are still standing this morning...because Doug and Kelly did not know - that Jackson would not be home for Christmas this year? We ever saw this coming...
Day 24: Shock and Awe...
I can only imagine the shock an awe of the moment when the Angel of the Lord appeared to Mary and she received the news! Greatly troubled, confused, disturbed..."how could this be?" were her some of the immediate emotions captured in Luke 1: 29 and 34, but then the promise...
"Do not be afraid, Mary, you have found favor with God. You will be with child and give birth to a son, and you are to give him the name Jesus. He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and He will reign over the house of Jacob forever; his kingdom will never end." [Luke 1:30-33, NIV]
And it is on this promise that we stand! For it is God's promise of Life, Peace, Grace, Salvation, Strength and Rest! But, like Mary, we were confused, disturbed, greatly troubled, shaken, rocked, shocked, and awed when we heard the news yesterday that Jackson was being readmitted to the CICU - and will not be home for Christmas. And to be honest...we are still catching our breath!
During Jackson's weekly echo and appointment at Children's Hospital - turned into great concern and extreme caution from our team of doctors. The echo showed a leak in his tricuspid valve (that is the valve between the right atrium and right ventricle - which is now the only atrium and ventricle in Jackson's reconstructed heart.) The leak was minimal and of no concern a few days ago, but in the last 5 days has increased and has the team very concerned.
The second concern is Jackson's continued vomiting every other of every three feedings. They are not sure as to what the root cause is to this reflux, but with him not gaining weight the concern level is great.
After meeting with Dr. Morell - who shared that Norwood patients are the babies that scare him the most, because he never knows what to expect, and can twist and spiral down hill without warning - he could never forgive himself if something happened to Jackson over the next two days (Christmas Eve and Christmas Day) when he has the opportunity to watch him closely from the CICU. So immediately we were admitted, taken upstairs and a series of test and medications began.
The hope is to adjust his meds and strengthen his heart through oral meds, but infusions and surgery are potential options - both causing an extended stay! Jackson will be in the CICU for a minimum of 3 to 5 days, until they are able to identify root causes of the leak and vomiting, and have been able to improve the leak, control the vomiting and get him gaining weight! It all is up in the air at this point...but we know Who is in control! God's hands are all over this...and in Him we have peace!
It was a punch in the gut though...but allowed us to realize and re-posture on how precious time, memories and life truly are! We were not prepared at all...and stood crushed for the next couple of hours as we desperately tried to regroup! But, Praise the Lord for incredible blessing and favor - as Carter and Jordyn had a great night with Kailey and her family playing in the snow, and for Jenn and Jason coordinating delivery of Kelly's frozen milk from our kitchen freezer to the hospital, allowing Jackson's feedings to stay consistent through the night! And after a great/quick dinner together at Panera - and some time of prayer - we had regrouped and reconnected! It is amazing the emotions that you don't even know you have...it's crazy ya'll!
Day 25: SO...it is Christmas!
And the celebration of our Savior's birth this year is going to be awesome and very special! This is definitely not the way we planned it or saw it going...but it will be a time of great memories in celebration of New Life! We identify with Mary - again - as it is/was hard hand over our baby boy to the team (can feel a sermon developing here), especially after holding him and caring for him at home the last 4 days...but he is in Great Hands and is right where he needs to be this weekend! What an awesome team of nurses and doctors (who many are believers and shared tears with us yesterday) God has assembled, who continue to amaze us with their care, love and support!
This morning...I ran some of those final "Christmas Eve" errands and picked up some last minute gifts - as Kel, Carter and Jordyn got our home smelling great with some awesome chocolate chip cookies for Santa and our team of doctors/nurses! We will be heading in to the hospital following Jordyn's nap to celebrate and hang out just the five of us this Christmas Eve night! The nurses already have the Wii hooked up and ready to go for Carter's stocking gift, as he asked for Tiger Woods 2010 - and daddy is pumped! Tomorrow morning we will spend Christmas morning here at the house with the Carter and Jorydn - and then we will head into the hospital for some family time with our little warrior!
It is going to be a Christmas we will never forget...but we embrace this step/battle in the journey - and continue to find Rest and Strength in Him! We hope you all have an awesome Christmas celebration - complete with memories that will last a lifetime! Keep your eyes fixed on Jesus over the next two days and get caught up in the Life, Love and Hope of our Savior's birth! Always has been, is and always will be about Jesus!
Love you all - and thank you for your continued prayers and gift of friendship!
All Eyes on Jesus...and sing your hearts out tonight! "Away in a manger, no crib for a bed...
Thursday, December 24, 2009
Wednesday, December 23, 2009
Land of Rest...
[The Lord said]..."I will bring them home to this land that I gave..." [Jeremiah 30:3a, NLT]
The Gaither Homecomings, have nothing on the last four days of the Barrett Homecoming! Talk about pure joy...
While Jordyn and Jackson took a nap on Sunday afternoon, and Carter snuggled up on the couch for his daily Christmas tradition of "Mickey's Twice Upon a Christmas" movie – Kelly and I had the opportunity to grab a few minutes of quiet, devotion and conversation over our weekend of "biblical rest"! As we reflected over the past weekend, and what the Lord has taught us in this land, we "prayer talked" through the above scripture...and the following question was laid on our hearts as we read the Lord's promise above...what land is the Lord referring to here? And as we studied together...there is a earthbound reality, but also a Heavenly reference of our Glorious Future, Promise and Hope found in our relationship with Christ!
As I shared on my last post - throughout the day Thursday the Lord laid on my heart His monologue and charge to Joshua days before leading the Israelites through the Jordan River to the Land of Promise! The Land overflowing with milk and honey - that was also inhabited by Giants! The same Giants that captured the attention, focus and worry of their ancestors…which led to 40 years of wondering in the desert as a generation died...a river's view away from the land of favor, blessing, and provision! And you guessed it...the land that is referenced above in Jeremiah 30:3, is the same land that the Lord promised to Moses as he led the Israelites out of Egypt! And as we went back to the scripture...we were amazed at the words, encouragement and Truth foud in Joshua's charge to the warriors of Israel - immediately following God's "be strong and courageous" pre-battle speech:
...Then Joshua called together the tribes of Reuben, Gad, and the half-tribe of Manasseh. He told them, “Remember what Moses, the servant of the Lord, commanded you: ‘The Lord your God is giving you a place of rest. He has given you this land.’... [Joshua 1: 12]
I don’t know about you, but I find it absolutely fascinating that the Lord our God gives us a place of rest smack dab in the middle of adversity, difficulty, battle and Giants. His Promise is divine rest in Him...IF we are willing to embrace this land - by Faith -and walk the journey according to His good, pleasing and perfect Will! Often times our own dreams, expecations, control, physical wants and selfish desires get in the way of true rest that is found only in Christ, as we are confronted by and turn to the deception of worldly schemes in desperatation for our tired and weary souls! But true rest, comfort and security are found in the intamacy of our relationship with Christ - which is a lesson that Kel and I continue to learn...
7 years ago - in the midst of our "I do's" - Kelly and I made a "we do" covenant before the Lord that in and through our marriage this house will serve the Lord - and even though our "agent" (sarcasm) did not mention the details of this particular part of the journey in our contract - we embrace and find rest in this land that is overflowing with blessing, miracles and favor of our Lord Jesus! We will continue to praise our Heavenly Father as we walk by Faith in obedience to God's Will through this land of adversity, hardship, and massive giants that still inhabit this land of promise! Especially now that Jackson is home!
Are there situations that can create hesitation and fear? You better believe it! But the "overwhelming feeling" comes only when our eyes are on the circumstances of the journey, land, appointments and hurdles and not our Savior! Trust me - we are no where near perfect in keeping our eyes on Jesus - and please don't think that the rally cry of "All Eyes on Jesus" is just for those reading this blog! It is for the knucklehead writing this blog as well! We are getting ready for battle as we come home to this land - through the power of prayer and with the promise of His Peace and Strength...and so we will live victoriously, as we find divine rest in our relationship with Christ Jesus!
Day 19: "Road Trip"
After a morning of final preparations at home by Carter, Jordyn and Daddy...it was time for Daddy to head to the hospital and pick up Mommy and Jackson! As I walked onto the 8th floor...huge smiles greeted me - as there was quite the buzz, hype and joy filling the unit as many stood in disbelief that Jackson was heading home - only 10 days - after his Norwood Surgery! We came to find out, that Jackson indeed was the fastest Norwood recovery in Pittsburgh Children's Hospital, and the only "closed chest" Norwood patient that many of our team of doctors and nurses have ever seen or heard of coming out of the surgery! And looking back at the pictures from just 10 days ago - I can't believe that we are bringing our little, miracle warrior home today! Our God is Almighty and Everlasting!
After a few last minute discharge instructions, and three trips to the car with "stuff" (could have used a pack mule!) it was time for the "good-bye's" - or more like "see you soon's"! But...as we went to unplug Jackson's pulse/oxygen monitor - we found out that his unit did not have a back up battery that was working properly! Come on man! So with the car packed, coats on, Jackson ready in his carrier - it was time to "wait!" - been here before…as Kelly and I just saw it as another reminder that the Lord was with us!
In the hour we had to wait for a new machine - Jackson had the opportunity to say good-bye to some of his nurses from the CICU, and get some "snuggle time" with Dana and Joanne (two members of Jackson's cardiothoracic, surgical team with Dr. Morell - before the longest walk of our lives!
It was a long car ride home - with Jackson's alarms going off most of the way, due to setting the limits wrong in the rush of discharge, but once we got home around 4:30...an overwhelming sense of unity and peace swept through our home! Finally - the five of us were together – as the Lord had promised!
Carter...has been absolutely amazing! He was so excited to be "a big brother again" - as he put it - and to see his love for his little brother is just awesome! From holding Jackson, playing with him, helping with his bottles, pacifier, and sweeties (a sugar water solution that the nurses in the CICU put on Jackson’s pacifier to help calm him) it is just incredible to see the care and compassion that Bubba has for Jackson!
And as for Jordyn...she has been absolutely hilarious! Every time Kelly goes to check Jackson with the stethoscope, Jordyn runs to her toy medical bag, pulls out her stethoscope and starts checking his knee! Every time Jackson cries...she wants to hold "momy's baby", and at the first diaper change...Jordyn ran and grabbed her step-stool from the bathroom and was right beside mommy for his first "poo-poo" at home! Every now and then (most times completely out of the blue) Jordyn will walk over and give him a kiss on his forehead with a little "luv-oo" to go with it!
And after tucking Carter and Jordyn into bed...it was time to try and grab some sleep in between feedings…but that hope did not become a reality! Every time Jackson would start to stir/cry - Jordyn (who is an extremely light sleeper) would wake and want to see "baby"! We may have gotten a total of 3 hours sleep, and at 4:30am - Jordyn and Jackson were in bed with Kel and I as we desperately tried to grab an hour of sleep before Jackson’s next feeding! It was a rough night ya’ll...but better days are yet to come, right!
Jackson update: It was a rough transition home for the little man, who spent the majority of the night in mommy's arms, and slept on daddy's chest through out the night. The stress level goes through the roof every time his pulse/ox monitor alarm goes off - but I am sure that we will get use to the new sounds in this land. His feedings are long - as he is currently taking about 30ml via a bottle in 10-15 minutes, and then is exhausted and falls asleep, forcing us to give the remaining 35-40ml through the feeding tube over the next 15-20 minutes. As we unpacked the supplies from the hospital our kitchen was transformed into a pharmacy with all the different syringes, meds and supplies. It is crazy - and his daily medicine schedule is intense and is going to take some getting use to! But God is good...and it was an awesome early Christmas present to have him home today! Thank you Lord for your incredible joy, favor, blessing and healing in Jackson's life and upon our family!
Day 20: "First 'nose'"
As Kelly, Jackson, Jordyn and I woke at 6:00am for an early morning feeding...Jordyn shouts, "daddy!" and then proceeds to point out the window..."nose!" In two year old lingo, that is in reference to the 4inches of fresh snow that we awoke to this morning here in the 'burgh! It was an absolutely beautiful and pristine morning...and Carter woke up so excited for "Jackson's first snow!" There is nothing better than watching the awe and wonder that fills a child's eyes, following the first snow of the season!
So after breakfast and 6 cups of coffee...daddy ventured out to shovel the steps quick in preparation for Jackson's home nurse to visit. Little did I know that daddy was also going to need a nurse! After getting my winter gear on and shovel in hand...the garage door went up, and daddy went down! There is a little rain edge/step where the garage door meets the driveway and daddy (still learning the new house) literally hit the ground on the first step and blew his left ankle out! Not a good start to the weekend...but I could here my God say "I told you to just rest, focus on Kel and the kids, and get your feet up this weekend!" And so that is exactly what Kelly and I did for the rest of the weekend!
Today was a great pajama day - full of laughs, food, games, and great "Norman Rockwell" moments like the one captured below as we capped off a wonderful day with Carter's request of an "inside campfire" - as we try to figure out the “new normal” and routine as a family!
Jackson update: Jackson was a rock-star today! He did so well! We figured out a feeding and med schedule that worked perfectly - today! Jackson continues to take 30-35ml by bottle and then the remaining 25-30ml are given through the feeding tube, and he pretty much slept in between feedings, which are occur every three hours. When he is awake - he is extremely alert and loves to watch Carter and Jordyn play! The interaction between these three is amazing - and Jordyn is growing up right in front of our eyes! It is awesome! Carter continues to show tremendous compassion and care, and is blowing us away by the responsibility he has embraced as big brother.
Day 21: "Sabbath"
Then Jesus said to them, "The Sabbath was made for man, not man for the Sabbath." [Mark 2:27]
Today was truly a day of divine rest! Kelly and I continue to be overwhelmed with God's Peace and Strength, focusing on faithfully learning the new routine of a day in the life of the Barrett's, as everything has been shaken! There is not one element that is even remotely similar to last week, and we have definitely transitioned from man to man defense to a zone blitz concept! We are outnumbered...no doubt - but loving every minute of it!
We had some great conversations and quiet moments today - as I referenced in the opening – which were a true blessing to our marriage, family and relationship! It was another day of "jammies" at Jordyn's request...and capped off a phenomenal weekend!
Jackson update: Well it finally happened...he took a full bottle by mouth! It happened this afternoon at his 3pm feeding - all 65ml of fortified breast milk by mouth! Hallelujah! It was huge step and moment - and he continued to take full bottles throughout the night. We did not have to use the feeding tube at all...which is such a blessing! We are so excited and look forward - if this continues – to when they allow us to take out the feeding tube!
Day 22: Well...
It's Monday! After sleeping in an extra half hour this morning - which turned out to be a huge mistake - as we were off schedule from the start! And man did we ever pay the price! It was a morning of playing catch up, desperately trying to get back on track - and we just never did! For whatever reason...things just did not click today! It was tough...
Kailey, our nanny who has been a tremendous blessing, arrived around 9am to help get Carter and Jordyn ready for their play date this morning at our neighbor/good friend Jenn's house. Kelly, Carter and Jordyn had a great time with some other mothers and kids in the neighborhood playing, reading Christmas story books and making reindeer food for when Santa visits this Thursday night! So…Kailey just hung out with Jackson, and cleaned a little, allowing me to grab some much needed office time, as I am trying to catch up on some calls and dig out from taking time off over the last two weeks. Jackson's home nurse (who will come to the house every Monday and Friday for an hour to track his progress) arrived early – which just added another wrinkle to the morning! Here we go…
After a morning of intense activity for Jackson - he was irritated and threw up his noon feeding...and by this point, you could really feel that the wheels were coming off this train! Jordyn did not want to nap, and may have slept for an hour - if that! Carter was wanting/requiring some extra attention, and then the phone rang...
It was Erin from the Children's Hospital Cardiothoracic team, who a concerned about the report from our home nurse, Winonna – Jordyn calls her “Miss Nona” - that Jackson has not gained any weight since discharge Friday – actually he has lost a few ounces, which is a huge deal for a heart baby as we are finding out. We were fortifying Kelly's milk with 1/4 teaspoon of Good Start formula (to add some calories) and an adjustment to his caloric intake was necessary – immediately! Through out a series of conversations and reporting – we found out that we were to be adding 1/4 tablespoon not a teaspoon per every 65ml…oops! Somewhere/somehow in the hustle and bustle of discharge and the massive overload of information and instruction - a mistake had been made, but Praise the Lord we found the root cause of Jackson's weight loss.
So we increased the amount of formula fortifier to a 1/4 tablespoon (which is three times more than what we were giving him) – and almost instantly Jackson became extremely fussy and gassy – after being very calm all of Saturday and Sunday! Every time there seems is a change in his diet, the transition is extremely difficult for him. As a heart baby - Jackson burns many calories just by eating, and there is a very delicate and difficult balance of intake of calories vs. calories spent to get them, and one that is extremely necessary.
The remainder of the day was spent trying to comfort and console Jackson as he struggled with every feeding, becoming more and more irritated, gassy, and fussy – which led to vomiting from the new fortification recipe! He did not sleep at all through the evening, was absolutely exhausted and fussy, and could just not get comfortable enough to sleep for an extended period of time, and so we resorted to once again allowing him to sleep on daddy's chest! Truly I did not mind…but it did not make for a good night’s sleep for anyone!
It was extremely rough...and a very overwhelming day! But – God’s Grace got us through a day full of difficult and stressful moments, and we hold firm to the promise that greater things are yet to come! God never said it would be easy, just promised it would be worth it!
Day 23: "Necessary Adjustments"
After an awful night’s sleep...Kel and I woke up together for Jackson's 6am feeding, in hopes to starting today off on the right foot! The only stretch of consistent sleep either one of us got was between midnight and 3am - as Jackson threw up following his 9pm and 3am feedings! Both of us were exhausted...and as we had breakfast together, we looked at each other and said "I think there are some necessary adjustments we need to make!" His 6am feeding was again one that caused him great discomfort - and his crying/fussiness woke Jordyn at 6:45am...which was not the adjustment we were hoping for! It took us all morning to just get out the door for our 10am pediatrician appointment - and already felt like we put in a full day! On our way to the pediatrician appointment, we decided it was time to again contact the team at Children's and try another adjustment to his feeds! They agreed - and so this afternoon we are trying a new recipe, with a change in formulas. Jackson has calmed tremendously and has spent most of the afternoon sleeping, and we hope that this is the adjustment that will allow our little warrior to gain weight, while being comfortable!
His pediatrician appointment went well (minus Jackson crying through the majority of the visit) and Dr. Kinicki was absolutely amazed at how well he looked following his Norwood surgery, just two weeks ago today! It was awesome to get her medical - out side – perspective, as even she was shocked and amazed at how well he has recovered! He truly is a miracle baby...and God is demonstrating His power and healing in mighty ways!
Truly - we are battling right now, no doubt about it...and as the fatigue of the walk in this land will continue to be an elment of the good fight, we must remain armored with the Truth, Rest, Love, Faith, Peace, Hope and Strength of our Savior - Christ Jesus! Our prayer is that He would continue to draw us closer to Him - giving us the desires of our heart as we try to embrace this land. We know that we are only able to reflect His Glory and Image as walk we surrender, live by Faith and take possession of this promised land! There is divine rest in Him, as we trust His Ways over ours and obey His Will, but the battle is intense and the challenge mighty! But Faith - our small mustard seed faith - can and will overcome these mountains! iThis land is far better than anything our selfish desires could ever imagine - and we are not going back to Egypt! Stand on His promises...and thank you for walking with us!
Continue to keep All Eyes on Jesus!
The Gaither Homecomings, have nothing on the last four days of the Barrett Homecoming! Talk about pure joy...
While Jordyn and Jackson took a nap on Sunday afternoon, and Carter snuggled up on the couch for his daily Christmas tradition of "Mickey's Twice Upon a Christmas" movie – Kelly and I had the opportunity to grab a few minutes of quiet, devotion and conversation over our weekend of "biblical rest"! As we reflected over the past weekend, and what the Lord has taught us in this land, we "prayer talked" through the above scripture...and the following question was laid on our hearts as we read the Lord's promise above...what land is the Lord referring to here? And as we studied together...there is a earthbound reality, but also a Heavenly reference of our Glorious Future, Promise and Hope found in our relationship with Christ!
As I shared on my last post - throughout the day Thursday the Lord laid on my heart His monologue and charge to Joshua days before leading the Israelites through the Jordan River to the Land of Promise! The Land overflowing with milk and honey - that was also inhabited by Giants! The same Giants that captured the attention, focus and worry of their ancestors…which led to 40 years of wondering in the desert as a generation died...a river's view away from the land of favor, blessing, and provision! And you guessed it...the land that is referenced above in Jeremiah 30:3, is the same land that the Lord promised to Moses as he led the Israelites out of Egypt! And as we went back to the scripture...we were amazed at the words, encouragement and Truth foud in Joshua's charge to the warriors of Israel - immediately following God's "be strong and courageous" pre-battle speech:
...Then Joshua called together the tribes of Reuben, Gad, and the half-tribe of Manasseh. He told them, “Remember what Moses, the servant of the Lord, commanded you: ‘The Lord your God is giving you a place of rest. He has given you this land.’... [Joshua 1: 12]
I don’t know about you, but I find it absolutely fascinating that the Lord our God gives us a place of rest smack dab in the middle of adversity, difficulty, battle and Giants. His Promise is divine rest in Him...IF we are willing to embrace this land - by Faith -and walk the journey according to His good, pleasing and perfect Will! Often times our own dreams, expecations, control, physical wants and selfish desires get in the way of true rest that is found only in Christ, as we are confronted by and turn to the deception of worldly schemes in desperatation for our tired and weary souls! But true rest, comfort and security are found in the intamacy of our relationship with Christ - which is a lesson that Kel and I continue to learn...
7 years ago - in the midst of our "I do's" - Kelly and I made a "we do" covenant before the Lord that in and through our marriage this house will serve the Lord - and even though our "agent" (sarcasm) did not mention the details of this particular part of the journey in our contract - we embrace and find rest in this land that is overflowing with blessing, miracles and favor of our Lord Jesus! We will continue to praise our Heavenly Father as we walk by Faith in obedience to God's Will through this land of adversity, hardship, and massive giants that still inhabit this land of promise! Especially now that Jackson is home!
Are there situations that can create hesitation and fear? You better believe it! But the "overwhelming feeling" comes only when our eyes are on the circumstances of the journey, land, appointments and hurdles and not our Savior! Trust me - we are no where near perfect in keeping our eyes on Jesus - and please don't think that the rally cry of "All Eyes on Jesus" is just for those reading this blog! It is for the knucklehead writing this blog as well! We are getting ready for battle as we come home to this land - through the power of prayer and with the promise of His Peace and Strength...and so we will live victoriously, as we find divine rest in our relationship with Christ Jesus!
Day 19: "Road Trip"
After a morning of final preparations at home by Carter, Jordyn and Daddy...it was time for Daddy to head to the hospital and pick up Mommy and Jackson! As I walked onto the 8th floor...huge smiles greeted me - as there was quite the buzz, hype and joy filling the unit as many stood in disbelief that Jackson was heading home - only 10 days - after his Norwood Surgery! We came to find out, that Jackson indeed was the fastest Norwood recovery in Pittsburgh Children's Hospital, and the only "closed chest" Norwood patient that many of our team of doctors and nurses have ever seen or heard of coming out of the surgery! And looking back at the pictures from just 10 days ago - I can't believe that we are bringing our little, miracle warrior home today! Our God is Almighty and Everlasting!
After a few last minute discharge instructions, and three trips to the car with "stuff" (could have used a pack mule!) it was time for the "good-bye's" - or more like "see you soon's"! But...as we went to unplug Jackson's pulse/oxygen monitor - we found out that his unit did not have a back up battery that was working properly! Come on man! So with the car packed, coats on, Jackson ready in his carrier - it was time to "wait!" - been here before…as Kelly and I just saw it as another reminder that the Lord was with us!
In the hour we had to wait for a new machine - Jackson had the opportunity to say good-bye to some of his nurses from the CICU, and get some "snuggle time" with Dana and Joanne (two members of Jackson's cardiothoracic, surgical team with Dr. Morell - before the longest walk of our lives!
What took 5 minutes to go down the elevators, pay for parking (again) and walk to the car - seemed like eternity...especially with the scare Jackson gave daddy in the lobby! As I carried him in his carrier...I looked down and he was ghost white! And when I went to wake him...I could not get him to respond!
Jackson has done this from time to time in the hospital, as his saturations drop - but once you are able to stir him, he is able to rebound his oxygen levels - but you never get use to it and it just truly freaks me out! But of course - mommy stayed extremely calm, and shared a little "encouragement" (you might call it) with daddy that freaking out is not going to help anyone in this transition home! See...told you I wasn't perfect! And man did the Holy Spirit ever speak through Kelly during this 2 minute encouragement session..."Doug, you have the choice! Lead courageously or cause more anxiety, worry, and fear for your family!" And after a quick moment of prayer and a deep breath...it was time to step up and enter the promised land! It was a long car ride home - with Jackson's alarms going off most of the way, due to setting the limits wrong in the rush of discharge, but once we got home around 4:30...an overwhelming sense of unity and peace swept through our home! Finally - the five of us were together – as the Lord had promised!
Carter...has been absolutely amazing! He was so excited to be "a big brother again" - as he put it - and to see his love for his little brother is just awesome! From holding Jackson, playing with him, helping with his bottles, pacifier, and sweeties (a sugar water solution that the nurses in the CICU put on Jackson’s pacifier to help calm him) it is just incredible to see the care and compassion that Bubba has for Jackson!
And as for Jordyn...she has been absolutely hilarious! Every time Kelly goes to check Jackson with the stethoscope, Jordyn runs to her toy medical bag, pulls out her stethoscope and starts checking his knee! Every time Jackson cries...she wants to hold "momy's baby", and at the first diaper change...Jordyn ran and grabbed her step-stool from the bathroom and was right beside mommy for his first "poo-poo" at home! Every now and then (most times completely out of the blue) Jordyn will walk over and give him a kiss on his forehead with a little "luv-oo" to go with it!
And after tucking Carter and Jordyn into bed...it was time to try and grab some sleep in between feedings…but that hope did not become a reality! Every time Jackson would start to stir/cry - Jordyn (who is an extremely light sleeper) would wake and want to see "baby"! We may have gotten a total of 3 hours sleep, and at 4:30am - Jordyn and Jackson were in bed with Kel and I as we desperately tried to grab an hour of sleep before Jackson’s next feeding! It was a rough night ya’ll...but better days are yet to come, right!
Jackson update: It was a rough transition home for the little man, who spent the majority of the night in mommy's arms, and slept on daddy's chest through out the night. The stress level goes through the roof every time his pulse/ox monitor alarm goes off - but I am sure that we will get use to the new sounds in this land. His feedings are long - as he is currently taking about 30ml via a bottle in 10-15 minutes, and then is exhausted and falls asleep, forcing us to give the remaining 35-40ml through the feeding tube over the next 15-20 minutes. As we unpacked the supplies from the hospital our kitchen was transformed into a pharmacy with all the different syringes, meds and supplies. It is crazy - and his daily medicine schedule is intense and is going to take some getting use to! But God is good...and it was an awesome early Christmas present to have him home today! Thank you Lord for your incredible joy, favor, blessing and healing in Jackson's life and upon our family!
Day 20: "First 'nose'"
As Kelly, Jackson, Jordyn and I woke at 6:00am for an early morning feeding...Jordyn shouts, "daddy!" and then proceeds to point out the window..."nose!" In two year old lingo, that is in reference to the 4inches of fresh snow that we awoke to this morning here in the 'burgh! It was an absolutely beautiful and pristine morning...and Carter woke up so excited for "Jackson's first snow!" There is nothing better than watching the awe and wonder that fills a child's eyes, following the first snow of the season!
So after breakfast and 6 cups of coffee...daddy ventured out to shovel the steps quick in preparation for Jackson's home nurse to visit. Little did I know that daddy was also going to need a nurse! After getting my winter gear on and shovel in hand...the garage door went up, and daddy went down! There is a little rain edge/step where the garage door meets the driveway and daddy (still learning the new house) literally hit the ground on the first step and blew his left ankle out! Not a good start to the weekend...but I could here my God say "I told you to just rest, focus on Kel and the kids, and get your feet up this weekend!" And so that is exactly what Kelly and I did for the rest of the weekend!
Today was a great pajama day - full of laughs, food, games, and great "Norman Rockwell" moments like the one captured below as we capped off a wonderful day with Carter's request of an "inside campfire" - as we try to figure out the “new normal” and routine as a family!
Jackson update: Jackson was a rock-star today! He did so well! We figured out a feeding and med schedule that worked perfectly - today! Jackson continues to take 30-35ml by bottle and then the remaining 25-30ml are given through the feeding tube, and he pretty much slept in between feedings, which are occur every three hours. When he is awake - he is extremely alert and loves to watch Carter and Jordyn play! The interaction between these three is amazing - and Jordyn is growing up right in front of our eyes! It is awesome! Carter continues to show tremendous compassion and care, and is blowing us away by the responsibility he has embraced as big brother.
Day 21: "Sabbath"
Then Jesus said to them, "The Sabbath was made for man, not man for the Sabbath." [Mark 2:27]
Today was truly a day of divine rest! Kelly and I continue to be overwhelmed with God's Peace and Strength, focusing on faithfully learning the new routine of a day in the life of the Barrett's, as everything has been shaken! There is not one element that is even remotely similar to last week, and we have definitely transitioned from man to man defense to a zone blitz concept! We are outnumbered...no doubt - but loving every minute of it!
We had some great conversations and quiet moments today - as I referenced in the opening – which were a true blessing to our marriage, family and relationship! It was another day of "jammies" at Jordyn's request...and capped off a phenomenal weekend!
Jackson update: Well it finally happened...he took a full bottle by mouth! It happened this afternoon at his 3pm feeding - all 65ml of fortified breast milk by mouth! Hallelujah! It was huge step and moment - and he continued to take full bottles throughout the night. We did not have to use the feeding tube at all...which is such a blessing! We are so excited and look forward - if this continues – to when they allow us to take out the feeding tube!
Day 22: Well...
It's Monday! After sleeping in an extra half hour this morning - which turned out to be a huge mistake - as we were off schedule from the start! And man did we ever pay the price! It was a morning of playing catch up, desperately trying to get back on track - and we just never did! For whatever reason...things just did not click today! It was tough...
Kailey, our nanny who has been a tremendous blessing, arrived around 9am to help get Carter and Jordyn ready for their play date this morning at our neighbor/good friend Jenn's house. Kelly, Carter and Jordyn had a great time with some other mothers and kids in the neighborhood playing, reading Christmas story books and making reindeer food for when Santa visits this Thursday night! So…Kailey just hung out with Jackson, and cleaned a little, allowing me to grab some much needed office time, as I am trying to catch up on some calls and dig out from taking time off over the last two weeks. Jackson's home nurse (who will come to the house every Monday and Friday for an hour to track his progress) arrived early – which just added another wrinkle to the morning! Here we go…
After a morning of intense activity for Jackson - he was irritated and threw up his noon feeding...and by this point, you could really feel that the wheels were coming off this train! Jordyn did not want to nap, and may have slept for an hour - if that! Carter was wanting/requiring some extra attention, and then the phone rang...
It was Erin from the Children's Hospital Cardiothoracic team, who a concerned about the report from our home nurse, Winonna – Jordyn calls her “Miss Nona” - that Jackson has not gained any weight since discharge Friday – actually he has lost a few ounces, which is a huge deal for a heart baby as we are finding out. We were fortifying Kelly's milk with 1/4 teaspoon of Good Start formula (to add some calories) and an adjustment to his caloric intake was necessary – immediately! Through out a series of conversations and reporting – we found out that we were to be adding 1/4 tablespoon not a teaspoon per every 65ml…oops! Somewhere/somehow in the hustle and bustle of discharge and the massive overload of information and instruction - a mistake had been made, but Praise the Lord we found the root cause of Jackson's weight loss.
So we increased the amount of formula fortifier to a 1/4 tablespoon (which is three times more than what we were giving him) – and almost instantly Jackson became extremely fussy and gassy – after being very calm all of Saturday and Sunday! Every time there seems is a change in his diet, the transition is extremely difficult for him. As a heart baby - Jackson burns many calories just by eating, and there is a very delicate and difficult balance of intake of calories vs. calories spent to get them, and one that is extremely necessary.
The remainder of the day was spent trying to comfort and console Jackson as he struggled with every feeding, becoming more and more irritated, gassy, and fussy – which led to vomiting from the new fortification recipe! He did not sleep at all through the evening, was absolutely exhausted and fussy, and could just not get comfortable enough to sleep for an extended period of time, and so we resorted to once again allowing him to sleep on daddy's chest! Truly I did not mind…but it did not make for a good night’s sleep for anyone!
It was extremely rough...and a very overwhelming day! But – God’s Grace got us through a day full of difficult and stressful moments, and we hold firm to the promise that greater things are yet to come! God never said it would be easy, just promised it would be worth it!
Day 23: "Necessary Adjustments"
After an awful night’s sleep...Kel and I woke up together for Jackson's 6am feeding, in hopes to starting today off on the right foot! The only stretch of consistent sleep either one of us got was between midnight and 3am - as Jackson threw up following his 9pm and 3am feedings! Both of us were exhausted...and as we had breakfast together, we looked at each other and said "I think there are some necessary adjustments we need to make!" His 6am feeding was again one that caused him great discomfort - and his crying/fussiness woke Jordyn at 6:45am...which was not the adjustment we were hoping for! It took us all morning to just get out the door for our 10am pediatrician appointment - and already felt like we put in a full day! On our way to the pediatrician appointment, we decided it was time to again contact the team at Children's and try another adjustment to his feeds! They agreed - and so this afternoon we are trying a new recipe, with a change in formulas. Jackson has calmed tremendously and has spent most of the afternoon sleeping, and we hope that this is the adjustment that will allow our little warrior to gain weight, while being comfortable!
His pediatrician appointment went well (minus Jackson crying through the majority of the visit) and Dr. Kinicki was absolutely amazed at how well he looked following his Norwood surgery, just two weeks ago today! It was awesome to get her medical - out side – perspective, as even she was shocked and amazed at how well he has recovered! He truly is a miracle baby...and God is demonstrating His power and healing in mighty ways!
Truly - we are battling right now, no doubt about it...and as the fatigue of the walk in this land will continue to be an elment of the good fight, we must remain armored with the Truth, Rest, Love, Faith, Peace, Hope and Strength of our Savior - Christ Jesus! Our prayer is that He would continue to draw us closer to Him - giving us the desires of our heart as we try to embrace this land. We know that we are only able to reflect His Glory and Image as walk we surrender, live by Faith and take possession of this promised land! There is divine rest in Him, as we trust His Ways over ours and obey His Will, but the battle is intense and the challenge mighty! But Faith - our small mustard seed faith - can and will overcome these mountains! iThis land is far better than anything our selfish desires could ever imagine - and we are not going back to Egypt! Stand on His promises...and thank you for walking with us!
Continue to keep All Eyes on Jesus!
Friday, December 18, 2009
"Be strong and courageous, because you will lead these people to inherit the land I swore to their forefathers to give them. Be strong and very courageous. Be careful to obey all the law my servant Moses gave you; do not turn from it to the right or to the left, that you may be successful wherever you go. Do not let this Book of the Law depart from your mouth; meditate on it day and night, so that you may be careful to do everything written in it. Then you will be prosperous and successful. Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." [Joshua 1:6-9, NIV]
Is there a passage of scripture that has captured your heart and continuously speaks to the depth of your soul? If I had to pick just one it would be the words of our God to Joshua found here in Joshua chapter one. God prepared Joshua to lead - courageously - a nation in and through the impossible to recieve the promise, by speaking direct words of encouragement, revelation, and truth! But like never before...this scripture has gripped my heart over the last three days, and challenged me in ways that the Holy Spirit is still revealing...buckle up, it is going to be an awesome ride!
Do you remember standing in line for what seemed like forever to board your favorite thrill ride? As the hot summer sun beat down on you...you envisioned what the roller coaster, bungee/base jump, skydiving trip, or another unfathomable ride would be like - only to be blown away and speechless as you walked away! And the people in line...do remember them? How they would put their gum under the railings, talk about the strangest of things, laugh at the stupidest of things, "love" on each other, scribble graffiti and love (and not so lovely) notes on anything that would hold ink. Do you remember your gut beginning to stir as you would get closer and closer for the opportunity to board the ride, and then it is time to buckle up that the 5-point safety harness! Followed by the double check, the push of that little green button, the crazy hand gestures between the safety/ride attendants...and then finally the jump, push off, start, or "delivery"...but don’t forget about the reactions! How intense and how diverse...from screams to laughs! From tears to smiles! From ghost-white faces to expressions of pure joy!
I have always said that I can't wait to get to heaven to see God's roller coasters! His "thrill ride" journeys here on earth are something - but can you imagine the twists, turns, inclines, declines, loops, corkscrews, gravity defying drops, and g-forces that Heaven's amusement park will offer! It's going to be something...and I can't wait to ride in and for eternity!
Well...over the last 6 months we have been standing in line! We have met and formed some awesome relationships with some amazing people (friends and strangers) during our "forever" wait! And Praise the Lord that we didn't feel the need to encourage them to "get a room"... but the people who have stood with and beside us during our time of "waiting on the promise" have truly changed our posture and perspective on community, friendship and the Body of Christ! And God's demonstration and expression of His Grace, Love, Encouragement, Support, Provision and Mercy through you all...has been seriously ridiculous!
The wait was intense - no doubt! And how our stomachs started to stir with anxiety as the pressure of the commencement moment grew closer...reminds me of our blind date, the second date two weeks later, our first kiss, our engagement under the stars at Whitehall Camp and Conference Center, our wedding day (which, we will be celebrating 7 years of marriage on the 28th - and what incredible memories and blessings those 7 years have held! Thank you Lord for an awesome wife, marriage and family!) the birth of Carter and Jordyn...and as we took our seat and buckled in for "Jackson" I am not sure anything could have ever prepared us for the way that God has "thrilled", shocked and awed us all in the last 20 days! He truly has moved mountains and performed miraculous healing...and now...is calling us to be strong and courageous, to get ready, and walk in and through the promise – right now!
Day 16: "Moving on up..." [Tuesday, December 15, 2009]
After a day of rest and preparation in the CICU, it was time to move on up to the 8th floor! It was an incredible morning...as Kelly and I were able to get in to the hospital early, prepare, and take a deep breath – heck, I was even able to catch up on some work/paperwork/contacts...but then the word came! It was time to go!
To be honest with you...I balked! There was such a rush of emotion and anxiety as we walked out of the CICU - Jackson in my arms, our nurse Lauren pulling his crib/bed and Kelly saying good-bye to all of those who have become great friends over the last two weeks! It was hard...and to be honest - I really did not want to leave our place of security, blessing, refuge, comfort, care, incredible favor and glorious miracles! But it was time to go...and the Lord said “get up and let’s go”!
And as we walked onto the 8th floor, we were greeted with smiles and excitement - but we were anything but smiling! We were so nervous, overwhelmed, scared to death...because we now know that we are that much closer to coming home! Again - we expected to be in the CICU for at least 3 weeks with a remote possibility of going home Christmas Eve or Day - and here we are a week after surgery stepping down to the Cardiac Unit to prepare for discharge! Are you kidding me...
But after several conversations with our lead PA-C, Erin and absolutely, awesome nurse Jaci (who had taken care of Jackson more than anyone in the CICU and "just happened" to be on the 8th floor this week! Talk about God sending His angels to minister to those in need!) mommy and daddy settled in...rearranged the room, as only two first borns would do...and then stepped up! We knew it was now time for us to learn Jackson's care, and it was great to get more "hands on" with Jackson - but it was tough to leave our "comfort zone" with the constant watch of a nurse “crib side” in the CI. But we were excited and ready...after a little pep talk from Jaci!
Jackson was extremely fussy, gassy, and uncomfortable through out the day and the biggest hurdle to conquer/learn is going to be his feeding tube - which had to be put back in to ensure that he receives the calories necessary to maintain and gain weight. The goal is for him to take 3oz of fortified, breast milk every 3 hours! It is an intense diet...and one that I believe is preparing him to be an offensive lineman! But, other than his feeds/feeding tube - our focus is now to learn how use the equipment we will be coming home with (monitors, etc.), the schedule/dose of his daily 5 medicines and the care he will need daily. It truly is just a transitional time...and it all depends on Jackson as to when we will be coming home! So…look out world here he comes!
Day 17: "Right Now!"
Today was truly just a day of learning – on so many levels! After a quick visit this morning...daddy had to juggle the "work" ball all day today! After an awesome lunch conversation and some overdue phone calls, I headed back to the house late in the afternoon to spend some time with Carter and Jordyn, before the three of us went to the hospital to pick up Kel!
Kelly and Jackson had a great day at the hospital together – and he seems to have rebounded very well after a rough day yesterday - and seems to be adjusting to his new schedule, room, feeds, and meds! Mommy is gaining confidence in her care and support of Jackson - and I could just hear a "lift" in her voice as we talked around 4pm...but I will never forget the tone in her voice of our next conversation!
I loaded Carter and Jordyn up in the car around 5pm to head to the hospital and pick up Kel. We could not have been a mile from the house when Kelly called. When I answered, all she said was..."are you sitting down?"
"Well, of course I am - I am driving!" I replied.
"Are you at a stop light?"
"No..."
"You might want to find one!"
By this time...she obviously had my attention! "Kelly, what's going on...is everything alright?"
And here are the words I will never forget: "Doug...everything is great! And they just told me that they want to discharge Jackson, Friday!"
My reaction..."WOW!" Then pure silence for two minutes! I had no words...
And then went into panic mode!
"What do mean? How can this be? We just got to the floor yesterday. I am not ready for this? We have no one to take care of Carter and Jordyn?" and so on...
It was almost like I said to God..."This is incredible! What an awesome miracle - but no thanks!"
Sound familiar? It would if you were to read the response of the Israelites, after hearing the reports from the scouts of the Promised Land - that just happened to be full of giants!
But after an hour long "come to Jesus meeting" in prayer/devotion, convesations with my wise counsel, and breakfast for dinner with Carter and Jordyn at Eat'n Park...my response was different, "Lord, I am not ready for this! But I know you are calling me to be strong and courageous, and that you are right here with us! You know the giants ahead – but in You…all things are possible!"
Ya’ll I am scared to death! I don't feel as though I am ready...but God is Great! And He is the one in control! He will provide! And I will "play this play", and not worry about the next! Trusting that in Him - all things are possible...for He is our Strength, Refuge and Peace!
Day 18: "Med School!"
But...just as our Lord told Joshua before crossing the Jordan...it is time to not only be strong and courageous for I am with you every step of the way, but "get prepared! Get the camp ready!"
So today was a crash course at “med school”! I spent the morning learning the meds, how to use a real stethoscope, the feeding tube and the care necessary to bring Jackson home! And guess who taught me...Kelly! You should have seen her! It was amazing! She is an absolutely incredible mother...but who is this woman that is teaching me all these incredible medical skills and knowledge! It was seriously ridiculous to see her touch, courage and love for our little warrior…and to see her confidence, care and skill prepared me in ways I never thought possible! She is absolutely amazing…and we are ready!
So TOMORROW...Friday, December 18 - just 10 days after Jackson's Norwood Surgery...we are bringing our little warrior home! Can you believe it? How awesome is our God! Praise His Name for He alone is Worthy of our Praise!
But, in all the excitment and thrill - our team of doctor's sat us down yesterday and reminded us that Jackson is still very sick and has a long road ahead! There are many precautions being put into place (learning CPR, contacting our emergency responders, etc) in order to make sure that "going home" is a safe and healthy transition for Jackson! And I would ask for your continued prayers...not just for Jackson and our immediate family, but for all involved - family, friends, nurses and doctors!
It was very hard to hear the doctors ask us NOT to attend Christmas Eve Services, holiday get-togethers with friends and family, have a "revolving door" of visitors over to the house or take Jackson out in public! I know that there are many people who are anxious and excited to meet our miracle baby...but it is still going to be quite a while - probably after his second surgery at three months old - until our team of doctors take a deep breath and lift some of these "healthy" boundaries! They reminded us yet again, that what would be the common cold to Carter and Jordyn...could put Jackson in the hospital, and be a major set back in his healing and care - and they/we are not willing to risk that now! It is going to be hard...but we trust that God's Strength and Grace will abound, and that soon and very soon Jackson will be a healthy and stable miracle baby - that can sing Praises to His Healer and tell of His Great Love with the choirs of God’s people!
Thank you! Thank you for standing with us through your continued prayer foundation, encouragement and love! We are so excited…and so are Carter and Jordyn! You should have seen how the two of the have helped daddy get ready for their little brother to come home! There are no words to describe the joy that is filling our hearts…Praise God - from whom ALL blessings flow! He is The God of Miracles...and we are so blessed!
All Eyes on Jesus!
Is there a passage of scripture that has captured your heart and continuously speaks to the depth of your soul? If I had to pick just one it would be the words of our God to Joshua found here in Joshua chapter one. God prepared Joshua to lead - courageously - a nation in and through the impossible to recieve the promise, by speaking direct words of encouragement, revelation, and truth! But like never before...this scripture has gripped my heart over the last three days, and challenged me in ways that the Holy Spirit is still revealing...buckle up, it is going to be an awesome ride!
Do you remember standing in line for what seemed like forever to board your favorite thrill ride? As the hot summer sun beat down on you...you envisioned what the roller coaster, bungee/base jump, skydiving trip, or another unfathomable ride would be like - only to be blown away and speechless as you walked away! And the people in line...do remember them? How they would put their gum under the railings, talk about the strangest of things, laugh at the stupidest of things, "love" on each other, scribble graffiti and love (and not so lovely) notes on anything that would hold ink. Do you remember your gut beginning to stir as you would get closer and closer for the opportunity to board the ride, and then it is time to buckle up that the 5-point safety harness! Followed by the double check, the push of that little green button, the crazy hand gestures between the safety/ride attendants...and then finally the jump, push off, start, or "delivery"...but don’t forget about the reactions! How intense and how diverse...from screams to laughs! From tears to smiles! From ghost-white faces to expressions of pure joy!
I have always said that I can't wait to get to heaven to see God's roller coasters! His "thrill ride" journeys here on earth are something - but can you imagine the twists, turns, inclines, declines, loops, corkscrews, gravity defying drops, and g-forces that Heaven's amusement park will offer! It's going to be something...and I can't wait to ride in and for eternity!
Well...over the last 6 months we have been standing in line! We have met and formed some awesome relationships with some amazing people (friends and strangers) during our "forever" wait! And Praise the Lord that we didn't feel the need to encourage them to "get a room"... but the people who have stood with and beside us during our time of "waiting on the promise" have truly changed our posture and perspective on community, friendship and the Body of Christ! And God's demonstration and expression of His Grace, Love, Encouragement, Support, Provision and Mercy through you all...has been seriously ridiculous!
The wait was intense - no doubt! And how our stomachs started to stir with anxiety as the pressure of the commencement moment grew closer...reminds me of our blind date, the second date two weeks later, our first kiss, our engagement under the stars at Whitehall Camp and Conference Center, our wedding day (which, we will be celebrating 7 years of marriage on the 28th - and what incredible memories and blessings those 7 years have held! Thank you Lord for an awesome wife, marriage and family!) the birth of Carter and Jordyn...and as we took our seat and buckled in for "Jackson" I am not sure anything could have ever prepared us for the way that God has "thrilled", shocked and awed us all in the last 20 days! He truly has moved mountains and performed miraculous healing...and now...is calling us to be strong and courageous, to get ready, and walk in and through the promise – right now!
Day 16: "Moving on up..." [Tuesday, December 15, 2009]
After a day of rest and preparation in the CICU, it was time to move on up to the 8th floor! It was an incredible morning...as Kelly and I were able to get in to the hospital early, prepare, and take a deep breath – heck, I was even able to catch up on some work/paperwork/contacts...but then the word came! It was time to go!
To be honest with you...I balked! There was such a rush of emotion and anxiety as we walked out of the CICU - Jackson in my arms, our nurse Lauren pulling his crib/bed and Kelly saying good-bye to all of those who have become great friends over the last two weeks! It was hard...and to be honest - I really did not want to leave our place of security, blessing, refuge, comfort, care, incredible favor and glorious miracles! But it was time to go...and the Lord said “get up and let’s go”!
And as we walked onto the 8th floor, we were greeted with smiles and excitement - but we were anything but smiling! We were so nervous, overwhelmed, scared to death...because we now know that we are that much closer to coming home! Again - we expected to be in the CICU for at least 3 weeks with a remote possibility of going home Christmas Eve or Day - and here we are a week after surgery stepping down to the Cardiac Unit to prepare for discharge! Are you kidding me...
But after several conversations with our lead PA-C, Erin and absolutely, awesome nurse Jaci (who had taken care of Jackson more than anyone in the CICU and "just happened" to be on the 8th floor this week! Talk about God sending His angels to minister to those in need!) mommy and daddy settled in...rearranged the room, as only two first borns would do...and then stepped up! We knew it was now time for us to learn Jackson's care, and it was great to get more "hands on" with Jackson - but it was tough to leave our "comfort zone" with the constant watch of a nurse “crib side” in the CI. But we were excited and ready...after a little pep talk from Jaci!
Jackson was extremely fussy, gassy, and uncomfortable through out the day and the biggest hurdle to conquer/learn is going to be his feeding tube - which had to be put back in to ensure that he receives the calories necessary to maintain and gain weight. The goal is for him to take 3oz of fortified, breast milk every 3 hours! It is an intense diet...and one that I believe is preparing him to be an offensive lineman! But, other than his feeds/feeding tube - our focus is now to learn how use the equipment we will be coming home with (monitors, etc.), the schedule/dose of his daily 5 medicines and the care he will need daily. It truly is just a transitional time...and it all depends on Jackson as to when we will be coming home! So…look out world here he comes!
Day 17: "Right Now!"
Today was truly just a day of learning – on so many levels! After a quick visit this morning...daddy had to juggle the "work" ball all day today! After an awesome lunch conversation and some overdue phone calls, I headed back to the house late in the afternoon to spend some time with Carter and Jordyn, before the three of us went to the hospital to pick up Kel!
Kelly and Jackson had a great day at the hospital together – and he seems to have rebounded very well after a rough day yesterday - and seems to be adjusting to his new schedule, room, feeds, and meds! Mommy is gaining confidence in her care and support of Jackson - and I could just hear a "lift" in her voice as we talked around 4pm...but I will never forget the tone in her voice of our next conversation!
I loaded Carter and Jordyn up in the car around 5pm to head to the hospital and pick up Kel. We could not have been a mile from the house when Kelly called. When I answered, all she said was..."are you sitting down?"
"Well, of course I am - I am driving!" I replied.
"Are you at a stop light?"
"No..."
"You might want to find one!"
By this time...she obviously had my attention! "Kelly, what's going on...is everything alright?"
And here are the words I will never forget: "Doug...everything is great! And they just told me that they want to discharge Jackson, Friday!"
My reaction..."WOW!" Then pure silence for two minutes! I had no words...
And then went into panic mode!
"What do mean? How can this be? We just got to the floor yesterday. I am not ready for this? We have no one to take care of Carter and Jordyn?" and so on...
It was almost like I said to God..."This is incredible! What an awesome miracle - but no thanks!"
Sound familiar? It would if you were to read the response of the Israelites, after hearing the reports from the scouts of the Promised Land - that just happened to be full of giants!
But after an hour long "come to Jesus meeting" in prayer/devotion, convesations with my wise counsel, and breakfast for dinner with Carter and Jordyn at Eat'n Park...my response was different, "Lord, I am not ready for this! But I know you are calling me to be strong and courageous, and that you are right here with us! You know the giants ahead – but in You…all things are possible!"
Ya’ll I am scared to death! I don't feel as though I am ready...but God is Great! And He is the one in control! He will provide! And I will "play this play", and not worry about the next! Trusting that in Him - all things are possible...for He is our Strength, Refuge and Peace!
Day 18: "Med School!"
But...just as our Lord told Joshua before crossing the Jordan...it is time to not only be strong and courageous for I am with you every step of the way, but "get prepared! Get the camp ready!"
So today was a crash course at “med school”! I spent the morning learning the meds, how to use a real stethoscope, the feeding tube and the care necessary to bring Jackson home! And guess who taught me...Kelly! You should have seen her! It was amazing! She is an absolutely incredible mother...but who is this woman that is teaching me all these incredible medical skills and knowledge! It was seriously ridiculous to see her touch, courage and love for our little warrior…and to see her confidence, care and skill prepared me in ways I never thought possible! She is absolutely amazing…and we are ready!
So TOMORROW...Friday, December 18 - just 10 days after Jackson's Norwood Surgery...we are bringing our little warrior home! Can you believe it? How awesome is our God! Praise His Name for He alone is Worthy of our Praise!
But, in all the excitment and thrill - our team of doctor's sat us down yesterday and reminded us that Jackson is still very sick and has a long road ahead! There are many precautions being put into place (learning CPR, contacting our emergency responders, etc) in order to make sure that "going home" is a safe and healthy transition for Jackson! And I would ask for your continued prayers...not just for Jackson and our immediate family, but for all involved - family, friends, nurses and doctors!
It was very hard to hear the doctors ask us NOT to attend Christmas Eve Services, holiday get-togethers with friends and family, have a "revolving door" of visitors over to the house or take Jackson out in public! I know that there are many people who are anxious and excited to meet our miracle baby...but it is still going to be quite a while - probably after his second surgery at three months old - until our team of doctors take a deep breath and lift some of these "healthy" boundaries! They reminded us yet again, that what would be the common cold to Carter and Jordyn...could put Jackson in the hospital, and be a major set back in his healing and care - and they/we are not willing to risk that now! It is going to be hard...but we trust that God's Strength and Grace will abound, and that soon and very soon Jackson will be a healthy and stable miracle baby - that can sing Praises to His Healer and tell of His Great Love with the choirs of God’s people!
Thank you! Thank you for standing with us through your continued prayer foundation, encouragement and love! We are so excited…and so are Carter and Jordyn! You should have seen how the two of the have helped daddy get ready for their little brother to come home! There are no words to describe the joy that is filling our hearts…Praise God - from whom ALL blessings flow! He is The God of Miracles...and we are so blessed!
All Eyes on Jesus!
Monday, December 14, 2009
"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..
...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!
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!
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!
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!
Thursday, December 10, 2009
"Your ways, O God, are holy. What god is so great as our God?
You are the God who performs miracles; you display your power among the peoples." [Psalm 77: 13-14, NIV]
Day 11: Miracle Morning...
After dropping Carter and Jordyn off with Uncle Greg and Aunt Mel...the above scene is what greeted me this morning as I walked into Jackson's room! How awesome is our God - the God - of miracles! Only 48 hours after major heart surgery, mommy gets to hold her little warrior!
We got the incredible news early this morning from our nurses that Jackson had a great/quiet night and that his two chest tubes, A-line, and foley all had been taken out, he was back on his feeds and his oxygen flow level had been turned down...all before 8am! And maybe, just maybe, Kel and I would have the opportunity to hold our little man by the end of the day!
Well...God taught us once again that it is His timing and plan, and not anyone elses! And by 10:30am - Jackson was back in mommy's arms, and I can't even begin to tell you the joy that filled our hearts as tears filled the room! How Amazing! How Awesome is our Lord!
But the moment that redefined "awe-some" for us...was when Jaci and Heather handed Kelly a bottle - and for the very first time Jackson took 1oz of breast milk!!!! The amazing part is - "typically" heart babies go home with a feeding tube and here our little rock star is eating from a bottle 48 hours after surgery! And you should have seen the way Jackson "housed" that bottle! It was gone in literally 2 minutes! Absolutely awesome...and yet again - He has shocked the team of doctors and nurses with Jackson's progress! And in the words of Dr. Orr - today's Attending CICU doctor - "this is the slickest Norwood patient I have ever seen!" That coming from a man who has been in Cardiac pediatrics "forever" according to our nurses - and having cared for thousands of heart babies!
Your ways are Holy, O God...and your are displaying your power among the peoples!
We have had some great conversations today with our team of nurses and doctors - even had the opportunity to share the miracle of my motorcycle accident with the nursing staff, and our journey of faith over the last year! Thank you Lord for the opportunities you continue to open to share your story through our lives! God gives us the eyes to see, ears to hear and hearts to speak with wisdom into the relationships and opportunities you bring - so that you may draw people closer to yourself! Your love is unfailing - your mercies never ending - and your Grace abounding!
It truly has been a team effort here - including our team of prayer warriors - in and through this journey! And today has been an awesome day! Jackson is doing..."fabulous" seems to be the word of the day...and is currently off his Fentanyl (the strong pain drug) and they continue to wean him off his meds, trying to sustain the crucial balance to allow him to recover, rest and regain his strength! His sats and levels have been wonderful through out the day...and if things continue at this rate - we should be stepped down to the Cardiac Unit by the end of next week. Again - the team is very cautious, but extremely pleased by his progress! Please continue to pray for strength, rest, and Jackson's healing - for we truly believe that God is demonstrating His Glory, Majesty and Grace through the Power of Prayer!
We are heading to pick up the kiddos soon - and looking forward to a great night with Carter and Jordyn as we watch the Steelers take it to the Browns! Here we go Steelers...Here we go!
All Eyes on Jesus!
Wednesday, December 9, 2009
Breath of Life...
"We have seen His Glory, the Glory of the One and Only, who came from the Father, full of Grace and Truth...from the fullness of His Grace we have all received one blessing after another. For Grace and Truth - His Unfailing Love and Faithfulness - came through Jesus Christ our Lord." [John 1:15-17]
~Blessing is bowing down to receive the expressions of divine favor that in the inner recesses of the human heart and mind make life worth the bother~
[Beth Moore, Believing God]
I absolutely love the definition of "blessing" that Beth Moore lays out above...bowing down to receive the expressions of divine favor...and oh how our Lord has expressed His divine favor upon Jackson and our family today!
Day 10: The Breath of Life...
Today was a day full of surprises - starting at 8:00am...
I headed home late last night to grab some sleep in order to be well rested to spend the day with Carter and Jordyn, while Kelly stayed at the hospital to keep vigil over Jackson! We both got some rest - amazingly...but planning to be separated for the majority of the day today, made it an especially hard good bye last night at 11:00pm! BUT with our eyes fixed on our Savior we had great peace surrounding the decision...and then God rained down His divine favor!
This morning at 8:00am, Kelly's cousin Katie received a phone call - last minute - to let her know that she did not have to work today! Which turned out to be an immeasurable blessing! She was now able to spend the day with Carter and Jordyn, and allow me to be with Kel and Jackson! But the magnitude of this blessing was not realized until 11:20am...
As I pulled into the hospital's parking garage at 10:00am - Kelly called me on my cell. "Doug, where are you at? I just received word that they are hoping to take Jackson off the ventilator before lunch!"
"Don't worry sweetie...I just pulled in!"
Now, how awesome is it that our Lord worked it out in His perfect timing for me to be present crib side for an absolute miracle in my son's life!
Typically - following the Norwood surgery, a patient does not come off the ventilator for a week...and here they are wanting to take him off within 24 hours!!! Talk about God revealing his Glory!
And so, at 10:30am they turned off the ventilator - and Jackson's levels and oxygen saturation began to IMPROVE! At 11:00am they pulled out the tube, and by 11:20 we received the phone call while sitting in the cafeteria that the tube was out and Jackson was doing great! And when we got back to the room 10 minutes later - we were greeted with huge smiles on the faces of our nurses, doctors and respiratory team! Here...through out the entire process of transitioning Jackson off the ventilator - his levels and vitals continued to climb and were better and more stable off the ventilator than on it! Talk about breathing life!
And so once again the doctors and nurses are searching for answers as to "how/why" Jackson is doing so well! Some "think" it may be due to the fetal surgery performed back in July or possibly the steriods he has been on since birth, but can't be sure of either! Now don't we - who know Christ - know the answer to their dilemma! For it is God who gives us the breath of life and controls our destiny! [Daniel 5:23] And HE alone is worthy to be Praised! And let me tell you ...it is absolutely amazing the opportunities and conversations the Lord is creating for us to share our faith and journey with our nurses and doctors! It is so exciting and so encouraging...and we can't wait to see how the Lord continues to move in through these newly formed relationships/friendships! We serve and awesome God! And just in case you are wondering...as one of the doctors left the room this afternoon he pulled Kelly and I aside and shared, "this is the best Norwood case we have ever had!" He - and I am not talking about Jackson - continues to "shock and amaze" our team of nurses and doctors, as Jackson continues to improve at a "phenomenal" rate!
Life can be overwhelming...can't it? And the storms, journeys, and roller coasters can take their toll as the waves, winds, twists and turns bombard us - but when our eyes are on our Savior and not our circumstances we are able to bow down, live weak and surrender to receive the divine favor of our Savior! We know the peaks and valleys will continue - as they are tonight - for this is a marathon we are running!
Please continue to pray - as right now - the team is diligently working to create the "right" balance of Jackson's pain meds! They are hoping to create a more stable "comfort level" that will allow him to rest and to recover without Jackson being completely knocked out! There have been several anxious and very hard moments - emotionally and physically - as we have watched our little warrior wake up from a deep sleep and scream for relief from the severe pain! It has been very hard on mommy and daddy...but we have seen His Glory today, and our Heavenly Father is full of Grace and Truth...and we will continue to rest in His Presence and Grace!
Sing praises tonight...just as Jackson did moments after being taken off the ventilator!
God is so good - so faithful - and worthy alone of our Praise! His Unfailing Love continues to strengthen our weak and weary souls, for He is the breath of Life!
All Eyes On Jesus!
Tuesday, December 8, 2009
Immeasurably more...
"Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." [Ephesians 3:20-21]
Do you believe that He is able to do "immeasurably more" than all we ask or imgine? If not - buckle up!
What defines a miracle? A sign or a wonder? Whatever makes us lose our breath, when we experience something that truly is unfathomable, indescribable and immeasurably more than our human, finite minds can grasp! Well this morning...God's miracle, sign and wonder was knocking Norwood out of the park!
"Norwood Knockout Day" was coined by our incredible friends/neighbors Jason and Jenn this morning, when they delivered breakfast muffins through my driver's side window at 5:25am as we pulled out of our drive! And I can't begin to tell you how that "rally cry" has encouraged Kel and I - and all involved - in Jackson's big day!
We all aware and know of the intensity and evasiveness of the Norwood surgery, but as our team of doctor's prepared in the wee hours of the morning to re-construct/create Jackson heart...I have never been so surrendered in my life! I mean here we are...watching our 8 day old son go down the hallway in the arms of a stranger for his third surgery to date, to save his life...and all we could do is wait in God's Grace, Peace and Strength! Talk about feeling "out of control!" as a daddy and mommy, but we all know who is in complete control! And did God ever show up this morning...immeasurably!
At 8:00am - the anesthesiologist carried Jackson down the hall in his arms to prep for surgery. We were told to rest and make sure to eat by our Nurse Jackie as we waited patiently through the 4-5 hour long surgery with our small group from church. We were not expecting any updates during the wait - so you can imagine our surprise when Linda (a Nurse Liason) came into the waiting room at 9:30 and called out "the Barrett's?" I stood straight up...as my heart skipped a beat! But with a little smile on her face she shared that Jackson was doing great, anesthesia went very well, Jackson was on the heart-lung machine already and the Norwood surgery was underway! Talk about a great surprise...
But that was not the greatest surprise of the morning! At 11:00am, when Linda appeared again to share that the surgery was a complete success (in less than three hours) and that Jackson did extremely well with no complications at all...and the surgeons were wrapping things up...I wanted to dance down the hallway! And as hugs, tears, smiles and phone calls and texts were shared around the room, yet another surprise was delivered a few minutes later when Joanne (surgical team doctor) stopped by quickly - with a huge smile on her face - to share her encouragement of how well Jackson did! And yet another...a half an hour later...when Dr. Morell (our lead surgeon) came into the waiting room to share that "the surgery could not have gone better! But we still have a long road ahead! This is a marathon, and we are only half way there!" But hey...we are half way there!! I can't begin to tell you the joy that filled our hearts and the room as the news broke! Talk about amazing...
But then God really displayed surprised us with His Glory and Miracle...as He completely knocked Norwood out of the park! If you remember...we were presented the "best case" scenario last Friday that had Jackson coming back from surgery:
- "open-chested", which would hopefully be closed within 48 hours - due to swelling of the heart following the reconstruction.
- on a heart lung machine - that would be removed hopefully within 24 hours.
- and hopefully transitioning off meds by the end of the week, stepping down to the NICU by the end of next week, and a slight possibility of being home before Christmas!
Well - God said..."Give me your best case scenario, and I will blow that out of the water!" Jackson's surgery went so well he came back closed-chested and off the heart-lung machine! And Joanne, just whispered in our ears as I write this that everything is a great sign to have him home before Christmas...BUT in the words of the Attending Doctor in the CICU - Dr. Constantinos " even though it may possibly have been the best Norwood surgery we have ever performed, the next 6-18 hours are critical, as many Norwood patients decline before getting better!"
How awesome is our God! Right now - as of 4:30pm...he continues to remain stable, but in the last hour his oxygen levels have dropped and are working diligently to adjust! Please continue to pray - as he is not out of the woods by any means...but we put our Trust and Hope in the Lord to continue revealing His Glory - immeasurably - as He holds and heals Jackson!
Thank you so much for your prayers and support this morning and through out our journey, and please keep them coming!
Continue to find rest in God alone..for our hope comes from Him - alone! He alone is our Rock and our Salvation! He is our Fortress, and we will not be shaken! Trust in Him at all times, pour out your hearts to Him, for God is our refuge! [Psalm 62:5-8, emphasis added]
Below are a couple of pictures post surgery - but please prepare yourself before looking as it is definitely hard to see our little warrior in this condition...
And if you happen to be a Pittsburgh Penguin’s fan...Jackson's first two visitors post-op were Marc Andre Fleury and Brent Johnson, who delivered a Christmas present from the team to our "little warrior" (which is the new nickname for Jackson in the CICU this afternoon)!
All Eyes on Jesus!
Author and Perfecter...
Your eyes see circumstances, your faith sees your Savior..."let us fix our eyes on Jesus - the Author and Perfecter of our faith..." [Hebrews 12:2]
This week has been absolutely amazing! There are so many moments that have captured our hearts and taken our breath away...that truly have given us life, encouragement, strength, and energy, as we head into "Norwood Knockout Day" today!
Day 6: The Answer to a little boy's prayer... [December 5]
As many of you know - Carter has been praying for more than a year and a half for a baby brother. It was at Jordyn's three month check up when he asked Kelly if he was getting a baby brother today (like there was an exchange program or something...).
Kelly quickly responded, "Not today buddy, but talk to your daddy about it!"
"But daddy's not here!" Bubba replied.
"Well, you can talk to him about it later tonight."
"I want to talk about it now!"
"Then you will have to talk to God about it."
And the next thing you heard out of Carter's mouth was..."dear God, please give me a baby brother!"
Talk about a prayer warrior...and it is amazing how the Holy Spirit speaks through the faith of a child!
Well - God did not only answer that specific prayer of Carter's...but answered another prayer of his this week. It was an incredible moment when the nurse's placed Jackson into Carter's arms on Saturday for the very first time! I can't begin to tell you the emotion on this daddy's heart as I watched my two boys hold one another - Carter holding Jackson in his arms, and Jackson holding on tight to Carter's finger! It was awesome! And the the love, care and compassion on Carter's face...continues to take my breath away! There is nothing better - in this world - than being a daddy!
Day 7: Team DKCJJ (That would be Doug, Kelly, Carter, Jordyn and Jackson)
Another incredible moment...was Jackson's first Steeler game and the gift of spending the entire day together - just the five of us! Even though the Steeler's can't finish right now - through out this whole journey we have called our team of doctor's "Team Pittsburgh"...for we are the city of Champions in 2009 - except for our minor league, farm team called the Pirates! It was a great day full of laughs, excitement and pure joy on multiple levels! We cherish these "perfect moments"...
Day 8: Day of Rest...
Yesterday - was a day of rest and preparation for a huge day today! Kelly had the opportunity to spend the entire day with Jackson at the hospital, while daddy, Carter and Jordyn spent the day together preparing for the rest of the week - grabbing groceries, cleaning the house, etc! Carter and Jordyn then had a play date at with Kyle and Connor - so that Mommy and Daddy could grab a few quiet, precious moments with Jackson last night. Jackson is absolutely amazing, and I can't begin to describe the love, peace and strength that is filling us today! Our hearts are breaking and this is the hardest moment we have faced to date in this journey, but God is in control...and as we continue to fix our eyes on Jesus, we look to Christ to reveal His Glory in and through Jackson's life and surgery today!
This is God's story - and He is the main character...not Jackson, not Doug, not Kelly nor anyone else! This journey has been one that has truly taught us that God will draw people closer to Him in ways that we could never imagine! And when we Rest in Him...we will overflow with renewal, peace, strength, encouragement and faith! So today - find Rest in Him...
Day 9: "Norwood Knockout" Day...
And so here is where we find ourselves - the morning of Jackson's Norwood Surgery! We are ready, we are surrendered, we are leaning into Christ and His Body on the foundation of prayer that has been laid, and standing on the promise of Isaiah 43: 1-3...
"Fear not, for I have redeemed you! I have summoned you by name, you are mine! When you pass through the waters, I will be with you; and when you walk through the fire, you will not be burned; the flames will not set you ablaze! For I am the LORD your God, The Holy One of Israel, Your Savior!
Please pray without ceasing today, fervently for Jackson's surgery, heart and life! We have come to the garden asking the Lord - if there is any other way - to take this cup...but His Will be done!
Surgery starts at 7:30 and will last for more than 4 hours...so I will try to update the blog late tonight - but can't promise anything! Love you all and thank you for standing with us!
Look...even Jackson is praying today for God's miracle and healing!
This picture was taken at 7:10am the day of surgery! How awesome is our God!
All Eyes on Jesus!
This week has been absolutely amazing! There are so many moments that have captured our hearts and taken our breath away...that truly have given us life, encouragement, strength, and energy, as we head into "Norwood Knockout Day" today!
Day 6: The Answer to a little boy's prayer... [December 5]
As many of you know - Carter has been praying for more than a year and a half for a baby brother. It was at Jordyn's three month check up when he asked Kelly if he was getting a baby brother today (like there was an exchange program or something...).
Kelly quickly responded, "Not today buddy, but talk to your daddy about it!"
"But daddy's not here!" Bubba replied.
"Well, you can talk to him about it later tonight."
"I want to talk about it now!"
"Then you will have to talk to God about it."
And the next thing you heard out of Carter's mouth was..."dear God, please give me a baby brother!"
Talk about a prayer warrior...and it is amazing how the Holy Spirit speaks through the faith of a child!
Well - God did not only answer that specific prayer of Carter's...but answered another prayer of his this week. It was an incredible moment when the nurse's placed Jackson into Carter's arms on Saturday for the very first time! I can't begin to tell you the emotion on this daddy's heart as I watched my two boys hold one another - Carter holding Jackson in his arms, and Jackson holding on tight to Carter's finger! It was awesome! And the the love, care and compassion on Carter's face...continues to take my breath away! There is nothing better - in this world - than being a daddy!
Jackson's oxygen levels were all over the place today...but after an urgent plea for prayer - his levels stabilized and remained great ever since!
Day 7: Team DKCJJ (That would be Doug, Kelly, Carter, Jordyn and Jackson)
Another incredible moment...was Jackson's first Steeler game and the gift of spending the entire day together - just the five of us! Even though the Steeler's can't finish right now - through out this whole journey we have called our team of doctor's "Team Pittsburgh"...for we are the city of Champions in 2009 - except for our minor league, farm team called the Pirates! It was a great day full of laughs, excitement and pure joy on multiple levels! We cherish these "perfect moments"...
Jackson had a great day today and continues to rest and gain strength! He is a fighter, and has quite the personality already...as he has captured the hearts of our incredible nurses and doctors here in the CICU! God truly has assembled the perfect team of medical professionals, acting as His hands and feet, that have become part of our family over the last week! Talk about a blessing...thank you Danielle, Liz, Jackie, Heather, Mandy, Tom and Ashley...ya'll have been amazing (as well as all the doctors!)...there are no words that could ever express our appreciation and love for you!
Day 8: Day of Rest...
Yesterday - was a day of rest and preparation for a huge day today! Kelly had the opportunity to spend the entire day with Jackson at the hospital, while daddy, Carter and Jordyn spent the day together preparing for the rest of the week - grabbing groceries, cleaning the house, etc! Carter and Jordyn then had a play date at with Kyle and Connor - so that Mommy and Daddy could grab a few quiet, precious moments with Jackson last night. Jackson is absolutely amazing, and I can't begin to describe the love, peace and strength that is filling us today! Our hearts are breaking and this is the hardest moment we have faced to date in this journey, but God is in control...and as we continue to fix our eyes on Jesus, we look to Christ to reveal His Glory in and through Jackson's life and surgery today!
This is God's story - and He is the main character...not Jackson, not Doug, not Kelly nor anyone else! This journey has been one that has truly taught us that God will draw people closer to Him in ways that we could never imagine! And when we Rest in Him...we will overflow with renewal, peace, strength, encouragement and faith! So today - find Rest in Him...
Day 9: "Norwood Knockout" Day...
And so here is where we find ourselves - the morning of Jackson's Norwood Surgery! We are ready, we are surrendered, we are leaning into Christ and His Body on the foundation of prayer that has been laid, and standing on the promise of Isaiah 43: 1-3...
"Fear not, for I have redeemed you! I have summoned you by name, you are mine! When you pass through the waters, I will be with you; and when you walk through the fire, you will not be burned; the flames will not set you ablaze! For I am the LORD your God, The Holy One of Israel, Your Savior!
Please pray without ceasing today, fervently for Jackson's surgery, heart and life! We have come to the garden asking the Lord - if there is any other way - to take this cup...but His Will be done!
Surgery starts at 7:30 and will last for more than 4 hours...so I will try to update the blog late tonight - but can't promise anything! Love you all and thank you for standing with us!
Look...even Jackson is praying today for God's miracle and healing!
This picture was taken at 7:10am the day of surgery! How awesome is our God!
All Eyes on Jesus!
Saturday, December 5, 2009
The Plan...
This is what the LORD says: "...I will come to you and fulfill my gracious promise...For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." [Jeremiah 29:10-12, NIV]
This verse has been a verse of great encouragement to Kel and I in our seven years of marriage...but like never before was it put to the test - as it was yesterday! Do you believe that He knows the plans He has for your life? The plans He has to give you hope and a future? Because here is the Truth...Christ is the Hope and Future that is promised to us that know Him in this verse! And in Christ - our Solid Rock, Refuge, Hope, Future, Peace, Strength, and Freedom - lies the plans of Full and Abundant Life! For there is Power in His Blood...and as Carter sang that very song to us tonight on the way home from visiting Jackson today, I was reminded that we will find Him and His plans, as we seek Him with all our hearts! And know that as we are washed clean and set free by His Blood, we receive the Promise of the Holy Spirit to guide and direct us into Truth, Hope and a Glorious Future! All we have to do is live strong, by Living Weak...
Day 5: The Plan...
Yesterday [December 4], we met for an hour with Dr. Joanne Snyder of Jackson's surgical team to discuss "the plan". And I can I just tell you how Awesome our God is for bring Joanne into our lives! Joanne has been a rock of faith, encouragement, support and wisdom ever since we met her on our orientation tour three weeks ago.
The guiding phrase throughout our journey has been "prepare for the worst, but remain hopeful for the best!" [Thank you Dr. Speer for your incredible wisdom and insight!]...but I am not sure you can ever be prepared to hear the words that your son - your own flesh and blood - may not make it through the next week of his life. But - that was the task at hand for Joanne yesterday. And truly, I don't believe there is a way to remain standing through a conversation of this type with out our Lord and Savior. When we may want to question "why me?" or "this is not fair!" our faith compels us to lean into His Strength, Presence and Provision and know that He has gone before us and is by our side! And so we leaned into this conversation, as tears streamed down our face, and stood firm in the Promises of our Heavenly Father!
I will never forget Joanne's response to my question of "on a scale of one to five - five being the worst, most evasive, intense heart surgery possible - where does Jackson's surgery fall?"...Joanne's response: "We remain hopeful, and he is doing really well right now...but this surgery scares me! It is definitely a five, and the most evasive and intense of all our pediatric heart surgeries!"
How does one stomach that...by the Grace of God!!!!
And so here is the plan...on Tuesday morning [December 8th] at 7:30am the surgery begins. It starts with general anesthesia, then placing Jackson on a ventilator and starting central lines and inserting two chest tubes. Then the actual surgery begins by cutting open his chest to access the heart, and placing him on a heart-lung machine. Then the clock starts to tick - as the goal is to get him off the heart-lung machine as soon as possible. Dr. Merrell [lead Pediatric Cardio/Vascular Surgeon] will begin immediately re-creating his heart to be a one ventricle system. He will form a new aorta by fashioning together Jackson's current, underdeveloped aorta with his pulmonary artery. A small shunt (tube) will be placed to connect the lung artery to the aorta. Then the team will remove the atrial septum to create just one atrium, and the PDA...and if you have no idea what I am talking about - don't worry...you are still sane! Just be sure to check out the diagram below...
All that to say - our little "big man" is going to have an intense morning of surgery, and needs all the prayer he can get! We all know the worse case scenario - that Jackson is no longer here on earth with us...but we all know that Our God is the Great Physician and is in complete control! We know Who gave this incredible team of doctors and surgeons their skill, knowledge, wisdom and insight to perform such a surgery - and He is the only one worthy of our Praise and Worship!
God is with us, and has Jackson in the palm of His Hands! And please know that we have not stopped praying for a complete, divine healing! We still believe that God can develop a left ventricle - where there seems to be no ventricle, and stop/cancel this surgery in a heart beat - literally!! If it is God's perfect and divine Will for Jackson NOT to have the Norwood Surgery...we Trust that He will move the mountain! And if it is His perfect and pleasing Will for Jackson to undergo the Norwood surgery - we Trust that He will move the mountain!
Recovery for Jackson will also be intense and long [a month or more]. He will most likely come back with an open chest, due to the swelling of his heart from the surgery. He will have multiple chest tubes and central IV lines - and may still require the heart-lung machine after surgery to sustain his blood oxygen levels. But GOD knows the plans He has for Jackson! Plans to give him and us a Hope and Future! And our Hope is in the Lord...Amen?
We NEED you right now! I know that your prayers have sustained us thus far - but pick it up ya'll! Many have written, sent cards, emails, txt and messages asking how they can help...the best thing right now is to pray! Pray for Healing! Pray for Strength! Pray for Wisdom and Peace that goes beyond understanding! Pray for Unity, Clarity, and Discernment as we face the hardest decisions of our lives! Pray for Rest as we are prepare for the worse...but are hopeful for the best possible outcome - which by the way "seems" to be that Jackson could be home by Christmas! What an awesome gift that would be under our tree this year, to have Christmas at home - the five of us!
Oh Lord - hear our prayers and heal your gift right now! You are the Light of Life and we love you Lord not just for what you do, but for who you are! We know that your are more than capable of healing Jackson in a heart beat - for you are a God of Grace, Mercy, Great Healing and Awesome Miracles...and with great faith we ask, seek and knock for your will to be done in Jackson's life! We Praise You for the incredible team of doctors and surgeons you have assembled and know that they are your hands and feet!
There's power! There's power! There's wondering working power! In the blood...of the Lamb! [Hope you can hear Carter singing this...sweet music, isn't it?]
All Eyes on Jesus!
This verse has been a verse of great encouragement to Kel and I in our seven years of marriage...but like never before was it put to the test - as it was yesterday! Do you believe that He knows the plans He has for your life? The plans He has to give you hope and a future? Because here is the Truth...Christ is the Hope and Future that is promised to us that know Him in this verse! And in Christ - our Solid Rock, Refuge, Hope, Future, Peace, Strength, and Freedom - lies the plans of Full and Abundant Life! For there is Power in His Blood...and as Carter sang that very song to us tonight on the way home from visiting Jackson today, I was reminded that we will find Him and His plans, as we seek Him with all our hearts! And know that as we are washed clean and set free by His Blood, we receive the Promise of the Holy Spirit to guide and direct us into Truth, Hope and a Glorious Future! All we have to do is live strong, by Living Weak...
Day 5: The Plan...
Yesterday [December 4], we met for an hour with Dr. Joanne Snyder of Jackson's surgical team to discuss "the plan". And I can I just tell you how Awesome our God is for bring Joanne into our lives! Joanne has been a rock of faith, encouragement, support and wisdom ever since we met her on our orientation tour three weeks ago.
The guiding phrase throughout our journey has been "prepare for the worst, but remain hopeful for the best!" [Thank you Dr. Speer for your incredible wisdom and insight!]...but I am not sure you can ever be prepared to hear the words that your son - your own flesh and blood - may not make it through the next week of his life. But - that was the task at hand for Joanne yesterday. And truly, I don't believe there is a way to remain standing through a conversation of this type with out our Lord and Savior. When we may want to question "why me?" or "this is not fair!" our faith compels us to lean into His Strength, Presence and Provision and know that He has gone before us and is by our side! And so we leaned into this conversation, as tears streamed down our face, and stood firm in the Promises of our Heavenly Father!
I will never forget Joanne's response to my question of "on a scale of one to five - five being the worst, most evasive, intense heart surgery possible - where does Jackson's surgery fall?"...Joanne's response: "We remain hopeful, and he is doing really well right now...but this surgery scares me! It is definitely a five, and the most evasive and intense of all our pediatric heart surgeries!"
How does one stomach that...by the Grace of God!!!!
And so here is the plan...on Tuesday morning [December 8th] at 7:30am the surgery begins. It starts with general anesthesia, then placing Jackson on a ventilator and starting central lines and inserting two chest tubes. Then the actual surgery begins by cutting open his chest to access the heart, and placing him on a heart-lung machine. Then the clock starts to tick - as the goal is to get him off the heart-lung machine as soon as possible. Dr. Merrell [lead Pediatric Cardio/Vascular Surgeon] will begin immediately re-creating his heart to be a one ventricle system. He will form a new aorta by fashioning together Jackson's current, underdeveloped aorta with his pulmonary artery. A small shunt (tube) will be placed to connect the lung artery to the aorta. Then the team will remove the atrial septum to create just one atrium, and the PDA...and if you have no idea what I am talking about - don't worry...you are still sane! Just be sure to check out the diagram below...
All that to say - our little "big man" is going to have an intense morning of surgery, and needs all the prayer he can get! We all know the worse case scenario - that Jackson is no longer here on earth with us...but we all know that Our God is the Great Physician and is in complete control! We know Who gave this incredible team of doctors and surgeons their skill, knowledge, wisdom and insight to perform such a surgery - and He is the only one worthy of our Praise and Worship!
God is with us, and has Jackson in the palm of His Hands! And please know that we have not stopped praying for a complete, divine healing! We still believe that God can develop a left ventricle - where there seems to be no ventricle, and stop/cancel this surgery in a heart beat - literally!! If it is God's perfect and divine Will for Jackson NOT to have the Norwood Surgery...we Trust that He will move the mountain! And if it is His perfect and pleasing Will for Jackson to undergo the Norwood surgery - we Trust that He will move the mountain!
Recovery for Jackson will also be intense and long [a month or more]. He will most likely come back with an open chest, due to the swelling of his heart from the surgery. He will have multiple chest tubes and central IV lines - and may still require the heart-lung machine after surgery to sustain his blood oxygen levels. But GOD knows the plans He has for Jackson! Plans to give him and us a Hope and Future! And our Hope is in the Lord...Amen?
We NEED you right now! I know that your prayers have sustained us thus far - but pick it up ya'll! Many have written, sent cards, emails, txt and messages asking how they can help...the best thing right now is to pray! Pray for Healing! Pray for Strength! Pray for Wisdom and Peace that goes beyond understanding! Pray for Unity, Clarity, and Discernment as we face the hardest decisions of our lives! Pray for Rest as we are prepare for the worse...but are hopeful for the best possible outcome - which by the way "seems" to be that Jackson could be home by Christmas! What an awesome gift that would be under our tree this year, to have Christmas at home - the five of us!
Oh Lord - hear our prayers and heal your gift right now! You are the Light of Life and we love you Lord not just for what you do, but for who you are! We know that your are more than capable of healing Jackson in a heart beat - for you are a God of Grace, Mercy, Great Healing and Awesome Miracles...and with great faith we ask, seek and knock for your will to be done in Jackson's life! We Praise You for the incredible team of doctors and surgeons you have assembled and know that they are your hands and feet!
There's power! There's power! There's wondering working power! In the blood...of the Lamb! [Hope you can hear Carter singing this...sweet music, isn't it?]
All Eyes on Jesus!
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