Baby Leino

Welcome to Isaac's Story

2009-01-05T20:55:00.007-05:00

To those who are here for the first time & to those who have come many times before, welcome.

This is the story of Isaac Jordan Leino, an amazing boy who lived with HLHS for 24 weeks & changed the lives of all who knew him. To start at the beginning of his journey, scroll down to the very bottom of this page & progress upwards. Our prayer is that his story would touch your heart, that you would know the power of the God who loves you, & that you would see every child's life as precious - no matter the form in which it comes.

::Jordan & Patience Leino
www.leinolife.com

Beauty for Ashes

2008-08-05T11:19:00.007-04:00

"The Spirit of the Lord God is upon me...to grant consolation & joy to those who mourn in Zion - to give them a garland of beauty instead of ashes, the oil of joy instead of mourning, the garment of praise instead of a heavy, burdened, & failing spirit - that they may be called oaks of righteousness, the planting of the Lord, that He may be glorified." Isaiah 61.1 & 3

How can one measure this past year? How do you put to words all that has transpired since that Sunday when Jesus welcomed Isaac home? I awoke this morning to a flood of memories, remembering each moment of that last day with our son. I'm so grateful we were home with him. I'm so grateful that Jordan & I were together with Isaac that entire day. I'm so grateful that those final moments were peaceful for our boy & the room filled with the sound of instrumental hymns & the prayers of family & friends. Yes, I wish there could have been some other way...that God would have miraculously healed Isaac's heart & body, that the doctors would have been baffled to find four chambers pumping away instead of three. But just as He promises to know all our days before even one of them begin (Psalms 139), I know God's plan for Isaac was perfect & that our son lived out the life planned for him to the fullest.

Nevertheless, this past year has been the hardest of my life. You hear of tragedies in the world, of the loss others incur. They grieve you & pull at your heart. But when your own sweet child, whose life you've completely trusted to God with genuine hope that the saving miracle will come...when his journey ends...when his gain comes at your loss...when his healing comes on the other side of eternity...it hits you with a force you can't describe & rocks you to the core. True, I'm forever grateful that Isaac no longer has to suffer, to undergo surgeries, to be bound by the machines that keep him alive. I'm overwhelmed to know this very moment, he is perfect in heaven with Jesus. But it doesn't change the physical loss of him here on earth. All those dreams, all those hopes, reduced to ashes on the ground. Completely spent. Burnt up with no life of their own remaining. Ashes.

If I could express one thing today on the anniversary of Isaac's death...one truth that I've learned through this year...it would be this: God is faithful to give beauty for ashes! He is true to His Word. God has taken the ashes that remained from our journey & all that died on August 5, 2007, & He has brought forth true beauty from them. He is not ignorant nor indifferent to what we go through. HE CARES about what has died in your life. HE CARES about those things that are now only ashes on the floor. This year has taught me first hand that treasures are to be found in suffering. Though the journey can be almost unbearable & the pain more real than you ever imagined, when you elevate God above those circumstances & choose to trust His Word, precious gifts are to be found. And on the days when you don't feel you can hold on any more, God's grip on you is even tighter. He will never walk away from you nor let you go! (Isaiah 54.10 & 30.18) God is mighty to save, He is faithful to complete the work He has begun in you. Our Lord gives beauty for ashes. He takes the remains of what has died in your life, those fragile pieces of dust from the dreams you once had...even when it is with the smallest of faith, when you lift Him up above the physical despair that surrounds, He brings forth the most beautiful treasures to be found. Peace. Joy. Hope for tomorrow. And the experienced assurance that He IS true to His Word & He IS faithful to never let you go. Were I to write all the treasures that have come forth from our ashes, you would not have time to read them.

"The Spirit of the Lord God is upon Me...to give a garland of beauty for ashes...that He may be glorified!" (Isaiah 61.1&3)

Spring

2008-03-25T18:40:00.014-04:00

The view from my window is beautiful: clear, blue skies, trees blooming everywhere, birds chirping away winter's chill. The sun shines brightly & there's not a cloud in the sky. Spring has arrived. There's something in the cool breezes & sun's clear light that calls my heart back to Chapel Hill. Something about it pulls at the deepest parts of me to return - to that place of describing the window's view to a little boy who had yet to experience fresh air, to the familiar ICU walls & medical alarms, to waiting by the cherry blossoms for the shuttle to arrive, to those 5-minute croissant breaks outside in the butterfly garden. To simply being with my son as he experienced each new day. It has caught me off guard & yet is treasured just the same.

Peace has enveloped our home these past several weeks, allowing in the treasured memories of our sweet boy while holding off the deep pain of his absence. We delight in knowing he's whole & complete, free of pain & strain in Jesus' arms. We've passed the deepest depths of grief's pit to start the long climb up again. God continues to show Himself near & faithful.

But there's something about today...something...that just makes my arms ache for my little boy. Something that calls the depths of me to return to that spring in Chapel Hill. I can't quite define it. All I know is that today...I just want to curl up next to Isaac & hold him tight.

At times I feel like the children of C.S. Lewis' "Chronicles of Narnia," having wandered from the wardrobe, filled with memories from the journey there - the friends gained, obstacles conquered, tears shed, & new joys experienced. Our 5ish months in that distant land (or Holland as once we called it) remain vivid in my mind & dear to my heart. There's a sweetness to those days with Isaac in Chapel Hill. Some would ask, "don't you miss home?" To be honest, I really didn't. Our family is our home & as Isaac needed us at UNC, it had become our home. The hours reading him books & holding hands with Isaac would wake us in the morning, while visits with the PICU staff became much like catching up with old friends. And as our journey took us from hospital to house, our feeling of home followed. Amazing...to have our darling in the place we had long prepared for him. Those days were a gift & a blessing.

Then in an instant, that world was to be left behind & the "now" at times showing very little evidence of our time there other than the change in our hearts & souls. Life moves on, passing people on the street who don't even know of this distant land. And yet the littlest thing - a kiss of the breeze on your shoulders, a song's melody, the smell of a child's clothes, the sound of an alarm - & immediately you're transported back to that place forever captured in mind & time. While the wardrobe no longer grants passage to that place, its memory sweet remains.

Spring is in the air. And on its gentle breeze, the daydreams & longings for the most precious little boy. Something...calling me back to that place & time that will forever remain the sweetest in my heart. So for now, I'll cherish these images of my son: his playful hands, his expressions full of personality, the peace of him sleeping & the joy every time he'd wake to look into my eyes. Thank you, great God, for the treasure of them. I wouldn't trade them for anything in the world.

Easter Memories

2008-03-23T15:32:00.005-04:00

As we celebrate on this, Resurrection Sunday, we find ourselves more grateful than ever for the gift of Jesus's victory over the grave. Through it we are saved & through it, we are able to hope in seeing our sweet boy once again. Because of His resurrection, death is defeated & we have the hope of spending eternity w/our son, worshipping in God's presence evermore. In honor of today & in memory of our sweet boy, we're reposting our blog from last Easter. To God be the glory for all He has done.

Easter::Reflecting on God's Miracles
(Originally Posted 4.10.07)

"Another Sunday has come & gone. Sweet Isaac is now six weeks old!

I've found myself in a state of reflection on this, the crux of our faith. It's Easter, the celebration of Christ's resurrection! The past several weeks have taught me in a profound way the depth of God's love for us. As we've journeyed through this trying time, watching our sweet boy struggle more & more each day, we've found rest in God's loving arms. He also has watched His Son struggle & suffer. Through the pain & tears, we've heard His gentle whisper, "I know your pain. I've been there. I will see you through." Because of love, God sent His only Son on our behalf. Because of love, Jesus bore the cross & sin's consequence of death in our place. The perfect sacrifice, Christ rose from the grave, conquering sin & death. Because of this, we can be reconciled to God &, because of love, live our lives for Him. What an awesome & loving God we serve!

Easter rejoices in Christ's victory & celebrates new life. Watching Isaac this weekend, I've been overwhelmed by God's power & the new life He has brought to our sweet boy. By all medical accounts, he should not be alive. Last Sunday, we watched our little boy slip further & further away, unable to stop his decline. Empty-handed, we had nothing left to do but wait to say goodbye. And pray. Pray like we'd never prayed before: prayers of surrender & thanksgiving, prayers of longing & pain. Through it all, God did not leave our side. Because of the cross & Christ's victory, we could come directly to God with our requests, our burdens, & lay them at His feet. Because of "Easter", we could face death with the hope of new life shining through our tear-stained eyes. Holding our dying little boy, we could honestly sing "Great Is Thy Faithfulness" & "It Is Well" because the truth contained in the lyrics did not pend on our ever-changing circumstances, but on our ever-steadfast God.

In the quiet of our hospital room, Jordan & I now understand the depth of Easter unlike ever before. The love of a God who hears. The power of His Son's sacrifice & resurrection. And the sweet pleasure of watching our precious child, still alive & now recovering towards health. What a miracle! Isaac has been given new life. Though we still don't know the end of the story, we do know that God brought him back from the clutches of death & has touched his tiny body. Every doctor & nurse who cared for him last week has been awestruck & dumbfounded. "It's a miracle!" "He's a completely different baby!" "In my 20 years of this, never have I seen someone come back from where he was, let alone to be doing so well!" And to all of that, we give praise to our God, the Great Physician!

Thank You, Lord, for Your great love & for the hope we can find in You. Thank You for Your Son, for the new life we can have through Him. And while the road ahead is still long & unknown, thank You for one more day with our sweet boy. You are a God of miracles & for that, we give You praise!"

Happy Birthday, Isaac

2008-02-24T23:34:00.011-05:00

Beloved child::

One year ago today, God's miracle met us face to face. On a rainy night in Chapel Hill, our eyes beheld your precious face & looked into your eyes for the first time. At 3:40am, we held our breath as you entered this world with quiet strength. And from the moment we saw you, sweet boy, we were certain: you were perfect.

Sweet boy, we've never loved anyone more! You opened our hearts in ways indescribable & showed us the beauty of completely loving someone without limit. And that love simply grew by leaps & bounds with each passing day. Our lives are full because you have been here. It was amazing to see you grow, to see you open your eyes that became bluer with each passing day & your hair become so red. As soon as it was safe, we held you more than anyone has ever been held. You barely touched the bed once we could have you in our arms. What a joy to hold you! You'd always surprise us...sleeping soundly & the next thing we'd know, you'd be awake & looking straight at us with the sweetest look on your face. It always warmed our hearts to see you looking at us.

Isaac, you are the bravest little boy! No one has more strength than you. We remain amazed at all you endured with pure innocence & peace in your eyes. We would have given anything to take your hard road from you...oh, sweetheart, we would have given anything. On the days we were most afraid for you, its amazing...you seemed so at peace & at times, would look at us. Silently, you communicated volumes to us - that you were going to be alright & we could trust God with you. You taught us so much & showed us strength when ours was gone. "And a child will lead them..." Mommy & Daddy love you so much & could not be more proud of you if we tried. Even the doctors & nurses fell in love with you, coming to visit you every time they were on campus & calling in on their days off just to check on baby Isaac. What a charmer you are! You are the darling of our hearts & of all who know of you.

Do you remember the day we brought you home? You slept the whole way! But once we had you settled, wrapped in your fuzzy car blanket, & rocking in your glider...your eyes opened with happiness shining through them. You were home! You were safe! Every moment home with you remains precious in our minds. You loved playing with Daddy...you would light up for him in such a special way. If you were hurting or sad, he'd simply put his hand on you & speak into your ear...and you'd relax so peacefully right away. A father's love. Mommy always enjoyed wrapping you up after a bath, snuggling you warm in your frog towel. Remember how you loved light? Whether a lamp or a window or the shiny birthday ribbons from Maima, they fascinated you! It was probably incredible to see the lights of heaven that day Jesus took you home. Did you love to see them, the shiny golden gates & all the precious stones shining in the light of the King? We can't wait for you to show them all to us...

We miss you, Isaac. We're overjoyed that you no longer have all the tubes & tests, that your heart has been made complete & you can laugh all day long. Sweet boy, you changed our world. You changed the world. We know you're happier than we can fathom. We do miss you though. And given the chance, we'd have you back in our arms & home again in an instant, tubes, machine, & all! You were worth every bit of it! It was our absolute joy & honor to take care of you, sweetheart. Sometimes the love of a parent rejoices in their child's gain even when it comes at their own loss. We cry only because we love you so very much & miss you...miss holding you, kissing your cheeks & belly, rocking you while you sleep & playing with you while you were awake. We love everything you are, Isaac.

A year ago, rain fell from the sky. Today, its beautiful outside. The shining sun turns our thoughts to you & the beauty you must be beholding this very minute in heaven. We love you, Isaac. We are so proud of you. We miss you but will see you someday soon.

Happy birthday, Isaac!

::Daddy & Mommy

A Tribute Remembering Our Son

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2008-01-28T15:22:00.000-05:00

Visit CFHusband.Blogspot.Com.
Read. Be inspired.
And Pray...

Pressing On...

2007-11-01T20:20:00.000-04:00

Nearly every day, I've come to this site...browsed through the pictures of our perfect boy...and tried to find the words to scribe the next entry. And each time, the words are not to be found. What does one say? How can you describe the vast span of emotions & thoughts filling each day since Isaac died? Some days the strength is there & the smiles are genuine. Others, you're blindsided with paralyzing grief & a heaviness that reduces you to nothing but tears & longing for what you cannot get back this side of heaven. And the days in between fill with a mixture of everything between. All the while, two things remain: the real absence of our sweet boy & the ever-presence of God's love & comfort.

To be honest, there aren't many words to say. No words of inspiration nor incredible strength. No great insights or profound thoughts. Simply this - we are hurting, but one day at a time, we're making it through. God continues to carry us on the hardest days & reveal the many ways Isaac changed this world in his brave twenty-four weeks here on earth.

gratitude

2007-10-31T20:12:00.000-04:00

Thousands of you have walked alongside us in prayer & support. Thank you for your steadfastness in following Isaac's life & your compassion in his passing. Thank you for your continued prayers for us & our families as we still are in the throws of the grieving process. And thank you to all who contributed to the Memorial Fund. We have been able to meet all of our medical & funeral debts due to your generosity. What a tremendous blessing to move forward from nearly six months of intense medical care, debt-free. We know not how to thank you enough. With the medical bills behind, we're now able to use Isaac's Fund to bless & contribute to other non-profits groups who so greatly helped us along our journey, as well as young families with dire medical needs (such as cystic fibrosis & pediatric cancer research).

Again, thank you all!

The Touch Felt 'Round The World

2007-10-31T09:58:00.000-04:00

Jordan & I eagerly await the day when we can tell Isaac of all God did in his life, of the people his journey has touched, & how far reaching his story has traveled. If you've been impacted by his story or follow this blog, we ask that you post your name, city, state &/or country following this post so that we can show Isaac one day of all the lives he's touched. Even if you usually don't leave any comments or don't want to put your name, please let us know if you've been following his journey by letting us know where you're from. USA, India, Guam, UK...it'll be amazing to see where his story has traveled!

A Month Gone By...

2007-09-05T08:16:00.000-04:00

One month ago today, the world changed as a precious little boy stepped from this mortal life into the eternal presence of Almighty God. Not a day goes by where we don't miss our sweet Isaac, look at his many pictures, & ache to hold him again. At times, kissing his cheek on the photograph, imagining his soft skin. We miss our Isaac. We miss his bright, loving eyes. We miss his funny expressions. We miss his little puckers & his enormous yawns. We miss holding him for hours in our arms.

But oh, what peace is found in knowing he now stands with Jesus, face-to-face, worshipping ever at His throne! No tubes, no needles, no meds, no wounds. Perfect & complete, our son is home with his heavenly Father who loves him more than anyone could ever imagine. No surgeon's knife will ever cut him again, no tests will ever need to be run on him. He can simply be the precious boy he was created to be, laughing with joy in heaven evermore.

This past month has been filled with grief & peace, the closing of a chapter as life's pen begins the next. We cherish the twenty-four weeks we had with our sweet boy. What a gift! With all of his health problems & abnormalities, its truly a miracle that he even lived past a day old. Thank You for the time with him, God! In looking back over our journey with Isaac, so many memories & lessons flood the mind. One in particular was the day we had to rush him to UNC for dehydration. Isaac slept the whole ride there, so I pulled out my Bible to hopes of finding some encouragement during this frustrating turn of events. I landed on Exodus 25, where God instructs Moses to take up a heavy offering to build the tabernacle. As the chapter progresses, it lists the things to be given in the offering. What an extravagant list of items! And I got to wondering...where did the Israelites get such valuables (porpoise skins?) when they've been wandering in the wilderness for years and slaves for generations before that?! If you look back to Exodus 12, we see how God enabled the Israelites to plunder the Egyptians when they were released from Egypt. Everything of worth & value that they had, God Himself had provided! In chapter 25, God recognizes that this offering will take sacrifice, offering up things that they want to hold onto most. But ultimately, even the most precious of items came from God anyway. Even by having this hard offering taken up from the Israelites for the tabernacle, God showed His love as He wanted to dwell with them! And that morning in the car, God comforted me saying, "I know that this journey is hard for you & that you love your son so very much. I know how hard this is to trust what is most precious to you in My hands. But he is My child, My gift to you. I am not ignorant of how hard this is for you & will carry you through whatever the road may bring. I love Isaac & I love you. Trust Me." What an impression that ride made on my heart. And it was just two days later when we got news that Isaac's heart was not growing & his time here could be much shorter than we'd hoped. Two weeks later, he was home with Jesus.

While this road has been hard, God has never left our side. He has always provided exactly what we've needed to get through. Yes, we miss our son...more than words can say. But he ultimately was from God & we were so fortunate to be stewards of this precious gift for 24 weeks. What a blessing!

"But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables Him to bring everything under his control, will transform our lowly bodies so that they will be like His glorious body.
-Philippians 3:20-21

Tribute to Isaac

2007-08-24T23:42:00.000-04:00

Here is the video we created and showed at Isaac's funeral. These pictures captured many of the sweet moments we had with our little Isaac. Thanks to Benjamin Canady for his hard work on putting this together.

Our Thanks

2007-08-11T13:02:00.000-04:00

Thank you to everyone who has supported us this week & who came out for Isaac's Memorial Service, particularly those who traveled long distances to get there. We were overwhelmed by the love & kindness from everyone, coming to celebrate the life of a little boy they'd never met in person. Isaac has left an indelable mark on all our hearts.

We will write more in the days ahead & try to post the slideshow from his service, but for now, we're away for a much-needed vacation. Thank you again to you all - for your love, your words, your cards, your gifts, & for simply standing with us through this journey.

Isaac J. Leino Memorial Fund

2007-08-07T11:52:00.000-04:00

Many people have expressed interest in giving in ways other than flowers, so we have set up the Isaac J. Leino Memorial Fund. Money received will go towards Isaac's medical bills and giving back into organizations that have shown us their generosity.

If this is something you'd be interested in participating with, feel free to mail contributions to:

Isaac J. Leino Memorial Fund
c/o C3 Church
8246 Cleveland Rd.
Clayton, NC 27520

We thank you for your continued prayers and support.

Events To Come

2007-08-06T20:47:00.000-04:00

We have been so touched by the hundreds of comments & stories already posted, offering condolences & encouragement during this time. Thank you all!

There will be a viewing at the McLaurin at Pinecrest on Wednesday night from 7p -9p.
12830 US 70 West
Clayton, NC 27520
For more details, visit their site: www.McLaurinAtPinecrest.com.

Isaac's Memorial Service will be at 3p on Thursday, August 9, at C3 Church. Viewing will also occur at the church an hour prior to service.
8246 Cleveland Road
Clayton, NC 27520
For more information on the church, visit www.c3church.org.
A private burial will follow.

Further details will be posted soon. Again, thank you all for your support during this time.

Answered Prayers

2007-08-05T20:40:00.001-04:00

Today, our God answered the countless prayers for our sweet boy. With our eyes flooded with tears & loving arms holding him close, today Isaac Jordan Leino went home to Jesus. At 5:10p, God healed our son & gave him a new body, free of defects, tubes, & alarms. While our heavy hearts grieve the loss of our precious child, our spirits find peace & hope knowing he now stands face to face with our Savior, worshipping in His presence. What a bittersweet joy is found in trusting him into the arms of Jesus.

Details will come as we have them regarding the events to follow. We'll never be able to thank you all enough for standing with us through this journey.

Mommy & Daddy love you, Sweet Isaac. Though we miss you more than words can say, we'll see you soon.

Time for Prayer...

2007-08-05T11:55:00.000-04:00

The past few weeks have been full & sweet, spending every possible moment & many sleepless nights with our sweet boy. Thank you all for your prayers for Isaac & our family as a whole. We've known God's peace in deeper ways than ever before.

Over the past 48 hrs, Isaac's health has rapidly declined (much like a snowballing effect). We've consulted every physician involved in his care & are doing all we can to support him. In spite of all this, he continues to decline. Our greatest concern is making Isaac as comfortable as possible. Join us as we pray for God's will to be manifest in his life, for total healing - one way or another - & above all, for peace & comfort for our boy. While we don't know how much time he has left, we are confident in the One who holds him firmly in His ever-loving hands.

We love you, sweet boy. We are so very proud of you.

Praying for a Miracle...

2007-07-23T00:08:00.000-04:00

Saturday night bore a heavy blow. What began as a trip to the hospital for a sodium imbalance took a severe turn that no one saw coming. Our Isaac needs a supernatural miracle.

Finding our boy dehydrated, he was given IV fluids to correct his fluid balance. But once this occurred, he spend two days with oxygen sats in the 40's & 50's. Through tests & observation, we ruled out the respiratory system as being the cause of this. Dr. Blair Robinson, Isaac's cardiologist, did a bedside echocardiogram to fully assess his heart. What he found took us by surprise & has brought a great heaviness to our hearts.

As you know, Isaac has one ventricle doing the job of two, pumping blood to both the lungs & the body. The strain of bearing the load for the whole heart has caused the heart muscle to thicken considerably, making it difficult for his heart to fully fill. Also, the pulmonary artery (from the heart to the lungs) is a third the size as it should be. This significanly limits the amount of blood his heart can pump to the lungs to be oxygenated. His heart is working very hard to function & is not growing as it should.

Bottom line - as it is right now, Isaac does not qualify for either the next stage of surgery nor a heart transplant. His body would not survive either. His current status leaves him without options &, if nothing changes, only a month or two left to live.

We need a miracle! There is nothing medicine can do to help him. We are doing our best to give him the best nutrition & medicines to optimize his chances to grow. But as things are now, his heart is burning all those growing calories to simply function day to day. If ever there was a time for prayer, this is the time!

Our hearts grieve with this news. Sadness was written on the doctors' faces as they conveyed the reality of Isaac's situation. Thankfully, he's back home now with family & familiar surroundings. Whatever God choses, we find our boy in a win/win situation. If God intervenes in a supernatural way & heals his heart - either completely or enough to have the next surgery - then He will be glorified & Isaac will remain with us! Our hearts long for this! But should God decide to take him home, then we rejoice that Isaac will be with Jesus, face to face - free of tubes & tests & struggles. He won't know hurt or disappointment or limits. But still, we pray for the miracle!!!

Mr. Smiles!!!

2007-07-20T14:48:00.000-04:00

Isaac has a new favorite hobby - smiling!! He's been happy as a clam today, bearing his gums for all to see. Enjoy!

Two Perspectives

2007-07-19T21:30:00.000-04:00

Isaac's resting comfortably in his PICU bed & to look at him, you'd never know anything had been wrong. After a frightening seizure episode & several blood labs, it was determined that Isaac had become extremely dehydrated - most likely a result from sweating his little heart out over the past week...he sweats like a grown man when he's mad! Thankfully, Benny was able to gain IV access to give Isaac fluids & meds. An echocardiogram revealed thickening of the heart muscle, a result of working hard to function. So the gameplan at this point is to successfully rehydrate Isaac, stabilize his sodium levels, & adjust his heart medication to assist his heart further.

What a day. At first, we were very concerned for Isaac's health & frustrated by the awful timing of it all. We'd finally come to the point where Isaac was doing well, nursing arranged, & work all in order. It just didn't seem fair! But as the day progressed, another perspective came into view. Thankfully, the call had come while Jordan & I were still home. Thankfully, Isaac was already at the hospital when his seizure hit. And thankfully, it wasn't worse...as it very well could have been! God knew we needed to be at UNC to learn about his heart thickening & at the end of the day, our sweet boy is still here.

Hopefully, we'll only be in Chapel Hill for another day or so. Now we know more of how to pray effectively for Isaac - that he would maintain hydration, safe electrolyte levels, & for his heart - that the muscle would work efficiently & go back to normal size. We see the cardiologist next Thursday to learn when he'll need the next surgery, most likely within the next month or so. Until then, we hold our sweet boy close, bathe him in prayer, & that God for His love & never-ending faithfulness.

20 Weeks with Hiccups...

2007-07-19T14:00:00.000-04:00

As of 8 o'clock this morning, Jordan & I were packing up for our vacation to the beach. Nursing all set up & Maima in the loop for watching Isaac, we were headed to Holden Beach for a much needed break, just the two of us, since December. Isaac has done very well up to that point, 20 weeks old & now weighing 12 lbs 2 oz at the doctors yesterday. Growing strong & coming more alive each day. I was writing up an update post for the blog to report how well Isaac was doing before we ventured off to the beach.

And then the phone rang...

During yesterday's pediatrician appointment, labs were drawn to check his electrolyte levels since adjusting some of his meds. Results came back with sodium & chloride in dangerously low ranges to the point of putting him at risk for seizure activities. This shocked us as he's been amazing over the past few days. So instead of the beach, we're back in Chapel Hill awaiting a PICU bed to open up. We're not sure why his levels are so out of whack & are praying for wisdom in discerning the root of the problem. Jordan & I are praying for a quick resolution to Isaac's condition without additional complications.

For now, the beach will have to wait...

Nineteen Weeks & Still Going Strong...

2007-07-10T07:03:00.000-04:00

July is already here! Where has the time gone? There are moments when it seems only yesterday we were heading out to Chapel Hill to meet our sweet boy for the first time. And then in a blink, he's growing before our very eyes at four & a half months old. We now understand what mom meant when she told us "you kids just grew up so fast!" It seems each day flies by quicker than the last. Our little boy certainly keeps us busy!

We are so blessed to have this precious little boy in our lives. What a relief to have a good report from the pediatrician last Friday. The staph infection has responded well to the IM antibiotic injections, so we've been able to transition Isaac to oral (Gtube) antibiotics instead. Thank goodness! His poor little thighs were getting so tough & sore from the daily muscle shots. He's very brave, rarely crying when getting his shots.

As you know, Isaac's heart has to work twice as hard as a normal heart would. Because of this, his growth has slowed as he requires more calories to support his heart's workload. We're working to find the right balance in his caloric intake without giving him fluid overload as well. So please pray for him in this - that his body would continue to thrive & grow.

Today we trek out to Chapel Hill for a visit with the pulmonologist (basically checking everything from a respiratory standpoint). It will be good to see the familiar faces at UNC & hopefully get the green light that everything continues to go well with Isaac. With each day, I realize we're just one day closer to his next surgery. Our appointment with his cardiologist on the 26th will give us a better understanding on when that will be. Much lies ahead for our precious little boy. Our prayer today is for a good report from his pulmonologist.

Thank you all for your support & prayers for us as we've transitioned home, as well as patience between posts. Isaac's doing well, grows more handsome each day (which means he looks more like his daddy each day), & continues to teach us to trust God with what's most precious to us. Now, its off to UNC!

Our Brave Boy

2007-06-27T13:17:00.000-04:00

Touching Base...

2007-06-25T20:35:00.000-04:00

We're home. We're grateful. And we're tired, so very tired.

Isaac's doing better: still on IM antibiotic meds (daily shots in his thighs) but looking great. He's had some sating issues over the past few days, so we're hoping & praying to figure them out & resolve them without another hospital visit.

To top it all of, Isaac is FOUR MONTHS OLD TODAY!!!!! Happy birthday, Champ! We're so proud of you.

Setback

2007-06-20T14:22:00.000-04:00

Isaac is back in the hospital.

At his first pediatrician's appointment yesterday, Dr. Hunt evaluated a rash that had been brewing as well as his fever. Blood labs revealed his white cell count more than double the normal range, revealing infection. So we're back in the PICU awaiting the results of cultures drawn yesterday. Preliminary results indicate some type of infection in the blood, possibly staph. Full results will come back within the next 48 hours. After several tries (remember - tricky access), a delicate IV was established in Isaac's hand so that he could receive antibiotics. In spite of the labs, our sweet boy seems to be very comfortable & happy in his "new room." Right now, we're looking at a minimum of two more days in the hospital, possibly a week or more depending on culture results.

Our Hero

2007-06-17T12:19:00.000-04:00

To The One We Are Most Proud Of::

What a joy to spend this, your first Father's Day, at home together!

You have led our family through this long journey with strength, wisdom, & character, never once faltering or doubting God's plan. In times of uncertainty, you always hold me close & remind me of God's faithfulness & that we can put our whole trust in Him. You've faithfully led our family & our church in worship through this journey, even at the darkest times, & it has been humbling to watch you follow Christ wholeheartedly no matter what was happening around you. I could not have made it through without you. Isaac is most blessed to have you as his Daddy & to follow in your example. Even at his young age, I know he already looks up at you by the way he lights up whenever you're near. We couldn't ask for more in a husband, a father, a worship leader, & a friend.

Jordan, we love you & are so proud of you. Happy Father's Day!
::Mommy & Isaac