Pressing On...

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

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

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...

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

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

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

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

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

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...

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...

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!!!

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

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...

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...

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

Touching Base...

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

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

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

HOME!!!!!

::Psalm 20.1-8::
May the LORD answer you when you are in distress;
may the name of the God of Jacob protect you.
May He send you help from the sanctuary
and grant you support from Zion.
May He remember all your sacrifices
and accept your burnt offerings.
Selah

May He give you the desire of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.

Now I know that the LORD saves His anointed;
He answers him from His holy heaven
with the saving power of His right hand.
Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
They are brought to their knees and fall,
but we rise up and stand firm.


June 14, 2007 will forever be remembered in our hearts. It is a day filled with a mix of emotion; a day where months of prayer were answered with a loving "yes". To say the day has been surreal would fail to do it justice. It marks the triumphant close of a chapter & wets the pen to scribe the next. On June 14th, Isaac came home!!! After 110 days at UNC Hospital, we packed our belongings & our beloved into the car, & as a family - all three - traveled home.


To think back on all our sweet boy has come through - so many nights where we thought we'd say "goodbye", times of unexplainable deterioration & recovery - and to see him now sleeping peacefully in his own bed, the experience is indescribable. Our miracle boy has been touched by God's mighty hand time & again. We could not have asked for more from the amazing team at UNC's PICU. Isaac & our family as a whole received tremendous care & compasssion from their staff, making each day more than just a visit with our son, but a time with friends as well. We were so touched by their send off, decorating Isaac's door with streamers & letters to us. It brought tears to our eyes to see the unit celebrating with such sincerity over our sweet boy. Thank you, PICU team, for all you've done for our family & for countless others across the state. We will certainly miss you all, though we're thrilled to not be seeing you for a little while. :)


Almighty God has brought us through quite a valley, faithful in every moment. How great is our God, who answers us when we call, who provides strength & peace when we have nothing left, & who turns our mourning into joyous dancing. Only God could take the sufferings of a newborn baby to unite so many people across the globe in prayer & draw us closer to Him. Only God could take such a road & fill it with new friends & new believers. Only God could have done the unexplainable things that have occured in our lives. To see where Isaac has come from & where he is now, we have nothing but humble, awestruck gratitude to Him who does immeasurably more than anything we could ask or think.


Our hearts overflow with gratitude to you all who have held our arms up through this journey. We long for the day when Isaac understands the floods of prayers offered on his behalf for so many months by those who had never met him, of those who fasted & spent sleepless nights beseeching God to intervene & spare his life. Countless times, we would pull up your words of encouragement in his hospital room & through them, find the refreshment needed to take the next step forward. We know not how to thank you enough!


Coming home is a huge transition for Isaac & our family as a whole. While stable, Isaac remains fragile & thus certain precautions are necessary to enable him to thrive at home. We know so many of you are eager to meet him & we will begin to slowly have visitors once he grows stronger. Until that time, we ask for no surprise visitors to our home. For those interested in how to help out with our homecoming, please contact Karen Dawkins as she is coordinating meals for us. (kadawkins@gmail.com)

Again, thank you all for your support & prayers. What a joy to have our sweet Isaac home at last!!!

101 Days in Chapel Hill

Today marks Isaac's 101st day of life & our 101st day in Chapel Hill. A mix of emotions comes at this realization; astounded & fatigued that we've been here so long, yet in the same breathe, tremendously grateful that Isaac has made it through thus far. He has come through 5 surgeries & 3 brushes with death, with 2 more open-heart surgeries remaining as well as 3 more procedures to correct his palate, pyloric valve, & inguinal hernia. So much for one little boy!

Though Isaac will be nearly 4 months old by the time we get home, he'll essentially be a newborn in terms of development due to his extensive hospital stay & lengthy sedation (came off sedation meds completely just last Thursday). Through prayer, God's mighty hand, & excellent medical care, Isaac has overcome tremendous obstacles already with many more still to come in the months ahead. Days can be hard as we see even the simplest things be difficult & exhausting for our sweet son. Thankfully, he can know no disappointment as this life is all he's ever known & even in the midst of it, he remains a precious, happy little boy. To see him sleep peacefully amongst tubes & wires & machines is to be reminded of the peace we all can experience through Christ. Even in an environment that is unnatural, uncomfortable, & simply undesirable, we can rest peacefully in God' mighty arms, knowing He is carrying us through & has a good purpose for it all. "Surely it was for my benefit that I suffered such anguish. In Your love You kept me from the pit of destruction..." (Isaiah 38.17)

Jordan & I are deeply grateful for these 101 days with our sweet Isaac & pray for many more ahead. As our time in the PICU has been extensive, we've indirectly observed many families loose their children; some to long-term issues & others to surprising traumas. Even today, a recent admission lost their fight; family & friends cycled through the unit to say goodbye before the transplant team arrived. Every time we realize this is occurring, our eyes well with tears in grief for those families & in gratitude to still have our sweet boy here with us. No matter how many times you experience this occuring, it never looses its potency. We've learned to truly value each & every single day & to live each day on purpose. So many lessons learned, so many more to be gained. What a gift the past 101 days have been! We wouldn't trade them for anything as we've seen God's mighty hand in ways we would not have otherwise.


Keep on, Isaac! We're so very proud of you!

Going Home...Soon!!!

(Pardon the lack of blogging over the past week due to limited internet access)

When asked to describe the past seven days, the word "phenominal" comes to mind. For so long, it seemed sickness & set backs were on a snowballing path. Now, health is gaining with every day. As we watch our sweet child, sheer amazement floods our minds at all God has brought him through & how well he is doing now; amazement that his is simply alive, let alone thriving! Were it not for the many scars on his tiny body, one would never know the dark road he has travelled. To the eye, he looks like the most adorable 14-ish week old ever! (And for those interested, Isaac now weighs 12 lbs & is 20.5 inches long!)


On Memorial Day, Isaac took his first trip outside! We loaded the stroller with his home vent, charged the IV pump batteries, & with the nurse & respiratory therapist by our side, headed out to the butterfly garden at UNC. Isaac was absolutely wide-eyed on the journey to the garden. And as soon as the sunlight hit his sweet face, he fell fast asleep. The 45-minutes outdoors was truly refreshing for us all.


Isaac continues to hold steady on his home vent & has weaned on the rate from 20 to 14. We've received most of our home equipment & interviewed with our home nursing care company. The bile reflux issues has resolved with a few changes to his medical regimend. He's learned to suck on his pacifier, which is truly amazing in light of never having fed by mouth & having an ET tube down his throat for 10 weeks. What a joy to watch our sweet boy acting like a precious healthy baby instead of an incredibly sick child. And to top off the good news, Isaac is now free of IV lines!!!! The IJ line was pulled yesterday, so the only pump our boy is connected to is his feeding pump!!! For the first time in his life, Isaac has no lines in his veins, nothing stitched to his skin. Words fail to express our amazement & gratitude to where God has brought our son from & the place He has brought him to. Wow! We can now pick up & hold our sweet boy without worrying whether we'll throw a clot or compromise his access. Lord, You are faithful; Your lovingkindness endures forever!

Jordan & I have been training with trach & G-tube care. Our trach nurse, Cindy Reilly, has been nothing short of incredible, walking us through the adjustment process. What a wonderful resource she has been to us, coordinating everything needed for Isaac in the hospital as well as the process towards going home. And speaking of home...we have a tenative home date!!! June 19th! Cindy's working with our home nursing care company, Maxim, to hopefully bump up the discharge date...possibly as soon as the end of next week. It all depends on staffing for Isaac's case. He'll require 24 hour nursing care the first week he's home & then 20 hour care after that. So join us in praying for full staffing for Isaac's case!!


How faithful is our awesome God!!!!!!!!!!!!!!!!

Welcome To Holland

The story below was given to us this past week by the Turner family in the UK. They also have a sweet boy with HLHS (charlieturner.blogspot.com). In their journey with Charlie's condition, someone gave them this story to help describe what life with a special needs child is like. It vividly illustrates what we wrote about last time with changing dreams & has touched our hearts. Thank you, Turners, for this wonderful story. Enjoy!


"I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.' 'Holland?' you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.' But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that’s where I was supposed to go. That’s what I had planned.'

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."


We may or may not experience Italy down the road. Only God knows whether our journey will take us there. But for now, our Holland is bright. We would have never known the beauties of this country without God's plan for Isaac. Holland truly is beautiful this time of year...

Progress & Planning

All three Leino's in Chapel Hill are enjoying a fabulous day. Isaac has made his way up to full feeds & no longer requires TPN (IV nutrition). He still has occasional gag & bile issues, but we're working to figure out the cause of this. The medical team planned to transition Isaac to his home vent on Friday. However, Isaac has done so well that we bumped up his first trial to today! He did so well with it that we've completely switched him over to the home vent now! Its more of an adjustment for us with the equipment than for Isaac. But just like every stage of this journey, we'll learn, adjust, & keep moving forward. Our little fighter continues to amaze & move towards home. Words fail to describe our joy in even having the road home nearly in sight now. Should all continue as planned, its only a few more weeks away.

When we learned last May that we'd be having a child, our minds immediately went to dreams & hopes for our little one. But as circumstances changed with Isaac's condition, that dream would change to fit reality. Those dreams today are far from where they were originally, but they are just as good - simply different. At times, this deviated "pill" feels hard to swallow with all the equipment & seemingly unnatural modes of living. In those moments, we find comfort & strength in remembering that God's purposes are always perfect & for our good. And with a prayer & one glimpse of our sweet boy, anxieties melt away, leaving us once again filled with peace & promise for the days ahead. Our new dreams are filled with hope & amazement with all God has done. We are most blessed!

Game Plan

Its amazing to think that "home" is even in the discussions for Isaac's care now. Hopefully, if everything continues the course & Isaac doesn't throw us for any more loops, we'll be heading home in about a month or so! God is so faithful!

Goals for this week are as follows: establish full feeds through the GJ tube, transition to the home vent, & avoid infection. Join us in praying for these things. So far, Isaac is halfway to his goal feeds, but has spit up bile several times throughout today. We're currently working to determine the cause of this gag & reflux pattern.

Our strong boy is making progress, one baby step at a time. We praise God for all He has done in our lives & all He has yet to do.

Baby Steps Forward...

Isaac has made tiny baby steps forward this week. With each wean of his sedation meds, he shows his sweet personality more with curious blue eyes darting around the room as if taking in the world for the first time again. We've held him for several hours each day since his trach change & love every moment that he's in our arms. (thus the lack in blogs recently) Our sweet little red head continues to amaze us! And while remain deeply grateful for the excellent care he continues to receive at UNC's PICU, we grow ever more eager to be gone from Chapel Hill & back home again.

Throughout last weekend, he had continued trouble keeping his feeds down & we determined that the pyloric valve between the stomach & small intestines had narrowed, making it difficult for feeds to pass through. So Isaac traveled back to VIR to change his G-tube to a GJ-tube. Now, he has access into both his stomach & his jejunum. He's slowly working up towards goal with feeds going directly into his intestines. He'll be on a feeding pump continuously for at least a few months until surgery can go in & fix the narrowed valve. Our home vent has also arrived, so we'll begin training on how to operate the machinery that will be going home with us. In the next couple of weeks, we'll also be meeting some of our in-home nurses (required for all children with a trach).

So Isaac's goals at this point are to successfully transition to the home vent, establish goal feeds, & transition off all intravenous meds. Hopefully, we'll only be here for another month & then home for a bit before his next heart surgery (between 4-8 months old). What a blessing to have UNC only an hour away rather than out of state! It's truly amazing - Isaac turns 12 weeks old tomorrow!!! Where has the time gone...

Happy Mother's Day

I want to give a huge Happy 1st Mother's Day to the most amazing woman in the world, my gorgeous wife, Patience! Isaac and I are forever grateful to God for giving us such an awesome woman. Patience, thank you for being an amazing wife and mother. Your life has and will continue to make an enormous impact, not only on our lives, but also on this world. From the bottom of our hearts, we love you!

Jordan & Isaac

11 Weeks Old!

It has been several days since our last post with good reason: instead of sitting at bedside writing blogs & reading stories, we've been holding our sweet boy!!! How wonderful to spend hours rocking Isaac in our arms, reading him stories & kissing his precious face. Isaac spends the time looking round his room from a new perspective & then drifts off into deep, peaceful sleep. However, he always becomes bright-eyed whenever he hears Jordan's voice. He certainly loves his Daddy!

Since Wednesday, Isaac has successfully weaned from both blood pressure meds (epinepherine & dopamine). We've been able to cut his vent support rate in half & begin feeding him from his G-tube slowly. So far, he's had difficulty with feeds, spitting up several times last night. So we'll start over slowly & see if he'll tolerate them better with time. The edema continues to come off slowly. So we're making some progress. Now, our focus is establishing nutrition through stomach feeds & weaning from the vent & sedation meds.

What a joy to still have our sweet boy here with us! As he's been more awake lately & in our arms, we fall more in love with him each day. More details to come later today or tomorrow. But for now, time to go back to holding Isaac!

To all those with a mother's heart, with or without children of their own: thank you for the love you bring to this world. Happy Mother's Day!

Where We Are Now

After another eventful day, here's where we are now with Isaac:

The I.J. line is working well & will hopefully last for a while. At this point, both subclavian & the left femoral access points are no longer options with the verdict still out on his right femoral. So we need for this line to stay patent. Isaac's blood pressure has held steady for the most part today & we've begun weaning one of the three b.p. meds he is on. So far, he's doing well in the process. His pH took a dip through the afternoon, but has come back up to 7.31 - almost to the normal range. After peeing like a champ yesterday, we've cut back his lasix dosage so as not to diurese him too quickly. Way to go, kidneys! He still has a fever of 37.7 C (roughly 100 degrees Fahrenheit), but at this point nothing has grown out in the cultures taken two nights ago. His right lung has sounded rather wet & junky today, so we've done PT on him to help keep the lung open. Hopefully it won't collapse. He gets his first trach change tomorrow. Once this has occurred & as long as he is stable enough, we should be able to hold him again!

So for now, Isaac is moving in the right direction. He has proven to be a moment-by-moment individual, but at this moment in time, he is fast asleep. Thank you all for your heartfelt encouragement & many prayers for us today. Even in the midst of this rollercoaster ride, we've been overwhelmingly grateful: for the phenomenal medical team here at UNC's PICU, the outpouring of prayer & support from so many around the world, & the never-ending faithfulness of our awesome God. What a gift. Thank You, Lord, for one day more with our sweet boy.

I.J. Line In Place

An IV has been established in Isaac's jugular vein & meds are successfully being administered through the site. Both subclavian access points are no longer patent, so we're running out of access options. However, the I.J. line is working for now. More to come soon on Isaac's overall status...

Isaac is still in VIR. They were unable to establish subclavian access as that vein is no longer patent (open), so they are now going for an jugular line. Not the best of news, but at least we still have a few options at this point.

Brief update w/more to come soon...

Isaac's central line began leaking this morning, causing him a significant drop in blood pressure. We've manipulated his leg for better flow & increased the epinepherine to compensate. He's about to go down to VIR to attempt successful placement of a subclavian line under fluoroscopy (where they use contrast to visualize the veins for placement & threading of the cathetar. This is crucial as he needs these meds to maintain blood pressure right now.

PLEASE PRAY for success in establishing this access point!!!! I'll let you know the results once he's back.

Morning News

Through the events of yesterday & last night, we were once again provided peace amidst the madness, knowing that the ultimate results of Isaac's health are out of our hands & resting in the palms of Almighty God. He is not ignorant of our cries nor Isaac's condition, but carries us all through the storm. And while we may not always understand His hand, we can always trust His heart. So we continue to pray & intercede on Isaac's behalf, knowing that in the end whatever answer comes is for a purpose from a God worthy of our trust.

Our sweet boy made it through the night. Once a third medication, dopamine, was added, Isaac's blood pressure stabilized in the 40 map range. He's been peeing like a racehorse, slowly pulling the edema from his body. However, around 5a, he spiked a fever of 102. Cultures have been sent from all points of access in his little body & until they results come back, we've added a broad spectrum anti-fungal medication to go along the the three antibiotics he's currently on. Right now, Isaac has a low grade fever & continues to hold steady with his blood pressure. We'll be watching his levels closely throughout the day. While a fever is not good, this at least give us more direction in trying to find the root cause of his sickness. Hopefully the cultures will give the answers we're looking for. Our prayer is for strength for Isaac to get through this bend in the road, overcome whatever infection may be brewing within, & to stabilize more on his own. Also, the medical team mentioned trying to gain new access in his left subclavian vein so that we can remove the femoral central line that has been in place for several weeks. This would also help with circulation in that leg as it has been poor since Friday.

In short, Isaac made it through the night. He now has a fever which points to some type of infection within. He's finally responding to the blood pressure meds & is peeing efficiently. Goals for today: possibly gain new access, determine type & site of infection, gain pH balance, continue to diurese without depleting hydration within his veins (basically pee off the right fluid). We'll post again later today with his progress.

Update

Isaac's pH is improving, moving towards safe levels. However, his blood pressure is much worse - map in the low 30's despite increased epinepherine & added milrinone.

Long Day

Sweet Isaac is having much difficulty today. He's retaining a TON of fluid & has had very low blood pressure all morning despite being on a large continual dose of epinepherine. His pH is still quite acidotic, though has slowly responded to the temporary relief of bicarbonate. Long story short - Isaac needs to get over this hump & soon. Please intercede on his behalf.

10 Weeks Old!

The sun is shining bright here in Chapel Hill, where our sweet boy turns 10 weeks old today! I find myself amazed in looking back on all we've gone through so far &, in spite of so many obstacles, how much Isaac has grown. His red hair has filled in nicely since his grand entrance with a mullet in February. As the sedation meds continue to slowly wean, his personality shows through a little bit more each day. Mr. Personality, he's quite a charmer. But there's no room for guesswork when he's upset or irritated - Isaac lets you know!

On the road to recovery, Isaac is experiencing some speed bumps today. His pH continues to be low & acidotic, causing fatigue & strain on his heart. Respiratory therapy has gone up significantly on his vent settings to compensate. His central line no longer draws back & has begun to leak, so we're hoping to thread a new cath over a wire. Once Isaac is successfully feeding through the G-tube & IV nutrition is no longer needed, he'll only need a peripheral IV instead of a central cath line. Hopefully we can last just a few more days on the line he has as the PICU team has been given the green light to start feeds through his G-tube today. However, Isaac continues to become more edemidous with minimal urine output over the past 24 hours. His liver is somewhat enlarged as well. Isaac's body temp has been low today, so blanket & a neo-natal warmer are being used to help. The concern, however, is that this may be the temperature drop before a fever spikes. Much to pray about.

Isaac has come a long way, but he still has quite a ways to go. Our goals/hopes for today is to rewire the central cath for adequate access & blood draws, establish slow feeds, bring his pH to normal levels, & get him to pee out a lot of excess fluid. Lots of area for prayer. We're so grateful to our awesome God for the time He's given us so far with our sweet boy & for bringing him through so much already. Five surgeries in only 10 weeks of life - that's a lot for anyone to go through, let alone a newborn. We have seen God work in miraculous ways in Isaac's life already & are asking Him to do it again.

Continue to pray for Isaac as he recovers from these latest two surgeries. We are currently watching his pH & potassium levels. He's been acidotic since coming out of surgery, which can be a usual responce. However, he's taking longer than anticipated to bounce back as his body is fatigued & thus making us compensate by going up on his vent settings. His blood pressure has also been on the low side. Isaac just needs to get over this hump in the recovery process.

Out of surgery! Now, a new phase in prayer...

Isaac is back from surgery & everything went well. He'll be kept still & sedated over the next few days to allow both the stoma (hole for the trach) & G-tube tract to mature & heal. As with most surgical procedures, the first 24 hours are most critical. The areas of concern following these two procedures are infection, stability of the airway, and stomach pulling away from suture site. So far, Isaac's holding steady & cute as can be without the tape on his face.

Dr. Rose just came back to report the tracheostomy was successful. Everything went smoothly. So we continue to wait as Isaac is now having a G-tube placed.

Off to the O.R.

The anesthesia team just wisked Isaac away to the O.R. for his latest round of surgery - a trach & a G-tube. We're grateful that he is able to have these procedures done today as it took much coordination between the two surgical teams. He should be gone for only a few hours. We'll post an update once he's back from surgery. For now, we wait & pray...

Surgery Postponed to Tomorrow, Possibly Monday

Due to complications in an earlier surgery case, Isaac was unable to go to the O.R. today. He has been added on to tomorrow's schedule at this point. If something arises tomorrow delaying the procedures, Isaac will get his trach & G-tube on Monday. So for now, he's resting sweetly. We'll keep you posted of any changes as they may come.

One O.R. Trip + Two Procedures = Progress

As you know, Isaac will return to the O.R. tomorrow for a tracheostomy. While under general anesthesia, he will also have a G-tube put in place to help with feeds. In light of his cleft palate, the pending trach, & having an ET tube in his mouth since birth, the medical team has wisely determined that a G-tube would most benefit Isaac at this point for feeds. Having never been fed orally combined with the risk of food aspiration, the G-tube will allow him to receive nutrition directly into his stomach & thus optimizing his nutrition. Once Isaac's palate is repaired, we'll be able to work on teaching him to swallow & feed by mouth. We're thrilled that Isaac will be able to undergo both procedures in one trip to the O.R., thanks to the efforts of his doctors in coordinating the two.

We are deeply grateful for the excellent medical team caring for our sweet boy. They continue to give not only phenomenal care & advice, but also heartfelt compassion & care for our family. Join us in prayer for Isaac's fifth round of surgeries - for smooth procedures & quick recovery. Both the trach & G-tube are steps forward towards home.

Tracheostomy set for Thursday

Well, today has been a day of clarification. The morning began with Isaac in optimal conditions for extubation - vitals, nutrition, vent settings, the works. We were thrilled to see our sweet boy's face when they removed the tape & pulled out the ET tube. To see his whole face without tape or tubes...what a blessing! We must have kissed those sweet cheeks a hundred times! Isaac sailed through the first half hour, sating in the high 80's & holding a steady, comfortable heartrate. However, he was unable to cough on his own &, with the build-up of secretions in his lungs, began to tire quickly. In spite of suctioning & albuterol treatments, Isaac simply had to work too hard to breathe & grew too fatigued to clear his lungs on his own. So after nearly two hours, our sweet boy was reintubated & allowed to rest once more.

We are so proud of how well Isaac did, especially considering that he's been intubated for 9 weeks & his many issues (diaphragm, vocal chord, pharynx). He's certainly a fighter, never giving up even when its hard. Now we know for certain that a trach is the best & necessary option in moving Isaac towards recovery. He will head back to the OR on Thursday morning for the tracheostomy. Though this route is different than we had expected, we're happy to move forward in getting Isaac well enough for home. God remains faithful & even when His answer differs from our hopes, we still trust Him, knowing that He heard us & has greater plans in store. We now look ahead to surgery #5.

Extubation attempt set for Tuesday

Isaac's extubation attempt has been moved to Tuesday morning. He's been doing really well but they just had a few more adjustments to make prior to extubation. If they are not successful with this attempt, they will give him a trach on Thursday.

Thank you for your continued prayers for Isaac!

Moving Forward

Isaac has been fairly stable since the last blog post. He has several infections in his blood from the IV lines, so all lines except the femoral line have been pulled & a new catheter put over a wire in the femoral site until a new access site an be established. He is also on three antibiotics for the infections. There have been no more seizures since being put on medication for it, and the spinal tap came back clean.

The main goal right now is to extubate him hopefully on Monday. If he is not successful with extubation, we will give him a trach soon after. Whether he's extubated or trached, we're eager to get the ET tube out of him and hopefully speed up the recovery process. At least we'll be one step closer to holding him again.

Please pray for a successful extubation. Thanks!

Scan Results & Next Steps

Isaac has made it through another night. Since receiving the seizure medication, he has not had any more clinical (visible) seizures. The CT scan revealed no bleeding nor clotting in the brain. There was increased fluid symmetrically surrounding his brain, but not to an alarming extent. An EEG has been ordered once more to monitor Isaac's brain activity over an extended period of time to determine whether he is experiencing non-clinical seizures still & where they are firing in the brain. Depending on the results of this monitoring, an MRI may be in order. However, Isaac needs to become far more stable to leave the floor for the long MRI scan. Also, his following resident is performing an LP (lumbar puncture/spinal tap) on him right now to determine whether there is an infection, such as meningitis, in his spinal fluid. Neurology has performed an assessment with results pending. In light of last night's seizure activity, discussion of removing the Broviak has returned to the table.

On a lighter note, his color has improved today & the edema has been reduced. Our sweet boy is back to sleeping soundly with his little hand brought up right under his chin, much like he did in utero (see January 18th blog entry for pics). His heart rate has returned to the 140's & his blood pressure has responded favorably to the epinephrine. And in true fashion, Isaac has thrown us for a loop once more with a lactate of 1.8 most recently.

So the journey continues. While we have no idea what lies just beyond the next bend, we know & trust the One who guides our way. Our hearts are deeply grateful for His faithfulness & for the loving support & friends of everyone around the world. Thank you for continuing to walk along side us as we press on in our journey. The marathon continues one day more.

Seizures & Other Such Dilemmas...

Well, Isaac is having quite a night. His lactate has remained around 5.7 throughout this evening, most recently coming down to 4.0. His heartrate has continued to climb to the mid-190's, with O2 sats falling towards to 60's range. His blood pressure has also fluxed, high for a while & then dropping quite low. He is now on epinepherine to compensate. Around 10p, Isaac had an uninterruptable seizure, lasting roughly two minutes. After two doses of intervention meds, he was still having episodes of seizing. He just came back from having a CAT scan & we'll receive the final read tomorrow. Anti-seizure meds have been started & our boy is sleeping deeply now.

As you can see, his is still in quite a critical state. Lord, we ask you intervene & bring healing to our boy's small body. Bring him through this night once more. Our eyes remain fixed on You as You alone are the Great Physician.

Update...

As of 5p, Isaac's blood sugars have continued to flux throughout the day & his lactate continually climb. He began the morning with a lactate of 2.1, moving to 3.6 by 1p. Between 1p & 3p, it has jumped to 5.7 for reasons unknown to us. His resting heartrate has also been elevated in the 170's. We are concerned as we still don't know why his lactate climbs to such high levels (remember, normal range is 0.0 to 1.2). Our prayer is for Isaac to not continue trending upwards. For now, all we can do is wait & see...

Wall of Lights

So our sweet boy has us guessing & chasing numbers once again. While he is indeed very sick, he has been relatively stable today. He has responded well to the wall of meds he is now on...we call it Isaac's wall of lights. Our main areas of concern/focus are his infection, lactate, & blood sugar levels. Lactate has jumped up & down throughout the day from high 5's to low 2's & back. As of 6p, it was 3.4. Isaac's glucose has been all over the place today, changing dramatically with minor adjustments in his meds. Our goal is to finally keep him steady within the normal level range. Isaac still shows signs of having an infection, though has yet to develop a fever. If infection persists at the Broviac site, it will need to be removed which creates a problem with access for meds. Much to be in prayer about.

Thank you all for continuing to come alongside our family in prayer as Isaac continues his fight. Thank You, Lord, for one day more with our sweet boy. Be it Your will, we ask for many, many more.

Latest gas: lactate of 3.4 & glucose of 101. Since 6p, glucose has gone from 427 down to 43 & now is at normal levels. The rollercoaster continues...

Thank you, Lord, for continuing to work in our sweet boy. We trust him in Your hands & ask for your wisdom to determine the root of these issues.

Climbing...

Isaac's nurse just came in with the latest blood gas...lactate now at 10.4. It is climbing fast & we think it is from infection. Please pray...

Confusing

Isaac's lactate was around 5 today & then dipped to 2.3 after a blood transfusion. It is now back up to 5.3. Also, Isaac had been on insulin for high blood sugars. After they had been low for a while, the insulin was discontinued & sugars checked every two hours. At 4p, his glucose levels were 60. At 6p, they were above 400! This points to increase in infection & the medical team has adjusted his meds to bring his sugars back down. While he is not septic yet, things are pointing more in that direction. So please join us in prayer for our sweet boy!

Eight Weeks Young

Where has the time gone? Isaac is eight weeks old today! What a journey this little one has already been on. While the past two months have been some of the most challenging in our lives, we wouldn't trade them for anything as we've fallen more in love with our son with each passing day.


At this point, our main areas of focus are his blood infection & edema. The staph infection in Isaac's blood is being treated aggressively by two antibiotics to hopefully eliminate the infection before he becomes very sick again (septic). In the past, he has become sick very quickly once an infection presented itself, so we're following this very closely in hopes of stopping severe problems before they begin. Also, Isaac has become quite puffy again over the past several days, so we're working to diurese him back to a normal fluid balance. He is no longer in withdrawl from weaning his sedation meds as the team has found his sweet spot. After a day of resting, we will slowly work to wean him further over the course of several days. Once these issues resolve, we can return our focus back to extubation.

So main areas needing prayer & attention:
::elimination of staph infection in his blood & protection from it spreading to the rest of his systems
::successful reduction of excess fluids in Isaac's body without causing stress to his kidneys
::further weaning from sedation meds in preparation for extubation
::successful extubation & strength in Isaac's lungs to hopefully remain off the vent

Extubation postponed

I type this as Patience gets a well deserved nap. Isaac was originally scheduled for extubation today, but that will be postponed due to a couple complications. Cultures taken a couple days ago confirmed that he does have a blood infection at his Broviak site so they have put him back on the antibiotics to kill the infection. Lactate was back up to 4.1 this morning. They've been trying to wean him off some of his pain meds, but yesterday and this morning he's been displaying signs of withdrawal. With him being stressed from these issues, the docs have decided to postpone the extubation and try to get him to a better state before trying extubation.

Some good news...the EEG results came back and Isaac has NOT been having seizures! Praise the Lord! We are so appreciative of everyone keeping up with our boy and continuing to pray for him. To God be all the glory for Isaac's progress thus far, and for what He has in store!

Extubation?

No news yet on the EEG results nor the cultures taken yesterday. We hope nothing grows in the cultures & our boy will be infection-free. Thankfully, Isaac has not had anymore behavioral quirks since Monday night. The EEG results will confirm whether it was in fact seizure activity or our boy simply throwing us for a loop once again.

Something major for us all to be praying about: if Isaac continues to thrive with the new vent settings, the medical team hopes to attempt extubation this Saturday! This would be a huge step for our son if successful. We're just thrilled to even be considering this. For this to successfully occur, Isaac's left vocal chord needs to be functioning again, his pharynx supporting itself (it was collapsed at the last attempt), & for his diaphragm to be able to pull in full breathes consistently on his own. Should this not be successful, two surgical options remain: placate the left side of his diaphragm or perform a tracheostomy.

Join us in praying for our sweet boy - that Saturday would hold a successful extubation & that he won't need to be re-intubated due to fatigue.

Curious Behavior

Yesterday afternoon, Isaac demonstrated some peculiar behavior. While he was awake, his eyes began fluttering in a choppy fashion - much like a ball bouncing within a box. He then brought both arms into his chest, similar to a chest press, & raised his eyebrows. Then relaxed. This rhythm repeated about 8 or 9 times, then he was back to himself & eventually, fell fast asleep. I mentioned it to his nurse & we decided just to keep an eye out for it occurring again. It wasn't until last night that this behavioral rhythm returned, occurring more frequently. They continued sporadically even after getting a second bolus of sedation meds.

We're concerned that this may be seizure activity. The rapid eye movement & repeated rhythmic behavior points towards this, however his vitals are unaffected by each episode. So one other possibility is that he is retching, which like dry-heaving. An EEG will be done on Isaac today, monitoring brain activities for a period of time to determine whether he is in fact having seizures & hopefully the cause of them. Seizures can result from a variety of causes: dehydration, electrolyte imbalance, bleeding in the brain. For now, its a waiting game to see what Isaac does & what the EEG shows.

Isaac's white cell count is up this morning as well, which indicates either infection or validates seizure activity. Culture results should be back within the next 48 hours to validate whether or not he has an infection. On a positive note, respiratory therapy has gone down again on his rate (amount of breaths given per minute by the machine) from 14 to 10 & so far, our boy has taken the change in stride. The next blood gas will tell us more of how he's handling the change. This may be one step closer to extubation.

So that's the news for now: possible seizures & infection, but progress on the vent. More to come later tonight...

A Fresh Perspective

Brilliant blue skies frame a radiant sun today in Chapel Hill. There's not a cloud in the sky & spring's flowers brighten the landscape with splashes of color. Even from within the halls of UNC's Intensive Care Unit, no one will argue that this is in fact a beautiful day.

Arriving at the hospital this morning, I learned of a delightful change in Isaac's care: he's been moved to a new room! Just a few doors down on the PICU, our sweet boy now has the corner room with two windows! Natural light floods his room & we can enjoy greater views of the blue skies outside. It may seem like a small change, but after seven weeks in the same room, we gladly welcome the change of scenery. Now Isaac has four new ceiling butterflies to make friends with. :)

Isaac remains stable & looks fabulous! As of this morning, he measures 50 cm & 4.3 kg! (19.7 in. & 9.5 lbs.) He's gained almost two whole pounds since birth! What a fighter! Our goals remain nutrition & weaning from the vent. At this point, we're waiting for his ND tube to get into his intestines as it is currently coiled in his stomach. Until then, Isaac is receiving IV nutrition & will begin receiving lipids today at 6p. Respiratory therapy has gone down again on his rate & so far, Isaac has responded fabulously! Since this change, his blood gas has actually improved - pH & CO2 levels ideal & his lactate is now 1.4!!! Only .2 to go until it's in normal range! Thank you, Lord! The incision from the diaphragm surgery continues to heal nicely & he's back to his old silly self now that the chest tube is out. Once he's been weaned from the vent, narcotics, & tolerates his feeds, we'll be able to address issues such as the hernia, cleft palate & test hearing in his left ear.

God continues to show Himself strong & faithful towards our family, strengthening our sweet boy & meeting our unspoken needs. Through Isaac's journey, He is changing so many lives - ourselves, those who care for Isaac here at UNC, & everyone who has shared in praying for our sweet boy. Only our great God is able to take something so dire & use it to show His love & glory! Amen & Amen!!!

How to Pray for Isaac::
::tolerance to feeds & adequate nutrition
::successful weaning off the vent w/o need for more surgery or a trach
::protection against new infections

Some shots of Isaac's new room:

Back in Action

We're back to blogging after several days with a broken laptop. But thanks to the AppleCare plan, a fabulous Genious at the Apple store at Southpoint, & two hours of reformating, we're back in action! The best part - no pictures were lost! Thank you for your patience during this hiatus & your continued prayers for our sweet boy. Here's the scoop on what's happened since Thursday:

No major complications have occurred since Isaac's diaphragm surgery on Thursday, though he has been quite uncomfortable with the chest tube in. This will thankfully be coming out today, so he should be far more comfortable. Respiratory therapy has been able to wean him some more from the vent, but has come to the point where he's just tiring out with any further adjustments. Our biggest goal at this point is to successfully establish feeds through his ND tube, which bypasses his stomach & goes directly into his intestines. His little body works harder than most with his heart condition, so he requires more nutrition than the average baby. He has been on a low amount of breastmilk for a few days, but has repeatedly spit up, keeping him from absorbing the nutrition. As he is still intubated, one concern with spitting up is the risk of aspiration which could cause pneumonia. Better nutrition will provide Isaac with the strength needed to hopefully wean off the vent as he won't tire out as quickly.

The new Broviac line has been working well & Dr. Harris was able to establish another central line in his right femoral artery. A concern in the back of our minds is access as it is becoming increasingly difficult to establish new lines when one fails. Please pray that no complications arrise with the lines currently in place for the duration of Isaac's time here in the hospital. We don't want to get to the place where he can't receive the necessary meds simply because he doesn't have a line of access to receive them.

So the two greatest hurdles at this point are nutrition & respiratory: Isaac needs to successfully establish tolerance to feeds & be weaned from the vent, hopefully without the need of a trach. In other fronts, his lactate has leveled out around the 2-2.4 range. Still higher than normal, but MUCH BETTER than it had been. The results of the octreotide scan are in: no masses found in his pancreas - no insulinoma! So it seems the hyperinsulinism may be a newborn thing. We'll just have to wait & see.

So our sweet boy has come a long way, though he still has a ways to go. We're so grateful that he is still here. As he turned 7 weeks old yesterday, we were keanly aware that it was 2 weeks more than we thought he'd have. Thank you, Lord, for each day with this precious little boy! We fall more in love with him each day & at times grow impatient to close this chapter & have him safe in our arms at home. And while every line & scar in him plays a vital role in moving him towards health, our hearts can still feel heavy, wishing he didn't require any of them. So we continue to pray for healing, health, & home. In the waiting, solace comes from the Word. Thank You, Lord, for never leaving our side. During the weeks that we can't hold our sweet boy, we give You thanks that he rests in Your everloving arms.

"The LORD upholds all those who fall and lifts up all who are bowed down. The eyes of all look to You, and You give them their food at the proper time. You open Your hand and satisfy the desires of every living thing. The LORD is righteous in all His ways and loving toward all He has made. The LORD is near to all who call on Him, to all who call on Him in truth. He fulfills the desires of those who fear Him; He hears their cry and saves them." ~ Psalm 145.14-19

Out of Surgery

Dr. Mill just came to update that Isaac has successfully made it through another surgery. A right subclavian Broviac line was established, so we still have access for meds for our sweet boy. Hopefully, this line will remain effective through the duration of Isaac's time here at UNC & will not develop any clots as he needs that access point to remain patent for future surgeries. Dr. Mill successfully placated the right side of Isaac's diaphragm. Time will tell whether the left side will require a placation as well. No problems with bleeding so far. Now we'll let our boy heal from the surgery & hopefully be able to wean him off the vent without need for a trach. As with all surgical procedures, the first 24 hours are the most critical as the body adapts to changes that have been made. Hopefully, this will be the last surgery our sweet boy needs for a while. More to come later...

In Surgery...

Isaac is currently in surgery for the diaphragm placation. While he's under anesthesia, they are also going to put in another Broviac line, since his Subclavian line stopped working. Please join us in praying that the surgery goes well, and that his recovery goes as desired.

Diaphragm Surgery Tomorrow

Isaac will undergo surgery tomorrow afternoon to placate his diaphragm. Basically, the surgeon will go in through Isaac's ribs & stitch down the eventrated (bowed) portion of his diaphragm to where it ought to be. This will allow the diaphragm as a whole to function more efficiently & thus be able to breathe deeply on his own. This will also enable the medical team to better determine whether or not a trach is necessary as it takes the diaphragm issue out of the equation.

So please be praying for our sweet boy tomorrow afternoon! Though this will not be nearly as severe as the open-heart procedure, all surgery carries risk & Isaac is still weak from being so sick. Our prayer is for Isaac to successfully make it through this surgery & then move towards extubation.

Also, Isaac has experienced some difficulties this afternoon. His lactate is now 6.7 & his oxygen saturations have been hanging in the 60's/low 70's. They've increased his oxygen levels slightly to bring up the O2 sats & have stopped his breastmilk feeds for now to see if the lactate will go back down. His nurse will draw another blood gas in a few hours to see how he has responded to these changes. So keep praying..

On a lighter note, today is Jordan's birthday!! My amazing husband is 24 today, so be sure to congratulate him on another awesome year. :)

Progress & Prayer Requests

Our sweet boy is quite a fighter! To look at him, you'd never know he was at death's door twice in the past two weeks. God remains faithful & with each day, we see more of our strong-willed boy's personality come out. :) He has come so far, but still has quite a distance to go.

Medically speaking, we still aren't quite sure what caused to get so sick & then to recover. Our own little enigma. In many ways, it feels like Isaac is picking up where he left off before getting sick two weeks ago. His heart continues to function well & his oxygen saturations have been in the ideal ranges. Our focus has returned to his respiratory & metabolic systems. We're still uncertain of how much Isaac's diaphragm eventration will affect his ability to breathe off the ventilator. The medical team is eager to get the ET tube out of Isaac, whether by extubation or a tracheostomy. He will either require surgery for his diaphragm or to place a trach. The issue of hyperinsulinism has been brought to the table again in trying to determine cause for the flux in glucose & lactate levels. (For the first time in many days, Isaac's lactate was in normal range on Monday! What a blessing to see that "1.7" on the blood gas report. Since then, his lactate has increased up to 4.2 yesterday & then back down to 3.4 This morning, the lactate was at 3.6, so he continues to keep us guessing. This may have resulted from efforts in adjusting vent levels or from starting to feed him breastmilk again through the ND tube.) The muscle biopsy performed several weeks ago revealed pockets of glucose being stored in the muscle tissue, which lends itself to a metabolic disorder - relating to how Isaac's body processes energy. He will have a round of octreotide scans done over the next few days to observe his pancreas & search for an insulin-sucreting mass.

So in short, Isaac is doing much better than a week ago, but still has a long road ahead. The areas of focus at this time are:
- his lactate levels: we need to determine the cause in their continued flux & stabilize the issue.
- his glucose levels: determine source for the hyperinsulinism & whether Isaac has a metabolic disorder. We need a successful round of octreotide scans for this.
- extubation: either successfully get Isaac off the vent & breathing on his own, or undergo a tracheostomy to aid in ventilation. Either way, the ET tube needs to be removed soon.

We're so grateful for all God has brought our boy through & for all He has in store for us in the days ahead. Though we don't know what each day will bring, we're deeply grateful for everyone we have with our sweet boy. Thank you all for your steadfast prayers. Let's keep bringing Isaac before the Lord & watch how He will answer!

Easter::Reflecting on God's Miracles

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 an 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!