Still Critical

Isaac is definitely a fighter! He's doing slightly better than he was Wednesday night, but is still very sick & in critical condition. The fact that we don't know what caused this week's issues causes concern for the days that lay ahead. Even though his CO2 is down & his pH is looking good, his lactate is too high & his organs are working very hard right now. Every now & then, his heart rate will sporatically escalate for unknown reasons, & also has been having circulation problems in his arms & legs. The edema is beginning to improve though he still has a long way to go.

We are deeply grateful for the flood of prayers & encouragement we've received for our sweet boy. This journey has truly been a medical roller coaster for Isaac, & an emotional one for us. Even though it is extremely difficult, we continue to place our trust in God, knowing He's in control & has a purpose & plan for all of this.

Into the night...

So far tonight, Isaac's heartrate & CO2 levels have slowly been climbing, though not to the severe levels they were last night. Also, he has begun holding onto more fluid, increasing the severe edema again. Doctors are adjusting some meds to hopefully pull off some edema & provide greater stability to his heartrate. Isaac has shown great sensitivity to adjustments of levels, so they are making all necessary changes with great care & vigilance. The severity of Isaac's condition creates a very sensitive balancing act for his nurse & doctors as they proceed in moving him towards a better state. His night nurse spend several years working in cardiology, so she's extremely familiar with HLHS kids. This brings greater peace of mind to Jordan & I as we attempt to get some rest tonight in order to be ready for whenever we're needed.

How to pray tonight::
::for Isaac's heartrate, CO2 levels, & pH remain in safe ranges.
::that he would respond to meds, pulling fluid from the third space back into the vessels.
::for his kidneys - better levels & function in removing excess fluid from the body & thus removing the edema quickly so as not to become septic. Also, for protection from the negative side affects these meds can have.
::for wisdom for the nurses & doctors in caring for him & discovering what is causing these problems.

Thank you all for your steadfast, passionate prayers for our sweet boy & continued encouragement for Jordan & I. Doctors remain amazed that he's made it through thus far. To God be the glory! As one ofthem said earlier, "Miracles do still happen." We've seen God's hand at work today & are asking Him to continue in bringing our son through this valley. God is still in control! Let us pray!!!

6:30pm Update

Here's the latest on our sweet Isaac:

God has been working today in ways that the doctors can't explain. His CO2 levels have come back down to the relatively safe range (from the 120's+ to the 40's) & his pH is now in the normal range as well. His kidney levels have also begun to move in the right direction. Through the night, Isaac's heart rate fluxed between 90 & 200. He has been holding relatively steady for the past several hours in the safe range.

Isaac remains our medical enigma. Everyone continues to scratch their heads with how he has responded, both negative & positive aspects. Prayer is powerful!! Even the doctors have said, "miracles do happen" (this coming from those who didn't expect him to make it through the night). Praise God! So he is more stable than last night, but far from being out of the water yet. Things still causing the doctors to be concerned are his lactate & potassium levels have begun to escalate for unexplainable reasons and he is still retaining a lot of fluid in his tissues. They also remain uncertain as to the reasons causing last night's difficulties. Isaac continues to keep us all on our toes.

Thank you all for your passionate prayers for our family & overwhelming support. We are still taking this moment by moment, thanking God for each bit of progress & laying Isaac at His feet with each set back.

Waiting

Psalm 27:14, "Wait for the LORD; be strong and take heart and wait for the LORD."

Psalm 33:20, "We wait in hope for the LORD; he is our help and our shield."

Well, we made it through the night, with some small improvements early this morning in his CO2 levels. He is still in the same dangerous place as last night, so we continue to wait and pray. It was a very difficult night to say the least, but that doesn't change the fact that God is in control and is holding our baby Isaac in His loving hands.

We ask for continued prayer for Isaac, and also for strength and comfort for Patience and I (and family) in the waiting.

Thank you for your continued prayer, support, and encouragement.

At death's door...

We just spoke with the doctor's and did not get the news we wanted to hear. In brief, they've "turned over every rock" they can think of and cannot figure out why he is not stabalizing. There are many things happening, as noted in the previous blog, but because his body is not releasing enough CO2, his blood is very acidic...to the point that he could pass away at any minute due to acid poisoning.

Psalm 23:4, "Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

We ask that you pray... pray hard. Our desire is for Isaac to be healed, but above all, pray that God's will would be done and that He would be glorified in Isaac's life and through this situation. We know that God has a great plan for his life, however long or short it may be. Patience and I know God has used Isaac to impact many parts of the world. We are very proud Isaac and of his fight thus far.

Please pray.

CRITICAL! URGENT NEED FOR PRAYER!

Our nurse called us at 6:40a this morning to tell us to get to the hospital when we could - Isaac was now in critical condition.

Here's a snapshot of what is going on:
Through the night, Isaac's carbon dioxide output from his lungs continued to decline despite interventions from the ventilator. They had paralyzed him to allow full control with the vent, but he was still retaining a lot of CO2, making his blood pH levels increasingly acidotic. The more acid your blood, the more strain on your heart. Blood pressure medicines were also restarted to aid his heart. Isaac has now been put on a jet ventilator for greater control of his breathing & to hopefully get the CO2 surplus out of his system.

His kindey levels have continued to climb in the wrong direction, indicating that his vessels are dehydrated. However, he is third spacing every bit of fluid he's given. Basically, he's full of fluid in his tissues & completely lacking in his blood stream. Because of this kidney confusion, they are not sending fluid to the bladder to be released. He's continuing to become more edemedous & is more swollen than we've ever seen. If we cannot figure out why the kidneys are failing in this way, he'll soon run the risk of becoming toxic with the retained fluid. This swelling also is creating increased difficulty to the heart.

There are also signs pointing to a fungal infection in Isaac's system along with the lung staph infection. A skin biopsy has been ordered to go along w/the muscle biopsy performed last Thursday. Doctors performed a spinal tap for infection & fluid last night. Thankfully, preliminary results are positive. Isaac's blood sugars have also been fluxing & so hydrocortizone (steroid) has been administered in hopes of regulating his pancreas' insulin output.

Isaac is something of an enigma right now. Doctors are doing everything they can to figure out what is causing these problems so as to resolve them before he begins system failure. They have been excellent & forthright with us so far. As they have said, Isaac is VERY sick. You can see their great concern on their faces.

PLEASE PRAY FOR ISAAC!!!! His state is extremely critical right now! Doctors are focusing all their attention on figuring out what is causing these problems for Isaac's kidneys, lungs, pancreas & heart right now before its too late. Isaac's state has never been more critical. Join us in lifting him up before God, asking for wisdom & a healing miracle. God still remains in control...that has not changed for one second! As Jordan & I read Isaiah 40 this morning, we were so encouraged as it reminded us that God never tires nor grows weary; His understanding is beyond what we can fathom. He knows exactly what is going on & understands exactly what we're going through in the midst of this. We need to stand firm & in the gap for Isaac. Please pray!!!!!

Weary along the way...

Have you ever run a marathon? You start out strong, your outlook – optimistic. Steady strides & fixed focus move you forward towards your goal. You may even run for quite a while, but eventually, fatigue begins to set in. Often times, you just mentally regroup, perhaps even stopping for a water break. On again you run.
And then it hits. That point where you just don’t think you can go on any more. Muscles throbbing & breath escaping you, the road ahead somehow seems to grow longer & steeper before your very eyes. In your mind, you know that if you remain steadfast, pushing through the pain towards the finish line, that second wind will come & you’ll find the strength to make it through to the end. But you honestly don’t know if you have the strength to take another step, let alone another stride. Everything in you longs to give up as the strain of moving forward seems more than you can bear. Will this road ever end?

Such has been this past week. For whatever reason, this fourth week in Chapel Hill seemed to carry with it a heavy blow. Each day brought new concerns & setbacks to our boy’s progress in recovery, feeling much like one step forward & two steps back.

For several days, Isaac’s oxygen saturations fluxed to concerning lows. He also experienced increased volume & viscosity in his secretions. These conditions made breathing more difficult with Isaac often gagging on the mucus in his throat & lungs. Thus his ventilator settings needed to be adjusted to provide greater assistance to Isaac in breathing. This will most likely delay extubation further & possibly increase his need for the trach. This however is a catch-22 as future open-heart procedures could be affected by having the trach in place. So it’s now a matter of determining the lesser of two evils.

Increased fluid in his lungs, a low-grade fever yesterday, & the finding of bacteria from his ET tube culture indicate that Isaac has the early stages of pneumonia. Doctors have begun a 14-day treatment of Vancomycin & Zocin for this as cultures have confirmed the presence of staph in his lungs.

Following the Broviac operation, Isaac has not tolerated the breast milk feeds, causing him to go back on IV nutrition. He repeatedly spit up for a few days, a result of his stomach being unsettled & gagging on mucus that was caught between the ET tube & his throat. They have just turned his breast milk feeds back on tonight w/an ND tube now in place. This tube bypasses the stomach so that food can go directly into the digestive tract, thus avoiding the nausea spells. Once he shows consistent tolerance to the feeds, the tube will gradually be worked back towards the stomach. The tube may need to be reinserted by radiology under the assistance of fluoroscopy, as it seems to be coiling in his stomach & thus not passing into the bowel.

We discovered that Isaac has an ingeuinous hernia on Friday, which will most likely require a surgical repair. With more critical issues pressing right now, this will be put on the back burner until he nears discharge. So for now, we’ll just keep a vigilant watch to see if it worsens.

Over the past week, Isaac’s blood glucose levels have been unusually low. Several times, his TPM (IV nutrition) has been adjusted to compensate for this drop in sugars, but to no avail. The endocrinology team has closely followed this trend & are concerned that Issac may have hyperinsulinism, a condition where the pancreas exerts too much insulin. Diabetes is where the body has a surplus of glucose & not enough insulin. Hyperinsulinism is the inverse. Another possibility is the presence of insulinoma (an insulin-secreting mass) in Isaac’s pancreas. He will be taken down for an octreotide scan today to look for a mass.

Doctors are also concerned with Isaac’s kidneys as his BUN levels are elevated, indicating that his vessels are dehydrated. However, in spite of the administration of Lasix (a diuretic), Isaac is retaining an exorbitant amount of fluid in third space (tissues). So our boy is carrying a great deal of fluid & yet lacking what is needed in his vessels. Several of the medications he is currently on have renal effects, so doctors are working out a balancing act between them all to give Isaac what he needs right now to his heart & lungs without causing damage to his kidneys.

This road holds many twists & turns. Most recently, uphill in the pouring rain. We don’t know what lies just beyond the next bend. We don’t know how steep this hill may be nor the distance of our journey. But as our muscles strain for the next stride & breath seems just out of reach, we press on for love of our little boy & the knowledge that God has not forsaken us. Our hearts ache for home with sweet Isaac in our arms. God provides us strength for each day & we remain resolved to run on for our little boy as he continues to fight towards recovery. The occasional ray of light breaks through the clouds, reminding us of the glorious sun shining just beyond the grey. And so we continue on, waiting for the second wind to come.

One Month Old!!!

Four weeks ago today, at 3:40a to be exact, our lives were forever changed as our sweet baby boy entered the world. Since then, Isaac has been through more than most of us experience in a lifetime. Watching Isaac sleep this morning, I found myself amazed by all the Lord has brought us through so far & in the midst of the madness, feeling overwhelmingly blessed to have this precious little one in our lives.

I've seen several types of sleep in our sweet boy over the past four weeks. Drug-induced sleep, sleep from paralysis, sleep brought on from sheer fatigue. But today, refreshing & peace swept over me as I saw for the first time the peaceful sleep of a new baby. Amidst the machines & tubes, Isaac lay fast asleep. For a moment, the weight of last week's findings & events melted away as I stood beside my precious baby boy. His peaceful slumber seemed to whisper, "Everything's going to be alright."

Happy Birthday, Isaac! One month down, many more to go..

Back from the OR

Isaac's Broviac procedure was flawless. Dr. Valley, the anesthesiologist from his heart surgery, was present for this procedure as well. He reported that everything happened as planned & they were able to successfully establish a line in his right femoral artery. The external access point is halfway down his right thigh, allowing him to move comfotably & without risk of contamination from dirty diapers. Once all IV lines have been transfered to the Broviac port, Isaac's subclavian line will be removed.

Over the past few weeks, Isaac's lactate levels have experienced repeated waves of flux. Due to this consistent trend, our doctors opted to have a muscle biopsy done today while in the OR. They're looking for the presence of a range of rare mitochondrial disorders. Each cell in our bodies have mitochondria, which utilize oxygen to translate food into energy for the body. The continued lactate surges may be an indication that this part of Isaac's cells just aren't processing correctly. Doctors suspect that he does not have these disorders, but want to be certain to ensure proper treatment. Results will come back in a few weeks.

So that's the latest on our sweet boy. Even in the midst of all this, his personality is really beginning to show through as the sedation meds are weaned. He's quite a feisty little guy! An each time he opens his eyes to take in this huge new world, our hearts simply melt with adoration for our precious son. What a gift!

Broviac Operation

Hard to believe that Isaac is three & a half weeks old already! While some days can feel a bit long, overall the time has simply flown by! He's looking better than ever, waking up more often to take in this new world. He looks more & more like daddy every day!

Today, Isaac will undergo an operation to put in a Broviac catheter. As you know, doctors have had a difficult time keeping cath lines in w/his small size & tendency to develop microclots. The subclavian line has been successful so far, but doctors want to get it out as soon as possible so no problems develop. Once Isaac undergoes the Glenn surgery in a few months, blood from the upper part of his body passively flows back to his heart. Thus, doctors want to keep all upper torso access points as clear as possible to prevent any problems for our boy in the future.

The Broviac is a semi-permenant catheter that can stay in place any period of time from several weeks to even years. Isaac will undergo a cut-down in the OR for optimum sterile conditions. The external access to the catheter is some distance from the internal entrance to the main line, decreasing risk of infection. The Broviac will allow for clean access into Isaac's system without the need for repeated pricks & attempts at temporary lines.

The operation will occur around 2p today, so be praying for our sweet boy. Thank you all for keeping Isaac in your hearts & prayers!

Extubation or Tracheostomy?

(Our handsome son, tape free! Taken today during the tape change for his ventilator ET tube.)


We have received further detail into Isaac's condition regarding the extubation attempt for next week. As mentioned previously, his doctors want to give him a week to optimize his chances for extubation. Through breast milk feeds via the NG tube & gradual ventilator setting adjustments, they hope to strengthen both his lungs & entire body over the next seven days. During the course of the last extubation attempt, the brochoscopy revealed paralysis of Isaac's left vocal chord & collape of the pharynx. Often times, these conditions are relatively temporary & resolve on their own. However, the course of this recovery can run the length of several months or longer. This cannot be determined for certain until recovery actually occurs.

Isaac will have been intubated for a month at the time of reevaluating for extubation. The longer he has the ET tube in place, the greater his risk for induced pneumonia. So this results in two options for Isaac: successful extubation next week or the need for a tracheostomy. A tracheostomy is a surgical construction of an opening in the trachea, usually by making an incision in the front of the neck, for the insertion of a catheter or tube to facilitate breathing. This would allow Isaac to breathe while bypassing the mouth & vocal chords, allowing them time to heal. For full details on this procedure & life with a trach, visit www.tracheostomy.com.

To be quite candid, this news comes as a heavy surprise. Jordan & I desire to do whatever will be best for our sweet son. If the trach is what he needs, than we'll embrace this & learn all there is to know in order to give him the best possible care. As parents, we desire the best for our children. Sometimes, what is best is far from what was thought to be ideal. Our hearts desire that this step not be necessary & that he'll be able to breathe on his own. However, what is best for Isaac is what we will embrace. Even as we've been caught off guard, we remain confident that none of this is a surprise to our great God. He already knows all Isaac needs, all we will need to be the best parents possible for him, & how this all will resolve in the end. And as temptation lulls us into the land of what-ifs & worse case scenarios, we're stopped by the words of Christ - seek Him first & everything we need will be added to us. Don't borrow worry from tomorrow. (Matt. 6) Our God will supply all we need. He is good & His purposes for us are loving & right.

Join us in prayer over this next week for Isaac. Pray for mobility to return to his left vocal chord & strength to return to his pharynx. Pray for Isaac's diaphragm to be able to fully function on its own, pulling in deep breathes without need for assistance or surgery. For these issues to resolve so quickly would be on the side of miraculous, but we serve an awesome God capable of working in ways beyond our imagination. A week of concentrated prayer lays ahead.

A week of strengthening...

Another beautiful day in Chapel Hill & things are looking just as sunny in the PICU. Isaac had a steady night last night, with his pH & lactate levels slowly working their way towards ideal. They began slowly feeding him breast milk through the NG tube yesterday to test his tolerance for it. So far, it has been successful! The doctors have now increased the amount of milk he will receive. They have decided to wait another week before attempting to extubate again. This will give him time to get stronger as he's now receiving breast milk. Thanks to BAZI, the milk being produced has been rich in color & consistancy, indicating optimum nutrition for Isaac. Also, the respiratory therapists will closely monitor his ventilator settings over the next week, gradually teaching his lungs to function on their own.

We are so grateful for the care Isaac has received here at UNC. All of the doctors & nurses have given him such excellent care, concerned with what is best for our sweet boy rather than trying to hit a certain timeline. We're truly grateful for their care & expertise. As we've been here for three weeks already with several more still to come, friendships are developing with the staff of the PICU. What a blessing! Thank you, Lord, for surrounding our boy with such excellent care! So many people have to travel several hours from all parts of the state & nation to receive treatment here at UNC. We are truly fortunate to have this incredible hospital so close by.

This will be a week of resting & strengthening for our sweet son, giving him some much needed rest after three weeks of procedures & interventions. He looks stronger by the day. Lord, thank you for this beautiful boy! We're eager to see all He has in store for this precious life.

Daddy getting Isaac started off on the right foot. Go Gators!


Mommy giving Isaac a bath. Got to get those neck folds clean!

Next Hurdle: Extubation

Our next hurdle is to successfully extubate Isaac. This was not attempted today as the doctors want to give him a bit more time to recover, strengthen his lungs, & decrease the edema in his vocal chords & pharynx. They will reevaluate his stats & ventilator settings each day to determine when optimal time for extubation will be. Once this is achieved, the focus will turn to successful weaning of all narcotics (fentanyl was weaned today) & then feeding.

Isaac has been more active today, moving his arms & opening his eyes from time to time. What a sweet little boy! He's quite a looker :)

Line access achieved...

After several attempts & three hours of work, Dr. Joyner was able to successfully open a port in the subclavian vein (below the left clavical). So Isaac with be able to continue receiving the necessary meds through this new port. Thank you, Lord, for making a way! Our prayer now is for no new clots to develop & a successful extubation tomorrow. Continue also to pray for protection against infection. God is teaching us so much about strength in waiting. More to come on that soon...

Thank you all for your continued prayers. Each step brings us a bit closer to bringing home our sweet boy!

Three weeks old today...

Where has the time gone?! Isaac is three weeks old today & its amazing how much has happened since arriving in Chapel Hill on February 25th. His incisions from surgery continue to heal well & it looks as though the scar will be very thin & small. Dr. Mill & his incredible team certainly did a fantastic job!

Extubation was attempted yesterday. Praise the Lord - Isaac's diaphragm worked correctly during the process, pulling air in on his own! What an answer to prayer! During the procedure, a bronchoscopy was performed. A small camera was passed down his throat & windpipe to look at everything from his mouth down to his lungs. Most everything looked great - no scarring & minimal edema in his lungs. However, Isaac's left vocal chord did not function when breathing & his pharynx was collapsed & swollen. So the breathing tube was left in for now with a second attempt at extubation to be performed on Monday. Sometimes these two situations resolve themselves over time. Sometimes they do not. We just have to wait & see how things progress in the days ahead. Please pray for this as extubation pends on the function & correction of these two problems. Pray that his left vocal chord becomes active again & his pharynx elevates once more.

As you remember, Isaac had another central line put in on Monday as his other IV access lines had become inactive. He also had a line put in his right foot. He has been receiving all needed medications & blood draws through these lines. Last night, his central line began to leak. This morning, doctors attempted to thread a new line into this access port over a wire in hopes of remedying the situation. However, a clot has developed & thus the new line was not able to function. Also, the line in Isaac's foot has become inactive as well. Dr. Joyner & his team are currently trying to establish another point of access on Isaac so that he can continue to receive all necessary meds. One possible new site has already been attempted & failed. They are currently trying another option. Should this not work, Isaac will most likely need to undergo a surgical procedure to gain needed access.

Please pray that this attempt is successful. Being an infant, his veins & arteries are so small, making this process incredibly difficult. To be continued...

Isaac experienced some difficulties today. He had been holding steady through the morning. So steady in fact that our nurse allowed us to hold our boy! Its been two weeks since we'd held him in our arms, so we were beyond thrilled! However, he did not handle this transition well & his oxygen saturation levels dropped quickly to 40-50% within minutes. Our nurse gently moved him back to bed in hopes of stabilizing him. He kept us all on our toes as his sat levels continued to fluctuate. They were finally able to elevate his sat levels to the desired point by paralyzing him temporarily through medication & adjusting his ventilator settings. By paralyzing him for a short time, they were able to keep his body from fighting the ventilator & stabilize. For the most part, his levels have shown improvement over the past several hours, though they fluctuate from time to time. Extubation is now up in the air with these recent developments. Doctors will perform a bag test & echo on his diaphragm tomorrow morning at 9a to determine whether extubation is even an option at this point.

Our prayer through tonight is that Isaac's sat levels will improve & hold steady. Extubation is his greatest hurdle at this point, to be followed by weaning from certain medications & the successful establishment of feeding. Please pray:: for stability of Isaac's levels & strength as he learns to breathe on his own; for continued wisdom for the doctors in assessing & treating problems as they arise; for strength & peace for us as we meet each unexpected hurdle. God has been & continues to be faithful as we walk this journey. We've been so grateful for the care He has provided our son through the nurses & doctors here at UNC. We could not ask for more.

So 9a tomorrow, please be in prayer for our boy as he undergoes the bag test. Hopefully, we'll be able to proceed with extubation. We'll keep you posted! Now some pictures for you to enjoy :)




Isaac showing off his muscles. What a stud!

Status Update...

Today has been a great day for the most part. Isaac continues to hold steady as they've weaned him off the Dopamine (blood pressure medication) & have decreased his ventilator settings to strengthen his lungs. One glitch has occurred with his bowel as he's spit up several times today. They've taken X-rays to determine the cause for this. After extubation, the greatest hurdle towards discharge from the hospital is the ability to feed on his own, so please pray that this stomach issue resolves itself. They've halted feeding of breastmilk via the NG tube until the cause of these nausea spells can be determined. Other than that, Isaac's doing great! Hopefully, he'll be extubated tomorrow. So continue to pray for his diaphragm issue & now his stomach as well. Thanks!

As for pictures:: I'm experiencing some technical difficulties w/the server as far as uploading pics to the blog. I'll have plenty for you once I'm able to upload again. :)

Next Steps...

The sun is shining amidst a Carolina Blue sky here in Chapel Hill. Isaac & I have enjoyed a wonderful morning, listening to worship albums by Lincoln Brewster & Hillsong United. Bringing a bit of C3 to our room here at the PICU. :) The days are slow & steady as Isaac makes progress towards recovery. At times, I find myself impatient, wanting to hold him now & bring him home. But it is in those times of waiting & bringing my tears before the Lord that He provides just the strength needed to make it through. Its a day by day process. Psalm 16.8-10 reminded me of His promises this morning: "I have set the Lord always before me. Because He is at my right hand, I will not be shaken. Therefore my heart is glad & my tongue rejoices; my body will also rest secure because you will not abandon me to the grave." The Lord continues to remain faithful & true to His Word. Jordan continues to provide strength & peace for our family when fatigue & emotions wear me down. He has been amazing through this whole journey & I praise the Lord every day for blessing me with such a remarkable man for my husband & loving father to Isaac.

Here's where we are in Isaac's recovery::
At this point, they've been able to pull him off of the blood pressure medication as he's holding steady on his own. He is no longer third spacing his fluids & has been able to get rid of a good deal of fluid. He still needs to dry out a bit more so that his lungs aren't wet for extubation. They're in the process of weaning him from the ventilator, slowly decreasing the rate at which air is being pushed into the lungs to teach his diaphragm to pull it in on its own.

How to pray::
The most crucial areas at this point concern his diaphragm & ability to get off the ventilator. He's been intubated since birth, so his lungs have not yet needed to do the work fully on their own. As mentioned before, he has an eventration (doming) of his diaphragm, making it difficult for him to pull down full on his own to bring in deep breaths. The severity of this condition is still undetermined & will remain so while on the ventilator. The last echo done on his diaphragm did not show as severe an eventration as we thought, however this is inconclusive as air was still being pushed into the lungs by the ventilator. Some good news though - when they took him off the vent system briefly, he responded by moving his diaphragm a bit on his own.

So please continue to pray for healing of this eventration & strength for Isaac as he learns to breathe on his own. This is a major hurdle towards being able to bring him home. The goal at this point is to extubate within the next 48-72 hrs is everything remains steady. Once extubated, we'll be able to fully assess his diaphragms condition. Also, pray his blood pressure remains steady without assistance from the Dopamine. These are the major hurdles at this point. Thank you for your prayers!

Central line successful

The doctors were able to successfully put a central line in place for Isaac. They will now be able to administer necessary meds, draw blood, etc, more efficiently as well as remove the previous femoral line & reduce that risk of infection. Thank you for your prayers. Our boy is doing well & sleeping peacefully. What a blessing...

Last attempt before surgical procedure...

Right now, the PICU doctors are making one last attempt to get a femoral line into Isaac on the last remaining access point. Please pray this is successful!! They will need to do a "cut down" if this attempt does not work, where they surgically cut to gain visual access of a central line & then thread the catheter through that port. We hope that this is not deemed necessary, but all that depends on this final femoral line attempt. So please join us in prayer for Isaac. We'll know whether it was successful within the next hour or so.

Genetics Results & Prayer Requests

The reports have come in for Isaac's genetics labs, both the FISH test & full chromosomal work-up. It's official...everything came back NORMAL!!!!! No DiGeorge, no deletions, no duplications, no problems whatsoever! Hearing the news, we felt as though a huge burden had been lifted from our shoulders that we weren't even aware was there. God had given us peace through the waiting & now we can rejoice in the knowing that everything's fine. Thank you, Lord, for your faithfulness. How true You are to Your Word, giving peace amidst the raging sea through the long night, waiting for the shoreline to appear. No matter how dark the storm, the sun's warmth will always shine through in the end. Praise be to our God for this good report!



Prayer Requests::
Isaac is in need of a new PIC line, a catheter port that goes to the heart through which meds & nutrition can be supplied. His first PIC line became infected just prior to surgery, so use of arterial lines & a femoral line in his hip have been used since surgery. His femoral line is now leaking, this being his second line at the site. His former arterial line needed to be removed due to the development of a leak/clot. They have made multiple attempts to put in new arterial lines & a PIC line, so that he can continue receiving the necessary meds & feeds. However, due to his size & fragility, all attempts thus far have not succeeded. A collection of pricks & bruises are all he has to show for these attempts so far.

Our sweet boy needs this PIC line severely - to have adequate access to administer meds, draw blood, give nutrition & to remove the exisitng femoral line which is failing & at high risk of infection due to the length of time which it has been in place. Please pray that the next attempt will be successful. Our next option should they fail again is to surgically create access for a PIC line, which would require more stitches. So please pray that God would open access for this line to be put in successfully.

Jehovah Jireh::The Lord will Provide

Since learning of Isaac's heart condition at 20 weeks of pregnancy, our minds have raced with a million questions. Our faith has been stretched & grown immensely as we've trusted so much in God's hands, waiting to see what He had in store. Isaac's HLHS requires three open-heart surgeries in order to survive with extensive stays in the ICU with each round. Needless to say, the medical bills for such care & procedures surpass anything we ever imagined we'd be asked to carry. Anxiety often looms at the door, seeking to cause worry & desperation as we had no idea how we would afford this large sum. Just as in the Genesis 22 account, we had no idea where the lamb for the offering would come from. We certainly did not have it! All we could do was place that burden in God's hands, remembering His name - Jehovah Jireh - the Lord will provide.

Last night, our church, Cleveland Community Church (C3), had its First Wednesday service. Held on the first Wednesday of every month, we have extended worship, baptisms, communion, & dynamic teaching from Pastor Matt Fry. The service is always one of the major highlights of each month. As Minister of Music & Communications, Jordan leads the worship band & serves as one of the worship leaders for our church. With Isaac's recovery going smoothly so far, he was able to play & lead in last night's service. The night was powerful with over 700 people in attendance & passion for Jesus filling the worship center. Neither of us had been at C3 since Isaac's birth, so the evening was incredibly refreshing for him. Towards the end of service, Pastor Matt & Martha called Jordan to the front of the stage. They gave an update on Isaac's status - the first surgery had gone well with two more to follow. What happened next caught us by complete surprise & will fill us with overwhelming emotion at it remembrance for the rest of our lives. Pastor Matt announced that they desired to take up a spontaneous love offering for us!!! Adequate words do not exist to express our sheer amazement & deep gratitude to our church for their generosity & to our great God for His provision. As Jordan recounted to me later, he was in total shock & completely overwhelmed with our church's love for us & our sweet son whom they've not even met yet!

After the service, several people gave Jordan cards containing financial gifts & Ken Stephenson, our Executive Pastor & dear friend, presented Jordan with the love offering check. This offering far surpassed anything we could have even imagined! God is truly amazing... In totaling the love offering with the other gifts we've received from the staff & other church members, we were brought to tears with what we found. Before Isaac was born, we were given a cost quote of what the surgeries would cost us after insurance and the number was quite great to say the least.

After the tithe, the total of these gifts will completely cover the quoted amount of Isaac's medical bills!!!!!

God is our Jehovah Jireh! He does provide! We had not told anyone what this cost for Isaac's surgeries would be other than the Lord & He worked through His church to provide for this huge need! All we could do was cry & praise God for His faithfulness & love. How can we ever thank Him & everyone involved in providing for our son?! Even now, we are moved to the point of tears in knowing how deeply Isaac is loved. Just as Abraham did not know where the offering would come from in Genesis 22, so we did not know where the provision of Isaac's surgeries would come from. God is the Alpha & Omega. He is the same yesterday, today, & forever. The same God who spared Abraham's son by providing the ram is also the God who spared our son by providing the means for these necessary surgeries! Lord, You are good & Your mercy endures forever!

Thank you, C3, for your faithfulness to the Lord & your obedience to His call. He has used you to help save the life of a sweet little boy & to minister in deep ways to his parents. We are so honored to be part of this great journey with you & to serve our Lord together! For those of you who are not familiar with this life-giving church, please check it out! www.c3church.org.

C3, we love you all & can't imagine being anywhere else than beside you serving our great God! And again, with the deepest sincerity, thank you. Your faithfulness & compassion has touched our family forever!

Closure went well...

Dr. Mill just came to Jordan & I to report the chest closure went as well as expected! They're cleaning up our sweet boy now & then we'll be able to see him again. He was awake this morning before surgery, so we had a great time watching his eyes explore the room. So praise be to our God for the continued good reports thus far! He truly as been gracious to us & each day, we find ourselves thanking Him over & again for the amazing blessing of this little boy. What a gift to have another day with this precious child of His!

The next 24 hours are most critical as his heart adjusts to the change in pressure from having his ribcage closed around it once again. The plan from there is to continue administering diuretics to reduce remaining edema & then work on getting him off the ventilator, at which point the diaphragm issue takes center stage of attention.

So let's praise our great God for His love & faithfulness to Isaac! Praise Him for all He has done, for the success of this surgery & his steady recovery thus far. Please pray against infection, that his body would adapt to these new changes well, & for healing of his diaphragm so he can breathe on his own. Thank you again for your many prayers! It truly is awe inspiring to see the Body of Christ coming together to support this precious child & go to battle on his behalf. Thank you! Jordan & I are forever humbled & grateful for you all.

Chest closure set for 8 am tomorrow!

It's official: Isaac's chest will be closed up tomorrow morning at 8a! Everyone has commented on how well he is recovering from the Norwood, with one nurse saying he is the perfect Norwood case. God certainly has His hand on our boy! Even the doctors & nurses are taking note of it. To God be the glory for the great things He has done & continues to do!!! If everything continues to go smoothly & no further complications arise, we may be able to bring our boy home in the next 2-3 weeks! What a joy that would be!

Dr. Mill is thrilled with Isaac's progress. The O.R. was slammed with multiple surgeries today & would not have been able to see Isaac until 5 or 6 tonight. Wanting to have his "A" Team fully rested & present, he has decided to schedule the closure for first thing tomorrow morning. The procedure will occur in Isaac's PICU room & will take approximately 2.5 hours. We have been truly touched by Dr. Mill's genuine compassion & care for our son, wanting the very best for him. What a blessing! We praise God for bringing Dr. Mill into our lives & care for Isaac. We could not hope for more in the surgeon for our son.

I'm so grateful for the Lord's peace through this process. While watching his ventilator tape getting refreshed, I was overwhelmed with the desire to hold Isaac & be able to take him home. This certainly is a race of perseverance. How true God's Word is - that He will go with us through the fire & never give us more than we can bear. His Holy Spirit remains faithful to bring truth from Scripture to our minds when we need it most. What a friend we have in Jesus. In this world, we will have trouble. But we need not fear! He has overcome the world! (John 16.33)

Thank you all for your prayers on our behalf, for your reminders of the truth of Scripture, & for your friendship. Our family has truly been blessed by you all!

8 days old

It's a beautiful morning here in Chapel Hill & our sweet boy is more handsome than ever! He had several moments of moving his precious arms around & opening his eyes for a bit. With each passing day, we see more of the sweet baby side of him. He was so swollen after surgery from all the necessary medications, bless his heart. Our own little cream puff! He has responded well to the Lasix & has gone from resembling the Michelin Man to looking like our baby boy again. Last night, Dr. Carboneta came by to check on Isaac, reporting that he is progressing in recovery better than they anticipated. Early this morning, Dr. Mill's nurse, Carla, did a squeeze test on Isaac to help determine when he'll be ready for closure of the chest cavity. This test involves squeezing the ribcage back together & watching his levels for fluctuation, such as blood pressure, heart rate, oxygen saturations, etc. She said he did very well! Dr. Mill will be by later today to assess Isaac himself & determine when they will perform the closing surgery. At this point, they're anticipating tomorrow morning! Our prayer is that Isaac continues to hold steady & Dr. Mill is able to close him up in the morning. A lot can occur between now & then, so please pray!

We still have not heard back from genetics, but did receive some promising news this afternoon. The major concern at birth was the presence of DiGeorge syndrome due to the combination of heart defect, excess neck skin, cleft palate, lower ears (& one malformed). One element consistent with DiGeorge is the underdevelopment or complete lack of the thymus, a organ crucial in immune system fuction & development. During the course of his surgery, Dr. Mill would have needed to move this organ had it been in place to get to Isaac's heart. Carla reported to us this morning that a fully developed thymus was in place during time of surgery! This information is very promising! Praise God! Continue to pray as we wait for the genetics labs to come back, but thank the Lord for this bright ray of hope regarding DiGeorge! With each passing day, our sweet boy looks healthier & more resilient. God is working in our Isaac!

So at this point, the major concerns remain his chest closure, diaphragm, genetics results, & hearing. His left ear appears to have no opening to the canal. Once Isaac is excubated, they can test his hearing. So please pray our boy has the ability to hear!

Jordan & I are doing well. Since Isaac made it through the first 48 hours post-op successfully, we finally had the peace of mind to sleep at the Ronald McDonald House last night instead of staying through the night at the hospital. Rest certainly does the body good! Though this has been a trying week, we've grown closer in friendship & as husband & wife. What a sweet time together it has been.

So overall, things are looking up! Other than losing my new camera, the three Leinos are doing incredibly well. We don't know how to adequately express all our gratitude for all of you, for your prayers & encouragement through this part of the journey. We look forward to one day showing our sweet boy the hundreds of prayers, cards, & notes that were sent on his behalf. What does God have in store for this precious child of His?!



Prayer Requests:
1::Chest closing - no complications, good blood pressure, minimal swelling, lung strength
2::Diaphragm - healing of eventration, ability to breathe on his own
3::Genetics - a clear, good report with no defects or abnormalities
4::Hearing - ability to hear

32 hours & holding steady...

It has been 32 hours since Isaac came out of surgery & so far, he's holding steady. With each lab, his levels are showing to be coming down to their desired ranges nicely. His lactate has gone from 7.6 to 2.68 since yesterday which is awesome! His blood pressure has had some elevations from time to time, but the nurses have been able to successfully level it each time. Dr. Mill has called several times today on his day off to check on our boy & is pleased with his status at this point.

Thank you all for your prayers! It is evident that God's hand is on our sweet boy as he slowly progresses towards recovery. Yesterday, Dr. Valley said it was the smoothest Norwood/Sano Procedure he'd ever been a part of. Praise be to our God! We've been humbled by the overwhelming amount of prayer & encouragement we've received from so many across the globe - some whom we've never met, but in Christ we are family. How awesome it is to see the Body of Christ at work!

Closing Isaac's chest is the next big hurdle. Due to swelling from surgery, his ribcage is still open at this point & the heart exposed. Beginning Monday, Dr. Mill will start assessing when to close the chest, though there is no telling when this will actually be done due to swelling & blood pressure. Once his chest is closed & his levels stable, we can begin assessing his diaphragm. So several hurdles lay ahead.

Please pray for our boy, that his body continues to embrace the surgery. Pray for protection from infections & clotting. Pray for supernatural healing on his diaphragm. Pray for a clear report from genetics, indicating no defects or abnormalities. And pray for Jordan & I as we're here at UNC - that we would be a light to all who care for our son & who also stay at the Ronald McDonald house. Already, there are a few doctors & nurses who stop by our room in the PICU just to check up on Isaac & visit with us. God is using this situation to share hope with others...to Him be the glory! Let's continue to go before our Maker through this journey. He has great things in store. What a privledge to be a part of His plan!


Here are some pictures from the past week. Enjoy!

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

Isaac has made it through the surgery! Dr. Mill just came back to tell us that everything went as expected & the operation was a success. There were no surprises in the O.R. & as Dr. Valley (the anesthesiologist) said, considering the severity of this operation, Isaac tolerated it extremely well. PRAISE GOD FOR HIS STRENGTH & FAITHFULNESS!!

The next 24 hours are extremely critical as anything can happen! We're out of the O.R., but we're not in the clear yet. Please continue to pray as this next phase is just as risky as being on the table. Pray for healing. Pray for protection against infection. Pray that all of Isaac's levels remain steady & strong. Pray for wisdom with the nurses caring for him. Pray for supernatural comfort for Isaac as his body begins to heal. Pray for a miracle with his diaphragm. Pray the genetics labs come back clear. Pray for our sweet boy!

2:18p & still waiting...

Thank you all for praying for our sweet Isaac today. God has provided tremendous peace for us this morning. Even in the n nerves of wondering when he'll come out & how the surgery is going, God has set a hedge of protection around us from fear, anxiety & despair. He is FAITHFUL!! The hymns "Great is Thy Faithfulness" & "I Surrender All" were our anthems this morning during our last moments with our sweet boy before going into surgery. He's still in the O.R. at this point. Here are some pics from this morning. What a blessing - he opened his eyes for us for the first time & looked right at Jordan & I before he went in!!!

Open-heart surgery is tomorrow - Friday, March 2...PLEASE PRAY!!!!!

This is our sweet boy, Isaac! You can see how precious he is & how much is needed to keep him alive right now.


Here is his room at the PICU of UNC Childrens Hospital.


Much has occurred since our last post. Jordan & I met with Dr. Mill & part of his team yesterday to discuss the full details of tomorrow's surgery, as well as clarify the diaphragm condition. Isaac has an eventration (raising & thinning) of the central tendon of his diaphragm. This means he's not able to pull down deep breaths on his own. There is a test that can be done to measure the severity of this, but with his weak condition & impending surgery, they've decided to wait until recovery to address the diaphragm issue. Two possible treatment options should he need it are to placate the diaphragm, which means to stitch it down so that the whole functions more properly - this is done on small eventrations. The other is to put in a tracheotomy for an unclarified amount of time. All that said, his diaphragm condition does not jeopardize surgery. It does however decrease the overall success rate from 70-75% to 50-60%. So please pray! God can do miracles & we're asking him to correct the eventration of Isaac's diaphragm.

Today has held many bumps in the road. Isaac has had several episodes of hypoglycemia, as well as surges in lactic acid (indicating his body is working overtime to function) & random, severe drops in his oxygen saturations. Labs have been drawn throughout the day to try & clarify what is going on, but so far it remains unknown. Doctors are trying to determine this cause - whether infection or change in the heart or something else. Please pray as proceeding with surgery tomorrow pends on what is causing these influctions. It has been scary at times, not knowing the root of these changes. Jordan & I keep reminding ourselves that nothing is a mystery to God & when we walk through the fire, He IS THERE with us!

Isaac goes in to surgery at 7am. The operation will take 5-6 hours if there are no complications. Once he is under anesthesia, all necessary additional lines put in, he will be opened & put on full heart & lung bypass. Once his body temp has cooled to the designated temperature, Dr. Mill will proceed with the Norwood Procedure (see previous blogs for details). At the end of the operation, he will decide whether to close Isaac's chest then or wait a few days for swelling to go down. If the ribcage is closed prematurely, pressure from the swelling will compress the heart, causing failure. Finally, he'll be cleaned up & sent to recovery. The first 48 hours is the most critical, allowing only for parental visitation during this time.

This is a huge surgery! Please be in prayer for our sweet boy! It seems today as though he is under attack, with so many random things coming against him & trying to compromise this life-saving surgery. But we rest in the knowing that all of Isaac's days were ordained for him before there was yet one! (Psalm 139) He is fearfully & WONDERFULLY made! GOD knit him together in my womb & His plans for Isaac are good, for a hope & a future, filled with blessings & not cursings. (Jeremiah 29.11) Who can know the mind of God & who can understand His thoughts? For His ways are HIGHER than our ways & His thoughts HIGHER than our thoughts! (Isaiah 55) In You, O Lord, do we lift up our souls & in You do we trust - our selves & our sweet boy in your Hands. No one whose hope is in You will EVER be put to shame. ALL the ways of the Lord are loving & faithful for those who keep His covenants. (Psalm 25) The Lord is our light & our salvation; whom shall we fear? The Lord is the stronghold of our lives; of whom should we be afraid? We are confident in this - that we will see the GOODNESS of the Lord in the land of the living! (Psalm 27) For we are convinced that neither death nor life, neither angels nor demons, neither the present nor the future nor any powers, neither height nor depth nor anything else in all creation will EVER be able to separate us from the love of Christ! (Romans 8)

No matter what tomorrow brings, God is in control! He has ordained Isaac's days & holds him in perfect keeping the mighty palm of His hand. We will lift our eyes to the hills for there our help comes; it comes from the Lord who made heaven & earth. God, You are in control! While fear & death loom around the corner, our eyes remain fixed on You. You have created Isaac with a purpose & just as Abraham laid his son at Your feet, we lay our son before You - trusting that You will provide!

PRAY!!!!!!