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!

Rockstar!

Sportin' the mohawk. Yup. It's official. Isaac Leino is a stud!

Quick Update

Today has been quite busy, so this update will be brief. Thank you all for lifting up our boy in prayer each day. God is faithful & continues to work in our sweet boy's life, even when the medical status seems confusing or contradictory. And while the roller coaster of this journey may be exhausting at times, we remain confident that He has a good purpose for all of this & goes with us through every step. Remember Isaiah 43.2: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the LORD, your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you."

Isaac's left lung is open once again! With the combined efforts of his nurses & respiratory therapist, a large mucus plug was displaced & removed this afternoon. The bronchoscopy removed the remaining plugs, allowing his lung to fill with air once more. Thank you, Lord! What a blessing to hear some good news.

His Broviac line had to be removed today due to a leak. Early in the morning, it began leaking fluid & bleeding from the entrance site. Luckily, the doctors were able to place a subclavian line successfully without problems so the flow of meds did not experience long interruption. Isaac is also demonstrating some clotting difficulties, so the chest tube to drain fluid form the abdomen has been delayed. Lactate continues to flux between 4 & 8. Doctors are still trying to determine the cause for this.

That's all for now. Our sweet boy is resting peacefully now, with hopefully an uneventful night ahead.

CT Results & A Collapsed Lung

The results from the CT scan are in: Isaac's GI tract is looking great w/no signs of eschemia or necrosis. There is a large amount of fluid being third spaced to surround his gut, though we're not sure why. His spleen showed some signs of eschemia which we already knew of & does not pose any problems at this time. So good news that Isaac's gut is healthy, but no further answers as to what is causing his continued lactate flux cycle. While we're thrilled that his lactate is no longer in double digits, 7 is still very high as normal ranges between 0 & 1.2. So the search continues.

During Isaac's morning X-ray, they checked his lungs to discover that his left lung has collapsed. This may be the result of accumulated mucus plugs within the lung, though we're not certain. Some non-invasive therapy will be done through tomorrow in hopes of opening his lung back up. If not, they will do a bronchoscopy tomorrow to image what is closing his lung & remove the problem.

Another concern for tomorrow is IV access. Isaac's only access port right now is the Broviac line. Due to the meds needed at this time, he will need another IV port put in place. However, this may be difficult as several access points are no longer patent. So please pray that they are able to successfully find access within the next few days.

Another day down, many more to go. Rest well, sweet Isaac. You've got a big day tomorrow...

CT scan a go!

Isaac had another stable night, getting much needed, peaceful rest. This morning, the medical team thought him ready for another go at the oral contrast necessary for a CT scan. So far, Isaac has shown tolerance to both the oral & IV contrast. The plan is to give him large amounts of fluid so that he can pee off the contrast before it affects his kidneys too much. He has already come back from the scan & now we are waiting for the results from radiology. Hopefully, this will provide the answers we've been looking for. His lactate is up a bit this morning. Also, Isaac has been retaining fluid around his lungs. This afternoon, they will surgically put a drainage tube in place to relieve this fluid pressure.

Once we hear the results of the CT scan, we will let you know. Thank you all for your continued prayers & support for our sweet boy. Let's pray that we find some answers this afternoon!

Thank you all for joining us in prayer & fasting for our sweet boy yesterday. For the first time in a long while, no new problems arose yesterday! Still critically stable, Isaac was able to rest without too many interuptions & was very interactive during his awake moments. He loves to reach his left arm up & grasp the air with his precious hand. He has quite a strong grip! He slept well through the night with no complications & has been quite relaxed so far today. Several people who cared for him through the weekend's difficult events were back today, all thrilled & amazed to see Isaac still here. We've been so fortunate to not only have excellent medical care for our sweet boy here at UNC, but to have developed friendships with those who have cared for him. We remain deeply grateful for the care & compassion they have demonstrated towards our son.

At this point, our greatest concerns remain with Isaac's gut issues. After two sonograms, we're still unable to tell if eschemia or necrosis has occurred in the bowel. He continues to retain fluid around his belly for unknown reasons. Two options for figuring out what is truly happening in his gut are a CT scan or exploratory surgery. The CT scan is the prefered route. However, the medical team has concerns for Isaac's kidney tolerance for the oral & IV contrast necessary for the scan to be effective.

Isaac remains the enigma of the PICU. Our prayer is for the fluid surrounding his belly to go down & for a successful CT scan. We are so grateful for each day with our sweet boy. God has truly blessed us more than we could have fathomed through this journey. How faithful He is!

Day of Prayer & Fasting

Good morning from Chapel Hill! Our sweet boy has made it through another night & has been wide awake this morning, taking everything in through his beautiful blue eyes. Jordan & I both were able to hold him last night for several hours. What a joy to hold your child & in spite of his severe sickness, see him resting peacefully in your arms. For a moment, he can simply be a child without a care in the world. How we love this sweet boy!

Isaac held steady last night, lactate down to 5. But for unknown reasons, this began to climb again, rising to 13.1 in only 6 hours. However, his pH & CO2 levels have not experienced serious flux. Once again, a curve ball has come our way. The medical team will keep a close watch on his lactate today. They've ordered a repeat abdominal sonogram today in hopes of gaining a better understanding of what's going on with his gut. Also, Isaac's blood sugars continue to be elevated.

We would like to ask all who are able, to join us in praying and fasting on Isaac's behalf today. We so appreciate all the prayers being lifted up for him.

3:00p Update

We got the next blood gas report back and it revealed a couple things. His lactate went down from 12 to 6. The fact that it has come down can mean one of two things. It is either a positive result of taking him off the medication Dopamine, or it is a negative result of his bowels dying, thus not being able to produce as much lactate. We just got another test back that showed there was some blood in his stool, which causes us to lean toward the negative finding in the lactate.

His CO2 is up a little bit in his blood, causing it to be more acidic. This was the problem we were facing Wednesday, but not quite as severe as before. His pH was normal again.

It's never too late for God to do a miracle! We know that God has the power to do miraculous healings, and we also know He has a plan for Isaac. So if God chooses to heal Isaac physically, this will be an amazing story for the world to see, of His power and love. If God chooses to heal Isaac by taking him to heaven, this will be also be an amazing story for the world to see, of how He used a little baby to change the hearts of people around the world towards our Savior Jesus Christ!

Still Fighting

Well Isaac continues to baffle the minds of the doctors. For the second time this week, we did not expect him to live through the night, and yet again he is still here. Earlier this morning we got a blood gas report that gave us some better news. His lactate level went from 19 to 12, which is still extremely high (should be between 0-1.2), but it is an improvement. His pH is within the normal range and he is peeing off a lot of fluid, so he looks much better in appearance.

The doctors do not have any definitive answers as to what caused the issues yesterday or last night or his improvement this morning, but we do know he is still very sick and has a long fight in front of him if he is able to live through it all. At this point, we are waiting to get the next blood gas report back to see if we are still moving in the right direction or not.

Patience and I are just taking everything one step at a time. The emotional roller coaster we're on is exhausting, since we never really know what the next minute will bring. Not to mention the exhausting all-nighters we've been pulling this week.

We continue to praise God in the good reports and bad reports, trusting Him with the outcome.

3:45p Update

Lactate now 18. CT scan determined too risky so they are doing a sonogram on Isaac's abdomen right now. Extremities beginning to grow cold from poor circulation.

Jordan & I have the instrumental hymns album playing. Piano, cello, violin. Songs of our great God that we played at our wedding. We now play them to comfort our sweet boy & keep us grounded on the truth we know. It is well with our souls.

2:40p Update

Lactate is soaring, now at 15 & climbing. His oxygen sats are in the 90s, so his lungs are stealing his blood from other organs & extremities.

The only hope for our sweet boy is for a divine miraculous intervention from God.

5 weeks old

In many ways, I don't know what to say other than to ask for fervent prayer. Isaac has shown signs of decline through the night. His lactate levels are dangerously high & we can't figure out why. A CT scan has been ordered for his GI & bowel to see if they are dying. This morning's X-Ray showed lack of gas exchange through the bowel, but we'll have more specific answers w/the scan. However, this is difficult w/Isaac's dependance on a ventilator or bag to breathe, which also brings in concerns of balancing CO2 levels with oxygen saturation. He is also showing worse signs of modeling, patchy discoloration of the skin resulting from poor circulation & severe edema over several days. He's lost another IV access as the port in his foot stopped functioning this morning.

Our sweet boy is so very sick. Please pray for healing & wisdom, but above all, for God's will to be done & for comfort for Isaac. There's not much left to say at this point as all we can do now is pray & wait.

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