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.